Slate has an interesting article about Romney campaign mailings that appear to contain buzzwords for chronic Lyme disease advocates in Virginia. Romney’s plan for Lyme disease includes these two points:
Ensure that government agencies have an open line of communication and work with patients, researchers, doctors, and businesses in an objective, comprehensive manner.
Encourage increased options for the treatment of Lyme Disease and provide local physicians with protection from lawsuits to ensure they can treat the disease with the aggressive antibiotics that are required.
Note the “aggressive antibiotics” line. This refers to a bogus medical practice of prescribing long courses of antibiotics, often in IV form, for “chronic Lyme” syndrome. While people can have chronic complications of actual Lyme disease, another, crankier disease entity has been promoted by irresponsible doctors who treat a syndrome similar to fibromyalgia, or chronic fatigue, or maybe even depression, with long-term IV antibiotics. These treatments are administered at their own clinics, usually without insurance paying for it (insurance companies can smell this BS and won’t cover it), at great expense because IV antibiotics cost a lot more to administer, and often without evidence of Lyme infection by tests or history.
This has been a season of bizarre political conspiracy mongering with everything from birtherism from Mitt Romney, Sheriff Joe’s craziness, magic Kenyan Telegrams, Aurora conspiracies, job numbers conspiracies, polling conspiracy theories from America’s least-accurate pollster Dick Morris, and my favorite Obama is buying bullets for the Social Security Administration to kill all Americans conspiracy theory. Now, rather than coming up with Obama conspiracies it looks like they’re trying to solicit vocal conspiracy theorists who think the pharma/CDC/infectious disease society illuminati are trying to suppress a bogus diagnosis their doctor has successfully treated by emptying out their wallets.
It’s very sad, really. People with a legitimate medical disorder, likely along a similar spectrum with fibromyalgia and chronic fatigue that have a disordered sense of pain perception, are being exploited by quack physicians who directly profit from a dangerous course of powerful antibiotics. Antibiotics are not benign drugs, and should not be used carelessly, as they too often are. And the non-evidence based used of megadoses of these drugs, often without any actual evidence of infection should result in a campaign to revoke these physicians’ licenses, not to solicit their votes by hinting at support of quack medical theories and protection of irresponsible physicians from liability. Is this a new all time low for a political campaign?
57 thoughts on “Conspiracy-targeted Campaigning from Romney”
Long term antibiotics (what you call quachery) abosolutely saved my life. Romney and other lawmakers along with the brave Drs. who treat persistant infections are on the right path and should be not only protected, but hailed as heroes. The evidence is mouting that the disseminated spirochetes live in the human body and need months or years of anitbiotics to get to the root od the problem and kill them all. On the other hand the studies that are the bases for the current guidlines are flawed and the length treatment needs to be left up to the phycian.
You really don’t know too much about “Lyme Disease,” do you Mark. Have you ever accessed the NIH’s Taxonomy database? Are you aware of what a spirochete is? If not, try to refrain from pretend science blogs.
Kathleen M. Dickson
This does not even register as reporting as a reporter is supposed to report the FACTS, not the lies and missinformation that has been disseminated for the past 20+ years. Modern research testing (nested enriched PCR and DNA vs Antibody testing) have made HUGE strides. It is well known Lymes is a cousin of Syphillis and has the way to evade the immune systems defenses by “cloaking” itself with outer surface proteins of our own cells. Antibody testing is almost worthless as your immune system is so far overtaxed spitting out any antibody it can to fight this. And it is also known through blebbing that fragmented DNA is “spit out” as well confusing the immune system even further.
This reporter does not even delve into co-infections of Babesia, Bartonella, Human Granuloma Ehrlichia, Infectious Mycoplasmas, Q Fever, Turalemia, Toxoplasmosis Gondii, Helminths and Filiarial worms. There have been upwards of 12 co-infections being found AS WELL AS fungal infections and Heavy Metal toxity/exposure/retention. These co-infections, either aquired slowly, or all at once, are devastating to a Mammalian hosts as they overwhelm the immune system and let the bacteria /Protozoans proliferate. Some grow at a fastidious rate, some of these bacteria divide EVERY 12 HOURS. And because these are INTRACELLULAR bacterial infections, the immune system which is already challenged, has an EXTREMELY hard time eliminating them.
Now let’s discuss Mycoplasmas, Q Fever (Coxellii Burnettii) and Bartonella. Infectious Mycoplasmas, be it Mycoplasma Fermentans-Incognitus, Mycoplasma Genitalium OR Myco Pnuemonea are very destructive to a human and have been found in Gulf War soldiers. Once returning home ill, the infections have been passed to family members through long term exposure or via birth. Only way to find this bacteria is in the Leukocytes. Mycoplasma fermentans-Incognitus strain is a co-factor in AIDS as it is a mutated Brucella bacterium inserted into the outer shell of the gene envelope, utilizing 60 % of that envelope. You will have all the symptoms of HIV/AIDS but never show positive since it is missing 2 proteins. No standard doc will ever pick this up because they are not educated in this manner AND Labcorp and Quest don’t offer a test for them. Q Fever is an extremely hardy bacteria that can exist on the ground for weeks, still being infective. One microbe can cause sytemic illness and a minimum 4 years antibiotic treatment w/ Macrolides (Doxycycline, etc). THAT is per the Borden Institute, US Army medical department, Ft Dietrich Maryland. Q Fever is listed as a “Class 2 Biological Weapon” because of it’s ability to infect as an aerosol or in a crystaline form. Bartonella, which USED to be thought of as “Cat Scratch Fever” and a self limiting illness, is NOW considered a MAJOR pathogen by Dr Ed Breitschwerdt at North Carolina State University. He has found the DNA in not only cat saliva, but dog saliva and EVEN human saliva. He has also found it passed from mother to newborn infant and between spouses/lovers. Do you see the ramifications of this?? This means sexual intercourse in humans can cause a CHRONIC INTRACELLULAR BACTERIAL INFECTION CONTRIBUTING TO BIRTH DEFECTS, AUTISM, ASD, CFS, NEUROLOGICAL DISSORDERS, ETC. Mycoplasmas and Q Fever can do the same.
