White Coat Underground

Saturday morning reflections

I had this great idea for my PalCast today, but I have a cold and my voice is squeaking like a twelve-year-old boy, so I’m just going to have to write. I woke up a little early—I love mornings. I opened up the back door to listen to the wind blowing through the new leaves, to the birds, and to my coffee maker. It was perfect peace—until the game started up at the nearby high school. The PA carries right into my family room. That’s what happens when you don’t get up early enough. You start with being able to imagine you are sitting alone in a meadow and rapidly find you are actually in the middle of a busy suburban neighborhood. Which is OK too.

Still, despite the intrusion of traffic noises and high school softball games, the breeze feels good. And, despite my cold, the coffee tastes good, and the lilacs are pretty—I planted them a year or two after we moved in, and they’ve thrived.

It’s hard to imagine what it must be like to look out at this beautiful morning and wonder, “can I take another day of this?” That’s the kind of suffering I’ve seen from people who are suffering from vague and undefined ailments. There’s a certain, I don’t know, completion I suppose to having a clearly defined illness. While it isn’t a good thing to have heart disease, no one tells you you’re not sick. Not so with people with more vague and protean symptoms. It’s human nature to want answers, to try to understand patterns, and when we, as physicians, cannot help someone understand their symptoms, they’re going to reach out to others for answers.

The Lyme disease community is like that. The internet has helped them to form communities and to share information. This whole idea of “chronic Lyme disease” (CLD) has become a way for people who don’t feel they have a medical home to come together. I understand that impulse. Any human being should be able to understand it.

But the other side of me, the analytic side, has a problem with it. No, not a problem with people supporting each other, but if you read these websites, message boards, etc., you can see a certain commonality—people aren’t getting any better. They are still suffering. Much of that suffering is blamed on a heartless medical community, and when they find a “Lyme literate” doctor, there is a huge sense of relief. But the symptoms often continue.

The very idea of CLD is not implausible (as opposed to Morgellons and other such fake diseases). Other spirochetes give us models for diseases with extended, multi-system effects, syphilis being the most studied. One of the key concepts in science-based medicine is plausibility, because, as Dr. Harriet Hall puts it, no matter how much you study the characteristics of the tooth fairly, you still haven’t proven her existence. But CLD certainly has a plausibility to it, and if an idea is plausible, then it is certainly worth studying and gathering evidence.

The evidence so far has been fairly clear: lyme disease is a common, tick-borne illness that can cause a host of symptoms days to weeks to months after initial infection. These clinical syndromes, such as Lyme arthritis, neuroborreliosis, and carditis are fairly well described. Part of the problem is epistemology and ontology—what is a disease? We have a couple of ways of going about defining diseases. One pathophysiological; if we can see clearly define a disruption of normal function or anatomy, there is a satisfying clarity. Another is genetic; if we can trace pathophysiologic changes to a specific genetic change, Bingo! Of course, genes are rather complicated, and the relationship between genotype and phenotype can sometimes be frustratingly variable. But no one said science would be easy.

The least satisfying way of defining a disease is syndromic. Humans are pattern monkeys, which is both a good and a bad thing. The earliest medical texts were descriptive, and defined illnesses by their outward manifestations, the inner workings being inaccessible to the ancients. We still are forced to resort to description from time to time in medicine. For example, in the 80’s a new disease emerged which didn’t appear to be any single disease but a grouping of different diseases and symptoms with some commonalities. We called this grouping “Acquired Immune Deficiency Syndrome” to acknowledge the fact that all the patients had immune dysfunction and all appeared to have “acquired” it rather than having been born with it. It was called a “syndrome” rather than a disease because it was more of a grouping of illnesses and the unifying pathology wasn’t yet understood. (Now, of course, HIV disease is one of the best understood illnesses in human history.)

Ultimately, the goal of defining a syndrome is to look for the disease or diseases that may underlie the symptoms. We realize that when we define a syndrome we may improperly include and exclude patients from our net, but we try to come up with rational definitions so that we may find the cause. “Syndrome” is more of a tool than an explanation but it can be a very useful tool.

Where this breaks down pretty spectacularly is when we define a syndrome poorly, or make too many assumptions. This is one of the fundamental problems with chronic Lyme disease. Let’s look at this from both ends.

One way of defining a disease is to create criteria and then look for “victims”. We (think) we know what Lyme disease is: in the U.S. it is an infection with a spirochete known as Borrelia burdorferi sensu strictu. This infection can cause a number of symptoms, some of which are a direct result of the infection and some of which are immunologic (which hardly makes it unique). We can define this illness by pathophysiology, anatomy, and microbiology. This inherently limits who we can call a Lyme disease patient. For example, if someone comes to me with knee pain, but has not been to a Lyme-endemic area, has no other signs of Lyme disease, and tests negative for Lyme disease antibodies, we will not label this patient as having Lyme disease. But these lines are, unavoidably, going to blur in some patients. Despite our knowledge of medical science, there is sometimes a small bit of arbitrariness in designating someone as having a disease. But that arbitrariness is smaller the better we understand a disease. Still, when we designate someone as having a disease based on them meeting criteria we set, we will accidentally leave some people out.

The other way to understand illness is to gather in victims and try to shove them into a disease. If we see a pattern, such as people suffering from similar symptoms and no known cause, and we have a disease that might explain their symptoms, it can be tempting to shove these people into that disease category. This approach will have the opposite type of error to the first—we will accidentally diagnose people with the disease who do not in fact have it.

We try to minimize both of these types of errors, but since we are dealing with real people, these errors can lead to real suffering. When it comes to chronic Lyme disease, self-defined victims feel we are making the first type of error, and most medical scientists feel we are making the second. Are these irreconcilable differences?

