New diseases are pretty rare these days. It used to be that a good observer could travel to the great unknown and acquire/discribe scads of new (to them) diseases. In the interconnected world of the present, “new” diseases spread rather quickly, and become old. When I was a young attending physician, I had heard of West Nile Fever from small chapters in medical school books. When I took over an inpatient medical service in the summer of 2002, I was taking care of several patients with the disease. It was new to me, but hardly new. Sometimes I wonder if people miss the great days of disease discovery, and try to make up for it by inventing their own diseases.
Here at denialism blog we’ve occassionally written about “fake diseases”, that is, diseases that are not recognized by science-based medice, have no clear definitions, and attract quackery. One of these diseases is Morgellons syndrome, an ill-defined malady recognized by no one other than patient advocacy groups and their stooges. Another plays on a real disease, but tries to stretch that disease’s definition to include just about any symptom you could imagine.
Chronic Lyme disease is the name given by a diverse group of patients and physicians who have in common a belief that a relatively common disease can continue to cause debility long after the disease is gone. The disease in question is Lyme disease, a tick-borne bacterial infection common in the Northeast U.S., and in scattered other parts of the country.
Since Lyme disease was first described in the U.S. in the latter part of the 20th century it has fascinated doctors and researchers. The ecology of the organism, its dependence on ex-urbanization, and it’s unique symptoms are very interesting. Combine that with how common it has become in a densly populated part of the country, and this disease is a winner.
The rash is quite characteristic, having a particular bullseye pattern. In endemic areas, this is virtually diagnostic of the infection. It also can cause an unusual arthritis, and if untreated, the disease can cause recurrent joint, neurologic, and cardiac disease. Usually symptoms resolve spontaneously.
The ability of this disease to cause late symptoms has attracted quite a bit of quackery. Lyme disease used to be rather mysterious, but not so much anymore. Diverse sypmtoms that appear in a large percentage of the population, such as fatigue, memory problems, headaches, and depression, are sometimes attributed to “chronic Lyme disease”, and people are subjected to costly, dangerous, and unproven treatments.
Some of the more credulous ideas about this “disease” include the idea of “sero-negative Lyme disease”, meaning there is no evidence in the blood, but people are labelled with the disease anyway. Sometimes, blood is sent to renegade labs that run unapproved tests for the disease.
For ease of analysis, chronic Lyme patients are often divided into four groups (NEJM, Volume 357(14):1422-1430. October 4, 2007).
Group one is patient with protean symptoms and no evidence of infection. Group two is those who have real diseases misdiagnosed as Lyme. Groups 3 and 4 have evidence of actually having had Lyme infection in the past, but their symptoms aren’t necessarily consistent with actual Lyme infection.
The first two groups seem to attract the worst of the quacks—those that diagnose and treat patients for a disease for which there is no evidence. I have seen patients treated for months on end with intravenous antibiotics for no apparent reason, subjected to all the complications inherent in long-term invasive therapy.
What is interesting about fake diseases is that there are people out there suffering, but without a clear diagnosis (or sometimes with a clear diagnosis that they don’t accept). Advocacy groups form, and fringe doctors, scientists, and other fake experts are pulled into the vortex. These advocacy groups not only push for unproven, unsafe treatments, but actually threaten doctors who listen to science rather than some hostile internet message board. In fact, I can pretty much guarantee a visit from them here very soon.
It’s a real problem, for doctors and for patients. Patients with real pain end up enriching doctors who practice questionable medicine. For patients, it’s a lose-lose scenario. But they love their charismatic leaders, and that bond it tough to break.
Comments
216 responses to “Fake diseases, part deux–chronic Lyme disease”
Odd that you should post this now. Yesterday we took our 9 year old son to his doctor thinking he might have lyme disease. He had been camping, tick was found on his body, and he had what to me looked like a circular bulls eye rash on his back. The diagnosis ended up being ring worm.
How does ringworm affect NO levels?
There’s an interesting 2002 article by L.H. Segal and A.L. Hassett on the psychopathogenesis of chronic Lyme disease (Environmental Health Perspectives 110, 607-611, free download from EHP). In the US, it seems that many people are unwilling to accept a psychological explanation for symptoms like pain, fatigue, and malaise, and so will grasp at a syndrome that involves infectious agents or environmental toxins. Of course the suffering is very real to the patient, regardless of the cause. Even in a wealthy country like the US, the pressures of society and everyday life can be very stressful, and there’s no question that stress has detrimental effects on health and cognitive function.
I have several friends, and a close relative, with multiple sclerosis, and I’ve witnessed the suspicious looks and occasional verbal abuse/questioning when their handicapped parking privileges are challenged (for example). People with MS (as well as people with SLE, or rheumatoid arthritis, and probably several other chronic illnesses that have some very clear diagnostic criteria) often have cyclic symptoms, and may not “look disabled”. I worry that quackery associated with the current crop of “medically unexplained symptoms” will only exacerbate this amateur phenomenon of questioning the degree of disability.
Thanks for the post! I look forward to deadalus’ explanation of how this is related to NO levels.
I actually know someone who got West Nile from a dead bird she picked up in Ornithology class.
I think what Barn Owl said is true, many people are unwilling to accept psychological explanations for symptoms, especially with the stigma that still exists about many psychological disorders and the feeling from society that “it’s all in your head” and so you should be able to get rid of it.
Is there a pill I can take for my wandering uterus?
HJ
I might have gotten my information incorrectly…but I heard that the rash only shows up in about half of cases? At least that’s what my prof who studied ticks in our area said…
The rash is not always present, but when it is it’s very helpful. In endemic areas, you have to maintain a high index of suspicion for the disease.
Thanks for the heads up. I recently saw a doctor who I had not visited for 20 years. I asked his wife how she was keeping and she said she had Lyme disease! I thought this seemed a bit unusual but not impossible. My suspicion (woo)-meter took a big jump after reading your post. She has been involved in everything New Age for the past 30 years and he has been as well to some extent.
The quacks will use any means necessary to get their money, ego fix, or whatever it is that motivates any particular one.
After 6 years on the wagon, my wife fell off. Yesterday she called me up and announced that our son doesn’t have Aspergers, he is cholesterol deficient. Damn, damn, damn. We did the fish oils. We went through the vitamins phase. We even went through the magic water phase. I thought she was over this, but she saw some article on some website…
Quacks are vultures that scavenge at the carcass of someone’s false hope.
OK, I’ll stay for a bit…
About fake diseases – any comments about something called Myers-Irlen syndrome (if I’ve remembered the spelling correctly) or scotopic sensitivity? I know two people at university who claim to have these – and as a result get, say, all their exams and handouts printed on coloured paper etc. Now, I’m sure they both do have strange symptoms and aren’t just making it up, but I’m also picking up a strong vibe of ‘attention-seeking drama queen’ from them…
Ringworm is a skin infection caused by a number of different fungal species. Acidified nitrite is quite effective at killing it and produces complete cure even in infected nails.
http://www.ncbi.nlm.nih.gov/pubmed/17627796
On the skin, nitrite produces NO due to reduction by xanthine oxidoreductase in the skin, and also the low pH of the skin causes nitrite disproportionation. There are three recognized sources of nitrite on the skin. Nitrate is excreted in sweat, and skin bacteria can reduce that nitrate to nitrite. This has been describe in the literature. Nitrate is also excreted in saliva where it is concentrated about 10x over plasma levels. commensal bacteria on the tongue reduce this nitrate to nitrite. Following a high nitrate meal (such as 100 grams of lettuce which has about 0.25% nitrate (about 250 mg nitrate), levels of nitrate in saliva can exceed 2 mM/L and nitrite levels can get that high also. When the skin is licked, the nitrite in saliva causes the release of NO on the skin due to the reduction of nitrite to NO due to low pH and reducing equivalents in the skin. It has been suggested that this NO from nitrite in saliva is the reason why animals (and humans) lick wounds. The NO from the nitrite inhibits bacteria, especially the Clostridia which are responsible for gas gangrene and tetanus. It is my opinion that the common folk remedy for impotence, applying saliva to the penis also works because the nitrite in saliva forms NO, activates sGC and forms cGMP causing erections via the normal mechanism.
The third source of nitrite on the skin is the bacteria that I am working with. They oxidize ammonia in sweat into nitrite and also produce some NO directly. Their main product is nitrite. There is about 3 orders of magnitude more ammonia in sweat (as NH3 and urea) as there is nitrate, so ammonia oxidizing bacteria (AOB) would be a much more robust source.
When bacteria or fungi metabolize proteins, they deaminate the amino acids and release ammonia. The presence of bacteria that would convert this ammonia into NO/NOx would provide an inhibitory mechanism proportional to bacterial and fungal activity. When amino acids are deaminated the pH goes up due to the ammonia. Due to the pKa of fatty acids, this causes fatty acids to deprotonate and turn into soaps lowering the surface tension. As AOB oxidize the ammonia to NO/NOx the pH goes down, increasing the fluid surface tension. Sweat will then tend to wick toward regions of low pH, regions where AOB are most active.
Many bacteria use NO as a quorum sensing compound including Pseudomonas and Staphylococcus. At low NO levels they form a biofilm and express virulence factors and at high NO levels they become planktonic and biofilms disperse. This is the mechanism that many eukaryotes use to keep their surfaces free of surface biofilms and infections. I have found these bacteria on the surfaces of clams, oysters, lobster, earthworms, turtle as well as human. I suspect that influencing the quorum sensing and biofilm formation is why injections of LPS produce such a strong immune response. The body needs to get the NO level up high enough so that bacteria in the blood stream don’t form a biofilm in the vasculature. If they do form a biofilm you are SOL.
Suppressing biofilms via interfering with quorum sensing precludes the organism from evolving resistance because there is no selection pressure.
In the dark where all the fevers grow
Under the water where the shark bubbles blow
In the morning by yer radio
Do the walls close in to suffocate ya?
You ain’t got no friends and all the others, they hate ya?
Does the life you been livin’ gotta go?
Well, lemme straighten you out about a place I know
(Get yer shoes’n’socks on people,
It’s right around the corner!)
Out through the night and the whispering breezes
To the place where they keep the Imaginary Diseases…
–Frank Zappa
Heh…I wonder if these fake diseases show any kind of characteristic geographic pattern in their occurrence. Or if there’s a way, using that fancy epidemiological math, to show a difference between the spread of a real disease and a fake one?
Daedulus, you are one strange character. I don’t have a clue what 95% of what you are talking about, but there is one thing you said that I have to disagree with. When there is saliva applied to the penis, it isn’t NO that causes the erection, it’s YES.
No Bill, it is “yes” that causes NO that causes “YES! YES! YES! YES!”
http://www.ncbi.nlm.nih.gov/pubmed/18385679
Dr. Lipson writes with great authority on a topic he obviously knows very little about. To understand the real story behind chronic Lyme disease, and the corruption which has lead to the denial of chronic Lyme disease, please read the following article that I wrote last November:
“Attack of the Chronic Lyme Denialists”
http://www.myleftnutmeg.com/showDiary.do?diaryId=8493
Note that since that article was written, the Attorney General of CT concluded his investigation into the IDSA’s Lyme Disease Treatment Guidelines, which deny the existence of chronic Lyme disease. Multiple and serious conflicts of interest by the authors were found and the IDSA chose to settle the case rather than allow their corrupt behavior to be exposed in court. The settlement requires a complete review of the guidelines by a panel headed by a noted medical ethicist and free of conflicts of interest. More about that settlement can be learned here:
http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284
Hi, Niels! I was wondering where you were!
Am I the only one who sees the humor in a denialist/fantasist citing “myleftnutmeg.com” to support his delusions? My Left Nut… Meg.
Okay, it’s been a really long week. Today.
Hey, so the creator of the most popular left leaning blog in CT had a sense of humor. Have you read the article, or are you so arrogant that you prefer simply to smear and run.
See, the real fantasists are people with advanced degrees who think that just because they read something in NEJM that it must be true. They are the ones who are either willfully blind to the corruption that lies at the heart of our health care system, particularly at the core of Lyme disease research and associated peer review. Or perhaps they are simply the losers who graduated at the bottom of their class and lack the intelligence to differentiate between research that is baloney and research that is valid.
One thing I have learned in my 15+ years of dealing with chronic Lyme issues — many doctors in today’s health care system are so stressed and so pressed for time that they resent any patient whose symptoms do not conform to a neat little cookbook that renders a diagnosis and treatment plan possible in 10 minutes or less. I don’t blame the doctors as much for this as I do the system. What I blame the doctors for, however, is the knee-jerk reaction to then blame the patient for not conforming to that cookbook. It’s so much easier to dismiss someone as a psychiatric case than to actually put the time into determining what is wrong with them. Isn’t it?
In the world of reality, let me offer the below re Lyme diagnosis and chronic lyme.
The child described in a post who had been camping and had a “rash” but was diagnosed with ringworm reminds me of myself. I had been on a retreat in a woods setting, had a “rash” over the next weeks along with low grade flu like symptoms. The internal medicine doctor with a specialty in infectious illness dismissed my suggestion that it was Lyme Disease–he insisted that the lack of a positive blood test within two weeks of the bite proved it was not Lyme. I tendered the CDC website printout regarding the clinical diagnosis of Lyme at the early stages when the blood testing is not as reliable (see Johns Hopkins studies (Auwaerter et al.) “rash;fever” was the diagnosis. The physician failed to meet the standard of care for diagnozing early Lyme and despite three return visits as symptoms worsened over the next month, never seriously considered Lyme, despite the bite, rash, flu like symptoms, endemic area, and perfectly healthy before.
This is the continued response from Charles re Lyme diagnosis. A ten day emergency hospital stay with advanced Lyme meningitis confirmed by spinal tap and Western blot test followed the dismissal of possible early Lyme based on the rash and other clinical symptoms. Despite “adequate antibiotic therapy” a host of headaches, body pain, muscle twitches, muscle wasting, chemical sensitivity, light sensitivity and other issues followed over the next years. Nothing has returned to “normal.” All could have been avoided with a several week course of oral doxy at the first rash symptoms. I would urge “denialists” to have an open mind to reality. The persistence of the Borrelia Burdorferi spirochete in human tissues can be argued both ways. Science and medicine do not know the downstream effects on a human of a significant or mild Lyme infection. Those mechanisms have not been fully looked for or explored. Bottom line, the absence of fact is not the fact of absence, and true scientists respect that maxim.
I should make clear that Lyme disease is a REAL disease. That isn’t the issue here.
Dear Science and “Denialism”
I am awaiting the birth of my first grandchild. My amazing daughter has a well-paid position in a great company, a happy marriage, beautiful home and many friends and family who love her dearly. My pregnant daughter has one problem. She has this make-believe disease called chronic Lyme because according to many experts, she is:
1. crazy or
2. unknowing and has been drawn into a fad or
3. loves taking antibiotics that wreck her natural flora or
4. wants attention from doctors or
5. has suffered the normal expected physical trials of everyday life and not because she truly had a myriad of debilitating symptoms and has tested positive, highly positive for Lyme disease even after treatment.
Prior to becoming pregnant, she had finished a long term protocol of antibiotics. She was one of the lucky ones with chronic Lyme disease because she then found she could manage her symptoms without medicine. She suffered, but comparatively speaking, not as much as patients who can only survive with continual long term antibiotics – as we do see paralleled in the more uncommon cases with other diseases.
There is available information that Lyme can be transmitted to the unborn fetus. The complications are many, including death of the fetus. Since she has been on antibiotics for the entire 9 months, we feel reassured that all is well and this is also according to her ob-gyn who wanted information that we supplied, thanks to the help from people you call quacks. On a very good note, early in the pregnancy, when my daughter asked the ob-gyn if there was a concern with being on the antibiotics, the good doctor replied,
“Given your medical history, I’d be more concerned if you were not on these antibiotics.”
My unborn grandchild is protected to the best of all doctors’ abilities. I wish that all mothers had the same knowledge we have so that all our unborn children could have the same equal chance to survive.
Since you are calling this problem of chronic Lyme disease make-believe, I will counter with a thought: It is too bad that so many are adhering to the Flat Earth theories promoted by only 14 authors of the IDSA guidelines. Sadly, I believe they have amassed so much power that you are listening to them to the exclusion of any other information.
I know what my family needs. We are fine. I wish others would have the same chance.
In this problem of persistent Lyme we have the experience of witnessing all – from dead fetuses or babies with severe health problems born to women with known Lyme disease to healthy babies born to expectant Moms who have Lyme disease and follow the protocols our doctors developed because they have seen and helped thousands of Lyme patients.
Please consider that we advocate with passion because we do not want to see needless suffering or tragedy.
Sincerely,
Eva Haughie
http://www.empirestatelymediseaseassociation.org
…”Common in the northeast U.S. and in scattered other parts of the country.” Am I misinformed or is it a fact that Lyme Disease has been reported in each of the contiguous 48 states?
Here’s the stats for you. I think you misinterpreted the statement you quoted. I never said that it hasn’t been reported widely, only that it is common in the northeast. It’s presence in most other parts of the country is rare and sporatic.
Eva, much of what you have said is well-written and irrelevant. Science is done by data rather than anecdote. When and if the data support a particular diagnosis and treatment, it will be widely adopted.
Dr. Lipson…
We are not talking about pure science here. We are talking about medicine, which, as you surely know, was once and art more than it was a form of cookbook science. I still remember when the kind man with the black bag showed up at my house when I was a child and made his best guess as to what was wrong and what would fix it. He was usually right.
Today’s doctors, on the plus side, have far more advanced technology to rely on for their decision making. On the minus side, the pressures they face from managed care coupled with an over-reliance on that technology have turned medicine from an art form in some cases into mindless cookbook medicine designed to get the patient in and out of the office as quickly as possible. Profits and the doctor’s sanity appear to rely on that.
What you fail to recognize when you make the claim that “science is done by data rather than anecdote” is that sometimes medicine IS done by anecdote. Specifically, when the science for a particular illness is not settled, or is in dispute, and a doctor has sick patients, sometimes he actually makes a best guess by looking at the available science plus his own anecdotal experience, as to what treatment regimen might make the patient overcome their illness.
And that is exactly what is happening with chronic Lyme disease. It is true that there is no science or lab test that can prove conclusively whether a patient is still infected with the Lyme bacteria or not. It is similarly true that there is no science or lab test that can prove the patient is NOT still infected. We simply don’t know the answer and the existing “approved” lab tests are incapable of providing it.
Absence of evidence is not evidence of absence, right? So if peers of yours all over the country are successfully treating patients who they suspect (through the use of lab tests and clinical judgment) to have chronic Lyme disease using longterm antibiotic therapy, what exactly is wrong with that and why would you deny these patients a treatment that is working for them?
If every doctor waited for science to provide the exact diagnostic tests and treatment for every illness, what is the need for clinical judgment? You could just as easily be replaced by robots.
I’m not a doctor and I can think of any number of reasons why long term antibiotic therapy is probably not a good idea when no causative agent is present.
Oldfart: Except that there are studies which show the causative agent is able to outlive the recommended treatment protocols, there are lab tests that indicate the patients may still be infected, and treatment with longterm antibiotics causes their symptoms to improve or disappear. Now, were you lying or are you simply misinformed?
Before Lyme disease was understood, the early patients were called crazy. One of these “crazy” patients, Polly Murray, refused to give up and finally convinced doctors to look for the cause, which they eventually found.
Now you’re saying chronic Lyme patients are crazy (suffering from psychological symptoms). The fact is you don’t know. You just think you know everything, and you think patients are stupid.
Hey, they can’t even get ring worm right. A few weeks ago I had one MD mis-diagnose what turned out to be simple eczema as ring worm (she diagnosed me from across the room without even touching me). So when MDs can’t even get ring worm diagnosed properly, I’m worried about the state of medical diagnosis.
And yes, with proper treatment for eczema and elimination of the allergen that seems to have been the trigger, I’m all better now 😉
anyone seen the hype about that movie “Under Your Skin”?? Directed by a guy who has shot/directed movies about gay men wrestling in pools…suddenly, he is a medical expert and makes this “groundbreaking” film on how the Evil Doctors don’t know how to treat Lyme disease…or is that chronic Lyme disease? or is it fibromyalgia? or tmj?
sorry, can’t keep it all straight….
