This is the fourth of 6 guest posts on infectious causes of chronic disease.

By David Massaquoi

Working in public health is an interesting and satisfying job. Adding infectious disease investigation to such task makes the job not only difficult but the challenges of encountering numerous disease conditions; including learning about the Morgellon’s disease. In recent years, doctors have been faced with an unexplained skin disease condition, dubbed “Morgellons Disease”. I will not go into details with all the debates on merits and demerits of this “New” or “Emerging”? condition. However, as an infectious disease epi student and a public health practitioner, I found it interesting to discuss this issue with fellow students, the public and our infectious disease researchers and professors.

A few things I would hope to discuss with fellow readers and bloggers are: What is this “disease”? Is it a disease anyway? Is it just a “Madness” or a “Malade” – French word for illness? Or, will this be another emerging, non contagious, condition? Will this be a new non infectious/infectious skin disease of the 21st century? There is very little data on this condition as it has just recently caught the attention ( well interest I could say) of public health officials at the Centers for Disease Control and Prevention (CDC).

According to Wikipedia, “Morgellons” (also called Morgellons disease or Morgellons syndrome) is a name given in 2002 by biologist Mary Leitao to a condition characterized by a range of cutaneous (skin) symptoms including crawling, biting, and stinging sensations; finding fibers on or under the skin; and persistent skin lesions (e.g., rashes or sores). The CDC has stated that “it is not known at the present whether the condition represented a new disease entity, or whether persons who identify themselves as having Morgellons have a common cause for their symptoms, share common risk factors, or are contagious”.

According to the data currently available on this condition, the majority of health professionals, including most dermatologists, regard Morgellons as a manifestation of other known medical conditions, including delusional parasitosis. Simply put, doctors and most health professionals think people with “Morgellons disease” are either addicts or psychos and may just be making things up. Here in Iowa, staff members at the Center for Acute Disease Epidemiology (CADE), at the state health department, have had their own share of problems with investigating this mysterious skin condition. With all the skin tests doctors have performed and few interviews conducted, it all point to delusional parasitosis.

However, few weeks ago, the CDC put out a press release stating that some researchers from CDC will team up with researchers from Kaiser Permanente, a health insurance group, to investigate the mysterious “Morgellons disease”. According to that press release, the government will spend $338,000 to investigate this mysterious disease.

Now, the question to you the reader is, is this story worth your time? Is this a new disease introduced into our country? Is this skin condition a manifestation of a chronic condition due to previously unknown infectious agent(s)? I decided to blog about this condition because we are studying “Infectious Causes of Chronic Disease” and I am just wondering if this skin disease condition, could be a manifestation of an infectious agent(s). Although most indications are that this disease might be a “delusional parasitosis” condition, I think it is worth researchers making an effort to put the argument to rest on this condition. It might be a psychosis condition but without good epidemiological research and full data analysis, it might be a missed opportunity to know if this is just a “Madness” or true “Malade”?. As I stated earlier, I do not have the data to answer some of these questions and we may not know for a while, but I feel it might be interesting to bring this to your attention; especially the CDC research initiative.

Originally from Sierra Leone, David has a BS degree in biology and worked at the NIH before coming to Iowa to pursue a graduate degree in public health at the Des Moines University Medical Center (DMU). He is currently enrolled at the University of Iowa in the PhD program to study Infectious Disease Epidemiology and International Health. Once he completes his studies, David hopes to engage in infectious disease research and epidemiological investigation in developing nations.

Comments

  1. #1 wright
    February 26, 2008

    Some good points, David. I myself don’t know much about Morgellon’s aside from what I’ve read here and on other blogs. Thus far, as you say, the consensus is that it’s a delusional condition and I tend to believe the professionals.

    Having said that, a study by the CDC might lay to rest some of the controversy. If a national institution can definitively show there is no infectious agent or allergic reaction causing Morgellon’s, then more people will be convinced.

    I guess the question is: where do you draw the line? The CDC is not, thankfully, investigating alternative causes for AIDS. Maybe I should find it more disturbing that the CDC feels the need to devote resources to addressing the legitimacy of Morgellon’s, when many other specialists are already satisfied.

  2. #2 PalMD
    February 26, 2008

    I’ve been writing a bit about this issue, and it has attracted a bit of vitriol. The morgies are a rather stubborn lot.