Yes, and no. There are ways we can help reconcile these differences, and ways in which we can drive people further apart. The most important fact is that people are suffering. Part of this suffering is the feeling of being ignored, or worse, dismissed. No matter what we as doctors do, some people will always feel this way. But currently, many more do than need to. The sense of victimization felt by some of the CLD folks has become part of their identity. We need to help avoid making people feel victimized. When they do, they will run into the arms of any charlatan who gives them an answer, and be further victimized. This reconciliation is going to require a great deal of patience, but it will happen, with time. As much as people might not believe it, science always brings the closest approximation of the truth—but sometimes it takes time.

Comments

  1. #1 Blake Stacey
    May 9, 2009

    I remember reading somewhere on the Internets the conspiracy hypothesis that Morgellons was invented as viral marketing for the movie A Scanner Darkly (2006), based on the Philip K. Dick novel of the same name. The immediate response to that conspiracy was a meta-conspiracy: the claim that Morgellons was invented as viral marketing was itself viral marketing. Pile on enough meta-layers, and it basically becomes true. . . which itself gives one the feeling of being trapped in a Philip K. Dick novel, or perhaps one by Thomas Pynchon.

  2. #2 Kathleen Lusson
    May 9, 2009

    You are very good. Some researchers have unlocked the code to Morgellons disease and other diseases.
    http://www.espbotanicals.com
    Read about Mr Common Sense, this is very interesting; however, everyone is so super smart that what is “common” to them is “uncommon” to me. This is all so overwhelming and the scientific names are a foregin language. On the following website is a video of a man being interviewed regarding alfa toxins; very interesting.
    http://www.espbotanicals.com/news_morgellons_the_next_epidemic.html#Barbara_Minton_on_the_Topic_of_Morgellons_Disease

    Thank you all for your wisdom and perseverance. This is so convoluted–the use of all our heads and prayers together seem to be unraveling the mystery to a lot of unwxplained illness such as you write.

  3. #3 Arlenna
    May 9, 2009

    Thank you PalMD. These are exactly the kinds of things I was talking about in my emails to you. I appreciate you sharing your thoughts.

  4. #4 LymeDead
    May 9, 2009

    You are making this so complicated, but I am glad you talk about it, especially since you are a doctor. First, infectious disease is just that, and most Lyme infections persist merely because they were never treated correctly in the first place. The spirochaetal behaviour was known. Now we learn it hides in fibrin, yet there is talk of biofilms, lipoproteins, and more. Just study it, you guys. You’re doctors. Just get it done. There is an infectious disease, and at least three of them are in the ticks. I have had Lyme, undiagnosed for decades. When the treatment began, I had worse symptoms but my doctor was smart–he modulated the treatment as needed. It’s a process, like nature. Just wait–Dengue Fever, Tularemia, Malaria…they’re all headed our way. We better get smart. Internists and hospital emergency rooms are not doing their jobs on these things.

  5. #5 PalMD
    May 9, 2009

    that was really a stunning display of biological and medical mis-information that will not advance the discussion in any way.

  6. #6 Kathleen M. Dickson
    May 9, 2009

    I see that you never looked at the historical
    data on Relapsing Fever and I also see that you
    never looked at IDSA’s own treatnent failure
    data- the data refused to turn over to the
    CT AG.
    http://www.actionlyme.org/RICOCHRON.htm
    http://www.actionlyme.org/PRIMERSHELLGAME.htm
    http://www.actionlyme.org/BRAIN_PERMANENT.htm

    You always like to argue the non-facts around
    the issue. I think you have one of them new
    forms of mental illness.

    Kathleen M. Dickson
    http://www.actionlyme.org
    http://www.relapsingfever.org

  7. #7 Anonymous
    May 9, 2009

    Ticks spend all but a fraction of their long lives underground with the biggest and oldest Biomass life form on our world

    bacteria!

    Dr you can not be Fully “Lyme literate” doctor till you fully understand this highly evolved “single cell” life form and what it means to us

    http://www.ted.com/index.php/talks/bonnie_bassler_on_how_bacteria_communicate.html

    Morgellons fake ? think again !

  8. #8 LanceR, JSG
    May 9, 2009

    How bacteria communicate? Do tell!
    *reaches for the popcorn*

  9. #9 bob
    May 9, 2009

    Why did that guy put “single cell” in quotes? Are they denying unicellular life now? Never ceases to amaze!

  10. #10 Blake Stacey
    May 9, 2009

    “Bacteria are complicated! Therefore I’m right!”

    In the words of my generation: . . . wait, what?

  11. #11 "them"
    May 10, 2009

    Dr Bonnie Bassler

    Why you should listen to her:

    In 2002, bearing her microscope on a microbe that lives in the gut of fish, Bonnie Bassler isolated an elusive molecule called AI-2, and uncovered the mechanism behind mysterious behavior called quorum sensing — or bacterial communication. She showed that bacterial chatter is hardly exceptional or anomolous behavior, as was once thought — and in fact, most bacteria do it, and most do it all the time. (She calls the signaling molecules “bacterial Esperanto.”)

    The discovery shows how cell populations use chemical powwows to stage attacks, evade immune systems and forge slimy defenses called biofilms. For that, she’s won a MacArthur “genius” grant — and is giving new hope to frustrated pharmacos seeking new weapons against drug-resistant superbugs.

    Bassler teaches molecular biology at Princeton, where she continues her years-long study of V. harveyi, one such social microbe that is mainly responsible for glow-in-the-dark sushi. She also teaches aerobics at the YMCA.

    “She’s really the one who’s shown that this is something that all these bacteria are doing all the time. And if we want to understand them, we have to understand quorum sensing.”

    Ned Wingreen, Princeton, on Nova ScienceNOW

  12. #12 Carla
    May 10, 2009

    I’m sorry but Morgellons is very very real.

  13. #13 carla
    May 10, 2009

    I’ve just read your comments on vaccines.Your a doctor!
    PLEASE do everyone a favour and get a job at McDonalds instead.

  14. #14 Jimbo Jones
    May 10, 2009

    And thus, Carla displays incredible ignorance and begs to be ignored.

