One day you feel a strange stinging, biting or crawling sensation beneath your skin, which just won't go away. Then fibres begin to protrude from the skin or you may see red or blue lines below the surface of your skin. Eventually sores erupt all over your body, including in places you can't reach such as the middle of your back. You go to the doctor - and - after doing tests to rule out many other similar conditions, he finds that you fit the symptoms of a very rare condition, popularly called "Morgellons". He or she then tells you that this is not a real disease, but rather is a delusional condition. There is nothing physical causing this. It's just something going on in your mind which leads to all these symptoms. And then he or she offers to treat you with therapy and drugs to help you with your anxiety and neurosis.
So, what do you do? Well - perhaps not surprisingly, many patients don't accept this diagnosis, and search on the internet, stop seeing their doctor about it, and try to find some other solution.
There they find lots of ideas about what causes it, including nanotechnology, extra terrestrial life, and many other strange ideas. But amongst these, many of them will learn about a group of researchers who suggest that it is connected with Lyme disease, and can be treated by long term use of antibiotics.
An adult deer tick, which may carry the microbes that cause Lyme disease. Some researchers think that these microbes can also cause Morgellons, and that you can use antibiotics to treat it
So you go back to your doctor and ask for treatment using antibiotics. But - at this point - he or she has to refuse you. Doctors are of course reluctant to prescribe antibiotics anyway unless it is needed because of antibiotic resistance. But this is for another reason.
The suggested treatment here is to continue with antibiotics for years on end, not just for a few weeks. That can have serious effects on your overall health - in particular it can damage your liver. You would need to be monitored regularly to make sure your liver is okay. Which a doctor could do. But in this case, then the medical consensus for Morgellons is that it can't be treated with antibiotics. So if a doctor prescribes antibiotics for it, he or she is likely to be censured by the medical establishment for carrying out a potentially dangerous treatment that has no medical backing. And if anything went wrong he or she would be in serious trouble.
So then, at this point some patients will go and buy antibiotics intended for animals, and treat themselves, which is clearly a dangerous thing to do.
So what is the background to this? How have things come to this pass where some people are treating themselves in this way? And what can be done about it? And is there any truth in the idea that it can be treated with antibiotics?
I hesitated about writing this, as I'm a science blogger, not a doctor. But it is easy to find this recommendation to treat yourself with antibiotics meant for animals, it just takes an quick google search to find it online. So I don't think writing this will make any difference to the few who decide to take that risk which I don't at all recommend!
(You can also get this article as a kindle ebook)
Since this is an article on medicine, I feel I need to give a medical warning. First there are many other conditions that are easily confused with Morgellons (putting aside for one moment the question of whether Morgellons is a disease or a delusional condition). I suggest that if you think you have the condition, that you talk to your doctor first and go through all those tests. Morgellons is an extremely rare condition, just a few in a hundred thousand have it. The chances are you have something else, which the doctor will be able to treat.
Then, if you get no success and think you may have the condition, there's the Morgellons Disease Foundation which is a patients advocacy organization for this condition. I'd get in touch with them or visit their facebook page or go to their conferences to find out more - it's a whole lot better than getting advice from strangers on internet forums at least.
So this article is not meant for patient support. It is just about the scientific aspect of this. Could it be that the researchers are right, and that there is a connection with Lyme disease? How did we get into this situation where the medical establishment is sure that there is no connection, and yet this group of researchers and many patients are convinced that there is?
I don't have Morgellons myself, or know anyone with it, or have any connection with this. Just found out about it as a result of the story that broke about Joni Mitchell who has the condition, early this year. And this is what I found out as a result of looking into the scientific literature and articles.
At first, you get the impression that it was all cleared up by a big survey published in 2012. Their conclusions were so definite you wonder why anyone could doubt it.
This was an initiative of the Obama administration. Before 2012, then there was a variety of views on this, with several different scientific hypotheses being explored, and it wasn't yet considered a "closed book" by the medical establishment. After a lot of agitation by patient advocacy groups, then a large study begin, in 2008, concluding in 2012. But when this came out, it was a great disappointment to those who thought it is a real disease, because the researchers came out conclusively in favour of the delusion hypothesis.
This is what they wrote:
"This comprehensive study of an unexplained apparent dermopathy demonstrated no infectious cause and no evidence of an environmental link. There was no indication that it would be helpful to perform additional testing for infectious diseases as a potential cause. Future efforts should focus on helping patients reduce their symptoms through careful attention to treatment of co-existing medical, including psychiatric conditions, that might be contributing to their symptoms."