    Shameless plug

  3. #3 apy
    February 26, 2008

    I saw a special on TV (probably posted here) on “Bugs Under the Skin” or something similar about a group of people that claim to have tiny bugs living inside their bodies and they eventually emerge. One of the possible diagnosis was Morgellons. One of the people in the news story even scratched her skin and put it under a microscope and supposedly there were bugs there. The news station got the CDC to come and investigate it and it ended on one of those perfect-for-news “the CDC has not yet returned out calls about their investigation”.

    What I took away from the special was that the people on it seemed a bit mental. Not raving lunatics but a bit off. But then again, they have been trying hard to get people to believe them and failing, so I would be a bit off if I did have something but nobody would listen. In the end, they claimed that these people have bugs under their skin, that is pretty clearly physical evidence and should easily prove if it is true or not, stick them in a clean room for a few days and if bugs show up, there you go. So I’m still pretty skeptical. But I do not think that $300,000 is that much for a study, and IMO should be a tiny fraction of the health budget so I am willing to spend the money to study it to get some real answers, but with the understanding that if it comes out negative it will not change the minds of many people who suffer from it.

  4. #4 Gary
    February 26, 2008

    Excellent post. An interesting subject and very well written.

    As to Morgellon’s, my attitude is that the burdon of proof clearly falls on those who believe it is a true disease. Until that happens, I’m saying it isn’t.

  5. #5 wright
    February 26, 2008

    Yeah, I’m with you, Gary. Extraordinary claims require extraordinary evidence and all that. Heck, if Morgellon’s really was evidence of some new parasite or whatever, scientists would literally be all over it.

    That’s what a lot of people who see conspiracies involving “Big Science”, “Big Pharma”, etc. don’t seem to understand. There is intense competition in every scientific field at every level. Most researchers, from what I can see, are alert for new developments that could advance their careers and professional reputations. If something turns up in theirs or a related field, lots of people investigate it.

    That’s a pretty poor environment for keeping secrets. With so much independent investigation going on, the legitimacy of a particular subject is proved or disproved relatively quickly. This is one of the great advantages of our era.

  6. #6 David Massaquoi
    February 26, 2008

    I agree with you Gary, the burden of proof falls on thier laps, but as PalmD said earlier, these people are, kind of, stubborn. So, I think, this is why CDC is wasting the money and time to do the studies and put the matter to rest – I am not happy that the amount is wasted that way.

    To add something to what Apy said, so far, the few cases I have been involved with has been more like a story telling. There was a patient that used to call one of the local health agencies that I work with about bugs crawling under her skin. The agency got fedup with the situation and asked that she contact a doc and the regional epi. The doc. did some few tests and all she could see under the scope was the patient’s own skin. To get the patient stop the problem, the public health administrator and I told her not to pick the bugs at all once the bugs start crawling and coming out but to rush straight to the doc’s office and let the doc pick the bugs and examine them.

    Since that time, about 4months now, I have not heard any complains yet that the patient is call about bugs crawling under her skin. Again, who knows, maybe good professionals, like docs, are missing something!

    Thanks!

  7. #7 daniel
    February 26, 2008

    I am a nurse and have worked with a few people who claimed to have this and they would point to the affected area and there was always nothing. No swelling, enduration, redness, heat, texture changes nor any bugs or string like material. The doc never saw anything either.

  8. #8 Dan Hocson
    February 27, 2008

    Unfortunately, you could spend a billion dollars studying this condition, and if the answer is “psychiatric condition”, none of the sufferers will believe it.

    I have no doubt that this is a delusional condition. I have seen three patients with this condition, none with any objective findings. Sadly, one case resulted in a CPS referral as the patient repeatedly took her grandchild to the doctor, claiming he had bugs too, and she had to scratch them off.

  9. #9 Luna_the_cat
    February 27, 2008

    I don’t think this would be wasted money, as long as they include studies like fMRI or some form of electrophysiology test, as well, just for a start. While the evidence appears to be against any actual infestation of parasites in the skin, it could well be worth looking at as a putative nervous system disorder.

