Julie Rehmeyer's 'Through the Shadowlands'
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Morgellon's (old but interesting study I dont think was posted here in the past)

Discussion in 'Other Health News and Research' started by taniaaust1, Jun 3, 2011.

  1. taniaaust1

    taniaaust1

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    Sth Australia
    I dont know how many others here have got or had Morgellon's with the ME/CFS (if you feel like you have things crawling on your skin or biting you.. consider Morgellon's). I had Morgellon's for a time (its now gone, thank God I worked out how to treat it!!) after I'd had ME/CFS for many years I got that dreadful thing. Morgellon's can be a coexisting disease with ME/CFS.

    Anyway I just came across a very interesting Morgellon's study in which some of the same abnormalities were found (low natural killer cells, cytokine excess etc) in which most here would know are also found in ME/CFS people.

    http://www.morgellons.com/docs/Case_Series.pdf

    (I like people to be more aware of Morgellon's as that is far less known then even ME/CFS and those with it are really suffering too and get all the same crap as we do with doctors etc.. and I think there is a possible coexisting ME/CFS link.. I believe we are more suspectable to getting it).
     
    anncavan likes this.
  2. August59

    August59 Daughters High School Graduation

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    I have a very good friend with Morgellon's Disease. They are treated just as unfairly as we are in every aspect. Very pityful!
     
  3. Hip

    Hip Senior Member

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    For anyone who has been following the fascinating unfolding story of the new and mysterious Morgellons disease, a new study just published in January 2013 has finally figured out what the strange colored fibers growing within the skin of Morgellons patients seem to be made of, and how these fibers are in fact created. I wrote a layman's summary of the findings of this new study on a Morgellons disease forum here:

    New Study Discovers What Morgellons Fibers Are Actually Made Of!

    Many aspects of the way Morgellons patients were (and are) treated by the medical profession and psychiatrists mirrored the dire problems we experience as ME/CFS patients. In spite of the fact that real physical multicolored fibers were growing under the skin of Morgellons patients, and that these fibers were plain to see, the psychiatrists concluded that these patients were deluded, and that this disease was all in the mind. Why are psychiatrists often so incapable of seeing the plain simple truth in front of their noses?!
     
  4. Esther12

    Esther12

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    I've got some unfair reasons to be sceptical of that article, or at least the claim that it really shows what Morgellons fibers are made of.

    The only thing I could find on the journal's impact factor gave it a score of zero.

    Three of the authors report working for ILADS, which has made unsupported claims about Lyme disease in the past.

    It was only 4 patients.

    None of that means it's a bad article, and I don't know enough about this stuff to judge it properly, but I think that there is reason to be cautious unless one does know the science well enough to judge it oneself.

    To me it seems likely that there are lots of different causes for the symptoms of Morgellon's, and if patients get treated unreasonably by a mainstream doctor this then leads to them turning to alternative stuff which is really no better (which does not seem to be an unusual pattern!). I was reading an interview with a neurologist who specialises in the human itch mechanism who said that they were finding patients with problems here and diagnoses of Morgellons, that had been badly treated by mainstream medicine. A complicating factor is that if people develop a problem with their itch mechanism then this can lead to them scratching and causing skin problems in a way that they are not aware of, which could then lead to a doctor deciding that they are doing it in order to appear as if they have a health problem, to gain sympathy, or whatever else it is that some seem to think makes the sick role so wonderful.
     
  5. Mark

    Mark Former CEO

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    Fits with my experience. My chronic itching began with a one-off episode which sounds a lot like descriptions of the so-called 'delusional parasitosis' that many morgellons sufferers describe at onset, and when my skin sensitivity has been at its worst, classical keratosis has been very apparent.
     
  6. taniaaust1

    taniaaust1

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    Wow.. great to see a study done on this even if it isnt in some top journal
    GcMAF has been encouraging me to get in touch with the Aussie lymies. (apparently on testing 400 people in my state of Australia were found to have lyme). The fact I had Morgellons at one point makes me more eager to try to get in touch over how to get a lyme test done etc. (Im been trying to get hold of the person arranging the lyme stuff for past few days but her phone seems to always be engaged when I ring).

    Thanks for doing an update to this thread Hip with that study.

    On thing I did thou find is that thou this study says the Morgellons isnt transmissable..when I had it I noticed that others would go into bad itching if they sat down where I'd been sitting for a while (to the point where people used to often end up getting up and changing where they were sitting).. so whatever comes out of the skin of a Morgellons patient is an irrititant to others (even if they dont get Morgellons themselves).
     