    Spectacular.

  15. #15 Cherie Larimore
    May 10, 2009

    Morgellons is real. Please get your facts straight. You could start with Dr. Randy Wymore’s research at Oklahoma State University.

  16. #16 Barb
    May 10, 2009

    Cherie Larimiore,

    Who are you kidding? Dr. Wymore can be thanked for only turning the morgellons controversy into a circus act and delaying any real research.

    Name one reputable scientist that Dr. Wymore has been able to recruit any serious attention from! The only thing Dr. Wymore has acquired to do is to distance himself from other researchers and “continue the morgellons craziness”.

    I do feel sorry for those afflicted with morgellons. Even more sorry if they additionally suffer from “Delusions of Dr. Wymore”.

    If Dr. Wymore was for real, at this point in time, a legit scientist would be interested in obtaining some morgellon fibers and going to their local police department to repeat the “forensic” test.

    Frankly, it doesn’t even take a “Scientist” to pass the fiber analysis to a Forensic Lab. It can be done by any “laymen” with friends in a Forensic Lab.

    That is precisely what Dr. Wymore did.

  17. #17 PalMD
    May 10, 2009

    I gotta admit that as interesting as quorum sensing is, no one who throws the term around has explained why it is relevant to this discussion.

  18. #18 LymeDead
    May 10, 2009

    PalMD, pls explain what was “stunning display,” e.g. was it the fibrin mention? Because that’s real, proven. Others claiming biofilm, etc.–my point was that I don’t see it, but I am not (clearly) a doctor. Or was it that infectious disease is headed our way? It’s already here. Morgellons does exist in Maryland, by the way, and whatever it is, those ppl need help. The Lyme communities online do present, as you say, an interesting situation. Many do not get well, because they were never properly treated, and, borrelia is not understood as well as needed. But there are some very straightforward, well trained doctors who are succeeding–you just aren’t seeing online. What do YOU do when a patient presents with Lyme-like symptoms? I was tested, treated, and regained my brain fairly soon. The rest will come, I hope and believe. But we are proceeding medically, not in concert with a movement of any sort.

  19. #19 Amelia Withington MD
    May 10, 2009

    I am a physician who has chronic Lyme Disease and Morgellons Disease, and I treat patients who have both. While it is tempting to look to history for a “simple” explanation about how diseases such as spirochetes behave, I have come to believe we are in a “strange new world” of medicine…..

    Just as syphilis was once more virulent and deadly than it is now, I believe the Lyme spirochete has mutated to become more difficult to detect and to eradicate. This is greatly complicated by the fact that the Lyme bacteria often travels with many other bacteria which cause coinfections that make detection and treatment even more difficult. This is also the case with Morgellons.

    I invite anyone who is interested in this subject to review the transcript of my talk given at the second annual conference in Austin on the New Morgellons Order website, “www.thenmo.org”. The excellent DVDs from last year show Dr. Raphael Stricker explaining how and why ticks are indeed “sewers of infection” and how the DNA of Lyme spirochetes and agrobacteria resemble each other so closely that they do appear to be exchanging DNA, which then tries to grow the bizarre cellulose/crystalline fibers about which even my dermatologist says “I’ve never seen that before”….

    What Dr. Stricker describes was also detailed by an English physician in the 1600s, so there is some historical precedent. But there seems to be much more involved in “modern day Morgellons”. Though I don’t know what accounts for much of what is happening, it would be a disservice for me not to speak up and say it is all too real.

    There are not enough hours in the day for me to try to convince people who do not want to believe, that it exists–I can only hope they will review all of the information available with an open mind, because this IS a case where “truth is stranger than fiction”, and the more you are willing to look, the more you will learn……

    Dr Wymore has spoken at both conferences. Please review his actual research. I respect his work, and the fact that he refrains from speculation. It is very helpful for me to hear what this is NOT–at least we know what is being ruled out in the samples of these particular individuals, how it is being done, and why. There may well be other findings elsewhere, in other regions of the country or the world….

    Please also review Dr. Stricker’s excellent address to the IDSA this past July in JAMA–you can view it on the website “www.lymepa.org”. Chronic infectious diseases traveling together is not new, but the WAY I experience the phenomenon, and see it happening, is truly an ongoing challenge. He and Dr. Savely’s treatment regimens, individualized for each patient and detailed in the NMO conference DVDs, ring true for my experience and those of my patients. For now, I am approaching it like managing HIV, in many ways…

    I hope Dr. Pal and readers are willing to review these presentations and articles and consider how to tackle the challenges ahead in a spirit of collaboration.

    Wishing you all good health and peace,

    Amelia Withington, MD

  20. #20 PalMD
    May 10, 2009

    Just as syphilis was once more virulent and deadly than it is now,

    Further explanation of this curious phrase is certainly warranted.

  21. #21 Gwen Simmons, R.N.
    May 10, 2009

    Dr. PalMD,
    Yesterday, I received a Google Alert containing information from your website regarding Morgellons Disease. Most alerts are blogs that contain summaries &/or opinions of Morgellons information and issues. I usually just delete them. However, my interest was captured when I noticed that this was from an MD’s website.
    I was impressed by your seemingly genuine expression of concern and empathy towards, “… people who are suffering from vague and undefined ailments”. Then, you came out with, “The very idea of CLD is not implausible (as opposed to Morgellons and other such fake diseases)”.
    I suddenly realized that you must needed to be enlightened about the reality of Morgellons Disease. If you had the most current information regarding this very real disease, you could not possibly have made such a statement.

    Yes, I have Morgellons, infected in 2001. I am, also, one of the many Registered Nurses (lic. 32 yrs) afflicted. At my onset, I was working for the local Public Health Department as a Community Health Nurse (14 yrs) and before that I worked as Charge Nurse in the Cardio-vascular/ pulmonary sub acute units at a major hospital. I was forced into taking a medical disability leave in 2002 due to Morgellons. In 2003, I was the fourth patient in the U.S. to be diagnosised with Morgellons. I have stories, but, today, I want to share some facts about this “fake disease”..