    Is the perception purely in the brain? Is there a signal in the peripheral nerves which might indicate something actually going on with the nerves in the skin? A gross (as in relatively large, not like yucky, although that would also apply) physical cause like bugs would be relatively easy to spot, as should a true allergic response; but that doesn’t rule out every possible form of physiological involvement. It could be anything from a new form of sensory processing disorder, to pruritus resulting from actual damage to or malfunction of the nociceptors, or even something in between, like an issue with the spinal processing of the signal inducing hypersensitivity to any touch, so that things like clothing or the normal movement of air over the skin induce a deep itch in the skin.

    People who are looking at this as an issue of “are there bugs in the skin, or is it purely psychiatric” are ignoring the fact that there can be a lot of layers of physiologal involvment, not all of them intuitively obvious, but all of them possible points for things actually going wrong.

    I have no idea if this syndrome is “all in the head” or not, but there is certainly more to investigating its possible reality than just eliminating the issue of parasitic infection.

  10. #10 apy
    February 27, 2008

    Let’s say it turns out this is purely psychological, how do you handle it as a doctor? If you tell the sufferer “no, really you’re just imagining it, I can give you some anti-psychotic medication to help you”, my guess is that they will not take it well. Is it then unethical for the doctor to say “oh yes, we have a pill for this” and give them an anti psychotic and not explicitly tell them what it is? Alternatively, if there is an anti psychotic pill that works better against someone suffering from Morgellons disease can a pharma company brand a pill as that, so a doctor can say “yes there is a pill for morgellons” and not *really* be lying even though the patients idea of Morgellons is bugs under their skin and the doctor’s/pharama’s definition is being mental?

  11. #11 "no longer itching"
    February 27, 2008

    FWIW:

    as reported in _Psychology Today_

    http://psychologytoday.com/articles/index.php?term=20070227-000003&page=2

    The fibers were compared spectroscopically to 800 references samples, and with gas chromatography to 90,0000 known samples and no match was found; the fibers did not melt at 1,400′.

    About 8 months ago I started to feel a sensation of something small crawling under my skin when I was laying in bed, or if I was just sitting and relaxing during the day. If I was busy and active it never crossed the threshhold for triggering awareness. I had never heard of Morgellon’s. I was perplexed – and did not want to go to the doctor; I could not imagine being taken seriously.

    I was watching the news, drinking my coffee one morning when I perked up at hearing about this CDC study of the “skin craweling disease”.

    I googled to http://www.lymephotos.com and followed the NaCl / Vitamin C protocol (not precisely) and a few hours later had a herxheimer’s reaction that lasted most of the day, and the next day the subcutaneous crawling sensations stopped and have not come back.

    I am a sworn Federal officer, and was a Hospital Corpsman in the Navy.

    YMMV

  12. #12 Calli Arcale
    February 27, 2008

    Intriguing, “no longer itching”. What is this NaCl/Vitamin C protocol?

  13. #13 Adele
    February 27, 2008

    I wish they would of published the test results, fibers from an organism going to 1400 degrees and no change.

    But they did not so you have to look at rense dot com real scientific stuff like

    Some specimens had “biological artificial” appearances that are known as artificial life or pseudo-life forms. These types of artificial life forms are known to use DNA/RNA/siRNA or sRNA plasmid templates of viruses, microorganisms, animal/plant proteins and/or enzymes to build the artificial technology structural form at nano level. Furthermore, they are not limited to only these referenced life forms plasmids, enzymes, and/or proteins.

    Huhh?? That is nonsense but I guess their saying Morgellons is nano technology from the army ok that makes sense if you are into that stuff.

  14. #14 ElkMountainMan
    February 28, 2008

    Dear Adele,

    Amusing. I sure hope my enzymes and proteins don’t get confused with each other…or begin lobbying for full rights as “referenced life forms.”

    And why did your friends leave out shRNA, tRNA, rRNA, snoRNA, miRNA, pri-miRNA, and all the other sinister “plasmid templates of viruses”?

  15. #15 LoPhatt
    February 28, 2008

    First there is a strange bump, like a small pimple that won’t go away, and then there is another. Then there is the strange skin condition with strange small sores that just appear, but don’t scratch them because some will start to itch like a cross between a mosquito and a fire ant. But finding the blue and red and black fibers will get your attention, although the rest of the symptoms can be severe, they are definitively vague at best, but are none the less ARE real and not so easily dismissed when seen first hand.

