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Thread: Morgellons Disease: I have it, and I am here to answer questions.

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    United States Avalon Member OneKind's Avatar
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    Cool Morgellons Disease: I have it, and I am here to answer questions.

    Greetings everyone,

    I am new to Avalon as a member though I've lurked a bit before. I joined for several reasons, including writing this post and answering questions.

    I have Morgellons Disease and my early experience is similar to the ones commonly told. I can attest to its non-recognition status as a multi systemic infection by otherwise capable and well meaning physicians (delusional parasitosis is the typical response). My family has doctors among us, and they erred too.

    I say this not to garner sympathy (which i prefer responding posts omit), but rather to shed some light on the suffering of the afflicted. My case is/was severe. I am demographically in the minority being male. I am also fairly young (30s). I cannot work, cannot receive health insurance, I've lost the majority of friends and acquaintances because they assume I am delusional ...perhaps a few fear contagious infection, I don't know, they don't talk to me.

    In addition to the well known skin lesions, there are dermal lacerations and severe neurological effects. From what I understand, there are varying experiences in this department. Mine manifested in what is best described as early onset Parkinson's Disease. Neuromuscular and motor control are compromised as shown through episodes of tremors and shaking. I have neuropathic pain. My memory is occasionally affected. The most troubling is the loss of gait control from time to time. I relied on a walker at points, but due to my vanity, I stayed home a lot.

    All of these things, the progressive nature of the disease, the alienation and ostracism, and the great unknown (how will this end and will it end me?) take its toll (I think this is called disease burden) and as such, psychiatric disorders arise. The isolation caused by the psychiatric problems is strongly reinforced by one's appearance and embarrassment, and the fear of infecting others.

    For the second time in my life, I feared that I was going to die - confused, in pain, and alone, mocked as a person who imagined his illness. There are no suicide metrics because not many risk their careers and reputation to study the disease, but I would not be surprised if the numbers reached the double digits for those with Morgellons.

    I know quite a bit about it. Some people are shooting a documentary about it which I will be in. I have read just about everything about Morgellons, listened to every podcast, read the journals (even the rejected papers and the articles which cost money), so I do feel like I can speak with some authority on it.

    If I don't know the answer, I will tell you so and tell you whatever I do know that's relevant. I am being treated by two of the leading researchers and have the disease in a remission state. The symptoms are episodic.

    That said, I am willing to answer any and all questions any may have, or to hear theories about.... well, any aspect of the disease. I am versed in the fringe theories too (and presently contemplate whether I am an MKNAOMI victim). Nothing offends me so fire away.

    Thanks for reading.

    (Edit: there is substantial evidence implicating the bacteria causing Lyme disease as a vector of introduction. Now Chronic Lyme disease is fascinating, especially the seemingly concerted effort to deny its existence. This documentary, "Under Our Skin" (2008) is the best introduction into the potential conspiracy http://www.hulu.com/watch/268761/))
    Last edited by OneKind; 9th December 2015 at 14:24. Reason: Bad link. Mupdating to add Hulu one.

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    Argentina Avalon Member Hazelfern's Avatar
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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Hi OneKind - the neurological effects, have they been determined to be part of Morgellons?
    All these symptoms manifested around the same time?

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Quote Morgellons Disease: I have it, and I am here to answer questions.
    Thank you! And a very warm welcome to the community here.

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    United States Avalon Member OneKind's Avatar
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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Quote Posted by Nonin (here)
    Hi OneKind - the neurological effects, have they been determined to be part of Morgellons?
    All these symptoms manifested around the same time?
    Yes, they have. Dr. Stricker and and also University of New Haven have good data indicating a connection with the spirochete causing Lyme disease (Borrelia Burdorferi). At this point the symptoms are considered linked though possibly part of two different diseases that more or less travel commonly together. Lyme disease has a number of common coinfections, including Babesia and Rickettsia (different from rickets).