    Morgellons is a multi-symptom disease also referred to as the ‘Fiber Disease’. Medical research started in earnest in 2005 at Oklahoma State University Center for Health Sciences in Tulsa by Dr. Randy Wymore. The most unique feature of this disease is the fibers, which develop in the (intact) skin. Morgellons has frequently been misdiagnosed as Delusional Parasitosis or an Obsessive Picking Disorder.

    Initially, most cases in the United States seemed concentrated in specific geographic regions of California, Texas, and Florida. As the public has become more aware, cases are now reported throughout the US,. The number of registered households is in excess of 20,000 +. It has also been reported worldwide in places such as Europe, South Africa, Japan, The Philippines, Indonesia, and Australia. Since Morgellons is not as yet an officially reportable condition, the actual number of cases could possibly be in the millions.

    You made reference to “science-based medicine ” with “ways of going about defining diseases” specifically ” pathophysiological & genetic”. The main center for our research is Okalhoma State University Center for Sciences located in Tulsa. Even with OSU’s generous offter to host the research, the process is long and very expensive. Funding is from donations and that is a very ineffective way to run a research project. At the Annual Morgellons Medical/Scientific Conference (Austin, TX. April 4, 2009) this was the update presented:
    ————
    Morgellons Disease Research Updates
    Randy S. Wymore, Rhonda L. Casey, Mark Bosey, Ron Pogue, Jennifer Burkeen

    Joint efforts by Oklahoma State University, Center for Health Sciences faculty, and the Tulsa Police Department Forensic Science lab have confirmed that the unusual fibers from the skin of Morgellons sufferers are neither textile nor known environmental contaminants. Forensic microscopic analyses showed that the fibers were not extruded and neither end was sheared, as would have been expected with commercially synthesized textile fibers, nor were they cotton or other naturally occurring plant or animal fibers. FTIR-spectroscopy analyses suggest that the fibers are a relatively pure organic substance but they do not match any known compounds. The vivid blue and red colors of the fibers are not pigments or dyes in any conventional sense, as they are not extractable using various solvents or detergents. Concentrated acid, bleach, and hydrogen peroxide change the colors, suggesting that the colors may be associated with a particular ionized state of atoms in the fibers. The fibers are extremely temperature stable and GC-mass spec resulted in only the release of carbon dioxide. Preliminary SEM elemental analysis suggests the presence of calcium, chromium and silver. Further SEM, spectroscopy, PCR, and other experiments are ongoing.
    —————
    As you can see, qualified, well-respected scientists are conducting true scientific/medical research. Our (gratis) Director in charge of research is Dr. Randy Wymore, PhD. He is a very open and approachable person. If you would care to explore the research issues and reality of Morgellons with him, I am sure he would be open to a talk..

    Are you aware that the Mayo Clinic, NIH, & CDC have recognized the reality of Morgellons Disease as a physiological illness? The CDC is nearing the end of an (initial) investigational research study. Officially, CDC sent out letters to all State Medical Associations December 16. 2008. In my opinion, if this investigational research study had shown nothing, the CDC would certainly have not wasted taxpayers’ money on postage, etc for this mailing. I hope that you received a copy from your respective State Medical Association. I would be happy to send you a copy, if you did not get one.

    There are numerous other real research reports listed at The Charles E. Holman Foundation website (http://thenmo.org/) as well as Oklahoma State University’s website (http://healthsciences.okstate.edu/morgellons/ .

    Dr. PalMD, I would hope that you would reconsider your reference to Morgellons being a fake disease. The thousands of patients suffering with this horrendous and life altering illness deserve compassion and empathic understanding.. We have come a long way from the non-believing doctors/medical practitioners encountered in previous years. Being a medical professional as well as a patient, I understand both sides. I have experienced first hand the indignities; I understand the need for validation. Morgellons patients are in the early stages of acceptance by the medical community, much like the HIV patients were. Being referred to as “fake” is going backwards. I wish that you would review what I have provided here and help advance our progress with positive articles or comments. At the very least, refrain from making hurtful statements without first educating yourself about it.

    Gwen Simmons, R.N.

  22. #22 weemaels henri
    May 11, 2009

    Bien sûr que la maladie de morgellon est bien réel. Permettez moi de rajouter que outre les fibres il y a aussi des insectes vivants et des vers qui peuvent sortir de la peau.
    C’est incroyable ,je sais ,pourtant c’est vrai.
    Mon épouse en est victime depuis 2004 et quand j’ai découvert sur le net que cette maladie éxistait j’ai pu en vérifier la pertinence . Cette” maladie ” est terrible également au niveau de la santé mentale. Depuis septembre 2008 sa santé mentale c’est fortement détérioré. Cela ressemble a de la névrose mais pas tout a fait cependant ( j’ai travaillé plusieurs années en psychiatrie ). Ses troubles de comportements se raménent plutôt à une forme de “parasitage de la pensée “.
    Notre situation est devenue catastrophique. Nous sommes comme en enfer.Nous n’avons quasi aucune aide a part celle de nos enfants et des quelques amis qui nous sont restés.`
    Je prie avec ferveur,de tout mon coeur pour toutes les personnes qui en sont atteintes et pour leur entourage;
    Pour moi,le morgellon a été créé pour faire souffrir et pour déstabiliser les gens et les sociétés.
    C’est une arme biotechnologique.

  23. #23 PalMD
    May 11, 2009

    C’est incroyable ,je sais ,pourtant c’est vrai.

    Il y a, en fait, une autre hypothese; la maladie n’existe pas et vous avez tort.