  16. #16 Hank Roberts
    February 28, 2008

    Well, we know only some tiny proportion of bacteria can be grown in labs (by taking samples of DNA found in the wild) and probably the same is true for viruses. A serious look at a group of people is going to turn up a bunch of new organisms on and under the skin, I’d guess, if they take the Craig Venter approach and just assay for unknown strands of DNA and RNA from the raw material and then look for the organisms in the wild.

    One nice thing about fishing expeditions, you find surprises.

  17. #17 Becky Smyth
    February 29, 2008

    Morgellon’s Disease is real. It is not fibers. It is worms or some kind. They are alive and come out of the skin after a shower. After they are exposed to dry air conditions they dry up and die. At that point they look like fuzz or fibers. They are not I repeat NOT fibers or fuzz. They are worm larvae and dead worms. I’ve personally experienced this. I’ve taken many a remedy and the only medication which decreases the incidence of the above mentioned is anti-parasitics. If this goes untreated the persons body will soon become overrun with these entitites and then life will become worse than unbearable. This becomes ten fold itchier when killing it off. This is a miserable condition and needs medical attention. Whomever started the “fiber” b.s. needs to seek help!!

  18. #18 Martin Robbins
    February 29, 2008

    A few of points:

    1) Regardless of whether the condition is real or not, Morgellons has attracted a “lunatic fringe” on the internet of obsessive people who clearly *do* have delusional parasitosis. If the condition *is* real, then these people with their ridiculous Youtube videos and assertions of nanotechnology are doing more than anyone to stop it being taken seriously.

    2) I take issue with the line “simply put, doctors and most health professionals think people with “Morgellons disease” are either addicts or psychos and may just be making things up”, which I think reinforces the misunderstandings (and misgivings) the public have when medical professionals use terms like “delusional”. Delusional doesn’t mean crazy, and it shouldn’t be seen as a negative insult.

    3) The CDC study will be irrelevent to the Morgellons Internet Meme. If the CDC says it isn’t a disease, or they aren’t sure, the buzz will continue. If they say they think it might be, it’ll expand and soon every mother will be demanding the installation of scanning electron microscopes in schools.

  19. #19 Lurker
    February 29, 2008

    http://psychologytoday.com/articles/index.php?term=20070227-000003&page=2

    This link from above was helpful in realizing there is truth to this condition, in direct contrast with the some medical professional who claim psychosis rather than admit the inability to make a diagnosis, this article brings up some very important points and unanswered questions as to what the fibers actually are. The lack of a match to any known fiber and the testimony from examiners should be a relevant determining factors to warrant a CDC investigation. At this point if the CDC’s findings are in favor of psychosis it would be more disturbing than the disease itself.

  20. #20 Susan James
    February 29, 2008

    You really expect the CDC to up to this challenge? They are still mopping up their mess after the Katrina disaster. That organization is entirely mismanaged and I have no faith in them whatsoever.
    The CDC off Center:

    http://tinyurl.com/27j8y6

    They have NOT even formally announced that they have begun this this research study through Kaiser Permanente, to the medical community directly. Why is that? Why not make a formal PUBLIC announcement to at least make physician’s aware of this Disease BEFORE another patient enters their office not knowing what this malady is.
    Why is this not mentioned BEFORE another adult or child is given a prescription or the parents told to get an over the counter pesticide which may or may not give them a life threatening disease such as leukemia later in life due to toxic exposure. This disease does not respond to lice or scabies treatments and people will continue to seek medical treatment and these treatments are INEFFECTIVE and DANGEROUS. As logic would have it, people will continue using them until their symptoms subside which they will NOT because this is NOT lice or scabies.
    To just sit there and say..”Well the burden of proof should be put upons those that believe” I say “HOGWASH.” Patients should not be put on trial when entering a medical establishment for treatment for a physical ailment. Shame on you who think this way. How lazy and complacent you have become to have such an attitude.
    People are suffering. Yes, these people are stubborn. So would you be if you had some awful ailment which nobody understood which the incompetent government dragged their feet in response to. Do you suppose these folks like to feel this way? Do you blame AIDS and Breast Cancer victims as well?