I personally spoke to Gov Bob McDonald on a call in show and he informed me of his many friends in Loudon County that are ill with this. One family in particular has 5 children ill (FIVE!!!!) I have too many friends, spouses, military families that are suffering the EXACT same symptoms. And for you to trivialize this illness, and report regurgitated missinformation without you TRULY doing any research, it makes you look foolish and uninformed. I can only HOPE YOU contract this and be missdiagnosed with some “syndrome” for you to become fully aware of what is actually going on here..
Mark….someone really needs to smack you upside your head!, not to mention fire your sorry butt! You have no idea what your talking about when it comes to Lyme disease! Its more than obvious that you or anyone you love is not suffering from this disease or you might actually know what your talking about! Lyme DOES REQUIRE LONG TERM ANTIBIOTICS! and EVEN THEN…some people NEVER get completely well! It is a nasty, NASTY spirochete and is very stubborn, so ridding your body of it is no easy task! Its a smart bacteria that can hide when its being invaded by something trying to kill it! I could go on and on! But learn your facts before blogging, like Kathleen said…in pretend science blogs!!!
Mark, How dare you dismiss a disease that you know nothing about? Do you do the same thing to people with cancer? MS? ALS? What causes chronic fatigue and fibromyalgia? No one knows. They are syndromes that have been around about as long as lyme has been discovered. Shame on you. Do your research. Watch Under our Skin on http://www.hulu.com for free. Enlighten yourself.
I have read a lot of misinformed and dangerous articles about Lyme disease since this flyer was sent. There are studies that show that Lyme spirochetes persist despite antibiotics. Google the Embers monkey study.
Thousands of people are suffering because of misinformation like this irresponsible article is perpetuating. Yes, there are doctors out there just trying to make a buck but isn’t this true of most diseases? There are also many caring, compassionate, concerned doctors out there that are putting their medical licenses on the line to help people get better.
My son was bitten by a tick at the age of 2. I removed the tick from him and was told by our pediatrician to watch the area but that it was highly unlikely it would carry Lyme. The next day a bulls eye rash showed up. He was prescribed 30 days of Penicillin (the wrong drug for Lyme) and we were sent on our way with the assurance that all was well. Fast forward 2 years and suddenly I had an out of control child. A child who told me his brain shook. A child who was talking about suicide at age 6. A child who had pneumonia 6 times in one year. A child who had such a severe sinus infection that our allergy/asthma doctor didn’t understand how he was standing. We pursued so many different doctors trying to figure out what was wrong. He was diagnosed with anxiety and put on Zoloft at 5 years old. He was diagnosed with asthma. He had his adenoids removed. The final straw for us was when our Psychiatrist determined he was bi-polar and wanted to put our 6 year old on Lithium. I find it funny that had we chosen that route no one would have batted an eye. No one would have told us we were crazy or harming him by pumping him full of mind altering medication. Turns out our son has Lyme and Bartonella and is being successfully treated with long term antibiotics. On these antibiotics he is a different child. He is loving, sweet, and is able to accomplish his school work and play soccer. He no longer talks of killing himself. He is happy. Yet somehow by choosing to medicate him in a way that is actually helpful I am a crazy person or conspiracy theorist.
Aggressive antibiotics = bogus medical practice? I guess you’ve never had a child suffer from undiagnosed chronic Lyme disease, or watched a normal, productive individual fall from the top of their game to a debilitated state within a couple of years because of misdiagnosis. Sometimes these “aggressive antibiotics” are the only things giving hope and giving people their lives back.
For you to diminish the terms “Improve synergy” and “support treatment” as campaign buzzwords is mean-spirited for the sake of those who long for them. Do you think Virginia is the only state with Lyme disease problems?
Not too many years ago, MS was called the “Faker’s disease” because there was no evidence of a physical problem. Imagine the terror of being told you’re making it up, when you know you’re not…?
The CDC and NIH have the evidence for Lyme disease epidemic, the persistence of the bacteria, and the inadequacies of the currently available testing. So why the cover up? It’s sad, really… Government agencies with a disorder sense of health and medicine.
Thank you, Mark, for your refreshingly sane post about the Romney campaign’s misguided (and probably cynical, methinks) exploitation of the chronic Lyme controversy. For anyone needing a quick briefing on the facts, the Wikipedia entry on Lyme disease is actually quite good. Bottom line: a number of randomized, placebo-controlled trials have found that long term i.v. antibiotic treatment for chronic symptoms attributed to Lyme disease is ineffective and risky.
Bad journalism has fueled the chronic Lyme debacle for over a decade, and the nightmare continues. For a truly atrocious example, look at Laurie McClellan’s Washington Post article, “The doctor diagnosed chronic Lyme disease, but many experts say it doesn’t exist,” published March 5, 2012. [sorry – I don’t know how to do links.] Her logic is from the school of: “I am not a scientist, therefore I am free to believe that anecdotal cures prove the scientists are wrong.”
Yeah Mark, how could you get a MD and a PhD and not know more than the GoogleU graduates. Now that nested PCR with specially broad primers has found Lyme, XMRV and morgellons in new-born Inuits your should be working on a cure, and not making fun of conspiracy mongers.