  24. #24 Mary Crow
    May 11, 2009

    I wouldn’t be here if not for my Dentist’s intervention and chinese herbal footpad treatments along with chlorella tablets(natural chelation that doesn’t strip good bacteria). I have recipes for super powerful foods that give you a boost and regulates your system. What foods you might avoid. Articles and studies. I had all the classic symptoms and very ill. Since getting my teeth fixed and taking this treatment, I stopped having fibres, black specks, more tolerant of light, and hardly any brain fog. It works where no prescription drug could.

  25. #25 Julius
    May 11, 2009

    #19:

    Yesterday, I received a Google Alert containing information from your website regarding Morgellons Disease.

    This explains a lot. I always wonder why certain types of cranks (climate change ones come to mind, as well) seem to pop up on just about any blog post related to their pet topic, and start spouting their nonsense. I was beginning to think they were so obsessive they spent hours upon hours trawling the internet for brainwashed masses to enlighten… but it’s not *quite* that bad, Google does the trawling for them automatically.

    Other common features include pages upon pages of copypasta, insult the owner of the blog, and/or babble in a very patronising tone. That last one always gets me (it’s one that evangelical Christians also seem fond of) – bringing the topic up in a tone of “you’ve probably not heard about any of this before, so I’ll introduce you to it gently” when posting about climate change on the blog of a climate scientist, or about medicine to a medical blogger, or about Christianity to a former Christian…

  26. #26 Suzanne
    May 11, 2009

    Thank you for writing this post.

    I’d been reading anthropology and archaeology blogs for awhile and somehow in the linky blogosphere I landed on your site. I thought you might provide some good information and I could also peek in on a doctor’s perspective on treating patients. You have provided both and for that I am thankful.

    The inability to get answers, treatment and to be believed is what drives patients to alternative treatments. There are many more who simply give up which is equally dangerous because those people will avoid consulting a physician for fear of being dismissed yet again and risk their health further.

    My relationship with my internist was a very positive one, but at one point she was definitely out of answers. She suggested that I should be willing to accept that I might never have a definitive answer and that would should simply treat the symptoms individually. I was unsettled by this because it seemed to me that if someone could simply put all the pieces together we could arrive at a successful treatment regime. In my case the test results supported some type of disease process it just didn’t seem to fit into any box. This is where the frustration comes in.

    Thanks for explaining everything in a clear manner and giving me something to think about.

  27. #27 Mu
    May 11, 2009

    From Gene @ 19 ‘s quote from the definite article on the subject

    FTIR-spectroscopy analyses suggest that the fibers are a relatively pure organic substance but they do not match any known compounds….. The fibers are extremely temperature stable and GC-mass spec resulted in only the release of carbon dioxide. Preliminary SEM elemental analysis suggests the presence of calcium, chromium and silver. Further SEM, spectroscopy, PCR, and other experiments are ongoing.

    Does anyone else notice the the disconnect here? It’s an organic compound that’s temperature stable and consist of inorganic materials. And the leading scientist plans to use PCR on a material he’s just determined doesn’t contain any DNA (you get very distinctive patters in the GCMS for organic molecules, while he only sees CO2).
    I also like his use of SEM for elemental analysis (most likely he’s using EDS to determine surface chemistry, what you often get as a combined instrument with an SEM). But hey, it’s an abstract, written to impress Morgellon believers, not actual scientists.

  28. #28 SharonH
    May 11, 2009

    Hi, PalMD, you said:

    “‘Syndrome’ is more of a tool than an explanation but it can be a very useful tool. Where this breaks down pretty spectacularly is when we define a syndrome poorly, or make too many assumptions. This is one of the fundamental problems with chronic Lyme disease.”

    Nice to see you being thoughtful about the patient point of view, PalMD, and I highly agree with your statement. I have seen too many patients with debilitating symptoms being dismissed because their symptoms did not fit the standard definition, therefore, the symptoms must not exist! Instead of broadening the definition, all too often the patient was disbelieved.

    I also agree with Suzanne, who said, “The inability to get answers, treatment and to be believed is what drives patients to alternative treatments.”

    For a grad course, I did a survey of 40 patients who self-reported serious Lyme disease v. a control group who did not have Lyme symptoms. The Lyme patients nearly all began by going to their clinicians, turning to the Internet and non-mainstream treatment only when their doctor failed to alleviate their symptoms. (And some of those failures were pretty glaring, and occasionally quite mean.)

    The control group, with no severe symptoms, were more apt to look up less-severe aches and pains on the Internet prior to going to a doctor. Interestingly, 3 controls behaved like the Lyme group, going right to a doctor first, and elsewhere second. Of the 3, two reported having experienced severe symptoms.

    Being dismissed by doctors is not just a Lyme thing. It is an over-worked, pressed for time, dependent upon blood tests thing. Doctors don’t often see their patients grow up, in fact barely know them, so they have stopped listening to them. When it comes to emerging diseases, not listening may mean making too many assumptions and poorly defining the syndrome.

  29. #29 Arlenna
    May 11, 2009

    Yeah, determining at least the elemental composition of an unknown substance is really not that hard, and doesn’t require SEM. People do it in undergrad chemistry labs all the time. There are whole academic departments that do a pretty good job of identifying natural products… maybe they should get some of those experts to have a look if they think these are truly microbe-produced somehow.

  30. #30 Cherie Larimore
    May 11, 2009

    “Does anyone else notice the the disconnect here? It’s an organic compound that’s temperature stable and consist of inorganic materials.”

    Yes, we notice this!!!!! This is nothing like anyone has seen before. Morgellons doesn’t play by the rules.

  31. #31 PalMD
    May 11, 2009

    Ugh. The “rule” in this case are the basic laws of the universe. Ugh.

  32. #32 Menelik
    May 12, 2009

    The basic laws of the universe as it was in the GE-free Era dose not apply any more!

