I just wrote an article about this for Science20. I think the jury is out on this one. Meanwhile, many patients find that doctors who accept the conclusions of the CDC basically turn them away, do nothing to help with their physical symptoms, on the basis that the only way to deal with it is through treating the mental conditions and delusions.
Most patients are unable to accept it as a diagnosis. And generally they say that they didn't have pre-existing tendencies to neurosis or anxiety, and no bad life experience triggered the first attack, they generally say that they were average basically happy people leading normal lives. And then it just happens. (Which studies also confirm, that pre-existing occurrences of neurosis etc in Morgellons patients is same as the national average). So you can well understand them not accepting this neurosis / anxiety / delusions diagnosis.
The only ones who will treat them are "Lyme doctors" who recognize the possibility of chronic lyme disease who treat them with various methods including long term antibiotics. And many Morgellons get success from these treatments, saying that their symptoms clear up almost totally as a result.
So as a patient, one can well understand that it can make sense for them to try to get a treatment that fellow sufferers say has worked for them, no matter what the CDC says about it.
The Lyme and Morgellons doctors say it's a complex treatment, since not all antibiotics work, the Lyme bacterium is highly resistant to them, and long term antibiotics can be harmful so patients have to be monitored carefully to see what effects the antibiotics have on both them and the disease. So in the treatment, the choice of antibiotics is based on knowledge of chronic lyme disease and also of the patient. It needs to be done under the supervision of a doctor, and a doctor who is familiar with chronic lyme disease and the methods of treating it.
So, the one thing one surely shouldn't do is to attempt to self medicate with antibiotics. It's not at all likely it will help. It's likely to be the wrong antibiotic for the bacterium, or for the patient, or the stage of the disease, and very possible that it can lead to harm, including death, for instance through liver damage. You definitely need a doctor prescribing a treatment plan and monitoring your progress and health regularly, for this.
Note, if anyone reading this wonders if you have Morgellons - it is an extremely rare condition. The chances are high that you have something else, which doctors can treat, and there are many diseases that resemble it. So the first step is to go through the process with your doctor.
The CDC did a big study that seemed to prove conclusively that Morgellons is not caused by an infectious agent - especially since they concluded that no follow up studies are needed.
But if you look at it more closely - it was a large and costly study. But medical studies are expensive and $600,000 doesn't get you that far.
They did cover a large population, but because it is such a rare condition, only 0.03% of the population - they only examined 41 patients in total. The cost averaged more than $10,000 per patient.
Critics of the study say that many of those patients didn't in fact have Morgellons and didn't identify themselves as Morgellons sufferers.
As well as that, they say themselves that one of the problems with the study is that they didn't have clear diagnostic criteria for selecting the Morgellons patients. They tested for presence of the bacteria that causes Lyme disease, but their critics say that more sensitive tests could be used.
The fibres they found were cellulose based, probably cotton. Again the critics say that the fibres that are characteristic of Morgellons are smaller, hard to study, of the order of 10 - 40 microns in diameter, and say that they were looking at the wrong fibres.
Their conclusion in the paper is not nearly as definitive as you might think from the summaries you see elsewhere. This is it:
This is what they say at the end of the discussion section:
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)
So the CDC study is not nearly as conclusive as you might think from the way it is usually summarized.
Recent research - the BMC Dermatology paper that someone else mentioned here - suggests a connection with chronic lyme disease. They actually found the Lyme bacteria in all the Morgellons patients - using much more sensitive tests than the ones used by the CDC. Including PCR tests in three independent laboratories, also DNA hybridization with Bb specific fluorescent markers and various other methods.
See Borrelia burgdorferi NEU2011 on MicrobeWiki
They also examined the fibres, and found they were made of keratin and collagen. The theory they are exploring is the hypothesis that the Lyme bacterium hides in the cells in the basal layer of the skin, and it changes gene expression in the cells that produce keratin and collagen, which then leads to them making these subcutaneous fibres, which then create the itching crawling sensations of Morgellons.
It's surely a reasonable scientific hypothesis. The question is whether it is confirmed or not. Their research so far confirms this, and it is time for other researchers to see what they find.
You can listen to her talk about her researches in the One Radio Network morning show with Patrick Timpone here: Marianne Middelveen, Morgellons Disease
And the main paper is here: "Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients"
So basically this is leading edge research. They are following valid scientific methods, published in peer reviewed scientific magazines. But it is an uphill struggle to get their voice heard since the CDC seemed to many to have "closed the book" on the topic.
Reading this as someone with a science background, no previous connection with this topic area, I think I'm reasonably neutral, as much as one can be in such a controversial area. And - it doesn't seem to me at all that the CDC study "closed the book" and that there is room for new research to appear to surprise us.
At the time that they did the study, then Morgellons wasn't characterized as clearly as it is now. But with this new study especially, I think that suggests it is definitely time that more research was done into this. I think myself that it is time that we resumed the researches that more or less came to a halt as a result of the seemingly conclusive CDC report.
Marianne Middelveen and her team have set out protocols for identifying Morgellons, questions you can ask a health professional to identify patients with the symptoms. Also set out a protocol which in their experiment detected the Lyme bacteria in these patients.
This is my article where you can read more - and as you see, there's a long chain of comments now also, not so surprising in this controversial area: Mystery Of Morgellons - Disease Or Delusion - Scientific Hypothesis Of Connection With Lyme Disease
Most patients are unable to accept it as a diagnosis. And generally they say that they didn't have pre-existing tendencies to neurosis or anxiety, and no bad life experience triggered the first attack, they generally say that they were average basically happy people leading normal lives. And then it just happens. (Which studies also confirm, that pre-existing occurrences of neurosis etc in Morgellons patients is same as the national average). So you can well understand them not accepting this neurosis / anxiety / delusions diagnosis.