I would invite you to watch the movie “Under Our Skin”. It is free on http://www.hulu.com. I, too was “ignoramous” as you. Yes… my own word. After my own son came down with it, then watching this movie, and doing research. My eyes finally opened. Oh, and by the way people. There are 300 chronic diseases caused by Lyme… MS, ALS, chronic fatigue syndrome, Parkinsons Diseases, fibromyalgia… just to name a few… they have been proven to be caused by Lyme. Doctors are being told this at medical conferences but some refuse to believe it when they even have the peer review studies right in front of them. My son almost died not once but twice from this disease. Researchers are finding that most people have the disease but there are “triggers” that are making symptoms come out. Mold in the home can trigger it, stress can trigger it… such as a death, money problems, etc. Just because YOU can’t see it, doesn’t mean it doesn’t exist. Please watch the movie. You will not “get it, until you get it”… then and only then, will you understand it and then you will be coming to us for help!
If I would have listened to people like you , my 12yr old would have been institutionalized or at the very least living with severe mental illness for the rest of her life. She is now a happy, functioning, straight A kid, living life to the fullest! All thanks to the brave souls who risk their livelihoods, on behalf of the kids and adults suffering with lyme .
The lyme community is growing at a rapid pace because lyme is spreading every where. Thank God for all who stand up and speak out about Lyme.
More propaganda Mark. Your no journalist that’s for sure. For if you were you would have done some BASIC research. This blog is so pathetic it baffles the mind. Denialism as debate? You seem to have forgotten the debate part. We’re you paid for this garbage or is your opinion free? Because there is absolutely no science in anything you wrote. This is the kind of damaging bullshit that hurts people Mark. It adds more fuel to ignorance. And for that you should be fired.
I know that graduating from medical school gives you people an inflated ego. Wanna know how I know, I was in medical school and couldn’t finish due to Lyme disease and coinfections. I also know how much cheating goes on so a great number of you graduate with the claim of having learned things you did not. There is a reason why medical drs. Specialize, you are a surgeon not a specialist in biofilms, infectious disease, or Lyme. Learn your place, all you are capable of is removing parts of the body, not making people well. This is very real, I was first diagnosed with fibromyalgia, then when they found overwhelming active viruses they added chronic fatigue. They offered me nothing, no treatment and no explanation of what was causing this. This is all dispite my going to the health department at the onset of the disease, which started with a tick bite and a rash, not to mention the intense pain and exhaustion. If indeed i have ever been depreesed since the tick bite it is because Drs. Are cruel and very unhelpful, not to mention stupid. They refused to even consider testing me for lyme which would have been the responsable thing to do. I am not impressed with you, or modern medicine. You are not God you do not know everything. By the way I did test positive for Lyme six years later when I finally found a real Dr. Unlike yourself. I hope that you study, you learn and you stop spouting crap and if you can’t learn the easy way I hope you get Lyme and coinfections. (all it takes is one bite from the right tick) That is why many Drs. Treat chronic Lyme. They became believers when they themselves contracted it. and on their search to get well they discovered real science that supported it. That helped them and their families function and get well. Do some research before you write.
Awww poor babies…..It al be au rite.
Just keep taking your dope like good little goyim cos’ it al aw be over soon….
I disagree with your statement that long term antibiotics are a bogus treatment.
They saved my life. I too tested positive for Lyme Disease and did not improve on a short course. IV Vancomycin played a very significant role in my improvements and then multiple years of Tetracycline and Doxycycline by mouth followed.
Bottom-line, persistent infection exists.
Interesting, suggestions of violence, insulting surgery, conspiracy theories about the NIH and CDC, and you think this helps make the case for a rational basis for the abuse of IV antibiotics?
For people who are interested in legitimate information see the CDC recommendations for post lyme disease syndrome, the evidence of controlled trials showing failure of long term antibiotics to perform better than placebo, or this trial showing only mild improvements in fatigue scores – but accompanied by hospitalizations from complications of the treatment. The researchers ultimately concluded the benefits did not outweigh the risks. Slate has an amusing article addressing the conspiracy theories raised by “Under Our Skin” from an actual infectious disease expert.
Now, for those of you suggesting that I’m questioning that there is some disease entity here, I am not. There is a post-treatment lyme syndrome. There is also overlap between these syndromes and other rheumatic diagnoses. The symptoms are real, the diagnoses and recommended treatments are bogus. What I’m questioning, is the ethics and safety of prescribing long term antibiotics when there is no evidence of efficacy. Medicine has not figured these things out yet, and that’s when quacks step in and start offering miracle cures.
Yikes! Reading over the comments thus far, I must say you’re a brave man to expose yourself to such abuse. Some of your respondents are undoubtedly sincere and well-intentioned. Others…not so much? One common theme that I see is a confusion of the complex issues involving the course and complications of Lyme infection with the straightforward question of whether long-term antibiotic therapy has been demonstrated to be safe and effective. It hasn’t.
All you people including Drs. who do not believe in treating disemminated Lyme disease with long term anibiotics are close minded and have to much pride to admit you are wrong and your studies are flawed.
Until you are in my shoes with late stage Lyme disease and it was life or death and the IDSA was turning me away and could do nothing for me yet a Lyme Literate Internist took me in and saved my life by sticking by my side through all the herxing while on longterm antibiotics then you will become a believer. Sort through the studies that shun lonterm anibiotics by the IDSA and they are seriousely flawed. So stay closed minded and you/we will get nowhere. It is the Scientists/Doctors/Politicians with open minds that find solutions.
“The symptoms are real, the diagnoses and recommended treatments are bogus. What I’m questioning, is the ethics and safety of prescribing long term antibiotics when there is no evidence of efficacy.”
I will use my son and his story as an example. I have posted it in a comment above. What are the ethics an safety of prescribing bi-polar meds to a 5 year old who does not have bi-polar? I can’t even imagine the damage I would have done to my boy had I filled that prescription. What are the ethics and safety of allowing a child to suffer when there is a treatment available to make them well?
If you were looking at a child who was both physically and emotionally sick what are you to do? A child you know he was bitten by a tick, contracted Lyme, was treated for 30 days with the wrong antibiotic, and is now showing neurologic symptoms of Lyme. Psych meds are of course the answer then right because surely it must all be in his head?
