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VIRUSES??? Bacteria??? Fungus??? Oh MYYY!!! Protomyxoia anyone?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Jacque, Aug 29, 2012.

  1. Jacque

    Jacque Senior Member

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    I truly love this site... Soooo many WONDERFUL and SMART people here... I am currently on Rituxan and Dr. Kogelnik is my doctor (lucky me).

    Many of you are very intelligent and analytical so wanted to bounce this off of you...

    As I sit here pondering why I had 5 days of GREAT energy and now slammed back on couch...my mind is filled with all kinds of questions...

    My eyeballs literally start going in circles like that snake on Jungle Book when I try to unravel WHAT the FRIGGGG is makin me so damn sick.

    I have been diag with so many things...When people ask me what is wrong I want to blow a fuse... I tell them something I can't hardly say and definately can't spell!! ME!!

    I traveled to see Dr. Fry in Az...and was tested for Protomyxoia Rheumatica - a NASTY parasite that Dr. Fry maintains causes everything from RA, MS, to CFS!! Surprise...surprise when my test came back positive... Treatment is to have a VERY ULTRA LOW FAT diet... which is dang hard to stick to... NO OLIVE OIL...nuts...etc... I have had a very hard time sticking to it... www.frylabs.com

    How is a sickly person who lives on the couch ... unable to put together a sentence at times...supposed to figure all of this out... Dr. Shoemaker in MD...said I had MOLD ILLNESS, another Doc..LYME DISEASE/LUPUS... Fibromyalgia...CFS.... Hashimotos.....Protomyxoia.... and now ME .... Just shoot me already!

    Have recently completed 2nd infusion of Rituxan...have 4 more to go... Last week I had 5 days in a row where I LEFT the house, went out to dinner 2 nites, did things I normally could not do...and today WHAM..SLAM...back on couch with all the same ol... Burning bones, nerves, muscles.

    Took a walk with my daughter and you'd think I had been in the damn olympics or something...SO STIFF...sore...burning... So another another day back on the couch...

    I know this is "normal"...but I lay here wondering were those 5 days bc my immune system is missing half its soldiers so unable to throw off inflammation...and now they are comin back... or was it because viral load decreased and now it is comin back... I do plan to ask Dr. K...

    Meanwhile just wanted to know if any of you had heard or been tested for this fun little beast???

    So confusing in this jumbled up mess... WHAT CAME first??? The tick bite and Lyme Bactera, then viruses...then parasite? I need to bust out a crystal ball right now... Anyone have one???

    Thanks for listening... Humbug...

    Jacque
     
    ggingues likes this.
  2. ukxmrv

    ukxmrv Senior Member

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    It's one of the reasons I just stopped testing for things as most of them come up as positive. It's either a coincidence and they are there but not the cause, or something else is making us sick and we collect these infections, or it's a combo of all these things or, the tests aren't reliable.

    There was another thread from a Fry patient this year. Maybe if you do a search it'll come up or someone will be able to post it here for you.?
     
  3. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Little Bluestem likes this.
  4. sianrecovery

    sianrecovery Senior Member

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    Hi Jacque (and everyone else)

    yes, exactly...what the hell do you focus on first? I was diagnosed with proto by Dr Fry. I havent been tested for Lyme, but wouldnt be surprised if I did it was postive. I havent gone down the entero virus route either. At the start of this year, I said to myself I would look environment (molds etc), endocrine/hormones, infective bacterial agents and then I would stop for a bit as I would have run out of cash. All lines of inquiry have been helpful. I did Shoemaker's HLA DR test and had the dreaded genotype, so investigated my environment and fount it was toxic. Changing that has helped. My sex hormones, cortisol and DHEA were low. My thyroid low normal. Cytomel and DHEA have helped. I always improve on certain abx, so with Dr Fry, did six months of doxy. It helped. So I'm better than I was. I havent stuck to any diet - weak minded of me I know, but two docs I respected were telling me diametrically opposed things, so I plumped for balanced, rather than low fat or paleo. I have meduallary sponge kidney and osteoporosis, so my next thing to look at is the parathyroid. I havent yet got round to trying to eliminate my intestinal parasite or deal with the HPU; and ultimately I dont know what is cause and effect in my health - it seems overdetermined.
    Perhaps we can just pick away at one thing at time, and accept that maybe ultimate answers are not available at present?
    You sound like you are doing a demanding course of treatment - maybe just do that, and let the rest take care of itself for a bit?
     