…….would hate to have my fingers “sown” on. Ouch! Maybe someone could “sew” them on instead?
Advocating that people stop ripping off other people (ie calling out all the quacks who will take money to “treat” chronic lyme or morgellon’s “syndrome”) is actually, by definition, not “hate”. It is concern that such snake-oil charlatans will continue to profit at the expense of people who are led to believe they have one of these, or any other, made-up diseases.
Interesting. . . that movie I referenced above: “under Our Skin”…the YouTube trailer has commentary; read some the other day; went back today and all of the negative comments have been deleted!!!
Ha….great “denialism” in action, live on the internet. I posted a comment today….will time how long it takes the “believers” of CLD to erase it.
After reading the post by palMD and his knocking of the AG of Conn for standing up for WE THE PEOPLE.
palMD your an egghead and an in-thebox MD that is if you are an MD.
You without question are ignorant regarding CHRONIC LYME DISEASE.
THE IDSA HAS BEEN CAUGHT WITH IT’S HANDS IN THE COOKIE JAR AND ARE ON THE PAYROLL OF THE INSURANCE COMPANIES AND WITHOUT DOUBT YOU palMD have NEVER HAD A, WIFE, CHILD OR RELATIVE WITH CHRONIC LYME DISEASE.
I am giving you a name of an OUT OF THE BOX DOCTOR FROM AUSTRAILIA.
DR. BARRY MARSHALL Gastronologist
palMD have you ever heard of H-PILORI BACTERIA?
Dr Marshall found in the early 80’s the cure FOR THE COMMON BLEEDING ULCER.
HE WAS DENIED BY YOUR AMA FOR 10 YEARS THAT NO BACTERIA COULD LIVE IN STOMACH ACID.
GUESS WHAT HAPPENED IN 2005 palMD?
Dr Barry Marshall won the NOBEL PRIZE FOR MEDICINE!
HAVE YOU EVER GOTTEN THAT HONOR palMD.
You are like far to many DOCTORS IN AMERICA WHO FOLLOW LIKE SHEEP IN YOUR FIELDS OF MEDICINE.
YOUR IN THE BOX DOCTORS WILLING TO BE LEAD AS A DOCTOR BY IDIOTS WHO CAN SEE NO FURTHER THEN THEIR NOSES.
I have said enough palMD.
Suggestion from a CITIZEN OF THIS USA.
TAKE YOUR HEAD OUT OF THE SAND DON’T BE A FOLLOWER AND BE A LEADER LIKE
DR. BARRY MARSHALL DO YOUR HOME WORK.
Sincerely,
Alex E. McKinnon
the INFECTIOUS DISEASE SOCIETY OF AMERICA…IS WRONG… LEAD BY INSURANCE COMPANIES AND IS HURTING MEDICINE IN AMERICA.
REMEMBER IF YOUR A SHEEP palMD you follow…
TRY BEING A LEADER IN YOUR FIELD AND REMEMBER YOUR DEGREE IF FOR WE THE PEOPLE AND NOT A PROFIT MARGIN.
HISTORY LESSON IN MEDICINE.
Step away from the Caps Lock key, Alex.
Wow. Just… wow. Total facepalm.
Learn to read, Alex. Seriously.
Re: âChronic Lymeâ
To the so called “educated” Allopathic Gods (oh, I mean doctors) out there: I’ve been serving my country in the Army for 19 years, been in multiple combat zones, all so your incompetent, close-minded, ignorant 4th points of contact can sleep safely at night. (that’s ass in military terms)
Back in my early military days, I might have agreed with the term “fake disease”, as I was a hard charging soldier, unwilling to accept excuses and quick to accuse others of being âweakâ. You see, I was healthy-climbing mountains, running marathons, at the top of my game. Guess what happened one day. Did you guess? I was bit by a tic.
I know, you have already formulated in your small mind that-‘here we go, now she’s going to tell us how her life has never been the same.’
No shit Sherlock. I didn’t know that leaving a tick on me for 3 days was a bad thing, it looked like a mole. Besides, I was in the field with no showers and waited till I got home. I removed it, flushed it down the toilet and proceeded on my mountaineering expedition shortly thereafter. I was not the type of person to pay much attention to my health, nor buy into ‘alternative medicine’.
However, after several months, the tic bite still itched, but- so what, I thought. What brought me into the doctor was a disabling fatigue and weakness, then later, neurological problems. Finally diagnosed and “treated” with 3 weeks of antibiotics, I thought all would be well.
That was in the 90âs. My health has never been the same. I could care less what label you put on groups of symptoms. All I expected was help with symptoms and/or a disease that supposedly did not exist (Chronic Lyme). The first thing I learned (the hard way), was that Allopathic doctors could not help me. I paid for some of these services you call ‘quackery’. I don’t give a rat’s ass what you decide to call it. For me, it helped, and has enabled me to serve my country ever since-that’s the bottom line.
I’m still serving you, the taxpayer, because I was willing to pay for alternative treatments out of desperation. It is quite sad, not the so-called ‘quacks’, but that 100+ combined years of Western Medical School training could not solve my problems.
It is sad but true that ‘quack’ medicine does probably exist. Call it what you will. Double-blind placebo studies have shown the placebo effect to actually cure people. I would rather pay $1,000 for sugar water that ‘works’ for reasons we don’t yet understand, then suffer the pain and emotional agony of a chronic disease that according to you does not exist. I suffered more pain from the implication that these symptoms were ‘all in my head’, then from the disease itself. Did I deserve that? Does anyone?
The best allopathic doctors I ever knew were the ones (usually older) that kept an open mind, that didn’t accuse me of having mental problems because of the lack of scientifically proven data and/or tested treatment protocols.
I understand safety and risks of long term antibiotics, and I understand the value of Western Medicine, but it has its limits. The fact that so many people are willing to try just about anything to relieve their symptoms, should elicit a desire from you to really figure out what is going on. Isn’t Malaria chronic? Isn’t that also a spirochetal bacteria? Perhaps my mind is too simple to understand the complexity of the human body, but I am not the doctor, you are.
Doc, it’s ‘ok’ to not know everything-but to accuse an entire group of people who consider themselves to have a chronic disease as ‘false’ or âmade-upâ is simply not compassionate.
I was lucky-I had a clear etiology, I had free medical care, and I had a clearly defined physical demise evidenced by my history of physical prowess and determination. Yet, here I am, still unable to do the things I use to.
I thank God every day that I am still privileged to wear my uniform, and I sincerely hope that every day when you wake up, you put on your ‘uniform’ with compassion and humility.
May God Bless you always, and despite my harsh words, I sincerely mean this.
Doctors are human too. They have their Kool-Aid and opinion just like the rest of us. So here is a thought – because usually symptoms resolve spontaneously, would it be worthwhile [for the sake of medicine and science] that some of these guys put some skin in the game? Maybe go for a hike in an endemic area? Experiment a little first-hand, confirm fakeness and spontaneous resolution?
I have a particular perspective on Lyme, though not as someone directly suffering from the disease. My wife of 18 years and two of our three children [gestational?] suffer from chronic Lyme. I see it first-hand, daily. I live with those suffering because of it.
Many years of independent research by my wife, working with her PCP, visiting a neurologist, a gastroenterologist, an allergist, a gynecologist, a rheumatologist, and other ists [the worst was the head of infectious disease at a local med school, who said there is no such thing] finally led to proper tests and docs with a clue about what was going on. It is a damned shame this kind of crap has to go on. But I guess when people stick their heads in the sand long enough, refusing to address the problem we can expect more of the same. In my view, PalMD is no better than the quacks, neither one is addressing the problem.
Anastacia – you are a hero and an example for the rest. God bless you and thank your for your service.
I always find it so interesting to watch the nutjobs fly out of the internet woodwork. (Even if debating them is very frustratingâalternative medicine shills can flood a discussion thread like no other.)
I am an engineer who works for the state of New York. During the summer of 08 I was bit by a tick that I crushed some days later thinking nothing of it. A month later I got the flu like symptoms and a rash. The doctor said I had lyme and gave me antibiotics for 3 weeks. My Lyme tests came back positive. The doctor said don’t worry I would be fine.
A month later the joint pains started. I now have ringing in my ears, muscle twitches and a plethora of symptoms that make everyday a veritable hell.
Something in ticks is causing some people to become seriously ill and the sad thing is nothing is being done to research exactly what that is.
Now call it an immunological reaction or a live disease, something has caused me to be chronically ill. Even many IDSA doctors know that symptoms can persist, so to call the disease/syndrome psychological is really ignorant.
I was a very healthy, happy man and then in a few months I was physcically devastated.
I’d love to see all the doctors who comment or treat on this disease/syndrome actually get it and then hear there opinions. It is like hearing an eskimo 400 years ago describe an elephant, they have no clue.
Wow. The whackos are seriously out today. And they wonder why it’s called “Delusional Parasitosis”.
*headdesk*
Whacko my ass. I am stating I have serious symptoms after Lyme treatment. Whether they are attributable to a live bacteria or not I don’t have a clue. That this happens is not even debated by Steere and many doctors who don’t even believe in chronic Lyme.
Lyme can be a very, very serious disease. Since you presume your arrogant position from ignorance I really hope you can share the same experience one day, which is a distinct possibly.
This is a closed minded blog of a fool.
Post hoc, ergo propter hoc. Flamingly fallacious.
Fixed that for ya.
As I’m posting this I’m wondering if you know Jake Young. Anyway, I just wanted to point out that the CDC is going to investigate into the Morgellons outbreak. Michele Pearson is a principal investigator with the agency looking into reports of this disease. I don’t have it or know anyone with it, but I wouldn’t be so quick to scoff at it, I’d wait and see.
Also I see you have alot to say about chronic Lyme disease. First off it was the IDSA who coined the name”chronic Lyme disease”, not the lyme groups. As a matter of fact that was the IDSA’s argument to get funding for a vaccine. I’m going to print a couple of studies, because I have alot,that the IDSA conducted. I’m also going to write a short letter Dr. Steere sent to patients.
Before I start this is an interesting article from the “Regional Disease Vector Ecology Profile-North Africa” published by the Defense Pest Management Information Analysis Center, May of 2000. (Army manual)
“Lyme disease is also called Lyme borreliosis, tick-borne meningopolyneuritis,erythema chronicum migrans, Lyme arthritis, and Barnwart’s syndrome. The causative agent is the spirochete bacterium Borrelia burgdorferi. Like syphilis, the clinical disease manifests itself in acute and CHRONIC stages. Initially there is a highly characteristic expanding skin lesion (erythema migrans) that develops in about 60% of cases. Flu-like symptoms usually occur about the same time. Weeks to months after initial infection, cardiac, neurological or arthritic symptoms and other joint abnormalities may occur and PERSIST for YEARS. Treatment in the LATE STAGES of the disease can be DIFFICULT. CHRONIC Lyme DISEASE can be very DEBILITATING. EARLY RECOGNITION and TREATMENT are CRITICAL! Well now that we know how the Army feels about chronic Lyme disease I’ll print Dr. Steere’s letter: We would like to invite you to participate in long-term follow-up studies of our patients who have had Lyme disease. It has become increasingly apparent that the Lyme disease spirochete, Borrelia burgdorferi, may persist in some patients for years. Of particular concern, recent studies have shown that the spirochete may persist in the nervous system in a small percentage of patients and may cause chronic neurologic involvement. The purpose of our long-term follow-up studies is to determine whether past patients may still have evidence of Lyme disease and, if so, to offer appropriate treatment. These studies are being funded by the National Institutes of Health and the Centers for Disease Control.(Tufts University School of Medicine New England medical Center: August 11, 1994.
“In 1992 and 1993, IDSA author Dr. Mark Klempner published two studies in the journal of Infectious Diseases documenting how Lyme spirochetes can survive antibiotic treatment through intracellular sequestion within fibroblasts, making them among the SMALL NUMBER OF BACTERIA THAT CAN CAUSE CHRONIC INFECTIONS by localizing within host cells where they remain sequestered from some antimicrobial agents.”(1993;167:1074-1081). As he stated in the same journal,”The Lyme disease spirochete can be recoverd long after initial infection, even from antibiotic treated patients, indicating that it resists eradication by host defense mechanisms and antibiotics…several eukaryotic cell types provide the lyme disease spirochete with a protective environment contributing to its long-term survival.” (1992; 166(2):440-4).
In 1993, Dr. Halperin co-authored an article entitled, “Recurrent erythema migrans despite extended antibiotic treatment with minocycline in a patient with persisting Borrelia burgdorferi infection,”in the Journal of the American Academy of Dermatology, 28 (2 PT 2): 312-4. The title says it all:”Even persisting Borrelia burgdorferi infections occur, with manifestations as odd as a recurrent bulls-eye rash ( erythema migrans ). Dr. Halperin wrote in neurology in 1992 (42):43-50). “In many instances continued infection appears to be essential for symptoms to persist, no matter how small the number of organisms, as antimicrobial therapy is generally followed by clinical improvement”.
I just thought you might be interested in these studies. I have plenty more I’ll send at a later date. I beleive these are the studies the IDSA withheld from the Attorney General for a 1 and a half.
Sincerely,
Janis Krause
Is there another way to contact you? I posted some studies from the IDSA and I don’t know why my post was rejected. I just thought you might be interested in them!
Sincerely,
Janis
I stand corrected, they were posted. Thanks!!!
This is Russell Johnson’s patent for the very first Lyme vaccine—US Patent 4,721,617—“The chronic forms of the disease such as arthritis (joint involvement),acrodermatitis chronica atrophicans (skin involvement),and Bannwart’s syndrome (neurological involvement) may last for months to years and are associated with the PERSISTENCE OF THE SPIROCHETE. A case of maternal-fetal transmission of B. burgdorferi resulting in neonatal death has been reported. Domestic animals such as the dog also develop arthritis and lameness to this tick-borne infection. For every symptomatic infection, there is at least one asymptomatic infection. Lyme disease is presently the most commonly reported tick-borne disease in the United States”.—“The infection may be treated at any time with antbiotics such as penicillin, erythromycin, tetracycline, and ceftriaxone. ONCE INFECTION HAS OCCURRED, HOWEVER, THE DRUGS MAY NOT PURGE THE HOST OF THE SPIROCHETE BUT MAY ONLY ACT TO CONTROL THE CHRONIC FORMS OF THE DISEASE. COMPLICATIONS such as ARTHRITIS and FATIGUE may CONTINUE for several years after diagnosis and treatment”.
Hence,”chronic Lyme disease”. Again, it was the IDSA that started the term “chronic Lyme disease”
Sincerely,
Janis!
Persistence of Borrelia burgdorferi following antibiotic treatment in mice…(Emir Hodzic, Sunlian Feng, Kevin Holden, Kimberly J. Freet, and Stephen W. Barthold)—Center for Comparative Medicine, Schools of Medicine and Veterinary Medicine, University of California at Davis, One Shields Avenue, Davis, CA 95616:
The effectiveness of antibiotic treatment was examined in a mouse model of Lyme borreliosis. Mice were treated with ceftriaxone or saline for one month, commencing during the early (3 weeks) or CHRONIC (4 months) stages of infection with Borrelia burgdorferi. Tissues from the mice were tested for infection by culture, polymerase chain reaction (PCR), xenodiagnosis, and transplantation of allografts at 1 and 3 months after completion of treatment. In addition, tissues were examined for spirochetes by immunohistochemistry. In contrast to saline-treated mice, mice treated with antibiotic were consistenly culture-negative, but tissues from some of the mice remained PCR-positive, and spirochetes could be visualized in collagen-rich tissues. Furthermore, when some of the antibiotic treated mice were fed upon by Ixodes scapularis ticks (xenodiagnosis), SPIROCHETES WERE AQUIRED BY THE TICKS, based upon PCR, and ticks from those cohorts transmitted spirochetes to naive SCID mice, which became PCR-positive, but culture-negative.Results indicated that following antibiotic treatment, mice remained infected with non-dividing but infectious spirochetes, particularly when antibiotic treatment was commenced during the CHRONIC stage of infection.
So the CDC admitted ceftriaxone fails to eradicate all spirochetes. I guess MOUSEHAUSEN”S is now official!!
Janis
Actually, Janis, if you can stop ranting for a moment and RTFA, nobody is saying that there is no “Chronic Lyme Disease”. But *most* people who claim “Chronic Lyme Disease” show no evidence of ever having had Lyme in the first place. Seriously, reading for comprehension is a valuable skill. You should try it sometime.
I beg to differ with you. There are many people that were positive according to the CDC criteria, (which actually is not for diagnosing but reporting Lyme),who got treament, relapsed and these people are constantly told they are cured and there’s no such thing as chronic Lyme disease! What do you think the controversy is all about? The CDC will even admit that testing is flawed. Because there can be false positives and false negatives, the problem lies with the testing. Thanks for responding!
Janis
I’m reading (yes I can read-LOL) claims the IDSA makes concerning Lyme disease. I’m going to discuss only one right now. They claim that Lyme disease is hard to catch and not many ticks are infected. I’d like to quote Durland Fish, a professor of epidemiology, that at the time this article was written, worked at the Yale School of Public Health. This article is by Michael Regan—(Hartford, CT.)–Courant Staff Writer–August 24, 2007.
“I was doing some field work on mosquitoes (Westchester County) and these little brown ticks started showing up. Nobody knew anything about these ticks,”I’d never seen them before”. “They weren’t there in ’80, maybe we just started seeing them in ’81, a rare one”. “By’82 they were pretty easy to find.” The tiny deer tick had already infested southern Connecticut by the time Fish started finding them in New York, and had already been associated with what was beginning to be called Lyme disease. But no one was sure just how the disease was transmitted from tick to human. In 1982, however, a researcher found that long, spiral-shaped bacteria called spirochetes were responsible for the disease. Fish got the news in a phone call.
“So I gathered up a bunch of these ticks and went down to Fordham and I was looking through a microscope,”he said.””I saw these tiny little threads, about the limit of visibility under a microscope.” The discovery altered Fish’s professional course.
“I said, “Geez, EVERY OTHER TICK HAS THESE SPIROCHETES IN THEM “FISH SAID.” “NOBODY KNOWS ANYTHING ABOUT THESE TICKS,
THERE ARE A HELL OF A LOT OF THEM HERE, AND HALF OF THEM ARE INFECTED, THIS IS GOING TO BE A BIG, BIG PROBLEM.
That was back in the 80’s and there’s been nothing done to stop the spread of these ticks. So the chances of getting Lyme disease is great and the many co-infections they may carry. As Durland Fish stated, this is going to be a big, big problem, so it is!
Janis
The IDSA claims Lyme disease is rare and occurs in limited locations-Not according to Durland Fish. That it’s easy to diagnose. That lyme testing is reliable. That treatment rarely fails and that chronic lyme disease does not exist.
The truth is that Lyme disease and coinfections result in a complex illness that requires clinical judgement to diagnose and treat. Lyme disease and other tick-borne coinfections are spreading. Tick-borne coinfections make treatment of Lyme disease more difficult. Lyme testing is unreliable. (“The accuracy of the CDC-recommended Lyme testing protocol is abysmal compared to that of other infectious diseases”. In a study by Rendi Bacon of the CDC (1) et. al, they report these sensitivities for the two-tiered ELISA-Western Blot Lyme test: Week 1 after symptoms: 16% (misses 84 out of 100 positive cases) Week 2-4 after symptoms: 48% (misses 52 out of 100 positive cases) Accuracy for all samples(n=280):68% (you might as well flip a coin.) A good screening test really needs to be about 95% sensitive. All this data can be found in the CDC slideshow: “An Update on Lyme Disease Diagnostics-Mario Philipp,PhD. In the latest study by the College of American Pathologists, 516 labs were tested. The overall result was terrible! There were almost equal numbers of false positives as false negatives. Overall, the labs were 55% inaccurate.