  21. #21 Alex
    February 29, 2008

    From what I’ve seen this condition is real but complicated by the ever growing number of nuts who choose to associate themselves with it. If you look at the Morgellons boards years ago, before it became widely known, and compare them with the recent year or two, you’ll notice an infusion of very vocal groups characterized by irrational fears of biotechnology and authorities who support the most absurd of conspiracies and are quick to insult and drive off the board anyone who dares to disagree or point out some of their absurdities. With their constant bickering they have silenced and driven off older, more rational members of these boards.

    Because people self-diagnose, confusion reigns. The Morgellons proper is about the fibers that can be seen under the unbroken skin or fibers that exit pores when skin is rubbed with some salve. Many people who self-diagnose simply have sores of varying etiology with embedded environmental fibers which they take for the real thing. Some have myasis and others appear to give off smells that attract to them various insects. Some have scabies and some clearly have nematodes, such as Strongyloides. And yes, some are simply nuts.

  22. #22 Smileykins
    March 1, 2008

    Originally, a small group of delusional parasitosis patients eventually hooked up with each other, online, in the mid 90s. Before that, they’d met over the phone, after a few related accounts from sufferers ran in Oklahoma news articles. The group first named this, “Elliot’s Disease”, in remembrance of a fellow sufferer who’d taken his own life.

    I think Good Morning America did a segment first, and the same journalist did an article for The Ladies Home Journal, on lindane poisoning around this same time period. As a result of that magazine article, hundreds of calls began flooding the National Pediculosis Association. That organization’s president acknowledged, and fully recognized, that the bizarre symptoms being reported were consistent with lindane poisoning, and she advocated for better product labeling, or a ban, to prevent further irreparable CNS damage and deaths. She, then, changed her tune and decided their unusual behavior deserved looking into in another, altogether different, way. Knowing nothing about delusional parasitosis, she actually said that it has never been studied epidemiologically, with a skin scraping studies, and arranged one through the State Health Department of Oklahoma. That was one of the “firsts” among surmounting disservices to such patients as these, who are in dire need of the right kind of help.

    A mother who’d refused evaluation for Munchausen Syndrome by Proxy, hooked up with this group, and founded her Morgellons Research Foundation, using the main component of the match-box sign, fibers, as the common thread to unite everyone. Furthering her agenda of trying to prove her offspring is really ill with what she says is a “new disease”, she had a ready-made following. Registrants to her site filled out her survey, and since delusional parasitosis has many different causes, she compiled, and kept changing, “her disease’s case definition” over the years. By doing so, her “new disease” became all inclusive, for anyone wanting to claim it as being what they have.

    The types of patients who’ve adopted “morgellons disease” has evolved into covering a wide range of people with physical and mental illnesses who lack insight into their conditions for various reasons. According to the MRF, ninety-five percent of these patients have seen an average of ten to forty doctors and rejected their diagnoses. The group, though, chooses to refer to these as “misdiagnoses”.

    A large portion of the patients also belong to the “chronic lyme” movement. A nurse practitioner whose reputation preceded her, concerning her treatment of patients with “that illness”, hooked up with the founding mother of “morgellons disease”. She hooked up with a prominent doctor of “chronic lyme” fame, too, whose reputation precedes him as well, and all three have used this “other new disease” to their advantage.

    There are others, too, and much more involved in this mess, but that’s a very brief synopsis. Due to time constraints, I haven’t provided sources, but if needed, I will be happy to. I don’t quite know what David Massaquoi means in saying there’s “no data” on this, because there has been a load of information since it all began.

  23. #23 Randy Yaskal
    March 6, 2008

    Mr Massaquoi:

    I left a message on your voice mail. I have many pics I can show you.

    Lesions start out as little teeny dots that open to a deep hole that gets deeper and takes a minimum of 6 months to heal.

    I just broke out in a new place overnight–about 50 pin holes that have now opened to a galaxy looking necklace of red on my chest area.

    Usually they come in a triangle of three or what looks like a vampire bite of two. These get a skin over them as they dig deeper. If you peel the top layer off with
    Sulfur and baby oil combined into a jell, you can arrive at the dual and triple holes beneath the newly created skin. Other times you will get a lesion that will have what appears to be a huge scratch line on both sides.
    Lesions of the type that are of this disease are totally different than pimples or regular scratches. VERY different yet dermatologists refuse to take a close look and send you to a shrink without proper protocol for
    diagnosing DOP ever being implemented.