You can understand that this seemed to close the book on the subject for the medical establishment.
However if you look at the study a bit more closely, then it's not quite so clear a matter as it first seems.
The main problem they faced is the low prevalence of the disease, only 3.65 cases per 100,000 of the population they studied. In that four year period, after spending hundreds of thousands of pounds on the survey, they found a total of 41 patients with the condition. More than ten thousand dollars per patient was spent on this survey - doing something like this is an expensive undertaking.
They themselves point out several limitations to their study. Also some of the researchers who were already researching into the condition at the time of the survey offered several criticisms of it.
Harry Schone summarizes these criticisms in one of the sections of his University College London thesis "Learning from Morgellons" (for a History and Philosophy of Science Masters)
"It is indeed true that the CDC were being cautious, that they found no positive evidence for the claims made by Morgellons sufferers, but it does not mean that the study can go without critical appraisal. Although expensive and lengthy, the research only clinically evaluated 41 people. Furthermore, since the population was selected by criteria other than self-identification it has been argued by critics of the study that some of those included did not have or even consider themselves to have Morgellons. The validity of these criticisms may rest on somewhat pedantic points, but what is certainly true is that an awful lot of reading between the lines has been passed off as something more substantial."
And if you go and read the report itself, then they also point out limitations in their own report. Amongst other issues they point out that there was no clear diagnostic test for the condition or established tests for it, so leading to possibilities of reporting biases and misclassification. Also, they weren't able to follow the patients over a long period of time.
The paper itself is not nearly so conclusive in tone as the summary of it might suggest.
This is what they say at the end of the discussion section:
We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition, as has been proposed by those who use the term Morgellons, or wider recognition of an existing condition such as delusional infestation, with which it shares a number of clinical and epidemiologic features. We found little on biopsy that was treatable, suggesting that the diagnostic yield of skin biopsy, without other supporting clinical evidence, may be low. However, we did find among our study population co-existing conditions for which there are currently available therapies (drug use, somatization). These data should assist clinicians in tailoring their diagnostic and treatment approaches to patients who may be affected. In the absence of an established cause or treatment, patients with this unexplained dermopathy may benefit from receipt of standard therapies for co-existing medical conditions and/or those recommended for similar conditions such delusions infestation
That doesn't read to me like a paper that completely closes the book on the topic, leaving no possibility for any future research on it.
For details see the discussion section of the Plos One paper.
At the time of the CDC report, there were many competing scientific hypotheses for Morgellons. So the CDC were quite right to say that there was no single clear diagnostic criteria to use, or tests.
However, now it seems that the researchers have converged on a single hypothesis. Which seems, scientifically, quite a reasonable one. The Mayo Clinic Page page about Morgellons refers to this group of researchers
There are maybe a dozen or so researchers involved in this research. But one of the main proponents of this hypothesis is Marianne J. Middelveen, MDes, a Veterinary Microbiologist from Alberta, Canada. She made a connection with a disease of cattle, called Bovine Digital dermatitis which has similar symptoms - and in that case, it is well established that there are microfilaments of keratin and collagen which form beneath the skin.
She analysed the filaments that form beneath the skin of sufferers, and found out that these also are made of keratin and collagen.
She also found spirochetes, which are usually associated with Lyme disease in humans.
These get their name because of their spiral shape:
You can listen to her talk about her researches in the One Radio Network morning show with Patrick Timpone here: Marianne Middelveen, Morgellons Disease
It turns out that Borrelia burgdorferi has a preference for infecting fibroblasts and keratinocytes which are cells in your body, in the epithelium, that create keratin and collagen - components of your skin. So they are a part of a healthy skin.
Her hypothesis is that the spirochetes hides from the antibiotics inside the cells that produce these materials and this can influence gene expression (which genes get turned on or off), so something goes wrong with gene regulation, leading to these cells producing too much collagen and keratin, creating these fibres in the skin, which then cause the irritations and sores. They may be able to hide in these cells for many years on end, before something changes and triggers an outbreak of Morgellons.
This connects the hypothesis to another controversial condition, Chronic Lyme Disease. Normally if you get bitten by a tick and you get the characteristic "red bulls eye" rash symptoms of Lyme disease - then you go to the doctor - ideally as soon as possible. You then get a short course of antibiotics, and for most patients, that clears everything up.