The IDSA claims the great majority of persons with B. burdorferi infection present with erythema migrans. (A bullseye). Lyme is frequently a neurological disease, not a skin disease. Only 35-68% of Lyme patients present with a bullseye ‘EM’ rash. But up to 40% develope neurologic involvement of either the peripheral or central nervous system. The IDSA’s overemphasis on the rash and denial of many common neuropsychiatric symptoms will result in missed diagnosis and a future epidemic of late stage disease. The IDSA claims the CDC “surveillance criteria” should be used for diagnosis. Using overly strict CDC criteria misses up to 75% of positive cases. The CDC explicitly states that this definition is intended for surveillance purposes only, and is not intended to be used in clinical diagnosis. The IDSA claims 14-28 days of antibiotics will cure Lyme. This slow growing, evasive spirochete often requires longer antibiotic courses. It is clear from the many studies the IDSA have done shows the spirochete if diagnosed late, can be difficult to treat.
Neuropsychiatry Clin Neurosci, 1995 Summer;7(3);345-7—Rapidly progressive frontal-type dementia associated with Lyme disease—-Waniek C, Prohovnik I, Kaufman MA, Dwork AJ.—New York State Psychiatric Institute, NY 10032,USA—
The authors report a case of fatal neuropsychiatric Lyme disease (LD) that was expressed clinically by progressive frontal lobe dementia and pathologically by severe subcortical degeneration. Antibiotic treatment resulted in transient improvement, but the patient relapsed after the antibiotics were discontinued. LD must be considered even in cases with purely psychiatric presentation, and prolonged antibiotic therapy may be necessary.
Janis
It is interesting for you to state that no one is saying that there is no such thing as chronic lyme and then call some of these people delusional. Your position isn’t supported by your own logic. No one knows for certain what is going on and for you to pontificate just shows you are an ignorant ass that likes to get a rise out of people.
jjjj
Oh boy! More whack-a-loon! I am entirely too tired and ill to deal with you right now… consider yourself spanked, put yourself to bed without supper, and we’ll pick this up tomorrow.
Sorry about that, my computer took on a life of it’s own. I’ll post tomorrow!
Janis
Interesting…
Maybe you could help me out then and diagnose me properly (as you see fit anyhow). I suppose my night sweats are psychosomatic, and my low grade fever, and my swollen knee, the recurring rash, bumping into walls, excessive bruising, dropping objects because my vision makes it seem as if the table is closer than it actually is.
Of course these are just the symptoms you can see. You cannot imagine how terrible it is to do basic things like eating when you cannot swallow properly, or failing to recall a familiar object.
Being misdiagnosed with Chronic Fatigue Syndrome in 1997 after a year of being sick, made sure my infection was wide spread for sure.
Why did my son refuse to breathe at birth and have low muscle tone? Why has he had such terrible memory problems and fatigue during his short life?
It’s just so sad that people don’t understand this disease.
One good thing about medicine is that it is CONSTANTLY changing.
When I was in college (I’m an RN), I was told that when open heart surgeries began on babies, they did not provide pain med for the infants because it was thought that they could not feel pain.
I’ve been a NICU nurse, I can guarantee that a 23 week gestation baby feels pain, let alone a fully developed newborn!
I can’t wait until things are changed with this disease. When enough people are sick, things are gonna change and there are gonna be a LOT of angry people wondering why there is no cure (because it wasn’t thought to be a ‘real disease’, hence lack of research!).
I apologize for any typos/errors, brain is bad lately, not great for a 30 year old who was intelligent in her previous life without Lyme.
Here I go ranting again!!This article is from:(The Complexities of Lyme Disease)–Lyme tests.
There’s a Lyme test, so what’s the problem? There are several Lyme tests, but most of them are dependent on the body’s ability to make antibody against this bacteria. As we have seen, this may be a problem. There are S-layer protecting the bacteria;the surface antigens are not readily exposed;there may be a blocking antibody;the bacteria might be inside a human cell;the bacteria might be down regulating the immune system through cytokines;the bacteria might have altered its antigenic appearance to fool the immune system;the bacteria might be cloaked in B-cell membrane;the bacteria might be hiding in joints,tendons,white blood cells,skin cells or the brain. Remember, if one spirochete survives, it ould cause a relapse. Then there is another problem–the tests that detect antibody can only detect free uncomplexed antibody.
When an antibody is formed,it is meant to latch on to something and never let go until it is destroyed. Like a lock and key,antibodies fit their associated antigens. Once the antibody attaches to the antigen it is no longer a detectable antibody,because it has now become an antibody-antigen complex. The complex is not measurable using todays commercially available tests. Also, as the amount of antigen increases, the amount of antibody can decrease,because the antigen will trap out the available antibody and sequester it. So a person who has a bad infection but is making a limited amount of antibody can be overwhelmed by antigen, thus making antibody detectable only if you can detect the complex.(This means people who have the worst infections may have the lowest antibody titers, and test negative. Note: It takes 4-6 weeks from a tick bite to test positive).
There are two main categories of Lyme tests. The most common and least specific is the Enzyme Linked Immune Sera Assay or ELISA, the other is an Immuno Blot or Western Blot. The Western Blot essentially makes a map of the different antibodies we make to the bacteria. The map separates the antibodies by size and weight, and is reported in units called kilo daltons or kDa. For example, a Western Blot may report bands at 22,25,31,34,39, and 41 kDa. Each of these bands represents an antibody response to a specific protein found on the spirochete. The 41 band indicates an antibody to the flagella protein, and is non-specific. The 31-kDa band represents the OSP-A protein and is specific for Borrelia, as is the 34 band OSP-B and 25 kDa OSP-C.
In 1994,the NIH decided that thre should be consistency between labs reporting Lyme Disease Western Blots, and that a specific reporting criteria should be established. It sounds good, but one could argue they made a bad situation worse. The consensus committee decided to set the standards for a positive test based on the number of bands 25,31, and 34 as specific and significant, the NIH, without any clear reasoning, disqualified those bands from being reportable. The result was that what had been a fair test had now become poor or even useless.
How badly did the NIH bootstrap this test? The following is an analysis of the new guidelines presented as an abstract and lecture at the 1995 Rheumatology Conference in Texas. (1995 Rheumatology Symposia Abstract #1254-Dr. Paul Fawcett et al).
This was a study designed to test the recently proposed changes to Western Blot Interpretation. At the Second National Conference on Serological Testing for Lyme Disease, sponsored by the NIH, the committee proposed limiting the bands that could be reported in a Western Blot for diagnosis of Lyme disease. An IgG Western Blot must have five or more of these bands: 18,23,28,30,39,41,45,58,66, and 93 kDa. An IgM Western Blot must have two or more bands of the following three bands:23,39,41. Conspicuously absent are the most important bands,22,25,31 and 34,which include OSP-A, OSP-B and OSP-C antigens–the three most widely accepted and recognized antigens. These antigens are so immuno-reactive that they were the antigens chosen for the human vaccine trials. Yet they are not considered important enough to include in the diagnostic criteria.
This abstract showed that,under the old criteria, all of 66 pediatric patients with a history of a tick bite and bulls-eye rash who were symptomatic were accepted as positive under the old Western Blot interpretation. Under the newly proposed criteria, only 20 were now considered positive. That means 46 children who were all symptomatic would probably be denied treatment! That’s a success rate of only 31%. The number of false positives under both criteria was zero%! The conclusion of the researchers was:”the proposed Western Blot Reporting Criteria are grossly inadequate, because it excluded 69% of the infected children.”
Repeatedly, there have been patients who are sero-negative for antibodies, yet culture positive. Despite this, our medical community is dependent on these tests and relies upon them as though they were 100% accurate. No matter how bad the tests are,as long as we have them doctors will use them. In some studies the Lyme ELISA’s were more than 75% inaccurate, yet is relied upon as though it were the last word–and all too often it is.
Luft BJ;Dattwyler RJ;Johnson RC;Luger SW;Bosler EM;Rahn DW;et al.—1996—Annals of Internal Medicine,124(9):785-91. Azithromycin compared with amoxicillin in the treatment of erythema migrans. A double-blind,randomized,controlled trial.
“Fifty-seven percent of patients who had relapse were sero-negative at the time of relapse.’
Janis
This is another study describing a sero-negative patient.
Lawrence C;Lipton RB;Lowy FD;Coyle PK–European Neurology, 35(2):113-7-1995
Sero-negative chronic relapsing neuroborreliosis:
(From the abstract:) This article reports a Lyme disease patient “who experienced repeated neurologic relapses despite aggressive antibiotic therapy.” The patient was SERO-NEGATIVE. “Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid,the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic and free antigen.”
(From the article:) Before her 6th hospital admission this patient had received four courses of ceftriaxone, and one of ceftriaxime and two of doxycycline (of 19 and 8 weeks).Increasing right hemiparesis and dyspnea with right intercostal muscle weakness prompted her 6th admission to the hospital. Following intravenous ceftriaxone for 2 weeks, it was decided to place the patient on long-term therapy (22 months) with clarithromycin. Although there is no information on the penetration of clarithromycin into the CNS, it achieves high concentrations within macrophages (18) a known sanctuary for the Bb spirochetes (19). The clinical response to clarithromycin in this patient has now been sustained for over 22 months.
“—Survival of Bb in humans despite aggressive antibiotic therapy has been previously reported (2,22). We believe this to be an example of a patient with chronic relapsing Bb infection. It is important to evaluate unusual patients like this thoroughly in order to determine the effectiveness of prolonged oral antibiotics as a therapeutic option.”
This type of patient is not so unusual anymore!!!
Janis
This study is about the rise in Lyme disease cases:
Emerging Infectious diseases—2008-Jul;14(7):1097-104
(Wide distribution of a high-virulence Borrellia burgdorferi clone in Europe and North America).
Qiu WG; Bruno JF; McCaig WD; Xu Y; Livey I; Schriefer ME; Luft BJ. Hunter College of the City University of New York, New York, New York, USA.
The A and B clones of Borrelia burgdorferi sensu stricto, distinguished by outer surface protein C (ospC) gene sequences, are commonly associated with disseminated Lyme disease. To resolve phylogenetic relationships among isolates, we sequenced 68 isolates from Europe and North America at 1 chromosomal locus (16S-23S ribosomal RNA spacer) and 3 plasmid loci (ospC,dbpA and BBD14). The ospC-A clone appeared to be highly prevalent on both continents, and isolates of this clone were uniform in DNA sequences, which suggests a recent trans-oceanic migration. The genetic homogeneity of ospC-A isolates was confirmed by sequences at 6 additional chromosomal housekeeping loci (gap, air, glpA, xyLB, ackA and tgt). In contrast, the ospC-B group consists of genotypes distinct to each continent, indicating geographic isolation. We conclude that the ospC-A clone has dispersed rapidly and widely in the recent past. The spread of the ospC-A clone may have contributed, and likely continues to contribute, to the rise of Lyme disease incidence.
It would be nice if the medical community would take Lyme disease more seriously. Instead this disease has been held hostage by the IDSA making it seem like it’s hard to catch and easy to treat. If caught late it is a very difficult disease to treat, as the IDSA’s own studies have shown. Let’s hope this new panel will take in all scientific evidence and not just rely on their own opinion. I have a article from JAMA on guidelines and how much is really based on evidence or just opinion. An example: Only 11% of recommendations for heart disease were based on multiple randomized trials. There needs to be a change!
Hope you’re feeling better, Lance!
Janis
Actually, all I see here is several papers discussing cases where the patient *actually has* Lyme disease. The issue at hand is the multitude of people claiming to have “Chronic Lyme disease” who have *no* evidence of ever having *had* Lyme disease in the first place.
Nobody is disputing that Lyme is real. Nobody disputes that it is increasing. Nobody disputes that early diagnosis is the key to effective treatment.
Do try to argue with *me*, not the voices in your head.
Hi Lance,
How can you prove or disprove someone has or doesn’t have Lyme disease if the tests are so unreliable. That’s the point of alot of these posts. Take a look at the top of the site we are on. It says in black and white supposedly there is no such thing as a negative test and this site and the IDSA state there is no such thing as chronic lyme disease. I never said that the IDSA said that Lyme wasn’t real, just that chronic Lyme disease isn’t real. And just so you know, I get along very well with the voices in my head!
Janis
I guess I’m assuming that everyone is familiar with the IDSA’s position on Lyme disease so here is an overview of their guidelines:
1. Lyme disease is hard to catch, easy to cure. Lyme disease is rare and occurs in limited locations.
2. The disease is easy to diagnose
3. Lyme testing is reliable
4. Treatment rarely fails
5. Chronic Lyme disease does not exist
The bullseye rash is all important
1. “The great majority of persons with B. burgdorferi infection present with erythema migrans.”
2. “extracutaneous (non-rash) manifestations are less commonly seen.”
3. “The more indolent forms of neurologic Lyme disease are quite rare.”
Testing is reliable and mandatory
1. “Clinical findings alone are not sufficient for diagnosis of extracutaneous (non-rash) manifestations of Lyme disease—Diagnostic testing—is required for confirmation.”
CDC “surveillance criteria should be used for diagnosis
1. Serum samples should be tested using the 2-tier testing algorithm recommended by the Centers for Disease Control and Prevention.
14-28 days of antibiotics will cure Lyme
1. There is no convincing biological evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease.
Antibiotics don’t help chronic Lyme patients
1. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (6 months) subjective symptoms after recommended treatment regimens for Lyme disease.
2. In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne coinfection.
Pregnant women should not worry about having Lyme disease.
1. There is little evidence that congenital Lyme disease syndrome occurs.
There is no Lyme disease in the south
1. The panel is unaware of a proven case of B. burgdorferi infection acquired indigenously in any state south of Maryland or Virginia.
This is an overview of the LLMD:
Lyme disease and coinfections result in a complex illness that requires clinical judgement to diagnose and treat.
1. Lyme disease and other tick-borne coinfections are spreading
2. Tick-borne co-infections make treatment of Lyme disease more difficult
3. Lyme testing is unreliable
4. Borrelia burgdorferi is difficult to eradicate, if caught late, treatment failure is more common
5. Prolonged antibiotic therapy appears to be useful for many patients with continued symptoms of Lyme disease
The IDSA’s one-size fits all approach to Lyme diagnosis and treatment will result in the misdiagnosis and denial of care of many thousands of patients a year, creating a public health burden as many of these patients become chronically ill and disabled.
Lyme is frequently a neurological disease, not a skin disease.
1. Only 35-68% of Lyme patients present with a bullseye (EM) rash, but up to 40% develop neurologic involvement of either the peripheral or central nervous system.
2. The exclusion of Lyme disease patients with no rash leads to an artificially high estimate of the incidence of the rash among patients infected with B. burgdorferi.
Clinical judgement is essential, because tests may miss over half of positive cases.
1. Diagnosis should be based on clinical signs, symptoms, history, exposure risk, and of course illness. When laboratory tests are not “gold standard” (at least 95% sensitive), clinical discretion is essential.
2. NIH: “Until better tests are available, the diagnosis of Lyme disease must be based on characteristic clinical findings in which the results of laboratory tests play a supportive role.” FDA: “A patient with active Lyme disease may have a negative test result.”
Using overly strict CDC criteria misses up to 75% of infected people.
1. The CDC explicitly states that this definition is intended for surveillance purposes only, and is not intended to be used in clinical diagnosis
2. College of American Pathologists: ELISA assays for Lyme disease do not have sensitivity to be part of the two-tiered approach of the CDC
3. John Hopkins 2-yr study (2005): The CDC 2-tiered testing procedure misses 75% of positive Lyme cases
4. NY Dept. of Health Letter (1996); CDC’s 2-tiered testing procedure misses 81% of positive Lyme cases
This slow growing, evasive spirochete often requires longer antibiotic courses
1. Substantial teeatment failures occur using standard protocols. Numerous studies have demonstrated persistence of infection despite antibiotic therapy. Treatment for 14-28 days results in a 26-50% failure rate.
Most chronic patients improve with treatment
1. Clinical and research evidence shows that long-term treatment can significantly improve the quality of life for patients with chronic Lyme disease. The potential harm in letting a persistent Lyme infection go untreated far outweighs the potential side-effects of long-term antibiotic use. If it’s safe enough for acne patients, it’s use is justified for chronic Lyme patients. Risks are minimized if appropriate precautions are taken.
Pregnant women should be fully informed of the risks of tick-borne diseases
1. Lyme disease, as well as other tick-borne infections, can be transmitted from an infected mother to fetus through placenta during pregnancy, possibly resulting in complications or stillbirth
2. “46 cases of adverse outcomes of gestational Lyme borreliosis were found, including miscarriage, stillbirth, perinatal death, congenital anomalies, systemic illness, early onset fulminant or mild sepsis and later onset of chronic progressive infection.”
Ther are numerous documented cases of indigenous Lyme disease in the south
1. Indigenous Lyme disease has been documented by clinicians, military bases, and health departments across the southern states. With early treatment being essential for a favorable outcome, it behooves southern physicians and epidemiologist to remain open-minded about Lyme disease as a differential diagnosis, especially with the ease by which it can be acquired while traveling out of state. If front-line physicians are told Lyme is rare, based on opinion only, it could result in missed diagnosis and a future epidemic of late stage disease.
2. From 1984-1989, 104 indigenous cases of Lyme disease were repoted in North Carolina. (30-31) The U.S. Army conducts regular Lyme Disease Risk Assessments at military installations and has determined that these southern states have been designated as HIGH RISK for Lyme (AR,CA): MODERATE RISK:(NC
This is a continuation of the southern states:(for some reason they were cut off) MODERATE RISK:(NC,SC,FL,KY) and some risk (GA,MO,OK,LA) In 2005, the CDC reported 313 cases of Lyme disease in states south of Virginia.
This is a letter by Vijay Sikand (part of IDSA) about how serious Lyme disease is at a FDA meeting in 1998–(lymerix).
“It is well known that Borrelia burgdorferi indeed after asymptomatic infection can lurk or secrete itself in certain areas of the body, perhaps the central nervous system or perhaps the joint spaces, only to reappear months or maybe years later in the form of late stages of illness which are harder to diagnose and treat.”
“It is probably worth noting, since I have learned alot, that we don’t have the clinical luxury in private practice that we had in the Smith-Kline Beecham trial in which we had baseline sera on all of the patients who enrolled so that when they presented with symptoms, we could draw acute and convalescent serologies so as to compare them with each other and with baseline to better understand what symptoms they are presenting with.”
“Finally, there are indeed many dilemmas in therapy. In particular, untreated or inadequately treated Lyme disease may lead to the chronic morbidity with which we are very familiar. Most commonly arthritis and the not common but complex neurological syndromes are what often result and which confront the primary care physicians in the office diagnostically and therapeutically.”
“These particular outcomes result in much more intensive, long-term expensive therapy, often in the form of long-term intravenous antibiotics. These are the patients who often are refractory to treatment. Indeed, these are the patients in whom symptoms seem to persist despite what we have given in terms of what we feel is adequate antibiotic therapy by any known measure.”
“In conclusion, we need a vaccine for Lyme disease because it is increasing in incidence and geographic spread. We need a vaccine for Lyme disease because there are problems in clinical diagnosis, it’s laboratory evaluation, and it’s treatment. We need a vaccine for Lyme disease because preventive measures are unfortunately ineffective. Availability of this vaccine would lead to a significant reduction in chronic sequelae and substantive morbidity. Lyme vaccine is thus a critical new public health approach to the primary prevention of Lyme disease in the United States. Thank you very much.”
Signed,
Vijay Sikand
As the above letter shows, the IDSA back in 1998 knew the truth about Lyme disease—The unreliability of the tests,(meaning you could have a negative test and still have Lyme disease) and treatment failure that could lead to chronic Lyme disease.
Janis
Wow. The crazy is strong with this one.
Citing studies about *actual* Lyme disease does *not* support the notion that people with *no* exposure, who do *not* have symptoms, have this mythical “Chronic Lyme Disease”.
Try to keep up with the adults, dearie. Show us *any* evidence of this “Chronic Lyme”. There are Lyme disease patients, and malingering hypochondriacs who latch on to any new disease in the hope of getting their desperate need for attention fulfilled.