  7. Hip

    Hip Senior Member

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    About fibroblast cells in ME/CFS:

    It is interesting that on a brain autopsy performed on a ME/CFS patient, enterovirus VP1 protein was mainly found in the fibroblast cells located in the outer wall (adventitia) of the blood vessels in the brain, but not that much enterovirus VP1 protein was seen in the brain cells themselves (just a small percentage of glial cells had some enterovirus VP1 protein in them).

    This made me start thinking that it might be these infected fibroblast in the brain's blood vessels that are driving the symptoms of ME/CFS. Though by what mechanism, I don't know. It is interesting however that fibroblasts play a fundamental role controlling chronic long term versus acute resolving inflammation states.
     
  8. Hip

    Hip Senior Member

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    Did you actually have the multicolored fibers appearing within (and poking out of) your skin, Tania?


    That is very interesting, and I have heard this before.
     
  9. taniaaust1

    taniaaust1

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    I dont know if I had those or not as I never looked at my skin with a magnifying glass like many of them do to see those. (I knew nothing about Morgellons at the time so that idea never occurred to me).

    I did thou have another visual presentation which happens in some Morgellons cases (but hearing of this is rarer then hearing of the threads).. I had little like rice grain things coming out of my skin (pores) hard things (same colour as rice grains).. which were highly uncomfortable as they came out.. (they come out of my fingers and moving my fingers hastened this hard substance coming out). I had a heap of those come out (like my fingers rained this stuff.. it was falling into my keyboard as I was typing when this release thing occurred) and then recovered from the Morgellons (that happening seems to be connected to my Morgellons going less itchy got quickly better from there and I was completely free of it very soon after).

    After I had that happen.. I came across two Morgellons cases in which had the same thing as me come out of them. I guess many who have this presentation wouldnt even be connected their issue to Morgellons (unless I had the fibres too but I dont know as I didnt know to get magnifying glass and look).

    Ive aways thought this is related to some parasite or something like that as in my case things like lavender oil and white sage smudging.. parasite treatment things.. helped a bit. Also salt baths with heaps of salt helped and would get the things out of my skin (I could feel them like coming out). I used to lay in a salt bath for 4 hrs per day for some relief.
    ...........

    I just got hold of the lyme person and she's given me a name of a doctor I can go to to arrange lyme testing.
     
  10. Hip

    Hip Senior Member

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    I have certainly heard of the black specs that come out of the skin of Morgellons patients.

    This database of Morgellons images is a pretty good reference. It is on the Morgellons UK website, run by Jo Simmon's, one of the best Morgellons websites.

    Here is the page on Morgellons specks/particles. There is one thing at the bottom of the page that looks like a tiny grain of white rice. But it is under a microscope at x800 magnification, so the length of that grain is very small, perhaps ½ mm.
     
  11. taniaaust1

    taniaaust1

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    Thanks.. a couple of the photos werent under any magnification. These very small rice like grains..could be seen with the eyes (I cant remember now but I may of also looked at under a magnifying glass those once they come out..but I never thought to look at my skin with a magnifying glass but rather jarred the things and then was studyng them).

    The black spects you mentioned in your post, I personally think are the second most common manifestation which people talk about (after the threads which are seen via magnification). I thou never saw black spects.

    I just found an interesting post online of someone who had lyme on all this
    http://www.morgellons-disease-resea...-syndrome/7541-white-seed-like-particles.html (the things I had which could be seen thou were not tear shaped).


    the info at http://www.morgellonsuk.org.uk/micromyiasis.htm Good morgellons info but it just creeped me out. It talks about how various flies can infect a host (myaisis they call it) and be mistaken for Morgellons.

    It mentioned how some of those things are nocturnal (whatever it was which infected me.. felt like it went on a feeding freezy at night as it went active). Whatever i had thou it was all over some..it certainly had prefered areas too.. eg my scalp.

    That has me wondering if larva causing calcification .. if that calcification could then end up releasing coming out like hard small rice granules? I guess i will forever keep wondering what was going on with my body at that time (I never went to a doctor over it as they'd already been bad with my ME/CFS stuff and I'd given up on them at that time for my symptoms as I'd been clearly told that they couldnt treat ME/CFS symptoms).


    I did have HEAPS of joint pain back then. I rarely get it now. I also used to get swelling of my finger joints. (which I havent had for ages now).

    Anyway.. I look forward to hearing about future Morgellons research.
     

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