Red "Bulls Eye" rash of Lyme disease. If you get this symptom, see a doctor right away. For most patients a quick course of antibiotics clears it up completely.
Also, it's a good idea to remove any ticks you find as soon as possible, if you do it within a few hours of getting the tick, apparently the chance of getting Lymes is minimal. I use the O'Tom tick twister myself - its a really easy way to remove them far easier than tweezers.
Tick removal with O'TOM Tick Twister by H3D
But some patients continue to get symptoms for many years afterwards. The suggestion is that the spirochetes can sometimes hide from the antibiotics, and then continue to cause problems long after the disease is normally considered to be cured.
This has the same issue as Morgellons, that the treatment for chronic lyme disease is a long term course of antibiotics. Most medical authorities advise against this method of treating it. See Lyme Disease Controversy (wikipedia)..
The problem here is that though the mechanisms of persistence in Lyme disease are well established in animal studies, dogs mice and rhesus macaques, there is a lot of controversy about whether the same processes happen in humans.
There are two views here, the view of the CDC that humans are different from the animals, and one month of antibiotics will get rid of Lyme disease, and the view of ILADS (the International Lyme and Associated Diseases Society) that persistent lyme disease is a problem.
Marianne Middelveen says she has chronic lyme disease herself (though she doesn't have the symptoms of Morgellons). As a microbiologist she can culture it in a special growth medium, and (after maybe a month) she can see the Lyme bacterium swimming around, and do DNA studies, and molecular stains and techniques to definitely identify it as Borrelia Burgdorferi (they use antibiotics to eliminate other microbes).
In their 2015 paper, Middelveen and her co researchers say that the CDC study had limitations which could explain why they didn't find the spirochetes
"The search for spirochetal pathogens in that study was limited to Warthin-Starry staining on a small number of tissue samples and commercial two-tiered serological Lyme disease testing as interpreted by the CDC Lyme surveillance criteria. It should be noted that only two of the patients in our study group were positive for Lyme disease based on the CDC Lyme surveillance criteria and yet Borrelia spirochetes were readily detectable in this group of 25 MD patients."
They attribute their success in detecting Borrelia burgdorferi and closely related spirochetes to several factors
- Clear diagnostic criteria for patient selection: fibers visible underneath unbroken skin or embedded in or projecting from skin, documented by a healthcare provider
- Ability to culture spirochetes in vitro to increase opportunity of detection
- High spirochetal load for the lesions, similar to lesions in cattle with BDD
- Use of molecular hybridization and PCR methods, able to detect spirochetal DNA in picogram range.
The authors agree that the cotton fibres extracted by the CDC are unrelated to the disease, and are probably from clothes and swabs. However they say that the fibres they study are a different phenomenon. They are almost microscopic in many people, 10 microns to 40 microns wide. They may require 60 times magnification to be seen clearly, and can be found beneath unbroken skin. The fibres they found were made of keratin and collagen, not cotton. See Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients,
Some of the patients do start to get many different ideas about their condition and may think they are infected by insects, or other things.
Here I'm summarizing some earlier papers on the topic. The researchers agreed with the CDC that these incorrect beliefs can occur, but differ in their understanding of the cause / effect connection. Based on patient reports and observations, they believe that the physical symptoms occur first, and the psychosomatic disorders follow later.
Lyme disease is also implicated in some neurological conditions so that may also be a factor. In more detail, the ILADS chronic lyme disease checklist for preliminary diagnosis for physicians lists amongst possible symptoms of chronic lyme disease including confusion, difficulty thinking, poor short term memory and attention, disorientation, speech errors such as wrong words and misspeaking, mood swings, anxiety and panic attacks, also:
- Psychosis (hallucinations, delusions, paranoia, bipolar)"
(Note, there are many other symptoms in the check list such as joint pain, fevers, etc and some patients will have some and some will have others.
To be diagnosed as chronic lyme disease according to these guidelines - the illness also has to be present for at least a year, must have major neurological effects such as encephalitis, meningitis etc or active arthritis - and the patient must still have active infection with B. burgdorferi even if previously treated with antibiotics)
In particular, in support of their view that the condition may cause the higher prevalence of delusions rather than the other way around, these researchers say that they found no evidence of a higher occurrence of pre-existing psychosomatic disorders in this group of patients than there is in the population at large (0.03%), which in their view distinguishes this group of patients from usual cases of delusional parasitosis.