Chronic Lyme, Chronic fatigue syndrome, Multiple Chemical Sensitivity… these are all fake diseases. Don’t like that characterization? Do the actual research to show us to be wrong. Until then, how about a nice steaming cup of STFU?
Hi Lance,
If this site claims there is no such thing as a negative test, and yet the IDSA admits,(as their own studies have shown),along with the CDC,you can have a negative test,how do you determine if someone has Lyme disease or not? I’ve never stated, nor do I know of anyone diagnosed with chronic Lyme disease that did not have symptoms. If these so-called “hypochondriacs”, were looking for attention, they certainly wouldn’t find it at most doctors offices. Believe it or not most people go to the doctor because they really are ill. I’ve known many people who were told they were “hypochrondriacs”, where it did turn out they had an illness,not necessarily Lyme disease. Alot of patients have been told they did not have Lyme disease and later had other tests done,(cultures, PCR,MRI’s, spinal taps)and it was determined that they in fact did have Lyme. Most doctors wouldn’t go beyond the blood test, so they really have no idea how many patients have the disease. I think when better tests are developed alot of this controversy will end. Thanks for responding.
Janis
Why do ANY of you think it’s alright to use derogatory language and comparisons concerning people with psychogenic illnesses? I assure you they can be just as real, just as physical, and just as convincing as bacterial infections, and it’s not fair to stereotype sufferers as somehow weak, confused, attention-seeking, hypochondriacs, whatever. I spent over a year HIDING my episodes of muteness and paralysis until they got so frequent I couldn’t function. I have a friend whose sister was blind and mute for four weeks.
Anyone with a disorder of uncertain etiology should do some serious soul-seeking to see if it might have strong psychological factors. Would you be able to accept the diagnosis if the disorder had to do with your brain rather than bacteria? From the knowledge you have right now, is that even possible? (Not addressing this at you specifically, Janis, since I don’t know your disease, but still.)
I’m deeply troubled by the way some doctors try to shove you out the door the moment they get back negative test results and thus decide that your syndrome is psychological and thus somehow not their domain–not even their responsibility to make you feel comfortable. I became unable to walk once triggered by a doctor’s dismissive attitude, and the doctor responded by calling an ambulance to get rid of me despite knowing that this was a daily occurrence for me.
I am not a weak or a self-deluded person. I am not a hypochondriac–I only sought out medical treatment that one time because my particular symptoms are pretty plainly contingent upon my thoughts and emotions–and I am not attention-seeking, although perhaps I should have been more so in the desperately isolated years during which I developed my disorder.
And I sound just like the people above defending chronic Lyme, don’t I? But I guess you wouldn’t want to argue with me that I’m delusional for believing in my strange expressions of stress. Maybe you could argue that you weren’t prejudiced against people with psychogenic illness, (I guess I’m talking to Lance) but you clearly are.
I would like to add, though, that I’d MUCH rather have a disease clearly supported by the medical literature and non-controversial or denied by the medical establishment, and I’d keep on looking for another answer or waiting for research to pan out and “prove” my illness before I went joining internet groups believing in its reality. And I’d DEFINITELY try other possible “placebos” before going on long-term antibiotics if I had no evidence of a continuing bacterial infection.
The problem with individuals accepting an iffy diagnosis is that they miss out on chances of finding a BETTER one. For instance, I have a connective tissue disorder called Loeys-Dietz syndrome, which was only discovered a few years ago. There might be as many people with LDS as there are with Marfan Syndrome, which was described over a century ago.
(Of course, the other problems involve unnecessary and harmful treatment, giving money to people who are willing to take money for iffy medical practices, etc.)
Hi Adair,
I do agree with you that a patient should be checked out for all other diseases or disorders that could be making them ill. Putting Lyme disease aside for a moment, in the real world this doesn’t often happen. Most doctors, not all, don’t usually want to spend time with a patient that has continuing symptoms. They are usually sent to a specialist and if they can’t reach a decision, they are usualy labeled with a mental disorder. Often times a patient will find out perhaps years later, it really was caused by a disease. Lyme disease can cause psychiatric disease. Because of the contoversy about Lyme,research has been stifled. I also agree that long-term antibiotics can cause problems, but if a patient improves, well isn’t that the point of medicine? Most patients on long-term antibiotics,(if there is no improvement), are checked for other disorders by LLMD’s. I think the picture of these doctors has been very slanted. There are many diseases treated with open-ended antibiotics. That’s why we need better tests for lyme and better research.I think the truth falls somewhere in the middle. I hope your health improves and I hope your with a doctor you feel confident with.
Good health to you,
Janis
Horseshit. Lyme research, in fact *all* research, actually increases in times of controversy. Science *thrives* on controversy. Every scientist daydreams of being the one to discover something that completely shakes up the status quo. It is the “alternative” practitioner who refuses to be studied. It is the quack who hides under persecution theories and conspiracies. It is the unethical person who continues to take money from the mentally ill while feeding their delusions.
BTW, which category do YOU fall under, Janis?
False equivalance. One side has evidence, the other has anecdotes from mentally ill people.
Telling someone that they suffer from a delusion is not derogatory. Too many times, the sufferers claim this mythic “persecution” when all they need is to get effective treatment for what *really* ails them. Coddling them and feeding their fantasies only makes matters worse. If I were truly “prejudiced” I would use phrases like “It’s all in your head” and “Get a grip on yourself” and the like. Advising a person to seek competent professional help is not insulting… unless they fear the true diagnosis.
Hi Lance,
I think you misunderstood my post above, the first line says that patients should be checked out for all diseases or disorders that could be causing their symptoms. I have no predudice against anyone that may have a mental illness, but alot of people are diagnosed with a mental illness when it is of a physical nature, and vice versa.
I’m sure many people that had suspicions about “The Tuskegee Syphilis Experiment”, were told the same thing. Sometimes research means withholding proper treatment for patients.
Janis
David Volkman’s submission to the IDSA-Written by: Lorraine Johnson, JD,MBA.
David Volkman, Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, and previously Senior Investigator with the National Institute of Allergies and Infectious Diseases, has submitted the attached letter to the IDSA pursuant to it’s document submission process. He has performed both clinical and bench research in Lyme disease since 1985. Given his impeccable credentials, outlined in the first paragraph of his letter, his submission should carry considerable weight with the panel. Volkman then proceeds to dismantle the IDSA tightly controlled campaign to avoid scientific truth at all costs:
1. Abundant evidence of persistence: There is abundant evidence of persistent borrelia infection in both humans and mice (5-14). Contrary to the claims of the IDSA guidelines and its Committee members, chronic borreliosis patients can be either seropositive or seronegative,i.e.,individuals with persistent infection have or lack anti-borrelia antibodies(7,8,10-14)…In the face of both animal(5,6,9) and human (7,8,10-14)evidence of persistent borreliosis following inadequately treated LD,it is disappointing that Guidelines members continue to dismiss the possibility of persistent borreliosis with unreferenced assertions that it has been “discredited”by”current thinking.”—2. IDSA ignores need for better diagnostic tools: However instead of urging the development of better diagnostic tools to identify individuals with previous infections who may still be infected(36)with chronic symptoms, Guidelines members merely assert the unsupported dogma that chronically infected people are all seropositive. This claim is simply untrue(7,8,10-14). Some of these committee members have testified as “expert witnesses”for insurance companies attemping to deny health benifits to chronically symptomatic individuals and written articles disputing its existence(17).—3. IDSA stifles needed research: Instead of fostering research on the optimal antibiotic regimen to eradicate persisent borreliosis in vitro,animal, and human models, committee members have stifled investigation by their obdurate insistence that persistent borreliosis does not exist(15-19,22). It remains unclear what combination of antibiotics and sustained treatment will eliminate a carrier state and minimize morbidity. The IDSA’s Committee should be a strong proponent of this sort of research rather than an obstacle.—4. PCR testing is reliable and reproducible: Committee members have assailed the PCR eveidence from several labs that detected borrelia DNA in the CSF or joint effusions of seronegative patients(11,13,14). Feder(17) cited problems with nested primers in disputing PCR eveidence. However, as shown below the PCR data was reliable and reproducible.—5. IDSA suppresses science: Despite Drs. Burgdorferi and Barbour having pioneered the isolation and growth of B. burgdorferi at the CDC, much of the current work on persistent borreliosis is being done in Europe as American work in humans may have been surpressed by prevailing dogma(21).—6. CDC surveillance definition misused: The CDC explicitly cautioned against using this restrictive case definition for clinical diagnosis and reiterated this proscription with every re-issuing of its “Surveillence Definition.” It has been a source of frustration and confusion that some in the medical community wrongly insist that a Lyme patient must satisfy CDC criteria.—7. IDSA panel had conflicts: Members of the current IDSA Guidelines Committee for thr treatment of Lyme have been cited by the Connecticut Attorney General(33) for receiving payments from insurance companies as expert witnesses testifying against patient claims for treating chronic Lyme disease. In addition, members received payments for consulting to LD testing companies regarding their accuracy in detecing LD serologically. The guidelines Committee has denied the existence of chronic borreliosis and has insisted that all LD patients are seropositive. The Committee’s conflicts of interest violate recommendations for guidelines committees(34).—8. Need for research not opinion: Finally, encouraging improved diagnostic(36)and therapeutic tools should be a major priority of a new Committee. Recommendations should be evidence-based not unsuppoted opinions of Committee members. Controversies need to be delineated not ignored in the interest of consensus.—Volkman puts his finger on the pulse when he notes that science in the US on persistent infection and the optimal way to treat infection has been effectively silenced by the IDSA!
Janis
Again, Janis, horseshit. “Silenced by the IDSA”? Vast conspiracy, right?
Reread the original post. Specifically:
Can you tell me where in there we are discussing people who *actually* have Lyme disease? Hmm? Didn’t think so. We are talking about people who do *not* have Lyme, have never *had* Lyme, and are being sold a load of horsefeathers by unscrupulous people who want to get rich.
We’ve said it before, and I’ll say it again. Anyone who claims to be silenced by the powers that be is lying. Science thrives on controversy. If there were anything there, you could show me test results that show persistent Lyme infection in these “Chronic Lyme” patients.
Science does not work by bald assertion. We need evidence.
Hi Lance,
The IDSA claims that if you have had Lyme disease and had their treatment accoring to their guidelines you are cured. We are talking about people who had Lyme disease. READ what the IDSA says in their guidelines: There is no such thing as chronic Lyme disease. We’re talking about peole that have had it. What part of that don’t you understand? The truth will eventually come out and everyone will see what the IDSA have done to people for over 30 years. Why would we even be talking about someone who didn’t have Lyme disease? Most monies for Lyme disease has gone to the IDSA and being that they claim there is no such thing as Lyme disease, why would they be doing research into it?
Lance,
Please answer a question for me; is there a such thing as a seronegative Lyme patient? I’m not talking about early in the disease.
The last line of my post at 11:34 PM chronic was left out!
It should read chronic-Lyme disease!
In summary: The IDSA own the patent on Lyme disease, so they control most of the research on it. If they say, which they do, there is no such thing as chronic Lyme disease, and assert the tests are reliable, then they can effectively suppress any independent research, which is what they have done. I do not consider Volkman a quack! More research would end this dispute and get on with the business of taking care of patients!!
I’ve been reading these posts and it does look like lyme disease can persist , and the tests for it don’t seem very good either. If you have to squabble about who has it or doesn’t have it , then there should be a better test. To me , it would seem that more research needs to be done. What’s wrong with that?
My woo meter goes off when I hear about these diseases. In addition to Chronic lyme disease, I think we can add Chronic Fatigue Syndrome, Fibromyalgia and Gulf War Syndrome etc. to the list. Think about it, thousands of doctors and scientists have looked into these things and found nothing. What is more likely, that every scientist is too stupid to find the cause, or the “sufferers” are just having a midlife yuppie crisis? CFS for example strangely only effects middle aged female yuppies, you know the same people that told that their breast implants caused them to be sick;)
From the ACP Observer, May 2007–CDC debunks CFS myths.
Nearly 20 years after chronic fatigue syndrome was officially recognized as a legitimate medical condition, many internists still doubt whether it truly exists. The CDC is trying to change that. Spurred by 15 years of research,the agency kicked off a campaign in November to raise awareness about how to spot and treat the syndrome, which brings exhaustion,aches and pain,and is diagnosed in only 16% of the 1 million Americans who have it. “This is a disease that is very difficult to diagnose and very difficult to understand and treat,”said CDC Director Julie Gerberding,MD. “It has been shrouded in a lot of mystery and controversy.” So the CDC recognizes CFS.
I’m absolutely amazed at such disdain for people that are ill.
The CDC is a political organization. They are a great organization, yet are not immune to pressure from patient advocacy groups. There is no disdain, there is just no evidence that these people have anything more than severe psycholgical problems. It is time to confront their woo, and stop having them drain precious limited resources away from real illnesses. These people need care, they are mentally ill, and need psychiatric treatment, kind of like those whackaloons that said breast implants gave them “CFS.”
Strange how a whole lot of people with these illnesses are upper middle class white women with too much time on their hands, isn’t it?
There’s no disdain? You equate mentally ill people with whackaloons. Are you kidding? The CDC not immune to pressure from patient advocacy groups? Hey maybe the CDC did listen to these groups and found evidence. That is there job. When enough of people complain of identical symptoms it’s the CDC’s job to investigate. Although they are a political organization, they still have to have some evidence to list something as a disease. And I’ll say it again I am amazed at such disdain for people that are ill?
Its da chronic lyme woo disease, got me all sick, I cants admits its all in my hedz cuz I’m stupid CRAZY! GAAAAAHHHHHHHHHHH! Its utmost as bad as me CFS like tiredz all de time cuz dem soap operaz are delayed reruns makes me depreszed like FALOOOOOOOOOOOOO!
Chronic fatigue syndrome, [etc]… these are all fake diseases. Don’t like that characterization? Do the actual research to show us to be wrong. Until then, how about a nice steaming cup of STFU?
Posted by: LanceR, JSG
I think we can add Chronic Fatigue Syndrome, [blah blah blah] to the list. Think about it, thousands of doctors and scientists have looked into these things and found nothing. What is more likely, that every scientist is too stupid to find the cause, or the “sufferers” are just having a midlife yuppie crisis? CFS for example strangely only effects middle aged female yuppies, you know the same people that told that their breast implants caused them to be sick;)
Posted by: Ed
You two don’t have a freaking clue about the real science and methodological issues of chronic fatigue syndrome, do you?
Show me this “science” and “methodological issues” of which you speak, and perhaps we can have a discussion. Until then my position remains the same.
Exactly. Show me some evidence that the whackaloons have a real illness. You can start by showing me a study that shows sick people with these phony illnesses test positive for some microbe or toxin etc, while healthy controls do not. To prove that this microbe or toxin is so bad an animal model might help.
Then you can show me a double blind study where antibiotics help those who have chronic Lyme woo, or Chronic fatigue woo or Gulf war woo or whatever woo is on your mind. The burden of proof resides with you, since the scientific community has found nil. Or you can just admit the only evidence you have is woo-meisters like Joseph Mercola et al spouting their unsubstantied nonsense.
Are da soapz operz all on da reurunz causzing da fatigues!?
Holy Chris! I had no idea this thread was still running.
In my experience, a thread that re-opens or lasts this long is usually infested with trolls and cranks, but hey, that’s entertainment!
Yeah, PalMD, we’re having fun smacking down trolls. We’re so *mean* and uncivil… dang us and our fancy “larnin” and our elitist insistence on “evidence”.
Bald assertions do not an argument make, nor anecdotes a study.
Dr.Alan Barbour owns 24 patents on Lyme disease and scuttled right down to the patent office and acquired a patent on STARI-Dr. Masters deserves credit for discovering that strain. Pat.No.1–7,135,176–VMP-like sequences of pathogenic Borrelia: Pat.No.2–7,094,391–Compositions and methods for administering Borrelia burgdorferi antigens: Pat.No.3–6,878,816–Vmp-like sequences of pathogenic Borrelia: Pat.No.4–6,814,970–Methods and compositions including a 13 kD B. burgdorferi protein: Pat.No.5–6,740,744–VMP-like sequences of pathogenic borrelia: Pat. No.6.–6,719,983–VMP-like sequences of pathogenic Borrelia: Pat. No.7–6,617,441–Diagnostic test for borrelia infection: Pat.No.8–6,451,769–Compositions and methods for administering Borrelia DNA: Pat.No.9–6,437,116–VMP-like sequences of pathogentic borrelia: Pat.No.10–6,300,101–Methods and compositions including a 13kD B. burgdorferi protein: Pat.No.11–6,296,849–Methods and compositions including a 13kDa B.burgdorferi protein: Pat.No.12–6,203,798–Borrelia antigen: Pat.No.13–6,183,986–OspA DNA and lyme disease vaccine: Pat.No.14-6,083,722–Borrelia antigen: Pat.No.15–6,077,515–Flagella-less borrelia: Pat.No.16–5,932,220–Diagnostic tests for a new spirochete, Borrelia lonestari sp. nov.: Pat.No.17–5,846,946–Compositions and methods for administering Borrelia DNA: Pat.No.18–5,688,512–Borrelia antigen: Pat.No.19–5,585,102–Flagell-less borrelia: Pat.No.20–5,582,990–DNA encoding borrelia burgdorfei OspA and a method for diagnosing borrelia burgdorferi infection: Pat.No.21–5,571,718–Cloning and expression of soluble truncated varients of Borrelia OspA,OspA and Vmp7: Pat.No.22–5,523,089–Borrelia antigen: Pat.No.23–5,436,000–Flagella-less borrelia: Pat. No.24–5,246,844–Virulence associated proteins in Borrelia burgdorferi (BB)—Like I said,”they own Lyme disease”.
Janice,
Any crank can file a patent. The stupid it buuuuuuuuuuurns! What I asked was for some epidemiology, toxicology and a double blind placebo controlled study using antibiotics. And you give my patents, my woo meter is on overdrive! Do you a shred of evidence that these diseases are real? Or do you only have these crackpots that have already drained resources and precious man hours away from real people who are really sick?
Itz likeimz in da gulfs war and iz come backs sicks becauz me scared of da sand dunes iz got PTSD butz ims too stoopid tos realizes it.
Also, the patent system in America is seriously broken. It is entirely too easy to get a patent, and entirely too difficult to overturn a bad patent.
Now, evidence. Gotz any? I didn’t think so, or you wouldn’t be spewing this insane conspiracy crap. Come up with evidence, or give up.
The crank you referred to that holds all of patents on Lyme disease is part of the IDSA,and the issue isn’t how easy it is to obtain one,but who owns it. Patenting diseases was one of the worst things done to medicine.
Minerva Med.2008 Oct;99(5):489-96—Severity of Lyme disease with persistent symptoms. Insights from a double-blind placebo-controlled clinical trial.–Cameron D.-Northern Westchester Hospital, Mount Kisco,NY,USA.
A randomized double-blind,placebo-controlled clinical trial(RCT)was conducted in a primary internal medicine practice in Weschester County,New York,USA. A total of 84 adults with Lyme disease with persistent symptoms(LDPS)were studied; 52 received amoxicillin and 34 received placebo. The subjects received either placebo or amoxicillin 3 g per day orally for 3 months. The SF-36 was used as the outcome measure of the patient’s perceived Quality of Life(QOL). For subjects enrolling in this RCT,the average SF-36 physical component summary(PCS)of Qol(40+/-9,range 29-44)and mental component summary(MCS)of QOL(39+/-14,range 23-46)were worse than the general USA population and worse than individuals with diabetes,heart disease,depression,osteoarthritis or rheumatoid arthritis.
The improvements in the SF-36 measure of QOL for subjects randomized to amoxicillin vs. placebo was significant(46% vs 18%,P=0.007). It is important for clinicians to be aware that LDPS can be severe. A significant gain in the QOL for subjects randomized to amoxicillin in this RCT without serious adverse events is consistent with the goal of improving patient’s QOL and consequently worthy of further study. Note: It is estimated that only 20% of medicine practiced today is rooted in double-blind studies.
