NB: images in this post are thought to be in the public domain, but were not well labeled, so if you feel they have been posted without proper attribution, please email me or leave a comment. Thanks. Also, this is a revision of a post from yesterday which I’ve pulled secondary to ethical concerns. I’ve deleted the comments so we can start out fresh. –PalMD
I can’t seem to get this whole “morgellons” thing out of my head (which gives me something in common with the sufferers). Lots of the “literature” on morgellons focuses on the “fibers” which supposedly infest these people. If you google it, you can get pictures galore of these fibers. The advocacy websites are also full of stories of “fiber analysis” from law enforcement. I’m not much for crime lab analyses when it comes to human pathology. Show me the tissue!
If morgellons were a disease as such, it would cause pathologic changes in the tissue affected. These should be visible on both a gross an microscopic level. Let me show you what I mean.
A young woman came to see me a few years back with a rash. She had rashes in the past—poison ivy, mosquito bites, chicken pox—but this one was different. It was all over her legs, many of the bumps were raised, and it was spreading quickly.
I’m not a dermatologist, but a good internist knows the difference between a usual rash and an unusual rash—this was an unusual rash; the kind that often indicates underlying systemic disease. I of course did a thorough history and physical, and ordered laboratory studies, but what I really needed was a biopsy.
The pathologist prepared microscopic samples by slicing pieces of the specimen very thinly and applying certain stains.
Now, there are diseases and syndromes for which pictures do not speak as clearly. When someone has a typical case of low back pain, you can’t slice up a piece of back and learn anything. But you can do imaging studies to look for significant pathology.
Lupus, a rather tricky disease, doesn’t have one diagnostic study that says, “this is lupus”, but when you put together a number of abnormal findings on a patient with lupus, you’ve got a diagnosis. Each finding in and of itself can be a bit “mushy”, but the findings are objective, verifiable, and replicable.
I’ve received a lot of very earnest mail about morgellons. The people who think they have this are miserable. They are pretty convinced that this “morgellons” thing explains what’s going on. But to successfully hang a name on a syndrome, you’ve got to do a lot better than having non-specific skin lesions, a wide range of seemingly-unrelated psychological symptoms, and some pictures of fibers. The literature on morgellons, such as it is, is full of pictures of rashes and fibers, but I’ve been searching in vain for pathology slides of biopsies (feel free to send web addresses or images if you have the real thing).
Look, folks, if you’re going to try to “discover” a new disease, gather some data. Fiber analysis is meaningless when isolated from true pathologic data. When the only positive information is coming from a pharmacologist, physicians assistant, nurse practitioner, and patient advocate, we’re not going to learn all that much. They just don’t have the right tools. Dermatologists who have seen this “syndrome” have been unimpressed.
It is not reasonable to believe that every real physician is conspiring to ignore an emerging illness. We love new diseases…they’re fascinating. When an astute observer noticed a rash of cases of Pneumocystic carinii pneumonia a few decades ago, epidemiologists and other professionals went on the hunt and discovered HIV/AIDS. When, a few years ago, people on the east coast began to fall ill with fevers and encephalitis during the summer, we found that West Nile virus had immigrated to the U.S. We’re pretty good at this. It’s not arrogance to demand evidence to back up extraordinary claims. When simple and elegant explanations for a set of data are available, there is not need to invoke a deus ex machina.
When a physician is confronted with an unusual skin finding, sometimes a glance is all you need. Shingles looks like shingles (although there are further tests that can confirm it). But if it looks unusual, we send a biopsy, as I did on the woman pictured above.
Skin is a pretty complicated organ, and when things go wrong, you can usually see something abnormal under the microscope. This slide is pretty typical of what was seen on my patient.
Now, instead of having a pathologist figure out that my patient had a leukocytoclastic vasculitis, I could have come up with an explanation on my own. Some reasonable guesses would have been infectious endocarditis, leukemia, idiopathic thrombocytopenic purpura. But I would not reach for “previously unknown parasitic disease set off by Lyme disease infested with fibers that cannot be identified by a crime lab in Oklahoma.” I also would not consult a non-medical professional with odd ideas. When confronted with a mystery whose answer is elusive, it’s better to grab an explanation that doesn’t require us to overturn decades of basic medical knowledge.