    That said, there was not 100% correlation and I am in the mystery group that did not test positive for Lyme (which is different from a rickets). Complicating matters more was the fact that the available tests for Lyme were poor. Now, in http://www.biomedcentral.com/1471-5945/15/1, using DNA tests, the correlation is 96% in a sample size of 25 (24/25). These are more costly and time consuming making them less available than they should be. I have not had a PCR DNA test done.

    Here's the Univ. of New Haven site... http://www.newhaven.edu/news-events/...4-2015/847237/
    Last edited by OneKind; 9th December 2015 at 14:29. Reason: Clarifying DNA data

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Hi OneKind. I'm wondering how you finally diagnosed? I had a friend who passed a few years ago from an illness that could never be diagnosed. He had stomach problems, couldn't eat. He definitely had some kind of chronic wasting. My intuition told me it was Lyme 's disease. He told me he was negative for Lymes. I'm still convinced it was non - diagnosed Lyme's. He also had pain symptoms.

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    United States Avalon Member OneKind's Avatar
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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Okay... This is why I suspect that there is a more complicated political game being played.

    "The National Institutes of Health in the Unites States list Morgellons as a genetically caused disease, specifically due to Chromosome 1 duplication/trisomy of q42 11 Q42 12.

    Shown below is the hidden web page that was found while searching the phrase Morgellons 1 q42 11 q42 12.

    7/19/2006: The page is reported by NIH as last modified: The National Institutes of Health in the United States list Morgellons as a genetically caused disease. Included is a phone number to report cases and get disease information (assumption that it was posted for the medical community.) This page was not available to the general public.

    7/23/2007: Duplication/trisomy of 1q42 11 q42 12 page was found by Morgellons victim and posted to the public on internet sites.

    7/27/2007: Rapid deletion of all pages by NIH/CDC. No Traces of this page including cached copies of this page are available anywhere. (except here below)

    The NIH claims that the web page below was a clerical error. Do you believe them? It was posted on the internet for over a year and became an error only when found and questioned by a Morgellons victim.

    According to the NIH website found at aspensys.com Morgellons is caused by either duplication or trisomy of the chromosome 1q42 11 q42 12."

    (Accessed on Dec. 9, 2015: http://www.bibliotecapleyades.net/ci...rgellons16.htm)

    The CDC along with the U.S. Army funded the study denying its existence. As recent as this morning, there is news of a change in the CDC laboratory that would handle something like Morgellons.

    "CDC lab regulator replaced in wake of incidents with bioterror pathogens"

    (http://www.11alive.com/story/news/lo...gens/76999032/)

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Quote Posted by Ahnung-quay (here)
    Hi OneKind. I'm wondering how you finally diagnosed? I had a friend who passed a few years ago from an illness that could never be diagnosed. He had stomach problems, couldn't eat. He definitely had some kind of chronic wasting. My intuition told me it was Lyme 's disease. He told me he was negative for Lymes. I'm still convinced it was non - diagnosed Lyme's. He also had pain symptoms.
    I'm sorry about your friend, truly.

    Gastrointestinal distress including pain and wasting are common with chronic Lyme disease (the documentary Under Our Skin, if you haven't seen it, is a VERY useful film). I actually did have a tick bite at age four and have suffered from GI problems too. I am slim partly as a result of it. The lack of energy is common, especially since now they're finding out that the b. burgdorferi bacterium has intracellular invasive abilities wherein disruption of the mitochondrial process occurs. Because the mitochondria are where our ATP (virtually all our energy comes from ATP) is made, the extreme fatigue occurs.

    Negative for Lyme is misleading people left and right. Before the most recent generation of PCR DNA tests came out, there was technically no "negative" just "not a positive". The Western Blot test caught roughly 50% of confirmed positive Lyme patients. Terrible.