Again, and let me try to put this as plainly as possible, these studies you keep citing are PEOPLE WHO ACTUALLY HAVE LYME DISEASE. The original post was about PEOPLE WHO DO NOT HAVE LYME DISEASE. They are faking it. Blah blah blah about patents, and bogus conflicts of interest all you like, but these people are not suffering from Lyme disease. They are suffering from unethical people who are taking their money and giving them very little in return.
Do you understand this simple concept yet? Are you just stupid, or are you simply lying? I mean, REALLY.
If the tests for Lyme disease are unreliable, and no other tests are done other than blood work to really find the cause of a persons illness this statement you’ve made is simply untrue. Some of the studies I’ve posted show you can have a negative test and yet still have Lyme disease. If other tests such as: MRI’s,culture,spinal taps aren’t done the source of the illness would be more difficult to find. There’s very few doctors that I know that would go beyond the blood test. Anyway, Lyme disease is suppose to be a clinical diagnosis and a positive test would help support the diagnosis of Lyme disease. Most people who go to the doctor go there because they are ill. That’s why we need better tests and more research. And the IDSA does not distinguish between someone who had Lyme and possibly someone who didn’t, they simply state there is no such thing as chronic Lyme. It seems you are the one that has no concern for these patients, just by your vulgar responses.
Good fight Janis. You Go Girl!!
Ed, multiple sclerosis could be called a disease that âonly effects middle aged female yuppiesâ (3 to1 ratio women to men)â¦and the symptoms can be eerily similar to chronic fatigue syndrome or fibromyalgia. Once it develops into full-blown MS you can finally see the brain lesions on an MRI. Many people with MS are pooh poohed by doctors and told it is all in their heads until later in the course of their disease when it becomes visible in MRIs. True dat, it is in their heads, in their brains to be precise. Most MSers have to deal with that same load of crap until the proof is seen on the MRIs.
Hey Lance, try this one on for size. How about all those people diagnosed with MS that then turns out to be Lyme disease?? I guess you could call that chronic lyme disease huh.
MS sufferers often test negative for lyme with the medically excepted testing methods but when their brain or other tissue is examined under a microscope with proper preparation it is seen to be loaded with the cell wall deficient form of these spirochete (also called L-form or cystic). In the 50s spirochetes were often observed in blood of people with MS. No-one paid attention because they were all excited about how they could create a model of MS by injecting mice with tuberculosis mycoplasm and myelin under the proper conditions (and that is what the specialists use when studying MS???).
Whenever antibiotics are consumed the spirochete sense the hostile environment and most will revert to the cell wall deficient form quite rapidly. At this point they become dormant within the tissue and blood. The bacteria will stay dormant until conditions become favourable for them again. By the way cell wall deficient (CWD) bacteria do not respond to antibiotics. The reason for this is that antibiotics work by dissolving the cell wallâ¦and since there is no cell wall on the CWD bacteria, antibiotics are pretty well useless. CWD bacteria have, what is sometimes refered to as a biofilm, to protect it. The key to treating lyme is to dissolve that biofilm while administering antibiotics and treating coinfections. Since the spirochete will change into these cystic shapes as soon as antibiotics are administered, the patient has a chance to recover and feels better until the treatment has been discontinued. Studies have proven this. I can send you lots of clinical research from all over the world.
And what are those yoyos at the CDC (or where-ever) calling that now, isnt it something like post-lyme cuz there is no such thing as chronic lyme lol??? They say once the 6 week treatment window is over the sufferer must be cured. Its kinda ironic really when you think about it.
The medically excepted testing methods to date are, at best, a disaster. There are several reasons to have a false negative.
First off, the sicker a person is with Lyme disease, the less chance they have of testing positive. This occurs because they have more bacteria present in their system then available antibodies. The body produces antibodies to fight the infection but canât produce enough to allow for a positive result.
Secondly, if the bacteria senses a hostile environment (either antibiotics or some other triggerâ¦if we knew what other triggers we maybe we could cash in lol) and goes into cystic form a negative result will follow (as seen often with MS). In order to see the actual cystic structures tissue and blood samples would need complicated individual preparation thatâs too expensive and time consuming to make available to the public.
The use of anti-inflammatories can also produce a false negative. That includes steriods and any other treatments that inhibit the immune system.
Other bacterial, protozoal, parasitic or viral infections (lyme co-infections as well) produce false negatives. Lots of people with Lyme test positive for Epstein Barr Virus which interferes with result accuracy.
There are lots of different strains of Bb out there. Testing may not encompass the particular strain.
As far as western blot goes, the criteria for a positive can be almost unattainable even if a person is positive, so only a few if any test positive. Canada is a prime example of just that.They have such high cut-offs that no-one tests positive. That must mean it doesnât exist in Canada. All of the American insects, animals and birds check in at the border and are turned away if they have lyme disease, duh. And the tests are cloaked in secrecy for some unknown reason. The labs wonât even say what tests they perform never mind the cut-off numbers from their tests. The Dr receives a piece of paper with either a negative or a positive and that is all the information available. If itâs all on the up and up why this??
So Ed, maybe if you did some of your own research you wouldnât be so ignorant as far as Lyme disease diagnosis and testing is concerned.
Imagine getting sick, maybe being forced to quit work and stay home every day, all day with extreme fatigue and dizziness, cognitive issues such as getting lost on your way down the block, memory problems such as forgetting what you are doing etc, etc, etc. Sounds like fun doesnât it. Someone has to take you to see the dr and the Dr does all the right tests. It all comes back negative. You place your trust in your Drs abilities cuz thatâs what we do. You continue to get sicker and sicker, maybe you get diagnosed with one of those diseases that have lots of symptoms but no known cause, like chronic fatigue, fibromyalgia, Parkinsons or MS. Maybe the Dr prescribes some sort of immune suppressent in hopes of reducing the disease symptoms. This allows more of the lyme bacteria to grow and things continue to progress. Do you just sit there and wait to become totally disabled or do you look for answers and try to help yourself?
And all of this just because Lyme disease testing is brutally inaccurate.
And by the way I was initially diagnosed with MS but managed to get treated for Lyme. I have since tested positive for lyme. My MRIs are proof positive that I am now recovering. And as far as I am concerned I donât really care what anyone wants to call it MS, Lyme, a cold, who the hell cares as long as I am getting better. All I want to do is to get back to work as a professional engineer, start earning some money and just start living again.
Oh yeah, I am a female too. Did you know that Lyme disease needs manganese in order to reproduce. And iron cancels out manganese. Maybe the reason woman are more susceptable to many diseases including MS/Lyme (3 to 1) is because we tend to eat less iron-rich red meat and more manganese-rich veggies. And we lose lots of iron each month too, something men obviously donât have to worry about. Just a thought there, Ed.
And the guys on top that have the power to decide our fates are poisoning the publics minds. They are so sure they are right. Well if they are right I want to see some of their proof, not from one of their own panel participants but from independent sources. I want the true answers not a bunch of anecdotes and hearsay. If they are saying that some treatment is working they must have had some unbiased studies done. Where are they??? Show us the proof.
And as an added precaution I want the big guys to inject themselves with some of that Bb and add in a shot of bartonella or babesia for added measure. Then let that stuff absorb for 6 months to a yearâ¦maybe Ed wants to do it since he is so sure this is just a big crock. Then we can test them once using their criteria. If it comes back negative then we just let them carry on without any treatment. If it comes back positive they get six weeks oral antibioticsâ¦doxycyline, thatâs it.
tnkrbell: tl;dr No, wait… too CRAZY, didn’t read.
janis, when you come up with some actual evidence, feel free to display it. Until then, your unsupported assertions are just crickets in the night.
Tnkrbell,
I read your post, and I couldn’t have said it better myself. It’s about time I’m reading something that makes sense. You go girl,too!!!!!
Janis
And why do the whackos always want to *deliberately* infect people? Are they really that evil?
Wow. Hoping for someone to suffer is one thing, but wanting to *DELIBERATELY* and with malice aforethought *INFLICT* suffering? That’s some weapon’s grade insanity. Also known as MURDER ONE in most jurisdictions.
I thought Lyme disease didn’t kill. Isn’t that what the IDSA says?
I hope all you naysayers get the whackaloon disease. You will be changing your tune pretty quickly if you have to live like this. This makes me sick. Who ever doesn’t believe it probably doesn’t even have a clue what long term illness feels like. This disease is spirochetal…like syphilis….does anybody doubt syphilis has horrible long term effects? No. People know it can drive you insane…and that antibiotics can be given for a year…..but chronic Lyme and it’s symptoms don’t exist. You all deserve to get it.
Hey Lance, If it doesn’t exist why do you care?
And Lyme disease does kill people. Not like AIDS, but people do die from this.
Eldoen G;Vik IS;Vik E;Midgard R.—2001—(Lyme neuroborreliosis in More and Romsdal)—Tidsskrift for Den Laegeforening,121(17):2008-11—(From the abstract)–“Fourteen of 25(56%)patients had positive Borrelia burgdorferi-IgM and IgG titers in cerebrospinal fluid despite negative tests in serum.” I guess you can have a negative test!
Wow. Positive Borrelia tests sure show me.
One last time before I give up on you. The topic at hand is people who have never had Lyme, have never been exposed to Lyme, and are being told that they have “Chronic Lyme”.
What part of that do you not understand?
Janis, YOU ROCK!!!!!!!!!!
Obviously Lance, Ed and others haven’t had the misfortune of having Lyme disease, Chronic Fatigue, Fibromyalgia and from what they are saying, I’m not sure they have any empathy at all for ill people. Maybe no empathy period.
And the nuts can’t even agree. It doesn’t kill, it does kill.
You are all some seriously messed up individuals. Do you really not see that *willfully* injecting someone with a *known* disease organism is not the same as questioning whether Chronic Lyme exists? Do you really not understand that?
Get some empathy. Sheesh, and *we’re* the heartless ones.
You get some empathy…you know, maybe if you got this disease you could understand and put all your energy toward fighting something worthwhile.
Hey Lancer or whatever your handle is,
Do you work for the IDSA? lol
@tnkrbell
Nope. Would that be an effective argument even if I did? You obviously can’t muster any *actual* evidence.
@ill
If you have Lyme, you have my empathy. If you are one of those being abused by the quacks promoting this mythical “Chronic Lyme” or something similar, you still have my empathy. I have no quarrel with people who are suffering. I detest those who would abuse your good nature by offering you staggeringly expensive, useless treatments. Try to understand the difference.
No Lance you are missing the point ,Most of the people who do show negative and are diagnosted with *Chronic Lyme * and are treated for *Chronic Lyme* start to feel better with treatment, symptoms such as memory loss, bells palsy, dyslexia and the list goes on and on. They Get better with treatment Because Remember the point is the testing is NOT reliable.
I speak first hand with my daughter whom in 8th grade went from a straight A student to failing her first two years of high school.
Test after test child study team etc. My daughter became dyslexic and we where told she had add ,adhd ..which are accepted by the medical communtiy as a write off of our children rather than finding out how a normal child went from an excellent student to a student who couldent even write a simple sentence.
We found a doctor who questioned weither we lived in a tick area which yes we do , she was tested and guess what Negative .. she was put on treatment anyhow and guess what she started doing better in school, now two years later she is back to a straight A student , with the occiasional relaps and within that time frame we recieved a Positive test. I as well as my younger child are also Lyme positive.
I also have 15 out of 20 neighbors whom all have Chronic Lyme Disease most of whom where told it was in their heads, a few in wheel chairs that where told it was MS, Parkensins and the long list goes on.
So when you say Doctors that are treated chronic lyme without a positive test and helping people reclaim their lives you are directly hitting us below the belt with your stupidity. Maybe you should start doing some REAL research.
The treatments we receive are not Useless in regards to getting a life back and I commend the doctors that are willing to listen to their patients and do anything to help save a life like they where intended to do, they are the heros not the quacks, The quacks are the ones that could care a less about the real issue and would rather go with a diagnosis that is accepted in the IDSA’s eyes. Someday the truth will come out and you will be eating your words. Lets just hope nobody in your family suffers like we do ,without help.
Lance,
I do know Lyme disease can kill. I was being sarcastic because the IDSA says that LYME doesn’t kill. Maybe you should go into the history of our government and medicine and just see what has been done to populations of people without their knowledge.
You are not understanding the point of what I’m saying. If you test negative and really do have Lyme disease, for most patients that’s it, out the doctors office. The studies I’m posting shows these patients had a negative test, but further investigation showed they did have Lyme. Most doctors don’t know enough about Lyme disease to do further testing. They’re like you guys. And the one on this site that claims to be a doctor, what do you think your patients would think if they saw some of these demeaning posts? And you’re right we’re angry!! We want our health back!!
Why can people with acne be put on antibiotics,long-term and not a word is said. Alot of people that are treated for Lyme long-term are on oral antibiotics. I’ve known people who were on antibiotic treatment for their acne for 4 years. Dermotologists still treat acne with antibiotics. Why is this alright? And you know what you can find a bad doctor in any field of medicine. You keep saying there’s no evidence, if a patient responds to antibiotic treatment,then it certainly indicates they had some bacterial infection. And if you say this is all the placebo effect,then we’re really being screwed by doctors and all the money we spend on drugs.To get back to my question, isn’t it just as dangerous for someone with acne to be on antibiotics long-term? I’d really like an answer because no one has ever been able to answer that!
Fake diseases, fake questions, fake outrage.
I’m seriously beginning to question whether there is something more than simple advocacy at work here. You have a financial stake here, Janis? You one of those quacks we’re discussing?
You obviously do not understand medicine, or antibiotics, or science. We are discussing people who *ARE NOT INFECTED WITH LYME*. Got that? One more time for the deliberately obtuse? These poor people have been buffaloed by quacks into taking very expensive, unnecessary treatments that may very well be making them sicker. When we question those quacks, we are attacked and threatened. Why? What issue do you have with showing evidence?
Never mind. You’ll just lie, distort, misquote, and cite studies that do not say what you think they say. I think we’re done here.
You didn’t answer my question about long-term antibiotic treatment for acne. What tests do you do other then the blood work to see if someone may have Lyme disease? This site claims there is no such thing as a negative test, it seems to me you don’t understand the science,and neither have you understood any of the studies or information I have posted. The studies I have posted show you can have a negative test, and even after treatment Lyme disease can persist.For the mere fact we keep going over this shows we need more research. And the stake I have in this is my son!!!
Wow Lance, you’re a d-bag.
Oh! A “d-bag”! Wow. Such a big word, Cheis! Cheis… that’s interesting… does it come from the German? Scheiss?
See, two can play that game. Do you have anything substantive to the discussion, or are you just a drive-by insult generator?
Janis covers lies and distortions, lymiegreen and tnkrbell cover the pathos and anecdotes, and now Scheiss covers the insults! Hail, hail, the gang’s all here!
Fake diseases,part deux-chronic Lyme disease
TOTAL DISTORTIONS
1. You say Chronic Lyme disease is the name given by a diverse group of patients and physicians–The name “chronic Lyme disease”was coined by the IDSA.
2. Although the Lyme rash is quite characteristic,(a bullseye),you never mention that not all people recall or get the rash.
3. Your site claims the symptoms resolve spontaneously. I’d like to see those studies!!Maybe what you mean is the bacteria is in it’s dormant stage!
4. You state that Lyme disease doesn’t cause late symptoms. Not according to the studies I’ve posted, and hundreds of others that exist. Most of those posts are from the IDSA.
5. The treatment for Lyme disease has been undetermined. Too many people don’t get well with only 28 days of treatment,but respond to longer courses of antibiotics.
6. You propose there is no such thing as a negative test. I’ve posted only a few of the hundreds of studies that show you can have a negative test and after further investigation(if any doctor will do it)the spirochetes can be found or the patient may test positive on differant tests such as : (MRI’s,cultures,spinal taps etc.)
7. You claim that chronic Lyme patients are divided into four groups: Group 1 is a patient with symptoms and no evidence of infection. Would that be based entirely on the blood tests. Lyme disease is suppose to be a clinical diagnosis supported by a positive tests. What other testing are you claiming is done? You also never even mention a patient could have a co-infection.. Group two are those that have been diagnosed with Lyme, but have other diseases. Just because another disease is found does not rule out Lyme. Also another problem is that some patients will be diagnosed with MS,Parkinson’s,lupus,ALS,etc. Spirochetes have been implicated in those diseases. Treatment with antibiotics in many cases have resolved their symptoms or put them in remission. You say Groups 3&4 have evidence of actually having had Lyme,but their symptoms aren’t necessarily consistent with Lyme disease. It would be important to rule out any other diseases the patient may have with continuing symptoms,but most patients with Lyme who have continued symptoms respond when put on the proper antibiotic,especially if they have a coinfection.
8. And many of these so-called quacks have helped many patients. The problem is that treatment protocols are undetermined. The IDSA’s guidelines have left a large portion of patients untreated or undertreated. The studies or articles that I have posted show there are problems with testing and treatment protocols.
9. Most doctors that treat Lyme disease are far from rich. Most chronic illnesses are not very profitable for doctors, maybe for drug companies. Anyway,doctors usually make a good income. So Lyme doctors that are making money treating Lyme disease are no different than a doctor that makes money treating heart disease. They all make money!
10. Lyme groups push for better treatment. Open-ended long-term antibiotic treatment has been used for other illnesses,and if precautions are taken,can be safe.
11. And your last statemnet is that these doctors listen to internet message boards,well you’re on the internet,so I guess that means you too!!!!
1. Irrelevant
2. Lie
3. Lie
4. Lie
5. Distortion
6. Lie *and* distortion
7. Lie, irrelevancy, and SCREAMING distortions
8. Unsupported assertions
9. No shit? Really? And your point is…?
10. More unsupported assertions, and screaming irrelevancies
11. Could you be a little more vague? There’s almost a point there.
Try again when you sober up, please.
Lance,
You don’t deserve any more of an explanation
your just chalked up to a big ignorant Jackass! Go back to high school and get a better education !
Within this paragraph lies the truth;
.
Please go and see the patents many of the IDSA/CDC personnel own,
and how they narrowed the disease defination of Lyme to profit
off the sick and dying.
.
http://www.lymecryme.com
.
View LymeCryme Overview PowerPoint presentation:
http://www.lymecryme.com/rich_text_18.html
.
HELP END THE SUFFERING!
.
EMPOWER yourself, EMPOWER others…
Wow. Such well-constructed arguments. “big ignorant Jackass” sure trumps all that pesky evidence!
And seriously, LymeCryme.org? Really? That’s where you go for information? Wow…
In your haste to post what you think is clever, you got the url wrong:
.
http://www.lymecryme.com
.
AND FURTHERMORE:
.
It’s all there baby, everything is backed up with their own scientific studies and publishings.
.
Deny that.
.
.
Wow. Scientificalized studies? Misquoted, cherry-picked, and *really* don’t say what you/they think they say? I’m impressed.
.Org, .Com, .Dumbass… It’s all the same from here.
So…your stated position is that Chronic Fatigue Syndrome is a “fake disease?” That’s interesting. “Fake” how? Symptoms not real? Psychosomatic? A syndrome, or a condition, caused by something that couldn’t technically be classified as “disease?”
Perhaps you could be so kind as to clarify. I’m a patient, long diagnosed with CFS, or CFIDS, or whatever you think it should be called. And if you’re willing to clarify your position, then perhaps you’d be so kind as to offer an opinion on what might cause some of the symptoms I’ve been dealing with for many years now, and I would follow up with some of these symptoms, for your consideration.
Many fellow sufferers are insulted by the idea that some folks think “chronic fatigue syndrome” is either not genuine, or, perhaps psychological, or even psychosomatic. As am I, but I’ll put that aside if someone–anyone–perhaps you–are able to supply better information than currently exists.
Of course, you’d have to take me at my word that I actually do have these symptoms. But since I’m not interested in ad hominem attacks, nor am I looking to link to questionable websites, I would hope that you would accept that I am telling the truth. Assuming that you would be willing to be fair about this, I would very much like to hear an opinion on what might cause the symptoms I deal with, that comes from someone whose stated position is that what I have been diagnosed with is a ‘fake disease.’