My sons diagnosis of Lyme and Bartonella and pursuant treatment is not bogus. They are the reason I have a healthy, happy, non-suicidal 9 year old on my hands. They are the reason he will be able to, hopefully, lead a happy life and be a productive member of society. Across the board dismissal of a treatment plan when there is so much unknown about the disease is irresponsible at best. As I stated in my previous post there are studies that show persistence of the Lyme spirochete despite antibiotic treatment.
The people suffering are real. They have been dismissed by numerous doctors, told they are depressed and need meds, or diagnosed with any number of diseases they don’t have. Reading articles like this just rubs salt in the wounds.
Medicaid and Medicare has paid for all my treatment including my IV and home nurses for 2 yrs with no problems plus I have a JUDGE, hear me, Judge’s full decision, full detailed decision. Why, because I have 6 inches of medical records, positive lyme disease tests from blood tests to spinal fluid tests. Why? Cause it was in my BRAIN!!!!! Along with other tick borne diseases including Babesiosis, which you probably do not know what that is. Why? Because you have not done the research. Doesn’t that mean the government supports my lyme disease? Oh yeah, guess what. I got so much better thanks to my LLMD. Ignorance is bliss. Enough said.
You are right, long term IV antibiotics can be very dangerous. I have friends who are doctors and would get upset when patients would come to them and want antibiotics just for a cold. I was brought up in that thinking as well. Every year our newspaper had an article, as it still does, stating that you get your antibiotics for Lyme and you are good to go. Even regular practitioners are finding that that is not what is happening. My son had flu symptoms and it was dismissed as a virus. He then started having weird and strange symptoms. His eyes were becoming more sensitive to light. He could not catch his breath. He quickly became fatigued. He had no energy any more. He just wanted to sleep all the time. We could not see anything wrong with him. We could not figure it out. He became worse and worse. I quickly realized he may have Lyme since he had been bit in the spring. They tested him but only gave him 7 days of antibiotics. They called a few days later and said he tested positive for Lyme and hung up. They acted like it was nothing. As soon as the antibiotics ran out, his symptoms quickly came back. I took him back in and they said, “Oh, it wasn’t Lyme. He has Rocky Mountain Spotted Fever. I don’t know what this is.” We were sent to a neurologist. The neurologist even stated that he didn’t know why our doctor sent us there. He sent us on to an infectious disease doctor. I thought… like you… we were in good hands. He had a piccline put in but in 28 days it was pulled. In four months, his symptoms quickly came back. I understand your hesitance and resistance against long term IV but when he relapsed, it came back worse than ever. I even told the ID specialist that he wasn’t better and that he still had symptoms. He assured me he would be better in a year that it is part of it. Please be open minded. Look at the other side. They have proven over and over and time and time again that long term IV therapy does work. You have to know what you are doing. The only thing given to my son besides the antibiotic was a probiotic and that’s it. A LLMD will give you other supplements and supplements to break up the cysts and biofilms that long term antibiotics create. The bacteria knows how to hide and transform itself. All of this has been proven. They have their studies too. You just don’t want to believe it. Once we found a LLMD, our son is better and is better than ever. He has been on long term antibiotics for 6 months now. And no, LLMD’s do not just quickly put a patient on a piccline. My son had been put on doxycycline but it did nothing for him. He just became worse and worse. He could no longer walk, talk and incoherent. Please excuse the other remarks…. they are very sick. They are tired of being ignored. You won’t understand this until you get it or a member of your family. That’s how so many of these doctors become LLMD’s because they got it themselves or a member of their family. All we are asking is that you look at both sides…. Please… just watch the movie. As long as you have the attitude that you have, you will never be a great physician. You have no compassion whatsoever and patients will see that.
I would say that watching your child quickly recover from mental illness is proof that the antibiotics work. We watched marked improvement every single week. We never saw a bullseye. We took the Elise test and it was negative. We then took a more sensitive test and it was so positive that the CDC called…This child was tested for everything under the sun before hand, and all the doctors wanted to just write her off with psych drugs. Long term antibiotics gave my child her life back. That is my proof. Real life~
The writer is obviously not keeping up with current events. The IDSA contention that there is no such thing as chronic Lyme, and that Lyme is hard to get and easy to cure is falling like a house of cards. The recent Embers study proves persistence of live spirochetes after IDSA recommended treatment. Live spirochetes, whether Borellia or syphilis spirochetes, mean continued active infection. If your symptoms continue, and you continue to have live spirochetes, you have chronic infection.
Furthermore, the recent review by Brown University of the Klempner study which purported to show no benefit from continued antibiotic treatment, has been found to be seriously flawed. If anything, Klempner shows the patients were not treated long enough.
The ignorance displayed by the writer, and the medical community in general, is responsible for the public health disaster that is Lyme Disease.
Does the name Warren & Marshall ring a bell?
The entire medical establishment pooh-poohed them when the proved that H. Pylori bacteria causes stomach ulcers!
Guess what? They were awarded the NOBEL PRIZE in medicine?
What did Michelson’s boss tell him? Not to waste any time on those silly experiments!
Guess what? His experiment laid the foundations of the Theory of Relativity!
My two cents,
Richard Feynman Fan
Do you have some studies that actually show that “disordered sense of pain perception” in CFS patients? And is this “disordered” sense (or is it “disordered” perception?) central or peripheral? Or is that tortured piece of language (a sense of perception? really?), is it all just code for “somatoform disorder”? And you do know of the studies of Alan Light, that show changes in gene expression of peripheral blood cells?
And quite frankly, with the “next generation sequencing” (don’t ya just love buzz-words?) study by Ian Lipkin coming up, I would at the moment be careful to make such definitive statements about an so far poorly studied syndrome.