    "How did Lyme disease reach these epidemic proportions? Three major factors play a role. First, the clinical diagnostic criteria for Lyme disease are too stringent, with only objective signs of the disease, such as an erythema migrans rash, arthritis, meningitis, or carditis, considered relevant [7]. Many patients with late Lyme disease (up to 90%) will only display subjective symptoms of the disease such as fatigue, musculoskeletal pain, and neurocognitive problems, and these patients will often fail to be diagnosed and treated for the disease [3], [18]. Second, commercial laboratory testing for Lyme disease yields poor results, with a sensitivity of only 46% in patients who have been infected for more than 4–6 weeks. Thus, these tests miss more than half of Lyme disease cases [4], [19]. In contrast, testing for HIV/AIDS has a sensitivity of >99.5% and misses less than one in 200 HIV/AIDS cases [3], [4]. Third, treatment for Lyme disease is very restrictive, with CDC/IDSA clinging to the use of monotherapy with questionably effective short courses of antibiotics. This outdated approach contrasts with other serious infectious diseases such as tuberculosis and HIV/AIDS, where long-term combination antimicrobial therapy is the norm [4], [20]."
    (Accessed on Dec. 9, 2015 http://journals.plos.org/plospathoge...l.ppat.1003796)

    I was diagnosed with Morgellons on sight. It is a very unmistakable and visible disease when symptomatic. Blood tests confirmed Rickettsia and... crap, I can't remember right now the other one. These together virtually never occur without Lyme bacteria present.
    Last edited by OneKind; 9th December 2015 at 15:08.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    More fringe "conspiracy" finds... I use the quotes because I am agnostic about whether a conspiracy exists, though I highly suspect it. This is from the U.S. Patent Office...


    "PATENT CLAIMS
    1. A method for monitoring and controlling a fermentation process, in which the biological activity and/or the bio-mass of micro-organisms in the process are monitored, characterised in that the microorganisms and/or bio-molecules produced in the process are monitored by means of acoustic spectroscopy.
    2. A method according to claim 1 , characterised in that the microorganisms are dispersed in a liquid conveyed through a tube (2), and that the acoustic waves applied to the micro-organisms propagate along the tube axis.
    3. A method according to claim 2, characterised in that, at a first end thereof the tube (2) is connected to a fermentation vessel (1) in which the fermentation process takes place and that the icro- organisms are delivered to the tube (2) via an outlet (3) from the fermentation vessel (1).
    4. A method according to claim 3, characterised in that, at its other end, the tube (2) is connected to an inlet (4) to the fermentation vessel (1), thereby defining a loop via which the micro-organisms that are subjected to the acoustic spectroscopy are circulated from and to the fermentation vessel (1).
    5. A method according to any one of claims 1-4, characterised in that the micro-organisms subjected to acoustic spectroscopy are simultaneously subjected to ultrasonic waves for the purpose of sensing different responses of the micro-organisms to a perturbation on the micro-organisms caused by the acoustic waves.
    6. A method according to claim 5, characterised in that the ultrasonic waves are transmitted so as to propagate in a direction cross-wise, preferably perpendicularly to the propagation direction of the acoustic waves.
    7. A method according to any one of claims 1-6, characterised in that the monitoring of the biological activity and/or the bio-mass comprises monitoring the content and/or viability of the microorganisms and/or the content or quality of bio-molecules produced by the micro-organisms in the process.
    8. A method according to any one of claims 1-7, characterised in that values of fermentation process control parameters are determined based on the result of the monitoring of the biological activity and/or the bio-mass of the micro-organisms.
    9. A device for monitoring and controlling a fermentation process by monitoring the content and viability of micro-organisms in the process, characterised in that it comprises a means (5,6) for subjecting the micro-organisms and/or bio-molecules produced in the process to acoustic spectroscopy.
    10. A device according to claim 9, characterised in that it comprises a tube (2) for transport of the micro-organisms, and a transmitter (5) for directing acoustic waves through the micro-organisms in the length direction of the tube (2).
    11. A device according to claim 10, characterised in that it comprises a plurality of acoustic pressure sensors (6) arranged along or around the tube (2) for the purpose of measuring the acoustic wave generated in the micro-organisms by the transmitter (5).
    12. A device according to claim 10 or 1 1, characterised in that it comprises an ultrasonic transducer (9) for directing ultrasonic waves over a cross section of the tube (2) where the micro-particles are subjected to the acoustic waves.
    ..."