Thank you.
Go find out what medical professionals mean when they say “Syndrome”. Then come back and we’ll talk.
Hint: It doesn’t mean what you think it means.
So when I said “Fake how?” that’s the (non-) answer you give? Not sure why you feel the need to be so condescending, especially since you don’t know what I ‘think’ the term ‘syndrome’ means.
Perhaps your point is that this is a term that’s being misused as a diagnosis. It would seem to me that there are better ways of getting such a point across without suggesting fakery.
I think The Association was the outfit that recorded ‘Windy.’
Clue: you will have difficulty reconciling your use of the term ‘fake disease’ with the results of certain tests that I have had, as well as the symptoms that the results helped to explain.
I will, however, keep an open mind, in the hope that you are capable of continuing in a slightly more civil fashion.
Your kidding right? I was diagnosed with 3rd stage Lyme in 2005, suffered an aneurism and stroke in 2006. Just finished 60 days of doxycycline(again) because of the horrible pain in my knees, got x-rays, showed nothing, blood work showed lymes.Yet, you want to tell ME that its all fake? You need to be bit by a tick and not be tested for about 2 months. Please, do so, and let me know how your feeling!!!
The Association of American Physicians and Surgeons(AAPS)takes IDSA to task: The Association of American Physicians and Surgeons,a non-profit organization founded in 1943,is dedicated to fostering private medicine,ethical medicine,and the patient-physician relationship and protecting them from third-party encroachment. Through thousands of member physicians and surgeons,AAPS represents virtually all medical specialties nationwide,primarily in small and solo practices. AAPS is funded almost entirely by physicians,reflecting its representation of its members and their patients,in contrast with many other medical organizations that rely on funding from outside sources. Justices of the United States Supreme Court have cited legal submissions by AAPS in multiple cases,most recently in 2008.
AAPS objects to the overly rigid IDSA Lyme Guidelines that were published in 2006. For example,on page 1090,the Guidelines mandate laboratory confirmation of an observed condition(extracutaneous Lyme disease)in order to diagnose and treat it. On pages 1089-90,the Guidelines prohibit clinical diagnosis and treatment of particular conditions associated with Lyme Disease if based on”clinical findings alone.”
Thes Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease. Medical societies do not practice medicine; physicians do. The mandate for specific laboratory confirmation is particularly objectionable,as testing for Lyme disease is notoriously insensitive and unreliable. Patients who do not meet this criterion would often be denied treatment that could mitigate severe chronic disability. In some cases,long-term treatment is required. Physicians must be able to exercise their professional judgment concerning the best treatment for each individual patient,without restraint by one-size-fits-all Guidelines,which amount to mandates and prohibitions.
The sine qua non of good medical practice is individualized care for individual patients. Guidelines should not usurp this in any way. It is each physician,and often only the physician,who knows the patient’s history,course of illness,severity of presentation,and responsiveness to treatment. AAPS objects to any curtailment of individualized treatment of patients by competent physicians,and no Guidelines should be adopted that infringe on such treatment.
Andrew Schlafly–General Counsel,Association of American Physicians and Surgeons,Inc.(AAPS)
Fake.
Fake outrage.
Fake experts.
Fake.
McCaulley,Mark E.,M.D.–1998-Guidelines for the clinical diagnosis of Lyme disease.–Annals of Internal Medicine,129(5):422-423.
(Letter to the Editor)”The position paper on laboratory diagnosis of Lyme disease is based on a widely accepted paradigm that is inconsistent with a growing body of medical literature. According to this paradigm,cases of Lyme disease are overwhelmingly seropositive and are unlikely to be associated with persistent symptoms after presumed adequate therapy. In addition,any patients remaining persistently symptomatic are presumed to no longer have Lyme disease at all but rather to have such conditions as fibrmyalgia,depression,or the chronic fatigue syndrome and,as a result,to be unlikely to respond to additional antibiotic therapy. Such presumptions are inconsistent with an increasing number of reports.
A 1994 article reports the increased frequency of multiple symptoms in previously treated patients with Lyme disease compared with controls. Antibodies on ELISA were found in less than half of the patients with Lyme disease. Re-treatment was associated with improvement in half of re-treated patients. Had the guidelines been followed in a clinical evaluation of these or similar patients,Lyme disease would have been diagnosed in only a few of them.
In a 1996 report,Borrelia burgdorferi plasmid DNA was detectable by polymerase chain reaction assay only in a subset of patients with Lyme disease who were seronegative. Many case reports have described patients with Lyme disease who remain antigen positive and symptomatic despite intensive antibiotic treatment.
I suggest the acceptance of a new paradigm that incorporates the above information. Physicians involved in the treatment of Lyme disease should consider that:(1)-Patients with Lyme disease,especially those in late stages of the disease,are frequently seronegative:(2)-The persistence of symptoms is common and may respond to additional antibiotic therapy:(3)-There is much to be learned about the optimal treatment of Lyme disease at any stage.”
FAKE.
Wow. A letter to the editor. Where is that on the food chain, one or two steps above some drunk guy I met in a bar?
And that’s where I’d probably find you-in a bar!!!
Only on Friday nights. Some of us work for a living!
It’s a reference to a not-so-old joke: citing the prestigious journal SDGIMIAB.
Bad Blood-The Tuskegee Syphilis Experiment-by James H. Jones–from pgs.188-196–In June 1965,Dr. Irwin J. Schatz,a staff member of the Henry Ford Hospital in Detroit,became the first member of the medical profession to object to the Tuskegee Study. Any doctor who objected was labeled a lunatic or quack.(Sound familiar?) A letter by Dr. Schatz was sent to the CDC and ignored. A Dr. Stillerman also protested the experiment. A meeting to debate whether antibiotic treatment would do more harm than good convened. The physicians that were not opposed to the experiment cited the severe complications that could result from penicillin therapy(Herxheimer reactions,fibrillations,etc.)as absolute dangers.(Same thing is said about long-term treatment for Lyme disease).The ad hoc committee also heard testimony that treatment probably would not help the patients.(Same thing is said about Lyme disease.) Citing a recent study by a Dr. Smith,Dr. Brown noted that although penicillin could cure syphilitic lesions it often failed to kill the spirochetes that were encased in certain tissues of the body.”I doubt if you could cure them,”Dr. Smith observed gravely.In the end,the ad hoc committee overrode Dr. Stollerman and recommended against treatment.(Denying Lyme patients additional treatment when it could help them amounts to the same thing.And that’s just what the IDSA’s guidelines have done,denied Lyme patients long-term treatment.) (Hint:This was a conspiracy that lasted over 40 years.)
Sparling PF.–1971–Diagnosis and treatment of syphilis–New England Journal of Medicine,284:642-653:
Some infected patients had negative or equivocal serologic tests for syphilis. “These studies emphasize the fact that late syphilis can occur even if all serologic tests are negative”. Includes a review of recent evidence indicating that penicillin treatment is not always curative in patients with late syphilis.”Penicillin therapy of neurosyphilis has not been as effective(as in early syphilis).Several studies have reported relapses…Clinical progression of symptomatic neurosyphilis is relatively common despite antibiotics.”(p.650)
At what point does treatment for people with syphilis stop? 28 days?
Comprehension: EPIC FAIL!
Wow. When actual disease organisms persist, they can cause **shudder** actual diseases! Amazing!
What conclusion should that lead us to? Anyone? Anyone?
Too fake. I suppose I should stop
taunting the insanefeeding the troll. But they are just so darn cute when they look at me with those big eyes and babble their incoherent gibberish! I just can’t resist!PalMD — The only real “quack” here is you. Not only are you a quack, you are a coward. If you believe so well in what your stupid mouth is shooting off, then why are you such a coward that you don’t go by your “real” name? Afraid that you might be linked to being the quack you really are, doctor???
PalMD — When the great “joy” that you have in your family (that your stupid bio professes to be there) comes to a crash and one of your kids ends up dying of Lyme Disease or becomes disabled with its crippling effects — now THAT will be compensation enough for the idiocy and fat-headed remarks you propel through your article like a drug pusher. When all your Infectious Disease people can’t (or won’t) fix your kid then because they are playing with the same politics that you are pushing right now, let’s see how well you shoot off your mouth then. What will you do, or doctor dear?
Oh, yes, I know who the real quack is in this article. And it’s NOT the lyme-literate doctors. It’s the ignorant fools such as yourself who play with peoples’ lives and pretend to have some foundation of knowledge to back up their cavalier criminality. BUT, the ONLY “science” they have to back it up with is the Western blot and the ELISA test, both of which even the ignorant fools of your philosophy agree are inconclusive and poorly drafted “crap” tests. And, the Guidelines they go by are even being investigated by the State of Connecticut (which, by the way, should know MORE about LYME than any of the NIH, CDC, FDA, or ignorant doctors such as yourself who can’t do any better in the world of science than to put our little petty blogs on the Internet).
PalMD — you sure as hell are NO “pal” of mine, I am PROUD to say. You are just too stupid to even acknowledge as anyone who even remotely knows what they are talking about. Go and learn something, then do something more with your pathetic life than to write little blogs about things you are no expert in. Good day!
Wow. The hatred and vitriol from people who “just want to be heard”. Yeah… that helps.
LanceR — sounds like the real “hatred and vitriol” is coming from your bogus blog and folks like you and the great knowledgeable one (PALMD) who mouth off without the knowledge and human sense to back it up. Go and seek out some real patients, doctor, who have Lyme Disease. And then if your are any real kind of a practitioner, maybe you might come to the reality of what type of Imitator this horrible disease really is…. and patients are surely NOT finding their cures in the madmen of science and Infectious Disease such as yourselves or those you seem to be promoting. When they actually DO find the help in these so called “charlatans” (by your ignorant definition) they are HELPED … WHICH IS MORE THAN WHAT ANY OF YOU FOOLS DO TO HELP YOUR SICK PATIENTS. ALL YOU CAN DO IS CRITICIZE THOSE WHO ARE REALLY COURAGEOUS ENOUGH TO PUT THEIR PRACTICE ON THE LINE TO HELP … AND GOD BLESS THOSE DOCTORS WHO DO. AND THAT DOES NOT INCLUDE FOOLS LIKE YOU, BY THE WAY, WHO ARE TOO COWARDLY TO EVEN FESS UP TO YOUR OWN TRUE NAME WHEN WRITING A STUPID BLOG LIKE THIS> HOW CAN ANYONE EXPECT DOCTORS LIKE YOU TO HAVE THE COURAGE TO STAND UP FOR YOUR PATIENTS IN NEED?! …
Reasons for False Negative(seronegative)Test Results in Lyme Disease:
1.Recent infection before immune response
2.Antibodies are in immune complexes
3.Spirochete encapsulated by host(i.e.Lymphocytic cell walls)
4.Spirochete are deep in host tissue
5.Blebs in body fluid,no whole organisms needed for PCR
6.No spirochetes in body fluid on day of test
7.Genetic heterogeneity(300 strains in U.S.)
8.Antigenic variability
9.Surface antigens change with temperature
10.Utilization of host protease instead of microbial protease
11.Spirochete in dormancy phase
12.Recent antibiotic treatment
13.Recent anti-inflammatory treatment
14.Concomitant infection with babesia may cause immunosuppression
15.Other causes of immunosuppression
16.Lab with poor technical capability for Lyme disease
17.Lab tests not standardized for late stage disease
18.Lab tests labeled”for investigational use only”
19.CDC criteria is epidemiological,not a diagnostic criteria
The majority of laboratories,including state and county public health laboratories,use CDC epidemiological criteria for reporting Bb Western Blot IgM and IgG test results. Some of these labs may automatically insert a statement to physicians similar to the following one included by the Sonoma County Department of Health Services Public Health Laboratory: The diagnosis of Lyme disease must include careful clinical evaluation and should not be based only on the detection of antibodies to Borrelia burgdorferi: Unfortunately,however,most physicians do use these tests as definitively diagnostic,rather than making a clinical diagnosis based on patient symptomology and response to the various antimicrobial protocols used to treat Lyme and common tick-borne co-infections. Co-infections may include: Babesiosis,Bartonella,Ehrlichiosis(HGE and HME),Rocky Mountain Spotted fever(my friend died of this because she was not diagnosed in time),Colorado Tick fever,Relaspsing fever,Tularemia,Powassan encephalitis,Tick paralysis,Mycoplasma!
Mary writes:
“When the great “joy” that you have in your family (that your stupid bio professes to be there) comes to a crash and one of your kids ends up dying of Lyme Disease or becomes disabled with its crippling effects — now THAT will be compensation enough for the idiocy and fat-headed remarks you propel through your article like a drug pusher. ”
Wow! Another alternative medicine advocate shows her love for humanity by wishing death and disability on children. Good show. Fortunately, the illnesses she calls down from the heavens are as imaginary (“Chronic lyme disease”) as her medical knowledge.
Reasons for Survival and Persistence of Lyme Disease Bacteria(cystic forms,blebs,L-forms,etc.)
Department of Internal Medicine,Yale University School of Medicine,New Haven,CT 06510…Source–J Immunol 1993 Feb. 1;150(3):909-15—Abstract:
The macrophage is a known reservoir for a number of infectious agents,and is therefore a likely candidate site for PERSISTENCE of BORRELIA BURGDORFERI, the LYME SPIROCHETE. We report that unopsonized B. burgdorferi enter macrophages rapidly,resulting mainly in degradation but occasionally in apparent intracellular PERSISTENCE. We studied uptake of spirochetes by macrophages by simultaneously labeling infected cells with antibodies to B. burgdorferi and with sequential components of the endocytic pathway,and we examined optical sections(0.5-1.0 micron in thickness)of these cells by confocal fluorescence microscopy at multiple time points after infection. We found that only 5 min of incubation at 37 degrees C were required for nearly 100% of B. burgdorferi to enter a lysosomal glycoprotein-positive compartment,whereas 60 min were required for 90% of the spirochetes to appear in a cathepsin L-positive compartment under the same conditions. We also labeled infected living cells with acridine orange to distinguish live from killed intracellular organisms. Although the large majority of spirochetes within a given cell were dead, we saw occasional live ones up to 24 h(the longest interval examined)after all extracellular organisms had been lysed in distilled water. Moreover,we can reculture spirochetes from macrophages after infection. PERSISTENCE of SPIROCHETES within macrophages provides a possible pathogenetic mechanism for CHRONIC or RECURRENT Lyme disease in man!
Seronegative Lyme disease,Dissociation of specific T-and B-lymphocyte responses to Borrelia burgdorferis: Dattwyler RJ,Volkman DJ,Luft BJ,Halperin 33,Thomas J,Golightly MG.—Department of Medicine,State University of New York,School of Medicine,Stony Brook 11794-8161:
The diagnosis of Lyme disease often depends on the measurement of serum antibodies to Borrelia burgdorferi,the spirochete that causes this disorder. Although prompt treatment with antibiotics may abrogate the antibody response to the infection,symptoms PERSIST in some patients. We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics,but in whom CHRONIC Lyme disease subsequently developed. Although these patients had clinically active disease,none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunofluorescence assay. On Western blot analysis,the level of immunoglobulin reactivity against B. burgdorferi in serum from these patients was no greater than that in serum from normal controls. The patients had a vigorous T-cell proliferative response to whole B. burgdorferi,with mean(+/-SEM)stimulation index of 17.8+/-3.3,similar to that(15.8+/-3.2 in 18 patients with Chronic Lyme disease who had detectable antibodies. The T-cell response of both groups was greater than that of a control group of healthy subjects(3.1+/-0.5;P less than 0.001). We conclude that the presence of CHRONIC Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of CHRONIC Lyme disease.
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis:Neuroinflammation—2008 Sep. 25;5:40—Miklossy J,Kasas S,Zurn AD,McCall S,Yu S,McGeer PL.—Kinsmen Laboratory of Neurological Research,University of British Columbia,Vancouver,BC,Canada.
Background; The long latent stage seen in syphilis,followed by chronic central nervous system infection and inflammation,can be explained by the persistence of atypical cystic and granular forms of Treponema pallidum. We investigated whether a similar situation may occur in Lyme neuroborreliosis. METHOD: Atypical forms of Borrelia burgdorferi spirochetes were induced exposing cultures of Borrelia burgdorferi(strains B31 and ADB1)to such unfavorable conditions as osmotic and heat shock,and exposure to the binding agents Thioflavin S and Congo red. We also analyzed whether these forms may be induced in vitro,following infection of primary chicken and rat neurons,as well as rat and human astrocytes. We further analyzed whether whether atypical forms similar to those induced in vitro may also occur in vivo,in brains of three patients with Lyme neuroborreliosis. We used immunohistochemical methods to detect evidence of neuroinflammation in the form of reactive microglia and astrocytes. RESULTS: Under these conditions we onserved atypical cystic,rolled and granular forms of spirochetes. We characterized these abnormal forms by histochemical,immunohistochemical,dark field and atomoc force microscopy(AFM)methods. The atypical and cystic forms found in the brains of three patients with neuropathologically confirmed Lyme neuroborreliosis were identical to those induced in vitro. We also observed nuclear fragmentation of the infected astrocytes using the TUNEL method. Abundant HLA-DR positive microglia and GFAP positive reactive astrocytes were present in the cerebral cortex. CONCLUSION: The results indicate that atypical extra-and intracellular pleomorphic and cystic forms of Borrelia burgdorferi and local neuroinflammation occur in the brain in CHRONIC Lyme neuroborreliosis.The PERSISTENCE of these more RESISTANT spirochete forms,and their intracellular location in neurons and glial cells,may explain the long latent stage and PERSISTENCE of Borrelia infection. The results also suggest that Borrelia burgdorferi may induce cellular dysfuntion and apoptosis. The detection and recognition of atypical,cystic and granular forms in infected tissues isessential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form.
And MS wasn’t real either. I feel sorry for you guys. As you are judging these victims who are chronically ill, you will be judged in the future when people start doing their research and read your ridiculous thoughts. History will not judge you favorably.
And MS wasn’t real either. I feel sorry for you guys. As you are judging these victims who are chronically ill, you will be judged in the future when people start doing their research and read your ridiculous thoughts. History will not judge you favorably.
Just checking, Janis & DDS… any evidence yet? No? Didn’t think so.
See, MS was not believed to be real… until actual *evidence* arrived. “Chronic Lyme” as described does not exist. Once the little bugs in your boo boo go bye bye, widdle babby won’t be sick no more!
Is that simple enough yet?
Lance,
Since you think you know so much about chronic lyme disease, I have a question for you. A major lawsuit took place between lyme physicians and the International Lyme and Associated Diseases Society (ILADS). Who did they sue and why? Also, what was the outcome of the lawsuit?
Hey Lance,
Looking over all of your posts why do you keep telling us you’re a fake? We already know it!
There are two main flaws in the studies used by the IDSA to set their Lyme disease guidelines…Hint: One of these flaws was used in the Tuskegee experiment!
Where have you been? Did you get lost Friday night?
Gee, the medical society found the cause of MS? I thought they were still looking for the cause. Being that you know what it is, why don’t you let us know! Even though it’s supposedly an autoimmune disease, what causes it? What virus or bacteria? What causes the body to attack it’s self? Where’s your proof?
Lance,
In case you didn’t know post 152 is for you!!
National Multiple Sclerosis Society…What causes MS? While the cause (etiology) of MS is still not known, scientists believe that a combination of several factors may be involved. Studies are ongoing in the areas of immunology (the science of the body’s immune system),epidemiology (that looks at patterns of disease in the population),and genetics in an effort to answer this important question. Understanding what causes MS will be an important step toward finding more effective ways to treat it and—ultimately—cure it,or even prevent it from occurring in the first place. The major scientific theories about the causes of MS include the following: Immunologic, Environmental, Infectious-(some patients who were diagnosed with MS actually had Lyme disease and after treatment recovered),Genetic. Many people who have had chronic lyme disease,in a lot of cases the spirochete was FOUND! Doctors know and diagnose MS based on symptoms and tests. Lyme disease is diagnosed based on symptoms and if the blood tests are negative, MRI’s, cultures, Spinal taps have been very helpful in making a diagnosis. So doctors diagnose MS based on symptoms, no known bacteria or virus is found.