From the few reliable studies out there so far, I would venture that there are *at least* two distinct (novel and/or poorly understood) illnesses/diseases hiding under the CFS label, plus somewhere between a fifth and a third of CFS patients that actually have some other (already known) illness/disease. And IMHO the high number of people “misdiagnosed” with CFS (if you can say this for a catch-all syndrome) should make one wary to make definitive statements that will affect all people diagnosed with CFS, whether “rightly” or wrongly.
(Other than that, I would agree that “chronic Lyme” has not been demonstrated to be actually caused by Lyme, that the anti-biotic regime has not been shown to do any good and is irresponsible quack BS. Furthermore I think that many/most “Chronic Lyme” sufferers may most likely form an subset of ME/CFS – however until we have definitive tests and a better understanding of the underlying pathologies this is all speculation.)
i should have included “fatigue” as well as pain in that generalization. See the linked study for a discussion.
Don’t bash the Lyme community, Bucko. You haven’t been in our shoes. Chronic Lyme does exist. Just because the good ole boys at the IDSA and CDC say contrary, don’t make it so, honey pie. If they weren’t sleeping with Big Pharma and Big brother, they’d have a different stand.
And to add a quote about the hints to the multitude of etiologies of CFS:
“The most important finding was that 103 (40%) of patients seen by the Newcastle Service could in fact be diagnosed with other conditions. As the Figure opposite shows, the most common alternative diagnosis in these patients was fatigue associated with a chronic disease (47% of all alternative diagnoses …). The next common alternative diagnosis was primary sleep disorder (20%), including 8 patients with obstructive sleep apnoea and 12 with another primary sleep disorder – an important finding since sleep disorders form a significant and potentially treatable diagnostic group. Furthermore, 15% of all alternative diagnoses were psychological/psychiatric illnesses (most commonly, depression, anxiety and post-traumatic stress disorder); 13% were “unexplained” but not ME/CFS (5.2% of total referrals); and 4% were cardiovascular disorders (vasovagal syncope in patients with fatigue symptoms, who also had a history of episodes of loss of consciousness, with the diagnosis made after a reproduction of symptoms in head-up tilt testing). [Other conditions included metabolic syndrome and coeliac disease.]
Prof. Newton’s results concur with those from two smaller service audits (Dundee 1993; Newcastle 2007), and reiterate that a significant minority of UK patients referred from primary care with a diagnosis of ME/ CFS can receive alternative, exclusionary diagnoses if investigated at a specialist clinic.”
And as to my “*at least* two distinct illnesses/diseases” statement: I think Alan Lights studies provide good hints for that.
CFS? But what of all the people commenting here who claim it to be psychiatric?
It’s interesting that so many angry responses arrived nearly simultaneously, as though they were coordinated, on a blog which is all too seldom updated. Could it actually be that all these sufferers check Denialism day after day in the vain hope of a new posting?
Nah,they just have Google alerts so they can storm any page that criticizes them with anecdotes and personal abuse.
Mark, can you at least answer as to why anyone would bash any disease? Questioning people’s suffering? NO other disease has such hacks taken at it. I mean really? Speaking I’ll of others suffering. You know it’s a very controversial issue. Yet you have nothing to add. Just name calling and outdated politically driven research. It just makes no sence. Why not pick on the handicapped or fat people? That would be politically incorrect. But Lyme is fair game? Have you treated anyone? Do you have extensive knowledge? Why not use your skills to question why there is such a landslide of sick people? We all can’t be crazy.
The very 4 studies which are used today to deny Lyme patients long term treatment are flawed and we all know why.
The Embers study referenced above by Paul Cayer does show intriguing evidence for survival of Borrelia spirochetes after antibiotic treatment 9not of humans infected by tick bites, but of monkeys that were artificially inoculated with the pathogen.) Whether these surviving organisms are clinically significant is yet to be determined. The authors note: “The most pressing question in terms of human disease is whether or not spirochetes remain pathogenic after antimicrobial therapy. Similarly, do spirochetes persist long-term, or are they eventually cleared by the host? …Whether persistent spirochetes or spirochetal antigen can cause PTLDS [post-treatment Lyme disease syndrome] remains unanswered.”
The results of the Embers study point to potentially fruitful areas for further research. They do not provide any basis for changing current treatment guidelines.
If you evaluate my statements I am not bashing the disease, I’m bashing non-evidence based treatments for what is likely in incorrect diagnosis in the first place. It’s easier to attack a straw man, I realize.
If you recall I said, “It’s very sad, really. People with a legitimate medical disorder, likely along a similar spectrum with fibromyalgia and chronic fatigue that have a disordered sense of pain perception, are being exploited by quack physicians who directly profit from a dangerous course of powerful antibiotics. ”
I legitimized and sympathized with your suffering, but disagreed that there is evidence for this specific diagnosis, and certainly for the disease treatment. Especially in the context I described which is the frequent treatment of people for “chronic lyme” who don’t have molecular or historical evidence of infection. Another straw man.
Didn’t say you were. I said the doctors that treat this with antibiotics in the absence of evidence, at great expense, and great risk, are quacks. I’m attacking the quacks, not those that suffer from these symptoms. Although I do find the response from advocates to be dismal. Between ad hominem attacks, calls for violence against me, and straw man misrepresentations of what I say, you make it hard to remain sympathetic. I will anyway, because I realize it’s the pain and desperation that engenders the behavior, rather than malice.