If you go to the Morgellons page in wikipedia, as I did, along with many others, when the story of Joni Mitchell broke - then - it doesn't mention this hypothesis at all. The article just says that it is delusional parasitology. And if you go to the talk page you find extensive archives, now twelve of them in total, of past talk pages. Extensive discussions by various people who have gone there saying over and over that wikipedia should say something about this in the article.
This isn't at all unusual - a lot of drama happens behind the scenes on the talk pages of wikipedia, and passions can run high at times. When you read an article there, it might well be the result of a delicate compromise - reached with careful mediation after a long battle raging for years over the choice of a single word sometimes. For a humorous look on this see Wikipedia: Lamest Edit Wars
Container of gasoline? petrol? fossil fuel? gas?
One of many topics that lead to huge behind the scenes battles in wikipedia.
The editors there must be getting quite fed up about this, as they answer in the same way, over and over, that the research doesn't fulfill the requirements for citation in a medical article in wikipedia. One can understand that medical research of course has to be covered with great care. But one can also understand the frustration of those with this condition, or who have heard about it, who think there should at least be some mention of this research there.
I've recently tried to write an article about this in wikipedia, as fringe science. The idea was, that by calling it fringe science, it doesn't have to fulfill the same rigorous requirements as a medical article.
At first it was approved, but then, it got merged away and redirected to the main Morgellons article. So it seems this approach is not going to work.
The discussion did have one outcome. The Lyme disease research is now referred to indirectly in one sentence, but only through a citation of an article in the newspaper Atlantic which talks about the researchers. The hypothesis itself is not mentioned and it seems they didn't feel they could link to the original papers. Please note - I am not suggesting that anyone here joins the discussion there - that is very much frowned on in wikipedia as it is considered to be "recruiting". Also I respect their decision and am not suggesting that there was anything wrong with it. Please don't join the discussion there as a result of reading this article in an attempt to do something about it.
Maybe it is not yet at a stage where it is suitable to mention it in wikipedia. But surely it needs to be more widely known? That's why I decided to write this article about it.
It is leading edge research. Just a few studies by a small group of researchers. Following standard scientific practice, then researches like this need to be confirmed by other researchers in other studies. And at this stage, it could as easily be refuted as confirmed.
But - with most researchers convinced that the CDC report has "closed the book" on this topic area, research in this area is bound to be slow.
Perhaps their report has sometimes been used in ways that suggested it is more conclusive than it really was.
In this situation, surely we need to continue this research. If it did turn out that these researchers are right after all, then it is awful if patients who have a real disease are just being treated for anxiety and neurosis.
On the other hand it is also pretty bad I think that some patients feel they have to self medicate with antibiotics made for animals, without the precautions needed to make sure they are not harming their health in the process.
And if this treatment is actually not doing them any good, this also maybe can be shown conclusively in future research. The CDC reports has enough caveats in it that you can understand patients and researchers not being convinced that it has totally closed the book.
And maybe some other treatment found in its place if it is a real condition. Hopefully more research will help with all this.
For those who are really keen to find out more, there's an annual three day conference for researchers to present and discuss their findings, including investigations of this hypothesis of a Lyme disease connection. It is held in Austin, Texas, and the eighth conference in 2015 had twelve presenters.
This is sponsored by the Charles Holman Morgellons Disease Foundation, which is a 501(c)3 nonprofit organization committed to "advocacy and philanthropy in the battle against Morgellons Disease" Its director is Cindy Casey-Holman and the organization is named after her deceased husband Charles Holman. It also has a facebook page.
The Morgellons Research Foundation was the primary patient advocacy group in the 2000s. This was founded by Mary Leitao, a biologist from Pennsylvania, but is no longer active.
Here is a video of Eboni Cornish talking about chronic lyme disease.
- Mayo Clinic - refers to the Morgelons Disease Foundation
- Okalahoma Center for Health Studies
- Marianne Middelveen, Morgellons Disease Marianne Middelveen talking about her research
- Diagnosis or Delusion? Critical article by Katherine Foleyjan, in the The Atlantic magazine 2015.
Here are some of the articles I read while researching this article
- Harvey, William T; Bransfield, Robert C; Mercer, Dana E; Wright, Andrew J; Ricchi, Rebecca M; Leitao, Mary M (2009). "Morgellons disease, illuminating an undefined illness: a case series". Journal of Medical Case Reports 3 (1): 8243. doi:10.4076/1752-1947-3-8243. ISSN 1752-1947.