Hey Lance could you use some cash? The Greater Hartford Lyme Disease Support and Action Group has posted a $20,000 reward to any physician that can prove that the Lyme bacteria Borrelia burgdorferi is eradicated after 42 days of antibiotic treatment in all cases. It’s been up for grabs for a couple of years and no one has claimed it. Could come in handy on Friday nights!!!!
LanceR wrote: “See, MS was not believed to be real… until actual *evidence* arrived.”
Do you think that science and medical technology have reached their epitome, that no advances or new discoveries will be made from here out for the rest of time? If not, then why are you denying possible future discoveries to support persistent Lyme infection?
What a depressing world in which you live! As a research scientist, I’m glad that my perspective accepts that while we see far by standing on the shoulders of those before us, future generations will see even further.
Note to self: young and inexperienced physicians to stay away from. (look above)
Wow. So much reading comprehension fail, so little time.
@Janis: You persist in misreading studies that do not say what you think they say. In the OP, it clearly states that some subset of patients who claim “Chronic Lyme” actually do have Lyme. These are not the patients we are discussing. Until that sinks in, we are just making noise past each other.
@SM: New discoveries will come… with evidence. There is no evidence for “Chronic Lyme”, despite millions being spent trying to prove it. I said before, and I’ll say it again; show us evidence, and watch the medical community fall all over itself leaping to study it. Until then, you are all just howling at the wind.
Evidence, evidence, evidence. All else in anecdotes and empty howling.
@LanceR
You didn’t answer my question. Let me try to rephrase:
If evidence for chronic Lyme requires testing and methods not currently available (yet to be developed/discovered), then how can you deny that it is possible?
Before the advancement in MRI capabilities, you could not see the evidence for MS. By your logic, did MS not exist before the evidence could be seen?
By your logic, should all research on Lyme stop, because we already have all the evidence we could ever potentially collect?
I may be playing the slippery slope, but you seem to be just as guilty of doing so, going in the opposite direction.
I’m not slipping anywhere. I’m not suggesting that research stop. I am suggesting that there is no evidence anywhere of any such “disease”. It’s a fraud.
I’ll repeat that. Zero, zip, nada, none, empty set, swabo, zilch evidence. “Chronic Lyme” can be broken into three groups: people with no Lyme exposure *at all* who claim to have “Chronic Lyme”, people who have real diseases *misdiagnosed* as “Chronic Lyme”, and people who actually have Lyme disease that has not fully been treated. (NEJM, see ref in OP.)
What we are discussing is the first two groups. These people have been lied to, abused, and cheated. I have nothing but contempt for the people who take their money and offer only platitudes and quackery.
Janis & her ilk can rant and rave all they want, but until there is evidence, it doesn’t mean anything.
Lance,
I guess you don’t read too well. Most of the studies I’ve posted show that patients had continuing symptoms after treatment for Lyme disease. They HAD Lyme disease! A lot of people have been diagnosed with MS, cancer and other diseases and had treatment when it turns out they didn’t have those diseases, should we take all of those doctors to task? Misdiagnosis sometimes happens. But there is a large portion of patients that studies show had LYME and the antibiotics didn’t cure them. That’s whom I’m talking about.
The IDSA—ggrrrr—clearly states in their guidelines that there is no such thing as chronic Lyme disease, and you know Lancy pants,you say the same thing. You call chronic Lyme a fake disease!!!!And you didn’t answer my question about MS,no bacteria or virus,(except for some cases of Lyme misdiagnosed as MS),has been found! So your illogic stating that nothing can be found in these patients diagnosed with chronic Lyme disease doesn’t hold water, many times the bacteria has been found! This site even claims there is no such thing as a negative test too, and that is simply not true. You GUYS are the misleading ones and vulgar at that!!!!
Lance,
I guess you can’t read either. Alot of the studies I’ve posted show that a patient had Lyme disease and the treatment didn’t work. They had Chronic Lyme because the antibiotic did not eradicate the original infection. That’s who I’m talking about. Patients occasionally are misdiagnosed with other diseases and sometimes treated for them. Do we take all of those doctors to task? The IDSA—gggrrrr-clearly states there is no such thing as chronic Lyme,period. And you know what, Lancy pants, you say the same thing, you call it a fake disease! You also say there’s no such thing as a negative test. You GUYS are the ones not telling the truth! You keep saying where is the evidence, there’s plenty—read—you could argue where’s the evidence for MS? No bacteria,no virus, some patients have been diagnosed with MS,when they really had lyme,but other then that there’s no evidence. Yet we do know MS is real,just like Chronic Lyme disease is real,patients who are still infected.
My inability to reach common ground with you may be a fundamental stand off or semantics.
I’m trying to state that I disagree that lack of current evidence imposes certain ultimate denial of the existence of chronic Lyme. I understand and agree that anectodotal evidence is not scientific evidence. I don’t agree that the failure to clearly diagnose chronic Lyme with laboratory evidence at this time rules out the possibility of persistent Lyme infections.
When you discuss the first group from the NEJM study, you state they have no Lyme exposure. I’ve read the NEJM paper you cite, and I still don’t see how stating these people in the first group have no evidence of Lyme exposure ever holds much meaning, as the tests can fail. (Even a quick literature search on the ELISA test will confirm that the testing is faulty.)
Until there is better testing, it’s a fallacy to make broad conclusions denying the possible existence of persistent Lyme infections.
SM: “Chronic Lyme”, as currently being bandied about, is a catch-all bucket rather like “Morgellon’s”. People who generically “feel bad”, and may (IMHO) suffer from severe depression or other psychological disturbances, get some sweet talk from quacks and thieves about “Chronic Lyme” and *ping* “I’m not crazy! I’ve got (bogus fake disease here)!”
Nobody disputes persistent Lyme infection. But there is a light-year between a persistent infection and this “Chronic Lyme” nonsense.
One good example of the issue is the vitriol directed at anyone who dares say “It ain’t so” above a whisper. See Janis’ increasingly schizoid attacks above. Show us the evidence. That’s all that’s been asked, and we’re “Pharma Shills” and worse.
Janis: you really need to chill. If someone *has* Lyme, and it has not been successfully treated, do we really need to make up a new disease? They have Lyme disease. Simple enough. Sheesh.
Lance,
First off,the studies I refer to speak for themselves. At the bottom of each study is a conclusion by the doctors involved. We are not READING the ORIGINAL POST,we’re reading this post which states chronic Lyme disease is a fake. On this site you also claim there is no such thing as a negative test. Well is there? Is this a mistake or do you have something different on your original post about a negative test? See how this is going,just change things around. Telling a patient that it’s all psychological is a catch-all too. Many people have gone broke seeing a psychiatrist when they actually had a health problem. Thyroid disease is a good example,doctors still overlook this. Also,re-infection of Borrelia is rarely ever discussed,or co-infections. And there is acute Lyme disease and chronic Lyme disease. Look it up,any symptoms that lasts three or more months or are recurrent is considered chronic! So if Borrelia were not an ongoing infection and it left permanent damage it would still be considered a chronic condition.
I agree with your points. There is little known about Lyme Disease and why some feel fine after 10 days of doxy and others turn chronically ill with myriad and varied symptoms.
I think there are different strains of the disease and not a whole lot of consensus on what’s being treated.
I’d rather err on the side of caution if I was a doc, and not minimize the threat this disease, which is endemic in Maryland and heading down the coast, and prescribe 30 days and see how it goes.
Doctors — there is no harm in 30 days of doxy to see people safely through this.
There is no such thing as fibromyalgia either huh.
It’s easy to be on the side of an argument when you have never been bit by a tick and had your health rudely interrupted. Don’t blame the patients! Call us crazy if you like, but crazy people get physically sick too. The burden of proof should not be on the sick.
Why did you bother to become doctors if you like to belittle sick people? That’s too funny! What is the point? Why don’t you put your money where your mouth is and invest in a test that will disprove chronic lyme exists. That way sick people won’t waste their hard earned dollars on Lyme. Or LLMDs in other states who keep us addicted to treatments that don’t cure only give us hope.
May I ask, who have you treated and cured lately — for anything?
These young physicians are obviously inexperienced and perhaps they suck at their job so much, that this is why they need to start controversial topics on their website? Of course as well all know, it is all about money with the majority of today’s medical school students. That is why they are now having trouble finding primary care physicians. It just doesn’t pay to be a PCP anymore.
Transformation of cystio forms of Borrelia burgdorferi to normal,mobile spirochetes: Authors…Brorson O;Brorson SH: Author affiliation…Dept. of Microbiology,Ulleval University Hospital,Oslo,Norway…Source: Infection 1997 Jul-Aug;25(4):240-6…Abstract:
The purpose of this study was to evaluate the behavior of Borrelia burgdorferi under controlled conditions. The occurrence of cystic forms of Borrelia burgdorferi in vitro was noted,and these cysts were able to be transformed to normal,mobile spirochetes. B. burgdorferi was cultivated in a commercial culture medium without serum. The spirochetes multiplied only slowly in this medium,and transformation to encysted forms was observed after 1 week. When these cysts were transferred to the same culture medium with rabbit serum,the encysted forms developed into regular,mobile spirochetes after 6 weeks,and their regeneration time was normal. Examination of these cysts in the transmission electron microscope revealed transverse fission inside the cysts. Conclusion: It is probable that similar phenomena may occur in vivo under conditions unfavourable for spirochetes. These observations may help to explain why diagnosis and treatment of B. burgdorferi infections in humans can be difficult.
More of the same Hypocrit’s Oath, Lance, and Pal Mal: “First, do harm…”
Let’s see it in YOUR kid, then see what you DO believe is “real” and not real, Mary writes again.
Moronic MDs
Pal Mal et. al. of the Moronic MD clan: How much of your closet full of medication have you been using for yourselves anyway (on a little too much morphine, perhaps?) that you can’t see to do anything REAL in the medical world other than write little half-wit blogs? Is that the BEST you’ve got to offer???
Learn to be doctors, then come back and do something with yourselves… for real. Until then, spare us your idiocy.
Neurologic Manifestations of Lyme disease,the new “great imitator”—Parchner AR.—Department of Neurology,University Hospital,Georgetown University Medical School,Washington,D.C.—1989 Sep-Oct;11 Suppl 6:S1482-6.
The causative agent of Lyme disease,Borrelia burgdorferi,is a highly neurotropic organism that not only can produce symptomatic neurologic disease but also can exist DORMANT within the central nervous system (CNS) for long periods. Two distinct types of neuroborreliosis occur at different stages of Lyme disease. Second-stage Lyme meningitis resembles aseptic meningitis and is often associated with facial palsies,peripheral nerve involvement,and/or radiculopathies. Lyme meningitis may be the first evidence of Lyme disease,occurring without a history of erythema chronicum migrans or flu-like illness. Third-stage parenchymal involvement causes a multitude of nonspecific CNS manifestations that can be confused with conditions such as MS,brain tumor,and psychiatric derangements. Manifestations of CNS parenchymal involvement in Lyme disease are generally associated,however,with a history of erythema chronicum migrans,meningitis,or carditis. Both second-and third-stage Lyme neuroborrelioses are commonly misdiagnosed because they are relatively uncommon and because they mimic many better-known disorders.
This was written in 1989 and it seems this is not so uncommon anymore!
Janis — you are giving the facts that these crooks want to hide (most likely because they have a connection with the insurance companies or the pharmaceutical houses).
Doctors around the United States have the gall to tell patients dying of Lyme Disease that there is nothing wrong with them. They send them around the proverbial mulberry bush because they are bought out by the definitions of the NIH and the CDC about the Western Blot and ELISA tests.
Patients are sent to rheumatologists, neurologists, psychologists, hematologists, gastroenterologists … none of whom can find anything wrong with the patient NOT because they do not know what the problem is … but because they will lost their license if they treat a patient with “chronic Lyme” which defies the sanctions of the NIH and CDC Guidelines. Thus, these cowards are AFRAID to treat the patient and send them around the mulberry bush, wasting precious time, and letting the patient suffer a disease that CAN be controlled. ARE THEY WILLING TO TRY TO HELP THE PATIENT? NO! They are the cowards that are only interested in ONE THING AND ONE THING ALONE … TO COVER THEIR ASS!
Hail to the Cowards of Medicine … Pal Mal et. al. (that includes you, oh wise ass Lance!) — The only thing that MAY change their view on this matter is if their own kid gets it and they are faced with the option of letting that kid die in front of them for fear that helping the child will shake up their medical philosophy OR let the kid die. When that day comes, they WILL face a rude awakening and these words will ring in their ears … First, do harm! Amen oh cowards of medicine — will you save your child, or save your ass?
Lance — Are you really as ignorant as you sound?
Too Tired To Fight — Keep fighting sweetheart, and let’s ALL be THANKFUL that we don’t have these blockheads as our doctors!
These are the trash “doctors” who don’t even have real patients! LOL! LOOK AT WHAT THEY ARE DOING IN THEIR SPARE TIME!!! WOW … TALK ABOUT PATHETIC EXCUSES FOR “DOCTORS” … THEY HAVE NO PATIENTS, THEY HAVE NO LIFE OTHER THAN A COMPUTER BLOG THAT IS MEDIOCRE AT BEST, AND THEY PROBABLY PASSED MEDICAL SCHOOL WITH A GRADE OF D MINUS!
Mary,
I know all this controversy about Lyme disease is upsetting. All we want is a better test,(95%) correct,and more research into what is going on. All the antibiotics seem to do for a lot of patients is keep them funtional. It is clear that a majority of mainstream doctors are closed-minded about Lyme disease because this is what they’ve been taught. Most of them don’t have time to do a lot of research so they believe what they are taught in medical schools. I’m not making excuses for them, but this is what often happens. They also don’t want to get in the middle of a controversy. But we have had some very smart and brave doctors fight for Lyme victims. These guys on this site just seem to want to be obnoxious,they have offered no medical information only insults. They actually have the burden of proof because they have this site making these accusations,and that’s all they are,accusations. Our medical system is truly a mess ruled by the almighty $$$$!!!
I hope you’re feeling alright,let’s keep up the fight!!!
Emergence of Lyme arthritis after autologous chondrocyte transplantation—2004 Jan;50(1):259-64—Mariovits S,Khanakah G,Striessnig G,Vecsei V,Stanek G.—University of Vienna,Vienna,Austria:
We report herein the first known incidence of the emergence of borrelial arthritis following autologous chondrocyte transplantation for repair of a cartilage defect. The patient had no recent manifestation of Lyme borreliosis,but 15 years earlier had had an expanding erythematous lesion after a tick bite. The current infection resulted in massive joint swelling,elevated body temperature,dissemination of the graft,and transplant failure. Results of routine bacteriologic studies were negative. A diagnosis of Lyme arthritis was first considered following the detection of Borrelia-specific serum antibodies. Additional evidence was provided when borrelial DNA sequences were detected in the synovial fluid through polymerase chain reaction. The diagnosis was confirmed by culture of Borrelia burgdorferi from the synovial fluid. The possibility of a dormant borrelial infection should be considered in patients who undergo repair of cartilage defects with autologous chondrocyte transplantation. We recommend that synovial fluid and joint tissue be screened for the presence of viable Borrelia before transplantation of an autologous graft.
@Janis: Burden of proof: the person making a novel claim (new disease) must provide evidence of such. Again, it doesn’t mean what you think it means. Like all of the studies you cite. Here’s an exercise for you. Consider the difference between a person who *does* have a disease and a person who *doesn’t* have a disease, yet claims that they do. Until you grasp that concept, we’re wasting bandwidth.
@Mary: Nice ad hominems. Typical refuge of the incompetent.
And have you stopped molesting your children yet?
Again, if the tests are not reliable how can you say that a person is not infected? You see you really don’t know that!!! Chronic Lyme disease is not a new disease,the IDSA has been talking about it for years. It’s mentioned numerous times in their own studies. They renamed it post Lyme syndrome. You keep saying they don’t have Lyme disease,but people who were told that they didn’t have it,found out years later they did have it. You’re the one not understanding this concept. And you still haven’t answered my question about a negative test! Is there a such thing as a sero-negative test?
1. Patient contracts Lyme disease
2. Patient diagnosed late due to poor testing
3. Treatment starts
4. Patient feels somewhat better
5. Treatment stops
6. Antibiotics couldn’t reach or kill all bacteria,spirochete reverts to cyst form,becomes more entrenched
7. Weeks later patient becomes ill again
8. For most people treatment ends there
9. They continue to have symptoms and their test is repeatedly negative—This is called “Chronic Lyme Disease”!
Why are you so confident the patients you talk about aren’t infected? Are you only going by the blood tests? I have never met anyone diagnosed with chronic Lyme disease that didn’t have symptoms consistent with Lyme. I’m discussing people that have symptoms and other diseases have been ruled out. I’d like to see your original post!
Two-year evaluation of Borrelia burgdorferi culture and supplemental tests for definitive diagnosis of Lyme disease.—2005 Oct;43(10):5080-4—Coulter P,Lema C,Flayhart D,Linhardt AS,Aucott JN,Auwaerter PG,Dumler JS.—Divivion of Medical Microbiology,Department of Pathology,The John Hopkins University School of Medicine,Baltimore,MD:
Lyme disease is usually diagnosed and treated based on clinical manifestations. However,laboratory testing is useful for patients with confusing presentations and for validation of disease in clinical studies. Although cultivation of Borrelia burgdorferi is definitive,prior investigations have shown that no single test is optimal for Lyme disease diagnosis. We applied high-volume blood culture,skin biopsy culture,PCR,and serodiagnosis to a cohort of patients with suspected Lyme disease acquired in Maryland and southern Pennsylvania. The study was performed to confirm the relative utility of culture and to identify laboratory testing algorithms that will supplement clinical diagnosis. Overall, 30 of 86 patients(35%) were culture positive,whereas an additional 15 of 84 (18%) were seropositive only (51% total sero-and culture positive),and PCR on skin biopsy identified 4 additional patients who were neither culture nor seropositive. Among 49 laboratory test-positive patients,the highest sensitivity (100%) for diagnosis was obtained when culture,skin PCR,and serologic tests were used,although serologic testing with skin PCR was almost as sensitive (92%). Plasma PCR was infrequently positive and provided no additional diagnostic value. Although culture is definitive and has a relatively high sensitivity,the results required a mean of 3.5 weeks to recovery. The combination of acute-phase serology and skin PCR was 75% sensitive,offering a practical and relatively rapid alternative for confirming clinical impression. The full battery of tests could be useful for patients with confusing clinical signs or for providing strong laboratory support for clinical studies fo Lyme disease.
Janis Krause,
First off, the original post (OP) is the one at the very top of this page; it’s the one that PalMD wrote. If you don’t understand a particular term of internet slang, there’s no shame in asking for clarification.
Secondly, your post #178 describes a case which is entirely in line with the current knowledge of lyme disease. I don’t understand where you disagree with the OP. For this post, when talking about “chronic lyme disease”, we’re talking about four groups of people: “Group one is patient with protean symptoms and no evidence of infection. Group two is those who have real diseases misdiagnosed as Lyme. Groups 3 and 4 have evidence of actually having had Lyme infection in the past, but their symptoms aren’t necessarily consistent with actual Lyme infection.”
What you described were patients with partially treated lyme disease. They don’t fit into any of the four groups that the OP was talking about.
My question is what tests are being done? You say there is no evidence of infection in group 1 based on what? This site describes chronic Lyme disease as a fake disease, and the IDSA claim it doesn’t exist, although they use to use the term quite often. This site also says there is no such thing as a negative test. It also describes any doctor that would treat someone for chronic Lyme disease as a quack! It also states that a notion of lingering symptoms is absurd. Studies have shown that entrenched Lyme disease can be very difficult to treat,or if it can even be cured. It’s hard to believe that doctors are connected to this site. The insults and disparaging remarks made to people that are suffering is an outrage. That’s why a lot of these doctors are attacked,cause they talk to patients like this. Everyone that I know who has read the OP has drawn the same conclusions as I have. Thank you for at least being civil!