Meine von einem Neurologieprofessor und angeblichen Borreliose-Spezialisten gestellte Diagnose „Post Lyme Syndrom“ und seiner Aussage nach folgende „geringfügige Befindlichkeitsstörungen (!)“ sehen so aus:
Rasende tagelange Kopfschmerzen
Extremer Schwindel (meine Umwelt ist flüssig)
Kämpfe gegen eine ständig drohende Ohnmacht an
Bewusstlosigkeiten (3 Mal)
Steifer Nacken und Schultern
Heftige Magenschmerzen (bis zum Erbrechen)
Blasenschwäche (2-3 Mal nächtliches Aufstehen)
Blasenentleerungsstörungen (nur in warmem Badewasser möglich)
Heftige Durchfallattacken (in den unmöglichsten Situationen)
Nächtliches Herzstolpern mit Atemaussetzer
Gefühl von eng geschnürtem Gürtel um den Brustkorb
Geräuschempfindlichkeit (wie Stiche im Magen)
11/2 Jahre Lidzuckungen im re. Auge
Sprachstörungen (verlangsamtes Sprechen)
Probleme mit der Uhr
Sehr schmerzhafte Stromstöße in Arme und Beine
Nervenschmerzen in Füße und Finger
Kribbeln am ganzen Körper
Auch wir Borreliose-Patienten in Deutschland leiden massiv unter dieser furchtbaren aggressiven Infektion die unser Leben zerstört. Wir müssen um Diagnosen, Therapien und Anerkennung dieser Erkrankung kämpfen, die uns unsere Würde und unser Leben nimmt. Auch unsere Spezialisten werden immer wieder von Regressen der Versicherungen bedroht. Es wird endlich Zeit, dass die Wahrheit ans Licht kommt. Weltweit gehen die Borreliose-Patienten an die Öffentlichkeit um auf die furchtbaren Missstände aufmerksam zu machen! Borreliose tötet nicht, sie nimmt das Leben.
Mark – cheers! Please post more articles on Lyme and/or stuff like the “rife devices”. I find the cranks these articles bring to the comments ultimately entertaining.
Mark – jeers! Please avoid the boring political rants. There’s enough of that all over the Internet for people so inclined.
Oh my! That was interesting, but back to the actual post…
Romney is from Utah–a major producer of supplements. I also read (NYTimes–just a passing reference in a long article) that Ann Romney does reflexology (among other things, including standard treatment as far as I know) for her MS.
Romney is likely a friend of Orrin Hatch, who along with Tom Harkin is largely responsible for the disaster of legislation known as DSHEA.
Hence, it doesn’t much surprise me that Romney would be a user of and avid supporter of all manner of quackery, in which I include the use of supplements not prescribed or recommended by an MD–and nowadays I have to further clarify that by saying an MD that doesn’t dabble in quackery.
Nevertheless, it is appalling that a candidate for President would meddle with the democratic process in this way–even if it were true that long-term antibiotics help the symptoms referred as “chronic Lyme”, this targeted mailing would hardly the way to go about dealing with the situation.
Straw Man! You guys can all get out of here with your fallacious arguments. You tell them, Mark! 😀 Romney supports a pretty penny, and I didn’t look that up in Wikipedia to know that. Mark is not saying cut out long-term IV treatments when some people obviously need it. Where the heck did most of you read that? Go home to your children instead of trying to change the opinion of an educated man.
And as a follow-up, a recently posted talk by Christopher R. Snell titled “Clinical exercise testing in CFS/ME research and treatment”
Christopher Snell is finding not problems in the “sense” or “perception” in ME/CFS patients, but an significant and objective measurable decrease in VO2 max capacity and exercise tolerance.
And these pathological changes can not be explained through detraining or sedentary behavior of patients, as he is several times during the talk quite explicit that his research group used sedentary controls.
Furthermore, while Prof. Snell lists a few (quite diverse) suspected etiologies that are discussed by other researcher, he is quite careful that he has no opinion on these. So unless someone has objective measurements to back up claims, I would advise anybody to not be too quick with judgements (and I guess you don’t need to be Kahneman to see that some research fields are, well, aehm, how to put it, more “messy” than others).
I have to recommend his talk to anybody who has fuzzy views on “CFS patient perception” vs. “CFS patient reality”.
http://en.wikipedia.org/wiki/Mark_Hoofnagle Is this you ?
Mark, you need to do a lot more research before expressing these views. For instance, check out AVMA.org or the site of the American Vet Med Assoc to see their guidelines for diseases in hunters and you will see a myriad of pathogens that can be picked up outdoors. Each one of those pathogens requires different antibiotics and within each type of Babesia, there are various strains that are susceptible and resistant to different medications. Borrelia afzelli, garinii, burgdorferi, miyamotio all respond to different antibiotics. Babesial strains, Bartonella, Ehrlichia chaffeensis, Rickettsia helvetica, Rickettsia sibirica, Rocky Mountain Spotted Fever, Anaplasma phagocytophilum, Mycoplasmas, Chlamydias, all require differing medications. IDSA physicians do not even know the pathogens involved. Much research abounds on the myriad of pathogens injected from ticks. Brucella, Coxiella burnetti or Q fever, Chlamydias and Mycoplasmas are all known CHRONIC infections. Check out e-medicine on how hard it is to eradicate mycoplasmal infections. Each one of the intracellular pathogens has a novel way of crippling the immune system. Thai and Taiwanese people are showing up with non HIV AIDS. They allegedly have autoantibodies to a cytokine blocking interferon gamma. Lyme patients are showing up with the opportuntistic infections as well as AIDS patients. You really need to do some research for lyme patients are sick of STUPID people !!
Your VeterinarianPet CareEmergency CareAnimal WelfareVeterinary CareersPublic HealthPage Content
Disease precautions for hunters
June 14, 2010
This paper is intended to be a general guide about diseases that hunters and their hunting dogs may encounter. Links to additional information have been provided where appropriate. Hunters should always consult their physician if they are concerned they have been exposed to a disease or are showing symptoms of illness. If there are any concerns that your hunting dog or any other companion animal may have contracted any of these diseases, please contact your veterinarian.