    (Accessed dec. 9, 2015 - http://www.google.com/patents/WO2002071050A1?cl=en)

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    There was a german doctor from the SS in our Science departments in upper Maine who was experimenting with Lyme disease of ticks to sicken the population back in the late 70's early 80's. I'm sure if you google or wiiki it, it will pop up. It was during the Manhattan Project days.

    all I have to say about that is, we are in the cities where there are few ticks, and rural outdoorsman types, may have been the targets for that little project.
    Last edited by Lifebringer; 9th December 2015 at 15:34.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Hi and welcome OneKind,
    I don't know if you have seen anything by Harald Kauts Vella, he has been researching morgellons for a few years here is his website. http://www.timeloopsolution.com/english/index_e.html
    He does link Lyme Disease with morgellons but also has compelling evidence as to its provenance.
    Here is a video in which he details much of his research. (there are a few other interviews out there)
    It is rather long but the subject is many facetted as I think you must know
    "Everything that irritates us about others can lead us to an understanding of ourselves" C. G. Jung

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Tottaly check out all videos by Harald (mentioned above). This is his website: http://www.timeloopsolution.com/english/index_e.html
    He sales some of the products on this website: http://www.biopure.eu/us/others-new/kautz-vella/
    I have tried his black goo remedy and in long term i have to admit that it worked. It was worth the money.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Hello and welcome OneKind,

    thank you for the opportunity to ask you direct questions on this often confusing subject. I am of the firm belief that Morgellans is a bona-fida condition that has devastating physical, mental and psychological effects on the host. Notice I use the word 'host'.

    Like Gardener has asked above, can you offer your perspective on what Harald-Kautz has to say regarding this subject?


    Kindest regards.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Bravo Onekind. Wellcome to Avalon.
    COuld you give us your own definition of Morgellons? Thank you.
    Much love
    honoring White Feather: SHIFT HAPPENED

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    I should have added that my friend was sent to Mayo clinic in Rochester, MN were they also failed to make a diagnosis. That clinic is regarded as one of the best in mi - western U.S. I hope they're using the latest testing now.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Hi OneKind, a warm welcome to Avalon Forum, I wish you a Great Spiritual and Scientific Journey here.

    And thanks to share this great story of yours.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Hello OneKind, thankyou for sharing.

    It must be extremely painful not having the support from others and even believing you are making this up. I'm lucky to have my father but many close to me don't really understand although I have some close friends who do.

    Even before you mentioned Lyme i was thinking Morgellons might be related.

    I attracted Lyme 4 years ago and was diagnosed 7 months later. Way to long for being treated with one cure of antibiotics. I have been extremely ill and bedridden for days at times suffering from 40 different symptoms. I have described this on Avalon already and there are old threads about Lyme. Don't need to go through the whole story just now.

    I also had coinfections, don't actually remember which now and in September I had another tick bite and got Babesia, but this time i knew what to do since as I didn't get proper help in the traditional health-care the first time, i looked up alternative treatments and today I'm much much better although not symptom free.

    I recognize most of what you have posted here reading all I could find on the Internet and bought "Insights into Lyme Disease Treatment" by Connie Strasheim where 13 Lyme-literate health care practitioners share their healing strategies including both antibiotics, herbs and homeopathy.

    I have used the F-scan frequency-machine, been on extreme diets, detoxofication cures and have bought an infra-red sauna for detoxification.

    Now what seems to have had the most effect is homeopathy and herbs. I have 2 therapists here in Sweden a country where chronic Lyme is not acknowledged. The homeopath is on the westcoast and a friend of MD and PhD Dietrich Klinghardt an expert on Lyme and coinfections and the herbalist is in Stockholm. He diagnoses with a dowsing-rod, believe it or not and then treats with herbs. Something must be working here otherwise I would not be where I am today even if not symptom free yet; I have some gastro-intestinal problems, spit phlegm from sinuses and bronchi and have bouts of extreme fatigue but that's nothing compared to what i experienced during the first years.