  5. Jacque

    Jacque Senior Member

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    Yah I agree... I am DONE with the testing... Was reading about the xmrv and came to that EXACT conclusion... Well prob have that too...cuz my body is just a big ol soup for all these things... But what I think is crazy making is each doc thinks they have the one and only answer... When you talk to Dr. Fry he is CONVINCED that this parasite is at the core of all these issues... even Alzheimers...

    wow...sounds like we have been traveling on the same paths and spending many thousands only to end up here in this chat ...confused....befudddled... broke...and still stick....

    If you do feel better on Abx...chances are you prob do have Lyme ... There is a great written test at www.canlyme.com under "symptoms"... and the Lyme test is the hardest of all to get a positive on... But I really think it is the BEAST at the core of all of this that is crippling our immune systems... Lyme AIDS... is what they call it..

    I too was the dreaded genotype...I moved... spent thousands... got sicker.... and found him to be the jerkiest of doctors I have EVER seen....I could not tolerate the Cholestyramine...could you???
     
    sianrecovery likes this.
  6. Jacque

    Jacque Senior Member

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    Thank YOU... Sherlock!
     
  7. alwayshopeful

    alwayshopeful

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    I am the opposite of you guys. Every test I have is perfectly fine and yet I feel deathly I'll. I wish one of my tests would show something so I could know what direction to go to at least try a treatment of some kind. Am I the only one on here that never has anything show up on tests?!
     
  8. Aileen

    Aileen Senior Member

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    You are not alone. I went through years of tests with nothing significant showing up and having doctors proclaiming I was as "healthy as a horse" even though I felt like death warmed over and couldn't function. Ironically enough, at one point I was receiving treatment from an accupuncturist who was a retired vet who had specialized in horses. When I told him that he told me I was a very sick horse! :lol:
     
    sianrecovery likes this.
  9. Aileen

    Aileen Senior Member

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    When it comes to pathogen testing my philosophy is the following: Get the best, most accurate tests possible for microbes that everyone agrees exist but avoid the tests for "new" bugs that only one researcher/lab has discovered or tests for until there is confirmation from elsewhere.

    The XMRV mess is the latest case where almost everyone who took the test came up positive for it and then felt they had to do something to combat this critter. Then, it turns out to be contamination (or some other problem). It seems if it is one person or group's baby so to speak, then all and sundry seem to test positive ... Rather questionable to say the least. Which is why I wait. If the bug does exist and the test is a valid one, others will be able to duplicate the results. I am keeping an eye on Fry's parasite with great interest and I think some other new bug was mentioned on PR this past week. We need other researchers to get involved and verify the findings though.
     
  10. Jacque

    Jacque Senior Member

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    Well I guess I have been fortunate ... in that fact that each doc I go to does say I am sick... I have NEVER heard you are as healthy as a horse... EVER... but have been given so many "disease" lables that my head is spinning....:ill:
     
  11. Jacque

    Jacque Senior Member

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    Yes I agree... Dr. K was not at all interested in testing for XMRV... more concerned with resetting my messed up immune system... We are so anxious to have validation that we are sick and they know it.. So infuriating...when they EGO's...and $$$$.... is on the forefront!!! Everyone has "their baby" as you say... In re to Dr. K... he does not seem to be that way..he is joining minds with the most advanced of physicians in this arena... Sort of a think tank... Not so much HIS discovery - but moreso a collective forum... and I LIKE that!!
     
  12. Dan_USAAZ

    Dan_USAAZ

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    This correction is probably not pertinent to the thread, but I thought it might be worthwhile to share it.