    They also follow symmetry–which proves to me this is a autoimmune disease and systemic. The fatigue is horrible and equals that of MS.

    I took some of her Provigil to give it a shot at my fatigue–I am holistic and am against taking any drugs–but I tried a half tablet. I finally felt like my old self again. I doubt I will make a habit of it or go for my own.

    The brain fog goes away and comes back–you get used to it. The fibers, which I believe is the connecting thread–are in all body fluids–ALL body fluids and mucous and we are totally infested with whatever they are and it
    gets worse every year. It scares the hell out of most. It would bring you to your knees.

    This is why many take their lives–that and your hair falling out –the constant biting feeling and the non-healing disfiguring lesions that last for months and take the pigment with them when they go. I have to wear long
    sleeves in the summer in 90 degree heat with 90 % humidity. Such a party!

    There are guesses from Chemtrails to de-population methods by the Federal reserve elite–to a government pesticide gone array–but no one knows No one is testing multiple agars to see what destroys the fibers and I don’t
    know why this is not being done. It is the most logical. Destroy the fibers, and free most of their rampage with the human body.

    I do believe that Kaiser researching this is a joke–and a funny one–along with the CDC, who may be sincere to an extent–but I know someone with Pfizer that would love to have the grant money for research if the numbers
    for production of a drug to cure or relieve the symptoms could be realized by their actuaries. The bottom line for Kaiser is to show we are nuts so they don’t have to cover us or report to all the other insurance companies
    that they were the ones to prove a very costly discovery which will damage to a great extent all insurance companies bottom lines.

    The crazy that you may hear on sites is a chicken/egg scenario. Are crazies reporting a massive delusion?? No of course not–the lack of care and attention that brilliant hard working people receive once afflicted with
    this plague and the disfigurement due to its havoc on the lymph and other systems, inclusive of the brain lesions that occur, would cause any person to lose it and be thrown into the reality that Dr Marcus Welby and Dr House
    are figments of a WILD imagination by some people in Hollywood and that actuaries, coding for payments and insurance companies which run the medical
    profession and politics that run the rest, don’t give a flying F**k about us which causes us to go belly up, mentally.

    Then you have de-bunking web sites created by those that have never seen a real patient and dermatologist bullshitting in articles that are allowed to
    be published when they lack the facts–yet get peer review. It is maddening It makes one want to shout out CONSPIRACY or LUNACY.

    It is a harsh reality to face when struck down with an UNKNOWN disease This is especially true when there are “Smart” people out there running science
    and medicine that truly believe that nothing new can ever be found in the realm of disease–that is delusional—but that is what the GROUP THINK of the graduating classes of those in medical school are taught.

    And G-d forbid you educate yourself on the, Internet since no one will believe or help you–then the NEWS reports a new mental illness called Computercondria. Now we are suppose to be cows led to the slaughter instead
    of informed individuals and we should feel guilty about researching what the medical community and the politicians refuse to investigate. Such nonsense. It equals telling the Jews to not worry about the train ride or the showers
    Have we learned nothing from history?

    I am here in you need me. 434-974-7128 516-776-6258 and want to be a true and real voice of reason and not another talking head–we have so many of them working against us–close minded talking heads governed by group
    think–such a sad state of affairs.Hopefully you have the stomach to be on the side of the real truth. It takes guts, individuality and a strong thick skin.

    Finest regards,

    Randy Beth Yaskal

  24. #24 Randy Yaskal
    March 6, 2008

    Mr Massaquoi:

    I left a message on your voice mail. I have many pics I can show you.

    Lesions start out as little teeny dots that open to a deep hole that gets deeper and takes a minimum of 6 months to heal.

    I just broke out in a new place overnight–about 50 pin holes that have now opened to a galaxy looking necklace of red on my chest area.

    Usually they come in a triangle of three or what looks like a vampire bite of two. These get a skin over them as they dig deeper. If you peel the top layer off with
    Sulfur and baby oil combined into a jell, you can arrive at the dual and triple holes beneath the newly created skin. Other times you will get a lesion that will have what appears to be a huge scratch line on both sides.
    Lesions of the type that are of this disease are totally different than pimples or regular scratches. VERY different yet dermatologists refuse to take a close look and send you to a shrink without proper protocol for
    diagnosing DOP ever being implemented.