Protecting Hunters from Risk: Some Common Sense Guidelines
· Avian Influenza
· Campylobacteriosis (Campylobacter jejuni)
· Chronic Wasting Disease (CWD)
· Deer Parapoxvirus
· Hydatid Tapeworms (Echinococcosis)
· Equine Encephalitis Viruses
· Escherichia coli Infection (E. coli)
· Lyme Disease (Lyme borreliosis)
· Q fever
· Raccoon Roundworm (Baylisascaris procyonis)
· Rocky Mountain Spotted Fever (tick-borne typhus fever) and other spotted fevers
· Salmonellosis (Salmonella species)
· Sarcoptic mange
· Trichinellosis (trichinosis)
· West Nile Virus
Specific Risks Associated with International Hunting
· Crimean Congo hemorrhagic fever
· Rift Valley Fever virus
There is an increasing awareness among hunters that there are medical risks associated with handling wildlife, and certain safety precautions should be taken. The American Veterinary Medical Association (AVMA) has the following advice on certain health concerns linked to hunting, both in North America and in other areas of the world. This document is by no means intended to discourage people from hunting; instead, it is intended to inform hunters of the risks they face and steps they can take to reduce those risks.
Hunters and their dogs can be exposed to infectious diseases not only from infected animals, but also via insect vectors and contaminated soil and water. Diseases that are transmitted from animals to humans, either through direct contact with the animal or a contaminated surface or water, through ingestion of animal products (including meat and milk) or through insect transmission from an animal are called zoonotic (pronounced ZO-oh-NOT-ik or zoo-NOT-ik) diseases. Insects such as mosquitoes, ticks, flies, fleas or mites serve as vectors, capable of transmitting infection from an infected animal to another animal or a person.
Protecting Hunters from Risk: Some Common Sense Guidelines
Take a good look at this list Mark. You think that one dose of doxy is going to eradicate these infections ?
Wien Klin Wochenschr. 2003;115 Suppl 3:61-7.
[Sero-epidemiological studies of zoonotic infections in hunters–comparative analysis with veterinarians, farmers, and abattoir workers].
[Article in German]
Deutz A, Fuchs K, Nowotny N, Auer H, Schuller W, Stünzner D, Aspöck H, Kerbl U, Köfer J.
Fachabteilung 8C – Veterinärwesen beim Amt der Steiermärkischen Landesregierung, Graz. firstname.lastname@example.org
The aim of this study was to investigate seroprevalences to zoonotic pathogens in hunters, to compare the results with other predisposed occupational groups already investigated and to propose preventive measures. Blood samples were taken from 146 male and 3 female hunters from the provinces of Styria and Burgenland in the south-east of Austria and anamnestic data were obtained using a questionnaire. The serological investigations included the following bacterial, viral and parasitic zoonotic agents or zoonoses, respectively (antibody prevalence rates in brackets): borreliosis (IgG 42%, IgM 7%), brucellosis (1%), chlamydiosis (3%), ehrlichiosis (IgG 15%, IgM 3%), leptospirosis (10%), tularaemia (3%), Q fever (0%), encephalomyocarditis virus (EMCV, 15%), Puumala-Hantavirus (10%), Newcastle Disease virus (4%), Echinococcus multilocularis/E. granulosus (5%/11%), toxocariasis (17%). Particularly striking in comparison with the control group and the veterinarians, farmers and slaughterhouse workers examined in earlier projects were the high seroprevalences to Borrelia burgdorferi sensu lato, Ehrlichia spp., Leptospira interrogans, E. granulosus and E. multilocularis, encephalomyocarditis, Puumala-Hantavirus and Newcastle Disease virus as well as to Brucella abortus and Francisella tularensis. The present study indicates that hunters are especially exposed to zoonotic pathogens.
‘Lymies…I would get all these tests…Western Blot for Borrelia, also test for Borrelia hermsii, and Babesia duncani and microti and Quest can test for duncani, Bartonella henselae and quintana, Brucella, Tularemia, Coxiella burnetti or Q fever, many rickettsias ie Rocky Mountain Spotted Fever, Typhus, Ehrlichia, Anaplasma phagocytophilum, EBV, CMV, all Coxsackie viruses, and now Powassan virus and its cousin Deer Tick Virus, HSV 1 and 2, HHV 1-8 if available. Parvovirus B -19 papillomaviruses, Toxoplasmosis, Chlamydias and Mycoplasmas and get genetic tests for hypercoagulation like Mthfr and Factor V leiden, and test all your IgG subclasses 1-4, and CD 57 and C3a and C4a and CBS mutations and HPU/KPU and mold testing since so many of us have issues with mold. ECP or eoisonophil cationic protein seems to suggest to docs that you have babesia. Also transfer growth factor b-1 and Beta Strep. High CD 57 counts may be associated with Beta Strep. Heavy metals have a part in this and we are low in Secosteroid D or vitamin D and some are low in Potassium and others iron. Many are deficient in all amino acids. Our hormones are a mess and the whole HPA Hypothalmic pituitary axis is the problem. We can have probs with our adrenals and thryoid…we do not convert T4 to T3 and in my case I have high reverse T3 or rT3. We are quite low in testosterone as well. Check out every hormone in your body, amino acids and vitamins and minerals. There are over 100 viruses we can get from a tick and also many parasites. The labs that insurance covers can’t find a parasite when we can see it under the microscope. Quest at Nichols Institute in Valencia California can culture samples and might even be able to distinguish Brucella suis from melitensis or arbortus. We also need an MRI of our brain with and without contrast. Many lymies are showing up with pituitary adenomas and pheomchromocytomas. Make sure that you do not have these. I have spent years trying to figure out what is in us and so far this is what I have seen. Unfortunately when your physician may take years to order all the necessary tests. Make sure you get tested sooner rather than later. One more thing …..you may get tested for Brucella today and 2 years from now may show up IgM positive. The immune system is overwhelmed with all these pathogens.