  33. #33 MorgellonsWiki
    May 12, 2009

    PalMD et al. As a doctor, you may want to keep your medical knowledge current with this change to the NIH’s MeSH database, made in early 2009: http://www.nlm.nih.gov/cgi/mesh/2009/MB_cgi?mode=&index=24984&view=concept :

    Skin and Connective Tissue Diseases [C17]/ Skin Diseases [C17.800] / Morgellons Disease [C17.800.518]

    Scope Note An unexplained illness which is characterized by skin manifestations including non-healing lesions, itching, and the appearance of fibers. There appears to be a strong association with LYME DISEASE ( http://www.nlm.nih.gov/cgi/mesh/2009/MB_cgi?mode=&term=LYME+DISEASE ).

    Thank you for considering this information from the United States National Library of Medicine published by the National Institutes of Health.

  34. #34 Mu
    May 12, 2009

    Cherie @ 28, sorry, I should have not used chemical jargon.
    For a chemist, he’s saying “they are white as snow, but all my tests show they are black as coal”. And to prove it, he wants to run a test that only works to distinguish between snow crystal shapes.

  35. #35 A.
    May 12, 2009

    Hmm interesting this dialogue. For an M.D. do you ever refer to the National Library of Medicine? Or the National Institutes of Health?

    You might peruse this link here:
    http://www.nlm.nih.gov/cgi/mesh/2009/MB_cgi?mode=&term==MORGELLONS+DISEASE .

  36. #36 PalMD
    May 12, 2009

    point, please?

  37. #37 Mu
    May 12, 2009

    the point is, it has it’s own subject heading. Nothing under that subject heading, but it’s a start *\o/*

  38. #38 Menelik
    May 12, 2009

    point!

    Agrobacterium tumefaciens & Morgellons Disease, A GM Connection?

    by Dr. Mae-Wan Ho and Prof. Joe Cummins

  39. #39 PalMD
    May 12, 2009

    I hardly need to point out that:
    1) this whole Agrobacterium thing has been debunked a million times, and
    2) You still can’t change the “basic laws of the universe” with GM foods. That’s just so damned stupid it hurts.

  40. #40 Gwen Simmons, R.N.
    May 12, 2009

    I really need to explain a few things, before I begin. I have Morgellons. I am very sick. Some days are better than others. My energy level runs down faster than a dollar store battery. In the beginning (2001), I was determined to find what was making me sick. Then, I planned to march into the Drs’ offices (of the ones that had failed me) and confront them with what I had uncovered. All I wanted was an apology (as well as proper medical care). Of course, this did not happen. Little did I (or any of us) realize how complicated this condition was. As an RN of over 32 yrs, I dedicated most of my life to medicine. I still cannot understand how the best medical minds in the greatest country ever could not figure out what was literally stealing my life away. I apologize for the emotional scene. If any one of you reading this had experienced what Morgellons patients have gone through, only then, could you possibly comprehend the paroxysmal commitment to learning the scientific & medical cause and treatment for Morgellons that we have. I am sure a few will post snide remarks and cutting analytical comebacks. Since my energies are limited, I may not be able to respond. Please know that I appreciate you took the time to read what I have written. At the very least you had to think about us “Morgies” for one minute. And, that’s a start to opening a mind.
    This article calling Morgellons a fake seems to be getting around the Internet at a rapid pace. In some ways, this can be viewed as positive. More people are learning about this serious condition as the debates and discussions continue. Morgellons is a very real and life altering disease. The CDC stated, “…Morgellons is an unexplained and debilitating condition that has emerged as a public health concern. …” The on going research is certainly science based and peer reviewed. This is one reason that it is taking so long. Oklahoma State University Center for Health Sciences generously is hosting the site for The Center for the Investigation of Morgellons Disease. The volunteer Director is Dr. Randy Wymore, PhD. (Here is a brief bit of information about him: “Randy S. Wymore holds PhDs in Physiology and Biophysics and Pharmacology; … has co-authored seventeen articles published in peer-reviewed scientific journals ;… was involved in cancer & heart disease research before taking on Morgellons”. Dr. Wymore came into the Morgellons arena as a skeptic. After viewing some actual lab specimens, he was soon convinced as to the reality of this condition. Since 2005, he has struggled through investigating Morgellons where answers only produced more questions and puzzling dead ends.
    Despite his full responsibilities as a Professor in the OSU Medical School & family obligations, Dr. Wymore volunteers his time to research Morgellons Disease. We are fortunate to have him. Any other qualified scientists that would like to join his team are encouraged and welcomed. Please contact Dr. Wymore at OSU via email which is on his website.
    http://healthsciences.okstate.edu/morgellons/

    Before citing Morgellons as a “fake disease”, at least consider the known facts. The thousands of patients suffering with this disease, deserve proper medical management. Presently, many more medical professionals are opening their eyes, minds, & offices to Morgellons patients. After taking time to read the facts for themselves, these caring individuals have realized the truth. For anyone that is interested in further information, I have included links:

    http://healthsciences.okstate.edu/morgellons/
    http://thenmo.org/
    http://www.cdc.gov/unexplaineddermopathy
    http://www.clongen.com/morgellons_disease.php
    http://www.morgellons.org/

    Thank you for your time.

    Gwen Simmons, RN

  41. #41 Menelik
    May 12, 2009

    How can something that has never been studied be debunked a million times? now that hurts,Or am I being Ignorant please share one or two of your informed sources.

    please note I never said it has been proven, while you are set that it is impossible and you are also set that transgenic DNA manipulation using bacteria can’t have any affect on us or the laws of nature no matter what,If I’m understanding you correctly then thats all.

    Thank you for taking the time to listen.

  42. #42 Jennifer Miracle
    May 13, 2009

    When my sister first told me she had fibers coming from her knees I thought she had jumped over her fruit stand.

    If you try this you will see Morgellons is real.

    Only seeing is believing on this.

    A kids eye clops scope hooked to the yellow T.V. jack will reveal red, blue and black fibers which are submerged and semi submerged in the skin around the eyes and foreheads of almost everyone.
    These fibers appear to be worm like with a bulbous head.
    They move very slow.