What is the difference between partially treated Lyme disease and a chronic infection? If patients are denied further treatment,which they are,then their disease is chronic. That’s the issue, the IDSA claims Lyme is easy to treat. If caught early it usually is, but if caught late it can be difficult to treat. If a patient can’t get treatment they remain ill. There is no test for cure! By the time these patients get to a doctor that will treat them the infection is deeply entrenched, or has reverted to a cyst form. The IDSA has left a large majority of patients ill by their guidelines. That’s way these patients have so much anger!
From the original post:
There’s no “disparaging remarks made to people that are suffering” in there. This is known as “projection”. You may want to look that up.
Entrenched, incompletely treated Lyme is a real concern. Nobody has disputed that. What we do dispute is some vague, nebulous “Chronic Lyme” bulltwaddle. You keep citing studies on the people who *have* Lyme, and ignoring that we’re discussing people who do *not* have Lyme and never did.
You long since edged over into “deliberately obtuse”, and are teetering on the edge of “seriously unhinged”.
Janis Krause,
This quote is from the article that the OP referenced:
“Despite resolution of the objective manifestations of infection after antibiotic treatment, a minority of patients have fatigue, musculoskeletal pain, difficulties with concentration or short-term memory, or all of these symptoms. In this article, we refer to these usually mild and self-limiting subjective symptoms as “postâLyme disease symptoms,” and if they last longer than 6 months, we call them “postâLyme disease syndrome.”
This group is separate from the four groups that I mentioned before.
Here’s another excerpt from the same source:
“The focus of this review, however, is not the objective manifestations of late Lyme disease but rather the imprecisely defined condition referred to as “chronic Lyme disease.” This term is used by a small number of practitioners (often self-designated as “Lyme-literate physicians”) to describe patients whom they believe have persistent B. burgdorferi infection, a condition they suggest requires long-term antibiotic treatment and may even be incurable.5 Although chronic Lyme disease clearly encompasses postâLyme disease syndrome, it also includes a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection.”
I hope that clears thing up for you.
My only reply to you Lance is I think you’ve seen Bill & Ted’s Bogus Journey too many times! I’ll reply to Clay tomorrow.
Clay,let’s take a good look at this—“Despite resolution of infection”—how do they know it’s resolved? I keep asking you what tests other than blood work is being done,the blood tests are unreliable. There is no test for cure! It seems odd to me to state a patients infection is resolved when they still have the same symptoms. And the patients left with symptoms after supposedly adequate treatment is not a minority. A lot of these patients were CDC positive,so there was no doubt as to whether they had Lyme disease. The IDSA’s guidelines are clearly not working! To refer to their symptoms as mild and self-limiting is an insult. Some people are bedridden! I think that both sides may be right. Some patients still do have Lyme and some may not. Which is worse,to treat someone who may not have Lyme or not treat someone that does have it? Where there is doubt a combination of oral antibiotics could be used. That’s why we need a more reliable test! And call it what you might,but continued symptoms are a chronic condition. The continuing symptoms of the people I know are consistent with Lyme disease. When these patients are truly examined and other tests are done very often infection of Borrelia is found. Look above at some of the studies! And again you keep saying “chronic Lyme disease” was coined by a small number of practitioners (LLMD’s),that’s not true,the IDSA coined that name. Look at all of the studies posted,even the Army describes acute and chronic Lyme disease. You still have not answered my question,is there a such thing as a sero-negative test? This site claims there isn’t! I’d like to see a list of the symptom complexes patients have for which there is no convincing evidence it’s due to B.burgdorferi. Most of the patients I’m discussing are denied a second chance or maybe longer of getting treatment. Entrenched Lyme disease is only a problem because of the IDSA’s guidelines. I keep posting these studies because the IDSA says this rarely happens,most people are cured in 28 days. That simply isn’t true,a lot of people are diagnosed late. Then when their 28 days of treatment is up,no matter how they feel,the majority of them are told they are cured. Their symptoms suddenly turns into post Lyme syndrome. It’s ridiculous!!!!
Bald assertions in the face of contrary evidence? Check.
Fake outrage? Check.
False equivalence? Check.
Deliberate refusal to discuss the actual argument? Check.
I think we’re done here. Or perhaps it’s time for another exciting round of Trollympics(tm)!
Janis Krause,
“Clay,let’s take a good look at this—“Despite resolution of infection”—how do they know it’s resolved?”
The quote was “Despite resolution of the objective manifestations of infection.” You can’t just remove words from a quote like that.
“To refer to their symptoms as mild and self-limiting is an insult.”
Again, the full quote was “usually mild and self-limiting subjective symptoms.” If you’re just going to make shit up about what I said, then I have no reason to continue this discussion. Goodbye.
And that ^^^ dear reader, is the PERFECT response to a denialist. Thank you, Clay for illustrating that so wonderfully.
Past a certain point, we realize that the denialist is not arguing honestly, and we simply refuse to engage. Some of us (who, ME?) choose to gently mock them, pour encourager les autres
I don’t know what your agenda is,but it’s certainly not to help patients. I twisted nothing! Anyone can go to post 184 and see the whole quote. The article you referenced stated that the infection had resolved,(it wouldn’t be called post Lyme syndrome if the infection was still there), and the IDSA does state that patients after this are left with just the aches and pains of everyday living. My question was if the tests are unreliable and there is no test for cure,how do you know their infection is resolved? You can’t answer that,and obviously you don’t want to answer my question about a sero-negative patient. You guys are bullies and offer no medical help to anyone dealing with Lyme disease. The IDSA has the same mindset and that’s why we have an epidemic of this disease. This site is a shame on our medical society!!
Shorter Trollclowngirl:
“Waah. You guys are mean!”
HOW TO SPOT A QUACK
1.The doctor will tell you,you couldn’t possibly have Lyme,(even with a attached deer tick and a bullseye rash.)
2.He’ll tell you that you don’t have Lyme even when your test repeatedly comes back positive (mistake at lab.)
3.He’ll tell you, you can’t walk because you’re lazy.
4.He’ll tell you the fever you have is from a current heat wave.
5.The doctor will tell you (in a endemic area) that it’s hard to catch.
6.He’ll tell you that it’s easy to cure (even though you’ve probably had it for years.)
7.He’ll belittle you and tell you you’re stupid or you’re faking your symptoms.
8.The doctor will tell you you’re cured when you still feel sick.
9.He’ll babble incoherent sayings like—whackos,headdesk,whack-a-loons,wow-the crazy is strong with this one,horse feathers,woo meter,yuppies,breast implants,its da chronic lyme woo disease,got me all sick,I cants admits its all in my hedz cuz I’m stupid crazy,GAAAAHHHHHHHHHH,blah,blah,blah,blah,STFU and troll-clown girl.
10.The word mentally ill will be used a lot (must be self conscious.)
11.Unscrupulous is used frequently (must feel guilty.)
When you see these signs run (if you can) don’t walk to the nearest LLMD!!!!!!!
Jeezus f’in christ! You guys are still at it???
@PalMD: Yup! Taunting the trolls is my second favorite thing. I keep hoping for at least a glimmer of understanding, but nothing so far… I had hope a couple dozen comments back… but it’s fading rapidly.
@Janis: English ain’t your native language, is it? I only ask because comprehension just doesn’t seem to be working here.
Wow! I just looked at the date on the original post! We’ve been going back and forth for just over a year!! Yay us!
Sorry… it’s a long, boring Friday afternoon here…
Janis, I’m going to step into this long enough to refer you back to one of the paragraphs in the original post.
I also point you towards the sentence:
“What is interesting about fake diseases is that there are people out there suffering, but without a clear diagnosis”
Here’s a thought I think you should explore.
There ARE unknown, uncharacterised diseases. People CAN BE truly ill with something that has no good, clear diagnosis.
The problem is, people really hate uncertainty. And hate not having a name for an issue even more. An illustration of this was when a relative of mine hadn’t been feeling well for months, and was finally diagnosed with advanced prostate cancer. His reaction? A sigh of relief; “at least I know what it is, now.”
But when people who may be really, truly, genuinely ill with an unknown or undiagnosed something, latch onto an inappropriate label, they aren’t really helping themselves.
Lyme disease is a real thing, the result of a real organism. If untreated, it has real long-term effects. The discussion above, however, centers around the fact that a humongously wide grab-bag of symptoms which have never been definitely shown to be associated with Lyme, and many occurring in people who have never actually been diagnosed as having the Lyme organism, are all getting crammed under this one dubious label. What if it’s NOT the Lyme organism causing it?
By insisting that it is, it IS, it IS dammit, all you are doing is getting the medical establishment busy arguing that no, it probably isn’t, because it doesn’t match the tangible things we can trace to this infection — and they have less inclination and less time to work on what the real cause of issues might be, given that it doesn’t match the signature of anything known.
And by giving the umbrella label of “chronic Lyme” to every undiagnosed symptom, it actually decreases credibility; how do you know this is all one thing? If person A has different symptoms than person B, and neither has a perfect overlap with the symptoms of person C, then have you considered the possibility that people A, B, and C have different underlying illnesses? There are enough unknowns or undiagnosables to go around, you know! But the problem with the chronic Lyme movement is that, once again, rather than push to find out what is behind something, having found an “answer”, the insistance is to make the medical community bow to that answer, regardless of whether it’s the right answer or not.
This kind of thing frustrates a lot of doctors because clinging to an inappropriate diagnosis frustrates real efforts at progress. And the more people insist that the real cause MUST be [insert inappropriate whatever here], the more doctors are genuinely going to be inclined to say, “no it’s not, you are imagining this and it’s all in your head.” Going in with the attitude “I don’t know what this is, but something is wrong and I want you to find out what it really is” is more disheartening for the patient, and still may not earn a sympathetic reception everywhere, but in the long term it IS how diseases get characterised.
Hi Luna,
I agree with you to a point. The people I’m discussiing are those we know had Lyme and never recovered. If you look at some of my posts I agree some people may be diagnosed with Lyme or chronic Lyme when they don’t have it. That’s why we need a better test so this can be resolved. Group 1 is with protean symptoms but no evidence of lyme, what is that based on? If only blood tests are being done then some people in this first group may have Lyme disease.The tests are unreliable. See that’s the problem, this site claims there is no such thing as a sero-negative test. That is untrue. If the test was reliable we wouldn’t be discussing this issue. You’re right people do want to know what they have, you can fight something better when you know what it is. But there are so many people I know that do have Lyme, CDC positive that didn’t get better. This disease is not handled very well,and the IDSA has not helped the situation by their stringent guidelines. Alot of people respond to further treatment and some don’t,these are problems that need to be addressed and they’re not. At this point the decision to have treatment when in doubt if you have Lyme, or have long-term treatment if you know you do have Lyme, should be a decision between the patient and the attending physician and not the IDSA or anyone else.
Lance — Ignorant ass of the so-called medical world — it is not I who is “molesting my children” — it is YOU. You are filth and do not deserve even a remote chance of understanding. And, God forbid, you EVER have your medical hands on my child. You are a monster who deserves to be exposed as such.
After sending children around the mulberry bush for months, claiming that untreated or ineffectively treated Lyme disease does not exist, YOU have caused not only undue harm to our children, you have committed insurance fraud by claiming to not “know” what the real problems are with our children.
As our children lie sick in bed and cannot lift their heads off the pillow, fools like you who THINK you are “doctors” play on the web with words that make you sound like ignorant monsters. But, then again, they don’t make you “seem” like ignorant monsters at all, do they. Because those words are merely a REFLECTION of WHO YOU REALLY ARE~ God bless you, good “doctor” , and may you get everything in this life that you truly deserve.
Wow. I seem to have touched a nerve!
You see, Miss Mary, the question you asked is known as the “Beating Your Wife” question. It is a question that *contains* the implied lie.
You and your ilk are the real abusers here. Subjecting children to untested, untried, *dangerous* treatments for a disease that doesn’t exist outside your own head. Munchausen by Proxy Syndrome? You are putting your kids at risk to satisfy your own sick need for attention.
“claiming that untreated or ineffectively treated Lyme disease does not exist”. Yet another lie. Nobody ever said that. If you were able to read past your
idiot glassesideological blinders, you would see that. But you would rather rant about things you do not understand, flinging ad hominems around like a screaming howler monkey.BTW, I’m not a doctor. I’m not sure where you got that particular delusion, but I’m pretty sure you should wash your hands after you put it back. Even poo-flinging monkeys know that much.
Connecticut passes chronic Lyme legislation: May 1,2009—In one of the cornerstone moments of Lyme disease politics over the last decade,the connecticut house of representatives passed a bill which allows physicians to diagnose chronic Lyme disease and treat it with long term antibiotics. According to the Connecticut Post: Thursday the state House of Representatives took a strong stand on the issue. In a 137-0 vote,members passed legislation to reassure doctors they will not face retaliation if they choose to diagnose chronic Lyme disease and treat it with long-term antibiotics. This will hopefully be the first domino to fall in what will likely turn out to be a series of wins for chronic Lyme treating physicians and patients. On post 178 I asked where the information on a subset of patients with persistant Lyme was, I can’t find it. On post 157 you stated that in the OP, it clearly states that some subset of patients who claim “Chronic Lyme” actually do have Lyme. And if a patient has not been treated adequately and continues to have symptoms and treatment stops, that’s the problem. Most patients cannot get further treatment and remain ill.
Wow. A legislative body with (mostly) no medical training passed a law to end something that never happened in the first place. I’m impressed. Will they start doing diagnosis via television, ala Frist?
Delusional, I tells ya.
There’s quite a few legislators that are doctors, do you really think no doctors were consulted? And being that you’re not a doctor doesn’t make your opinion mean much either! You’ve now vilified doctors who treat chronic Lyme,the patients who have it,and an entire state legislature for having the courage to guarantee patients rights!!!
Try to read for comprehension, please.
No doctor.
Anywhere.
Ever.
Has faced “retaliation”.
For treating Lyme with antibiotics.
Ever.
This is pointless, “feel good” legislation that does absolutely nothing and means less. Insurance companies are still going to refuse to pay for these unnecessary, expensive, and dangerous treatments.
Why don’t you go take an Adult Basic Education class and come back when you “learn to read good, and wanna learn to do other stuff good, too.”
According to the Connecticut Post: Thursday the state House of Representatives took a strong stand on the issue. In a 137-0 vote,members passed legislation to reassure doctors they will not face retaliation if they choose to diagnose chronic Lyme disease and treat it with long-term antibiotics. This will hopefully be the first domino to fall in what will likely turn out to be a series of wins for chronic Lyme treating physicians and patients. On post 178 I asked where the information on a subset of patients with persistant Lyme was, I can’t find it.
Any doctor that treats a patient longer than the recommended guidelines is subject to being brought before medical boards with the threat of his/or her license being revoked, why do you think Lyme patients and treating physicians wanted this law passed? It has already happened to some doctors. Wow, you really don’t know much about Lyme disease!
Luna – post 196,
I’ve been reading the information on this site and I was a little surprised by a couple of things you said in your reply to Janis. “But the problem with the chronic Lyme movement is that , once again , rather than find out what is behind something , having found an “answer” , the insistence is to make the medical community bow to that answer, regardless of whether it’s the right answer or not”. Quite the opposite is happening. The doctors who control the IDSA are trying to dictate to all doctors not to treat Lyme for more than 28 days. All Janis has kept saying is there needs to be a better test and more research. it seems to me that a lot of these patients are pushing for the same thing, more research , more reliable testing, and better treatment. Also groups 3 & 4 “have evidence of actually having had Lyme in the past , but their symptoms aren’t consistent with actual Lyme infection”. I’m curious too , as to what their symptoms are, being that Lyme disease can cause varied symptoms. Have any of these patients been checked for co-infections? And these doctors still haven’t answered the question about a negative test. In their OP are they saying there is no such thing as a negative test? I have also looked over the OP and I don’t see anything about persistent infection in some patients. Where is it? Maybe I’m not seeing it. Also in the OP it states : “Chronic Lyme disease is the name given by a diverse group of patients and physicians who have a common belief that a relatively common disease (just because it’s common means what?) can continue to cause debility long after the disease is gone.” Isn’t this what the IDSA also says when they describe post Lyme syndrome ? The IDSA claims the infection is gone but some patients continue to have symptoms. it seems to me that the mainstream doctors have closed a door on this disease , so a lot of these patients only recourse is to do what they’re doung ; advocate. Where would we be in medicine if AIDS patients hadn’t done the same thing?
The elusive Dutchman
Bullshit. Name three. I’m getting a little tired of arguing with someone who distorts, lies, and refuses to admit reality. This was fun for a while, but it’s getting a little tiresome.
@Dutchman: Not entirely accurate. What is *actually* happening in the cases we are discussing is that we *have* an answer, and the patients don’t want to hear it. So they doctor-shop until they find someone who is willing to tell them what they want to hear, while taking their money for treatments that are worthless and dangerous.
Advocate, yes, but stay within the confines of reality, please, or the medical community will laugh you out of the room.
1.Dr.Charles Ray Jones-New Haven Connecticut
2.Dr. Joseph J. Burrascano Jr.-East Hampton NY
3.Dr. Joseph Jemsek-North Carolina—and countless other doctors who have been harassed because of the IDSA!!!
Charles Ray Jones – prescribed medications over the phone for patients he had never met, and did not examine until two months later. Nothing to do with Lyme, other than that is his obsession, he’s just incompetent. Result? LIE.
Dr. Joseph J. Burrascano Jr. – appears to be doing very well for himself. Even testified before the Senate… what, did he stub his toe, and that’s persecution? Result? LIE.
Dr. Joseph Jemsek – *KILLED* people under his “care” through incompetence. At that, his license was placed on suspended probation for one year. Wow. That’s all you got? On top of all that, he’s in North Freaking Carolina!!! Which has absolutely fuckall to do with Connecticut’s limp-dick legislature. Result? LIE, OBFUSCATION, CONFUSION
In short, you lie. Constantly. And refuse to even listen to contrary information.
I think we’re done here.
Dr. Ray Jones had complete medical files on every patient he treated. Dr. Burrascano was forced to leave his practice due to all of the court hearings. How many people are KILLED in hospitals due to incompetance, and all of the drugs the FDA has approved. And to my knowledge Dr. Jemsek was brought before the medical boards for treating Lyme long-term. If I had listened to contrary information my son would have died!
June 16,2006–Lyme doctor Dr. Joseph Jesmek ruled guilty. The N.C. Medical board on Thursday suspended a Mecklenburg County physician’s license for one year after finding he departed from prevailing methods of treating Lyme disease. In other words he didn’t follow the IDSA’s guidelines! I couldn’t find anything about him causing a death due to his treatment of Lyme disease. If you have that information I’d like to see it.
April 23,2002–Dr. Joseph Burrascano,following hearing before the New York State OPMC on his medical treatments of Lyme patients,was placed on probation with a practice monitor. In other words he didn’t follow the IDSA’s guidelines. That’s why we needed this bill passed because a lot of doctors are afraid to go beyond the IDSA guidelines. Just because this bill was passed in Connecticut doesn’t mean it won’t be passed in other states!
Blah, blah, blah LIE. Blah, blah, blah, OBFUSCATE. Blah, blah, blah.
Did you take that class yet, or are you just wasting my evening?
Lance — I see. You are not a doctor. GOOD! Then you are only ranting about things YOU know nothing about. Why would we want to take the rantings of an idiot? Write about something you DO know … how to rip off hot air.
Wow. The hypocrisy is amazing.
“You have to listen to us! We’re not doctors, and we don’t actually know anything, but you have to listen!”
“You’re not a doctor? Then shut up!”
You can’t have it both ways, Mary PedoPagay.
I tend to agree, this thread is non-productive, and the complete disregard for the truth by the alleged sufferers of this non-existent disease is dramatically decreasing my sympathy.
It’s very clear the problem here is crankery, not a new disease. The treatments have been proven worthless, and it is very dangerous to be handing out IV antibiotics (cash only!) for non-existent diseases. Not only for patients but for society.
Thread is closed.