    - As of April, 2010, VIP Dx had tested 630 specimens for XMRV. Of these, 37% were deemed positive for XMRV.
    - VIP Dx tested 30 patients in the UK for XMRV and 33 % were identified as positive.

    VIP Dx continued to offer the XMRV test commercially for about another 15 months since April, 2010. I could not find the published positivity rate for the patients that took the XMRV test since April of 2010, but I remember it continued at about 1/3.

    I agree with the other comments suggesting that no testing or treatment related to XMRV should be pursued at this time.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Sian,
    with osteoporosis diagnosis, have had vit d tested etc??
    I dont think one can go too wrong treating the infections they find and trying to treat abnormal hormones, every piece is apart of a jigsaw puzzle.
     
  14. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    I don't have health coverage so I've never had any test. I've been trying to proceed logically, seeing what symptoms match and what line of thought has the ring of truth for me individually, and then trying treatments based on that. In my case, all my currrent symptoms seem to come not from any reactivated microbe but from over reactivity in my immune system - all centering on histamine and mast cells. (They were originally named Master cells because they influence so much.)
     
  15. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    With osteopororis mentioned, I'll bring up the histamine angle:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671373/
    "Histamine Promotes Osteoclastogenesis through the Differential Expression of Histamine Receptors on Osteoclasts and Osteoblasts" 2009

    The osteoclasts (derived from monocytes/macrophages) that break down bone respond to histamine, apparently increasing number and activity - but I've only briefly scanned that (free full text) article.
     
    sianrecovery likes this.
  16. sianrecovery

    sianrecovery Senior Member

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    Great stuff on this thread, thanks. Yes, totally understand people's reservations on proto, me too, am keeping an open mind. Re mold - it has helped me to detox my environment, but never took welchol, or saw Shoemaker - I hear very mixed things about him. I get sick of the messiah stuff - so many docs seem to think its their way or the highway. One of the reasons I respect Dr Myhill is that she is open to other people's methods.
    Vit D was low, is now normal.
    Love the stalking the wily histamine sub title sherlock - is that an homage to the stalking the wild pendulum book?
     
  17. Jacque

    Jacque Senior Member

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    Good thing you never saw Shoemaker... He thinks he IS the MESSIAH.... so arrogant!!
     
  18. Mog

    Mog

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    I guess it depends what tests you've had done and where. For 20 years I've been told that all the tests done by the NHS were "fine" and "normal", and I was like you, thinking that how come I am feeling so bad if nothing is showing up in my tests? You know that the doctor is looking at these test results and is thinking there's nothing wrong with you and you're just a hypochondriac. However, having had other tests done privately, I now know that there is plenty wrong, more than enough, and am facing the confusion of where best to start on it all.
     
  19. alwayshopeful

    alwayshopeful

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    What other tests did you have done? I have a holistic doc who is open for pretty much anything we can come up with. So I have had quite a bit of tests, but always looking for more ideas.
     
  20. Jacque

    Jacque Senior Member

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    Yes and it also depends on if you are just going to an ordinary GP... Is he/she just running Basic Immune, Thyroid, etc or ordering up some of the more sensitive of tests... I don't know how long you have been sick but if it is fairly recent I would rule out Lyme to begin with... If you catch it early enough you won't end up with a completely dysfunctional immune system like I have... I so wish I would have known about Lyme a LOT earlier... Now it is so heavily entrenched in my body and I have so many of the CO infections...that it is a real MESS..
    Have you had all of the viral testing done for HHV6, HSV1 and 2, EBV, Cytomegolo?? From my experience if you are not seeing a doc in the "know" you need to go in armed with knowledge and say these are the tests I would like... I have practically BEGGED for every test I have ever gotten (out of the ordinary) and they have come back POSITIVE... Before I started seeing Dr. K...it was like speaking a foreign language to the doctors and being treated like a hypochondriac with a prescription pain killer problem!!! VERY FRUSTRATING..... Stay stong and proactive...
     

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