    Randy Wymore of Oaklahoma University has explained that in those who self identify as having Morgellons there also appears in the 2 layers down (subcutaenously) a single continous embedded fiber.

    I have no idea what this is but I know it is there and we all need to be jumping over our fruit stands until we get some answers , it sure looks like Medical techno
    gone fruity.

  43. #43 Cherie Larimore
    May 13, 2009

    Wow. I was not aware that anyone had a complete knowledge of the basic laws of the universe.

  44. #44 Amelia Withington MD
    May 13, 2009

    “Syphilis was considered more deadly and virulent than it is now” because there is much better detection and treatment now, and the some of the spirochete’s characteristics have changed, as do many bacterial pathogens over time, as Lyme disease also appears to have done. Borrelia burgdorferi precursor spirochetes have been found in an ice age corpse recently discovered in a melting glacier. The evolution of the pathogens adds to the challenges of detection and treatment. The documentation is fascinating and bountiful.

    However, I also understand that it is a mistake not to consider syphilis as a possible lingering source of infection if it is left untreated. I have worked with several patients in various stages of syphilitic infections.
    Like Lyme, it still lives up to its old nickname of “the great imitator” since it can mimic so many other illnesses.

    The most interesting thing to me is that of all that I wrote, that is the one thing that piqued your interest or comment. Apparently you are not particularly interested in discussing the evolution nor treatment of infectious diseases, nor in hearing about other people’s experiences if they do not coincide with your own. I do not need anyone else’s validation in recognizing that Morgellons Disease is a condition whose presentation and recognition is evolving. Not long ago, peptic ulcer disease was considered to be due solely to a “nervous constitution”, until Helicobacter pylori was identified as the pathogen. Schizophrenia was believed to be due to “bad parenting”. The list goes on and on…..often stigmatizing the very patients who did not fit into the “mold” of what was believed at the time.

    As Dr. Wymore wrote today in a response to some of the recent discussions about possible parasitic or environmental toxin involvement, there is only so much time one can spend responding to e-boards. If anyone is interested in reading Dr. Wymore’s most recent research update, it should soon be available on the “www.nmo.org” website. Many thanks to Cindy Casey, Gwen Simmons, Randy Wymore, and the others who continue to make that site a source of information, inspiration and support.

    Dr. Pal, I hope that medicine will continue to be a source of intellectual curiosity and inspiration for you–I would encourage you to consider the words of Huxley quoted at the end of my speech, and go forth with an open mind–the wonders of science and medicine are ever-unfolding.

    Peace to you all, AW

  45. #45 PalMD
    May 13, 2009

    The reason i focused on that phrase “Just as syphilis was once more virulent and deadly than it is now,” is that it is emblematic of a horrid lack of understanding of basic medical science and medical discourse.

    Syphilis is not less “virulent and deadly”. It is just as pathogenic as it has always been. As to “deadly”, well, that simply depends on whether or not you treat it.

    Also, the analogy is bizarre. You compare the (non-factual) decrease in syphilis virulence to the (probably non-factual) increase in Bb’s pathogenicity. It just doesn’t make any sense.

  46. #46 medstudent6973
    May 14, 2009

    Amelia Withington MD? It’s not that often that you see MD’s talking about “Morgellon’s Disease” which is what caught my eye. You post that MD after your name with so much confidence! It’s with the same confidence that you type “Morgellon’s Disease” as if it’s even a controversy in the medical community. While I’m surprised that you graduated from medical school, I’m not surprised to see that you’re a psychiatrist. You clearly didn’t learn a thing about pathology. At this point, it would be referred to as “Morgellon’s Syndrome”… and explicitly NOT “Morgellon’s Disease”.

    As for Dr. Wymore’s recent discussions about toxins and parasites… just drop it. You’re doing a dis-service to anyone suffering from these symptoms by immediately hosting conferences and talks about Morgellon’s.

    IF DR. WYMORE HAD ANY WORTHWHILE INFORMATION… IT SHOULD BE PUBLISHED IN A PEER-REVIEWED JOURNAL.

    If you object to this standard of science, you’re effectively flipping the bird to the system that has provided you with state-of-the-art medical care, clean water, and ample food.

  47. #47 JohnV
    May 14, 2009

    Wait did we ever establish why quorum sensing was brought up? Seriously it would do wonders for my post-doc if I could tie my quorum sensing studies into something “new and mysterious”.

    Actually it probably wouldn’t and I’m not a fan of this field, but I’m still curious.

    @6, pubmed indexes 2200 publications for quorum sensing. You’re behind on your reading :p

  48. #48 Amelia Withington MD
    May 16, 2009

    Hello “medstudent6973″. Apparently you have not been doing your homework. Morgellons Disease is an entity recognized by the NIH as Lyme Disease-associated condition, and was given its own diagnostic code, by the name of “MORGELLONS DISEASE”, this January.

    Please also feel free to study, along with Dr. Pal the mutations in the protein coats of spirochetes, which include syphilis and Lyme disease. I do not find it bizarre to study patterns of spirochete morphology when considering them as an entity–you and Dr. Pal are entitled to your opinions, though, of course.

    One of the main reasons I may have an air of “authority”, though I am actually a humble person, is that I not only HAVE Morgellons, but I also treat a number of patients who have it. Please feel free to reference the web site “www.thenmo.org” is you would like to learn more about my experiences, and those of others who do have and treat this condition.

    It is immaterial to me whether you are surprised about anything about my training or experiences. However, the most important tool you can have as a physician will be to have an open mind. I hope you will be able to develop one, for the sake of your patients as well as your own. So far, I find that your “collegial communication” leaves a lot to be desired.

    For a less antagonistic discussion of Morgellons disease, with a wider variety of medical practitioners and researchers responding, readers’ time would be well spent on the “Scientific American” website, as an article about Morgellons was recently posted there.

    I’m also posting there more often as well, again, because the environment is far less antagonistic, and I learn more from those discussing and sharing their experinces.