    They also follow symmetry–which proves to me this is a autoimmune disease and systemic. The fatigue is horrible and equals that of MS.

    I took some of her Provigil to give it a shot at my fatigue–I am holistic and am against taking any drugs–but I tried a half tablet. I finally felt like my old self again. I doubt I will make a habit of it or go for my own.

    The brain fog goes away and comes back–you get used to it. The fibers, which I believe is the connecting thread–are in all body fluids–ALL body fluids and mucous and we are totally infested with whatever they are and it
    gets worse every year. It scares the hell out of most. It would bring you to your knees.

    This is why many take their lives–that and your hair falling out –the constant biting feeling and the non-healing disfiguring lesions that last for months and take the pigment with them when they go. I have to wear long
    sleeves in the summer in 90 degree heat with 90 % humidity. Such a party!

    There are guesses from Chemtrails to de-population methods by the Federal reserve elite–to a government pesticide gone array–but no one knows No one is testing multiple agars to see what destroys the fibers and I don’t
    know why this is not being done. It is the most logical. Destroy the fibers, and free most of their rampage with the human body.

    I do believe that Kaiser researching this is a joke–and a funny one–along with the CDC, who may be sincere to an extent–but I know someone with Pfizer that would love to have the grant money for research if the numbers
    for production of a drug to cure or relieve the symptoms could be realized by their actuaries. The bottom line for Kaiser is to show we are nuts so they don’t have to cover us or report to all the other insurance companies
    that they were the ones to prove a very costly discovery which will damage to a great extent all insurance companies bottom lines.

    The crazy that you may hear on sites is a chicken/egg scenario. Are crazies reporting a massive delusion?? No of course not–the lack of care and attention that brilliant hard working people receive once afflicted with
    this plague and the disfigurement due to its havoc on the lymph and other systems, inclusive of the brain lesions that occur, would cause any person to lose it and be thrown into the reality that Dr Marcus Welby and Dr House
    are figments of a WILD imagination by some people in Hollywood and that actuaries, coding for payments and insurance companies which run the medical
    profession and politics that run the rest, don’t give a flying F**k about us which causes us to go belly up, mentally.

    Then you have de-bunking web sites created by those that have never seen a real patient and dermatologist bullshitting in articles that are allowed to
    be published when they lack the facts–yet get peer review. It is maddening It makes one want to shout out CONSPIRACY or LUNACY.

    It is a harsh reality to face when struck down with an UNKNOWN disease This is especially true when there are “Smart” people out there running science
    and medicine that truly believe that nothing new can ever be found in the realm of disease–that is delusional—but that is what the GROUP THINK of the graduating classes of those in medical school are taught.

    And G-d forbid you educate yourself on the, Internet since no one will believe or help you–then the NEWS reports a new mental illness called Computercondria. Now we are suppose to be cows led to the slaughter instead
    of informed individuals and we should feel guilty about researching what the medical community and the politicians refuse to investigate. Such nonsense. It equals telling the Jews to not worry about the train ride or the showers
    Have we learned nothing from history?

    I am here in you need me. 434-974-7128 516-776-6258 and want to be a true and real voice of reason and not another talking head–we have so many of them working against us–close minded talking heads governed by group
    think–such a sad state of affairs.Hopefully you have the stomach to be on the side of the real truth. It takes guts, individuality and a strong thick skin.

    Finest regards,

    Randy Beth Yaskal

  25. #25 cjmayo
    March 6, 2008

    Wake up world,this is as real as the day you’ll die.I wonder how many of your loved ones will die of this awful disease,before the world wakes up to the fact….its not delusional.Please help find the cure before we all have this nightmare.I can’t tell you the pain and suffering I’ve seen with my own two eyes….it will only get worse.

  26. #26 Anonymous
    December 19, 2010

    I don’t know that much about Morgellon’s, but when I was dealing with another internet “meme” I realized it had a lot in common with something I myself am dealing with. I should note that I’m an anthropologist so the term “meme” is actually not the best one to use to explain internet belief systems.

    I have been harassed intermittently. This harassment often took the form of stalking – mostly odd phone calls, some vandalism, etc. I ignored it and kept on because since there was no one to blame this on there seemed to be little that I could do.