    Untreated Lyme and coinfections can bring about diseases as fibromyalgia and MS since the bacteria thrive on the protective myelin. They also feed on the connective tissue and can lead to muscle deterioration and also set off autoimmunity.

    I also found out on Internet that Joni Mitchell suffers from Morgellons. I hope you can find a working treatment in the US, there are many alternative practitioners although i don't know if in your area.
    .
    Last edited by transiten; 9th December 2015 at 20:51.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Life bringer: Are you not talking about a germ warfare specialist named Burgdorf? What's interesting is that he worked at a location called Plum Island. That was a secret animal research lab quite close to the Connecticut town where Lyme broke first. There is a LOT to feel suspicious about regarding Plum Island. Specifically, they were studying enzootic diseases.

    Folks interested in this might want to look at Bovine Digital Dermatitus.
    Last edited by OneKind; 10th December 2015 at 01:54. Reason: Add response to logjterbringer

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Gardener: I did not know about Harald Vella's work! There is a lot he discusses that I need to research before I can give a proper response. In the meantime, I wanted to thank you for sharing it. I am interested in him now because on other issues I know about (that are somewhat hidden and not easy to figure out) he corroborates quite a bit. I am only 20 min. in.
    Last edited by OneKind; 10th December 2015 at 01:59.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Quote Posted by transiten (here)
    Hello OneKind, thankyou for sharing.

    It must be extremely painful not having the support from others and even b elieving you are making this up. I'm lucky to have my father but many close to me don't really understand although I have some close friends who do.

    Even before you mentioned Lyme i was thinking Morgellons might be related.

    I attracted Lyme 4 years ago and was diagnosed 7 months later. Way to long for being treated with one cure of antibiotics. I have been extremely ill and bedridden for days at times suffering from 40 different symptoms. I have described this on Avalon already and there are old threads about Lyme. Don't need to go through the whole story just now.
    Thank you for sharing and I'm sorry for your illness as well.

    SWIM wrote a post I agree with except I ascribe potentially nefarious intentions by members of the medical establishment..........

    Morgellons fibers come in bizarre forms and bright colors which led virtually everyone to believe they were foreign to the body and probably had an environmental origin. Delusional parasitosis was the diagnosis. Patients reported the majority of doctors dismissing the condition as imagined without examining the lesions or fibers and treated for psychosis.

    This hypothesis was adopted by the CDC, forcing the disease and it's sufferers further on the margins. Being told there was no medical cause, and given the CDC's position, they resorted to explanations that attempted to reconcile their experiences with the reaction from the medical establishment.

    Discussions took place online, and given the constraints, possible but unlikely theories were proposed, including super parasites, extra terrestrial organisms or implants, and secret bioweapons. The discussions centering on disease etiology entertained far fetched theories. Doctors felt validated and the public who trust in doctors assessments agreed - these folks sound delusional - it's all in the imagination after all.

    Morgellons sufferers and possibly some genuinely delusional persons brought in samples of tissue, hair, and fibers. For reasons having to do with static attraction, detailed in another part of the explanation, many likely brought in samples of environmental debris, dust, and commercially familiar fibers. This was the first visible point of divergence.

    http://www.ncbi.nlm.nih.gov/pmc/arti...reader#s2title
    http://www.mayoclinic.org/morgellons...-20044996?pg=2

    I speculate that the position by the medical community was taken in earnest, based upon what appeared to be inconsistent physical evidence. Others, not having encountered the disease, trusted the observations and recommendations of their peers and professional organizations. That was reasonable. It gradually shifted into an unreasonable stance when the profession, seemingly en masse, stopped listening to the patients.