    By the way, my friend and colleague Cliff Mickelson is also a folksinger, well known and appreciated by his fans. Worth a listen! Good luck, y’all–AW

    PS: Morgellons is at a stage analagous to that of HIV in 1981, as when I was doing research at the CDC, and it was known as “HTLV III”. My first book, published in 1983, is one of the first places where it was mentioned in a text. People who were treating those patients at the time did not have a group of publications approved by the current “standards of science” for reference. Nonetheless, there were suffering patients who needed help.

    Those of us who treat patients with challenging conditions will continue to meet and share our experiences as we learn more about their illnesses, by whatever terms they may be referenced at the time.

    And although ultimately, HIV+ patients may develop “Acquired Immune Deficiency SYNDROME”, by any name, a complex disease state or set of states continues to challenge those who choose to treat it.

    Thank you for your attention, AW

  49. #49 PalMD
    May 16, 2009

    Honestly, It’s rather hard to believe that someone who wrote the above graduated from medical school.

    Apparently you have not been doing your homework. Morgellons Disease is an entity recognized by the NIH as Lyme Disease-associated condition, and was given its own diagnostic code, by the name of “MORGELLONS DISEASE”, this January.

    You sure about that? Srsly, that’s just not true. Either you’re lying, or you’re…well, let’s just hope you’re lying.

  50. #50 PalMD
    May 16, 2009

    Re: collegiality: I’m never going to mock someone for being sick, but if you’re going to write stuff that’s patently false or ridiculous, and use the label “MD” to try to give it authority, the rhetorical gloves are off.

  51. #51 Amelia Withington MD
    May 16, 2009

    It amazes me that you continue this line of vitriol and foolishness. If you would like to see the exact name of the disease and the exact code it was given by the NIH, I invite you to go to the Scientific American site in which it was posted in full yesterday, if you are not able to find it on the NIH’s own site yourself. The codes and associated listings are on the Sci Am site so you can cross-reference with the NIH if you need that guidance.

    You, sir, are remiss in maligning a “fellow” physician about whom you know absolutely nothing. All of my information is available in the public domain; the research I have done, the books I have written and collaborated on, and the fact that I graduated from the University of Texas Southwestern Medical School in 1991. The name of my CDC collaborators and co-authors of the book “Teenage Sexual Health” are David A. Grimes, MD, FACOG, and Robert A. Hatcher, MD, FACOG.

    I will ve very interested to see if you actually post this.

    It truly does amaze me, though, that you are not aware that the NIH has named and coded Morgellons Disease as of this year. For shame!

  52. #52 PalMD
    May 16, 2009

    Wow. Just…wow.

    I’m not even sure what you mean that there is an NIH “name” and “code”. Do you mean an ICD-9 code? I’m not aware that the NIH is in charge of naming and “coding” diseases.

  53. #53 Amelia Withington MD
    May 17, 2009

    Thank you for asking. For research and reference purposes, the NIH characterizes and codes disease entities via “Medical Subject Headings” (or MeSH) in coordination with the National Library of Medicine.

    You can access it at the following site:

    “http://www.nlm.nih.gov/pubs/techbull/nd08/nd08_medline_data_changes_2009.html”

    Click on “Morgellons Disease” listed under “Category C Diseases”. It is outlined there as having “Tree number” C17.800.518, Previous Indexing “Skin Diseases, Parasitic (2006-2008), Unique ID D055535.

    It appears that the NIH is thinking differently than the CDC about Morgellons. The CDC research is ongoing, but I do not understand why it is being done over an extended period of years in only one state in the country, with Kaiser Permanente. I would prefer that the research be nationwide and independent of “managed care” interests, but any information will be useful……..

    I appreciate your interest, AW

  54. #54 PalMD
    May 17, 2009

    You’re kidding, right? You’re saying that because morgellons is a valid search term on medline that…what? That makes no sense. It’s like saying, “well, when i google morgellons, i don’t get an error message, so it must be true.”

  55. #55 daedalus2u
    May 17, 2009

    PalMD that is a very interesting and astute observation. You are exactly correct, to some people, simply because there is a name for something it exists. From John 1.1:

    In the beginning was the Word, and the Word was with God, and the Word was God.

    The only evidence they had for the existence of God was the name. To believers, that was enough. This relates to Val Jone’s post over at SBM on being influential vs. being correct. With the right name and labels for things people are influenced to believe.

    A name or a label can invoke a top down belief, even if that name or label can’t be defined.

  56. #56 Mr. Common Sense
    May 17, 2009

    PalMD, Mr. Common Sense here. If Pete D is serious on his offer can you have him contact me (you have my email now in this post). If Pete D. is serious I will put a call out for some Morgellons fibers that can be sent to him. My understand is that Gwen isn’t sending fibers and I don’t want to let the differences between our two groups get in the way of progress. I know there is hostility between or two groups but there is none from me. I am after the truth no matter where it leads. Please, can you email Pete D. and provide him with my email id and ask him to contact me. If he has the ability to look at fibers and is willing we would be absolute fools not to accept the offer. I for one want to get to the bottom of Morgellons.

  57. #57 stewart
    May 17, 2009

    People who are distressed are suffering. People who are suffering want a sense of control – they want a name for their suffering, and a toolkit to deal with it. Unfortunately, some people get so focused on the label that they assume it ‘validates’ (stupid expression) their suffering. The symptoms of CLD, CFS, FM, PCS, CSS/MCS, etc., are often vague and interchangeable, but generally don’t show a link to a specific condition.
    Right now, if you’re a patient, then accept that we can’t give you a complete explanation of your symptoms – but we can give some thoughts as to how to feel better, and it’s not through medication alone, but medication, lifestyle, self-expectations, etc. This sounds like Suzanne’s experience.

  58. #58 Carla
    July 19, 2009

    What a load of B O L L O C K S

  59. #59 Carla
    July 19, 2009

    DR Quack

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