    The harassment took an overt form in 2006-7 and I continued to ignore it. In 2009, I began to be cyberstalked. This was done in the presence of being someone I knew. The stalking was constant. It turned into threats of hacking. Apparently I had been hacked all along and didn’t know it. When the threats turned violent, I went to law enforcement, FBI, Homeland Security, State Attorney’s Office. Even with the amount of evidence I collected it took me months to get a case number.

    Meanwhile, there were some unusual threats to violence. At that time, I was getting what felt like electric shocks in my system. I had never felt anything like that before. These shocks were “forwarned” by the harassers.

    As I searched the net for some information, I came across “Organized Stalking and Electronic Harassment” which is sometimes part of the “Mind Control” camp. Certainly I didn’t believe myself to have an implant or be mind controlled but indeed I was being stalked and the shocks felt like they were done by a taser.

    The symptoms described by victims are not exactly the same as mine. For example, many claim to hear voices and I do not. I have the tinnitus and strange buzzing sound but no voices. Also, I have a lot of phosphenes that appear to be linked to the tinnitus hissing. In addition, the symptoms are generally in my bedroom, they are not present everywhere I go. (Other victims claim that there is nowhere that “the signal” can be broken.)

    It seemed close enough for me to believe it. The problem is that with the organized stalking camp, at some point it seemed impossible to me that there was an underground network of perpetrators. Also, I was very polite to others claiming to be victims, but their belief systems seemed very unusual to me. Many of those beliefs as it turns out mimic right wing conspiracy theories that I had never heard of. In addition, there were extreme religious beliefs, end-of-world scenarios etc.

    I began to think like a denier. The fact that I have evidence meant that I wasn’t imagining this. Also, I could not find on my *hacked* internet information that would explain away my symptoms. When I took a step back, I could see that many posting were either intentionally misleading victims or they were victims who had been misled.

    When I came across the idea of “Morgellon’s” as an internet meme, suddenly a lot of that made sense.

    I finally found something to match my symptoms that also would explain the fact that I wasn’t delusional or crazy in believing I felt the shocks. The symptoms I had were symptoms of partial seizures. In fact, many symptoms that “electronic harassment” victims claim are symptoms of various types of seizures – even the voices that some of the voices that some of them claim to hear could also be seizure related.

    I won’t dismiss them as “a bunch of delusionals” – I still have beliefs about this problem that don’t fit the mainstream views and wouldn’t like that term for myself. The truth is that all victims, patients, etc. deserve some form of dignity. Imagine for example that I didn’t have the stalking *with evidence* part and simply epilepsy in the form of the electric shocks and bizarre buzzing. I could have been scared to tell others and looking on the internet I would come across this idea of being zapped with microwave or DEW weapons. Then a person with a societally recognized illness (epilepsy) is now turned into a “delusional” person who is readily dismissed.

    I hope that people can understand that in terms of Morgellon’s. Whether the origins of whatever it is is external or internal, there should be respect for those suffering. In addition, even “delusional” people can have other illnesses besides psychiatric ones and deserve to have them investigated and treated just like anyone else.

    That being said, I don’t think I’m delusional nor epileptic though I’ve been having seizures for quite some time. I’m combing through the health system to see the right kind of neurologist to help sort this out. Whether I have understood what this is about is still something to be resolved. My case has both evidence and a case number (and no resolution which can lead me to certain conclusions). The horror of what I’ve been put though as well as the timing of the events with other significant stressors in my life makes it hard to explain my story to others. Despite what I had mistakenly been led to believe about this, I do still believe it is involuntary human experimentation and that the internet part of the experimentation is also a way of getting around informed consent. But as they say, even informed consent does not make a research study ethical.

  27. #27 Anonymous
    December 19, 2010

    Sorry for the run-on sentences. Some other factors you will note in those claiming to be victims is hypergraphia, run-on sentences and strange typing errors. This would back up the theory that they are having seizures.

  28. #28 teresa adams
    June 12, 2011

    I have Morgellons,not the kind that is in my mind either.Where can I get help after being turned away from by doctors that say I am crazy even after a pychologist found me sane at the ER in Iowa City two weeks ago.I have been sick since 2007,have all the Morgellons symptoms yet can’t get any help.I know there is no cure yet but I can’t get any help at all.Just laughed at.

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