    Those afflicted by Morgellons Disease felt their credibility attacked and felt the effect personally. They were ill, scared, and proceeding blindly in the margins. Losing the support of their doctors meant losing insurance coverage and disability assistance. To avoid the scarlet letter of a serious and erroneous mental illness diagnosis, they suffered quietly.

    The general response by MD sufferers was understandably heavily critical, but the conversation had now turned to blame, shame, and name calling. Patients verbal thrashings, fueled by fear and frustration started to resemble those of a person affected with psychosis. The collateral effects of the doctors' opinion on the social, personal, and professional lives of MD sufferers were not considered as potential sources of agitation.

    Subsequently, ambiguous symptoms would be interpreted as an extension of the accepted theory of delusion and did not prompt research or investigation. .

    E.g. 1. Sensations of subdermal movement and electricity on the skin were allegedly caused by hallucinations from illicit drug use. Physicians did not entertain theories of an underlying pathology (which may have accounted for the self medication as well), cytoskeletal properties and (structural properties) environmental factors (static discharge) were also left unexamined.

    E.g. 2. Increased reports from disparate geographic and demographic locations were explained as "mass delusion," a non-existent psychiatric condition. Maybe the doctor couldn't recall the names of the two other similar conditions, historically used to deny women medical treatment "mass psychogenic illness" or "mass hysteria." That's probably because those conditions have not been recognized as a diagnosable illness. Critics emphasized its overuse and disproportionate use against vulnerable populations.

    Even assuming some new mass psychogenic illness was to blame, no research into legitimate questions with public health implications ensued. Why did those claiming illness, not share exposure to a common precipitant? Why are children and those in rural locations without Internet access finding out about their supposed shared delusions from the physician? Why did Morgellons disease arise so disproportionately from the dozens of other somatic conditions described and discussed online? Why were so many professionals willing to give up their careers to engage in a supposed mass delusion? What caused the disproportionate numbers of cohabiting partners who verified the observations of MD sufferers? Though all agreed that this was a unique, persistent, and debilitating type of delusion, research was not the response, stronger psychotropic drugs were.

    The eventual categorical dismissal and condescension toward the patients drove the camps apart. Any remaining hope in a discussion on medical terms was obstructed by the poor use of language. Without knowing what constituted a mass delusion, patients were implicitly denied an avenue to demonstrate their credibility. The population entertained ever grander conspiracies, fumbling for an explanation.

    E.g. 3 Correlation between some alleviation of visible symptoms and the prescribed course of psychotropic medication was assumed to be causal and interpreted as vindication of the delusional parasitosis theory. Selective reporting in journals was also interpreted as a vindication, without examination of potential bias in the reporting. Literature reviews now produced additional false confidence in the existence of delusional parasitosis, and the chances for research into infectious origin diminished.

    E.g. 4. A continued belief in MD sufferers' infection even after patients took psychotropic medications and the outward symptoms disappeared was explained as a unique feature to this delusion.

    E.g. 5. Belief by those living with someone with Morgellons Disease, typically family members and spouses, led to a surge of the dubious "double delusion," diagnosis, a phenomenon described as a "folie a deux". If an MD sufferer brought in more family or friends who corroborated the experiences, they were considered delusional too (in a "folie a trois, quatre, cinq" etc.) [I wonder if an upper bound has ever been described or if it can accommodate everyone the MD sufferer knows.]

    E.g. 6. Extreme persistence in the sufferer's belief and anger at the suggestion of a psychiatric origin for Morgellons symptoms prompted physicians to recommend and prescribe use strong antipsychotic drugs.

    Consistent with the history of the medical profession's assessment of credibility from female patients, it is possible that the higher percentage of women reporting Morgellons Disease symptoms, as opposed to men, contributed to its delayed recognition.

    The evolution of the disagreement does not support the idea that physician involvement in a high-level corporate or government conspiracy. They did, however, put MD sufferers in a Catch-22 of sorts. That is, if MD sufferers wanted treatment from doctors, they wld have to accept the conclusion that they were simply suffering a complex delusion. Accepting this would mean that their claims to an infection would be met with psychiatric drugs. Or they could persist and face ridicule, sometimes aggression, and always rejection.