- Savely, Virginia R., and Raphael B. Stricker. M "Morgellons disease: analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology." Clinical, cosmetic and investigational dermatology: CCID 3 (2010): 67.
- Savely, Virginia R; Leitao, Mary M; Stricker, Raphael B (2006). "The Mystery of Morgellons Disease". American Journal of Clinical Dermatology 7 (1): 1–5.doi:10.2165/00128071-200607010-00001. ISSN 1175-0561.
- Middelveen, Marianne J; Burugu, Divya; Poruri, Akhila; Burke, Jennie; Mayne, Peter J; Sapi, Eva; Kahn, Douglas G; Stricker, Raphael B (2013). "Association of spirochetal infection with Morgellons disease". F1000Research. doi:10.12688/f1000research.2-25.v1. ISSN 2046-1402.
- Middelveen, Marianne J; Bandoski, Cheryl; Burke, Jennie; Sapi, Eva; Filush, Katherine R; Wang, Yean; Franco, Agustin; Mayne, Peter J; Stricker, Raphael B (2015). "Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients". BMC Dermatology 15 (1). doi:10.1186/s12895-015-0023-0. ISSN 1471-5945.
- Schulte, Brigid (January 20, 2008). "Figments of the Imagination?". Washington Post Magazine. p. W10. Retrieved 2008-06-09.
- "Unexplained Dermopathy (aka "Morgellons"), CDC Investigation". Centers For Disease Control. November 1, 2007. Retrieved 2011-05-09.
- CDC report FAQ
- Learning from Morgellons, Harry Quinn Schone, Masters thesis for UCLA, see Harry Schone
- "Morgellons disease: Managing a mysterious skin condition (page 2)". Mayo Clinic. 2015.
- What is Morgellons Disease? Is it a physical or psychological condition? , Coco Ballantyne, Scientific American, May 13, 2009
- Mitchell and the mystery of Morgellons disease ByJESSICA FIRGER, CBS NEWS, April 2, 2015, 5:47 PM
- Diagnosis or Delusion? Critical article covering the foundation by Katherine Foleyjan, 2015.
- Elkan, Daniel (2007-09-12). "Morgellons disease: The itch that won't be scratched" (2621). New Scientist Magazine. Example of one of the many earlier hypotheses before the CDC study - this one was that it might be due to Agrobacterium, a genus of bacterium that causes tumours in plants.
- Stricker, R. B., et al. "Contribution Of agrobacterium to Morgellons Disease: 287." Journal of Investigative Medicine 55.1 (2007): S123. Again about this older hypothesis, no longer being researched.
- Marianne J Middelveen, Raphael B Stricker, Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease, in Clinical, Cosmetic and Investigational Dermatology 2011
- Marianne J. Middelveen1, Jennie Burke2, Eva Sapi3, Cheryl Bandoski3, Katherine R. Filush3, Yean Wang2, Agustin Franco2, Arun Timmaraju3, Hilary A. Schlinger1, Peter J. Mayne1 Culture and identification of Borrelia spirochetes in human vaginal and seminal secretions, F100 research
- Marianne J. Middelveen1, Elizabeth H. Rasmussen2, Douglas G. Kahn3 and Raphael B. Stricker1*, Morgellons Disease: A Chemical and Light Microscopic Study, Journal of Clinical&Experimental Dermatology Research
- Peter J Mayne, Clinical determinants of Lyme borreliosis, babesiosis, bartonellosis, anaplasmosis,and ehrlichiosis in an Australian cohort, International Journal of General Medicine,
- Wymore, PhD, Randy S. et al. "The Investigation Of The Microbial And Molecular Analysis Of Morgellons Epithelial Tissue Samples." 2015. Poster Presentation.
- Shah, PhD, Jyotsna S. "Morgellons Disease – Chronic Form Of Borrelia Infection?”
- Middelveen MJ, Stricker RB Morgellons disease: a filamentous borrelial dermatitis, International Journal of General Medicine » Volume 9, DovePress
THIS ARTICLE AS A KINDLE EBOOK
Do you want to download this as an ebook, to read on your kindle, or kindle app (available for most operating systems)?
It's the same article with addition of table of contents, so you can jump easily to any section, title page and formatted as a book. Text, images etc are the same.
Estimated length - equivalent to 18 pages in a printed book