Just one article on how Coxiella burnetti evades immune system. Q fever is a known chronic infection and one lyme patients are showing up positive to Q fever.
Here is an interesting tidibit…lyme patients build no antibodies to 14 serotypes of pneumonia. Amy, your son having pneumonia 6 times in one year is repeated in many lyme patients. Why not ask the brilliant Mark Hoofnagle to explain why this is happening. Also he might explain why lyme patients are showing up with all the opportunistic infections of AIDS patients ? Many lyme patients have autoimmune diseases and one AI leads the way to more AI diseases. What role are adjuvants in vaccines playing in autoimmune conditions ? How do you eradicate intracellular pathogens that are known chronic infections ? Some pathogens interfere with production of nitric oxide and others are blocking interferon gamma. How does one eradicate Brucella or Q fever or Mycoplasmas ? E medcine has stated that you may need IVIG plus IV antibiotics plus specific anti sera and then it will most likely relapse. Only 3 labs in America can test for a few mycoplasmas. We do not have testing that can pick up European tick borne diseases here in America. Candiatatus neo ehrlichia mikurensis. may not show up on any tests that we have. Candidatus Bartonella Mayotiomenisis also did not show up on testing as well.
Thank Goodness for Romney, for Richard Blumenthal and for many LLMD’s who truly understand this complex disease and how to treat it. This is really just a political disease right now, no one seems to want to understand what’s happening here, The IDSA and their ridiculous, scrupulous thought patterns are going to harm a great many Lyme victims if we don’t get this under control. Who gives them the right to prejudice against us for having Lyme disease? It’s sad when Lyme victims have to fight with a doctor to get the help they need, to receive medications they need, their own insurance is being denied, dropped or investigated for having Lyme? We continually fall on “deaf ears” no one seems to care or want to understand how and what needs to be done here. I commend everyone for their honesty, vigilance, and upstanding stances they are trying to take for Lyme disease and these co-infections. May God watch over all of us and continue to bless us…..
Where I live, the tick infection rate is 60 to 80 percent of them infected with Lyme. Until June 2011, it was illegal in the state of New Hampshire to treat Lyme patients with long-term antibiotics. To see that a writer of a “science blog” ignore the real science behind this disease is totally amazing to me. For peer-reviewed articles that record accounts of chronic Lyme disease, see this link: http://www.lymedisease.org/resources/persistence%20confirmed.pdf
For other medical articles about the disease see this link: http://www.lymeinfo.net/lymefiles.html
I have had Lyme disease for 20 years. I most recently had another tick bite in June this year, complete with a bulls-eye rash that my doctor refused to recognize as such. I had to go to another doctor. A photo of my tick bite was shown to the state epidemiologist’ during a Lyme seminar for nurses and said, “Oh, yes, that’s classic” When doctors can’t even recognize by sight a bulls eye rash when they see it, and people perpetuate lies about the disease, and denigrate those who have had symptoms for years, how can we be treated?
Do you remember when fibromyalgia was NOT a “legitimate” disorder? I do. I can recall when people thought it was all in their heads if someone said they were chronically fatigued. Might the same thing happen with chronic Lyme disease? Perhaps if enough of us with this disease speak up about what we’ve learned from having it, people will begin to listen.
Shame on the author of this article for the total lack of scientific objectivity and for heartless, sweeping dismissal of a serious epidemic.
Thanks for writing this article, Mark. You are now on the activists listing of journalists to target. You can thank the Lyme disease associations for this special ranking, as they claim that “none” of your information is based on available science.
It is indeed a shame that the activism has turned an illness into such a twisted trail of conspiracies, witch hunts, harassment and hate. If anyone wants to learn how to sabotage and thwart research associated with a disease, study the antics of the Lyme disease activists and associations.
“It’s interesting that so many angry responses arrived nearly simultaneously, as though they were coordinated, on a blog which is all too seldom updated. Could it actually be that all these sufferers check Denialism day after day in the vain hope of a new posting?
“Nah,they just have Google alerts so they can storm any page that criticizes them with anecdotes and personal abuse.
Mark, it is indeed a directed attack instigated by the Lyme disease association web forums.
No one seems concerned about all of the people who will either die or suffer painful complications from taking long courses of antibiotics. All for the sake of treating a disease that has absolutely no evidence of its existence (chronic lyme disease).
It’s really sad how much misinformation is out there. And I just can’t understand why anyone would find an anecdote even slightly compelling when we know the power of the placebo effect and the simple fact that some people just get better by sheer coincidence. Show us a double blind study showing that patients claiming to have this disease do better with antibiotics than the sham treatment, then we’ll all listen.
Guess it’s just some kind of crazy coincidence that every one of these people (myself included) all developed some form of depression, CFS, or other chronic illness aimed at masquerading Lyme disease (also kind of amusing how many professionals in the medical field agree that there are “no coincidences in medicine”). Glad to know you’re on your way to becoming yet another ignorant sheep physician who only obeys to the CDC’s god-awful criteria for diagnosing Lyme. I continue to test positive for Lyme via the Western Blot IGM (Five bands positive) with increasing antibody response each time, despite months of antibiotic treatment (which, rather humorously, makes me positive for Lyme disease via the CDC’s piece-of-shit criteria for diagnosis). Even those assholes admit I still have Lyme. Look at the plethora of comments of people shitting on your article and its falsehoods. You really think we’re just out to troll some herb writing on a science blog in our spare time? Please, do some research man, you might actually learn something. Borrelia is hard as all damned hell to kill, and if you think 2 weeks of antibiotics is going to eradicate an overwhelming majority of Lyme cases, you are hugely incorrect.
Way to go, Alex!! Sabotage, alienate, harass and threaten every medical professional and expert with an opposing view. Ultimately this will benefit the patients. /sarcasm off
Any thoughts on this?
Comments are closed.