    How long should a rational person argue against a claim that s/he and everyone you associated with were incapable of perceiving the truth or a pathological liar? How could one disprove it? Attempts to use objective evidence, like actual fiber samples, were interpreted as signs that the deep seated delusion existed ("matchbox sign" or "ziploc sign"). As mentioned earlier, anyone who came in and supported your observations was inherently untrustworthy and delusional - as a matter of medical science.

    Some sufferers researched on their own. Some went to alternative medicine. Others, already neurologically compromised and incapacitated, faded away. The community of the ignored congregated online, and they shared experiences to alleviate some anxiety. Everyone wanted to know what would happen to them next. All the while, the medical establishment's firm position gave the public the confidence to chastise, pity, and mock the vulnerable population about their elaborate delusion. Families fractured. Savings dwindled. Health deteriorated.

    Since then, journals reflect several clinically confirmed extractions and molecular analysis of the fibers (all containing hair and skin related material) and evidence indicating an infectious pathogen. Stanford University has a physician on the Medical Advisory Board for the Morgellons Disease research: http://www.thecehf.org/medical-advisory-board.html

    It seems that skepticism remains though - possibly due to further unexplained implausible characteristics of the disease, but possibly also because the debate caused both sides to feel and act as if they were in a personal argument. It produced a toxic climate wherein productive debate and experimentation were virtually nonexistent.

    My experience in academic and clinical science is very limited, but I believe in the effectiveness of the scientific method. Many of my interests outside of the courtroom involve investigating the world around me. I participate in the communities and have positive experiences.

    Here, in the Morgellons Disease debate, doctors and academics seem essentially to be accusing each other of fraud. When an emerging disease is discovered, I've seen methods reviewed, results validated, and kudos given. Unresolved questions became the subject of future studies. Here, the unresolved questions about other aspects of Morgellons Disease were used in an attempt to discredit papers, discredit the methods, and assault the integrity of a colleague.

    Regardless, time goes on, and time runs out. This is my olive branch - my request for all of us to put effort into trusting and working with each other. Every delay in recognition of this infectious disease turns a the story of success into a story of pain and arrogance. Let's not create a lesson on the backs of the ill. I hope that my theories and research bring about a discussion and a return to an environment of serious inquiry. I would like nothing more than to see doctors doing what they do best and MD sufferers becoming MD patients.

    &&&&&&&&&
    I wish to respond to your other points, but I am a little tired right now. Thanks again.
    Last edited by OneKind; 10th December 2015 at 02:30.

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    Default Re: Morgellons Disease: I have it, and I am here to answer questions.

    Interesting, I had to search to see what is linked to dup(1)(q4211;q4212). First birth defects which shows little phenotype change with children born short statue but little abnormalities, mostly normal but short statue still tells me something is there. Most of the genes that cause major defects are farther down the chromosome towards the terminal end.

    https://www.researchgate.net/profile...ication_detail

    So I checked cancers next, liver and prostrate cancer, leiomyomata, uterine fibroids...is listed but odds are you can find this in lots of cancer. But still tells me something. I thought there were mammary genes for development here everything but lactation but when I checked to see what protein it codes it came up wnt family. My Memory is not what it used to be I guess.

    http://www.proteinlounge.com/biosyn/...sp?pname=WNT3A

    WNT3A are codes for signal transduction, specifically it tells the inside of the cell what is outside of the cell by a channel in the cell membrane. So the inside of the cell may say need Calcium and Ca maybe outside the cell but the signal breaks down and doesn't know it's there. Cell to cell communication breaks down also. Foreign proteins may not be detected from parasites, viruses, cancer cells...Lyme spirochete ....genes that should be turned on or off may not get proper signals. I think the 1q4212 is a GC rich region containing mitochondrial DNA but not sure. New cell phone and not coming up and memory not what it used to be.

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