The only ones who will treat them are "Lyme doctors" who recognize the possibility of chronic lyme disease who treat them with various methods including long term antibiotics. And many Morgellons get success from these treatments, saying that their symptoms clear up almost totally as a result.
So as a patient, one can well understand that it can make sense for them to try to get a treatment that fellow sufferers say has worked for them, no matter what the CDC says about it.
The Lyme and Morgellons doctors say it's a complex treatment, since not all antibiotics work, the Lyme bacterium is highly resistant to them, and long term antibiotics can be harmful so patients have to be monitored carefully to see what effects the antibiotics have on both them and the disease. So in the treatment, the choice of antibiotics is based on knowledge of chronic lyme disease and also of the patient. It needs to be done under the supervision of a doctor, and a doctor who is familiar with chronic lyme disease and the methods of treating it.
So, the one thing one surely shouldn't do is to attempt to self medicate with antibiotics. It's not at all likely it will help. It's likely to be the wrong antibiotic for the bacterium, or for the patient, or the stage of the disease, and very possible that it can lead to harm, including death, for instance through liver damage. You definitely need a doctor prescribing a treatment plan and monitoring your progress and health regularly, for this.
Note, if anyone reading this wonders if you have Morgellons - it is an extremely rare condition. The chances are high that you have something else, which doctors can treat, and there are many diseases that resemble it. So the first step is to go through the process with your doctor.
WHY MOST MEDICAL PROFESSIONALS SEE IT AS A DELUSION NOT A DISEASES
The CDC did a big study that seemed to prove conclusively that Morgellons is not caused by an infectious agent - especially since they concluded that no follow up studies are needed.
"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."
But if you look at it more closely - it was a large and costly study. But medical studies are expensive and $600,000 doesn't get you that far.
ISSUES WITH THE STUDY
They did cover a large population, but because it is such a rare condition, only 0.03% of the population - they only examined 41 patients in total. The cost averaged more than $10,000 per patient.
Critics of the study say that many of those patients didn't in fact have Morgellons and didn't identify themselves as Morgellons sufferers.
As well as that, they say themselves that one of the problems with the study is that they didn't have clear diagnostic criteria for selecting the Morgellons patients. They tested for presence of the bacteria that causes Lyme disease, but their critics say that more sensitive tests could be used.
The fibres they found were cellulose based, probably cotton. Again the critics say that the fibres that are characteristic of Morgellons are smaller, hard to study, of the order of 10 - 40 microns in diameter, and say that they were looking at the wrong fibres.
Their conclusion in the paper is not nearly as definitive as you might think from the summaries you see elsewhere. This is it:
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
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."See Learning from Morgellons, Harry Quinn Schone, Masters thesis for UCLA,
So the CDC study is not nearly as conclusive as you might think from the way it is usually summarized.
RECENT RESEARCH REINFORCING IDEA OF A CONNECTION WITH LYME DISEASE
Recent research - the BMC Dermatology paper that someone else mentioned here - suggests a connection with chronic lyme disease. They actually found the Lyme bacteria in all the Morgellons patients - using much more sensitive tests than the ones used by the CDC. Including PCR tests in three independent laboratories, also DNA hybridization with Bb specific fluorescent markers and various other methods.
They also examined the fibres, and found they were made of keratin and collagen. The theory they are exploring is the hypothesis that the Lyme bacterium hides in the cells in the basal layer of the skin, and it changes gene expression in the cells that produce keratin and collagen, which then leads to them making these subcutaneous fibres, which then create the itching crawling sensations of Morgellons.
It's surely a reasonable scientific hypothesis. The question is whether it is confirmed or not. Their research so far confirms this, and it is time for other researchers to see what they find.
You can listen to her talk about her researches in the One Radio Network morning show with Patrick Timpone here: Marianne Middelveen, Morgellons Disease
And the main paper is here: "Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients"
LEADING EDGE RESEARCH
So basically this is leading edge research. They are following valid scientific methods, published in peer reviewed scientific magazines. But it is an uphill struggle to get their voice heard since the CDC seemed to many to have "closed the book" on the topic.
Reading this as someone with a science background, no previous connection with this topic area, I think I'm reasonably neutral, as much as one can be in such a controversial area. And - it doesn't seem to me at all that the CDC study "closed the book" and that there is room for new research to appear to surprise us.
At the time that they did the study, then Morgellons wasn't characterized as clearly as it is now. But with this new study especially, I think that suggests it is definitely time that more research was done into this. I think myself that it is time that we resumed the researches that more or less came to a halt as a result of the seemingly conclusive CDC report.
Marianne Middelveen and her team have set out protocols for identifying Morgellons, questions you can ask a health professional to identify patients with the symptoms. Also set out a protocol which in their experiment detected the Lyme bacteria in these patients.
This is my article where you can read more - and as you see, there's a long chain of comments now also, not so surprising in this controversial area: Mystery Of Morgellons - Disease Or Delusion - Scientific Hypothesis Of Connection With Lyme Disease
About the Author
Robert Walker
Writer of articles on Mars and Space issues - Software Developer of Tune Smithy, Bounce Metronome etc.Studied at Wolfson College, Oxford
Lives in Isle of Mull
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