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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. MargeM

    United Mitochondrial Disease Foundation

    Not sure if this link was ever posted here, but it's a nice explanation of mitochondrial disease http://icyou.com/topics/diseases-conditions/understanding-mitochondrial-diseases. I've been a member of the UMDF for several years and know that most adult patients who eventually are diagnosed...
  2. MargeM

    Mitochondrial doc and enzyme co Q 10

    Andreamarie, I hope you learn something interesting from the labs that were run. If they are discussing doing a muscle biopsy (to determine if you have a mitochondrial disease?) I would suggest you do some research on that. From what I understand, lately most mito docs are leaning toward more...
  3. MargeM

    XMRV + by culture and negative by serology

    I agree with Sushi. Another poll is needed. It should probably state that this is the VIP test (as other antibody tests are likely to come out soon). I'm a positive culture, negative serology also. I've never set up a poll and am nervous about messing it up. Where are all the poll pros?
  4. MargeM

    Strongyloides / positive test! Ivermectin??????

    FernRhizome, I haven't heard of this and have no experience with the drug, but I just wanted to say I'm sorry for the diagnosis. I read up on it a little and sounds like it could be quite challenging. I wondered if you have had bad past experience with cortisol or steroid drugs due to this...
  5. MargeM

    Significance of MTHFR Dysfunction

    Nickcnate, So folinic acid wouldn't work for you also? From wikipedia - Folinic acid is a 5-formyl derivative of tetrahydrofolic acid. It is readily converted to other reduced folic acid derivatives (e.g., tetrahydrofolate), and, thus, has vitamin activity that is equivalent to that...
  6. MargeM

    Significance of MTHFR Dysfunction

    I believe my first reaction to hearing the news was a very large grin. (the relief of finally knowing what "it" was, after 14 years of tests without solid answers)
  7. MargeM

    Significance of MTHFR Dysfunction

    Interesting. I recall that I had a few DNA tests taken about five years ago, and MTHFR was included in the test. The results were negative. I just learned last week that my pcr/culture from VIP was positive.
  8. MargeM

    Amy Dockser Marcus post on CFSAC/XMRV, 15 Oct

    LOL Sasha. The good news is that most of us will have forgotten you mentioned this in a few days. Or at least I will.
  9. MargeM

    VIPDx Serology (Antibody) Test Results Yet?

    It's certainly been an emotional rollercoaster ride for us, hasn't it? I'm thinking hmmmm.... and at the same time trying NOT to overthink this. Wish I was a fly on the wall over there at VIP. Thanks Lynn for letting us know they're still just swamped. That helps!
  10. MargeM

    VIPDx Serology (Antibody) Test Results Yet?

    I agree Stone. I haven't bothered the lab to check on my results, but I haven't heard anything and it's been six weeks. When you're anxious for answers, it seems longer.
  11. MargeM

    emergency report from China

    I used the translate button my google toolbar. If you don't have that, you could always google "google translate" and find where to get it.
  12. MargeM

    CNN Heroes: Nominate Annette Whittemore

    Also submitted. Didn't take too much energy. I hope more people manage to do this before the deadline tomorrow.
  13. MargeM

    Should I Get The $250 VIP Serology Test or Wait For The Standardized Test

    Floydguy, that's exactly how I feel. If the majority of CFS patients are positive and I'm not - I need to know that and become more aggressive in looking at other possible causes.
  14. MargeM

    Mitochondrial Clinic

    Nina, I have a prescription for carnitor (levocarnitine). I've had several EMGs and they were all normal. I know a lot of people who had no luck finding abnormal mitochondria with a biopsy but were given a clinical diagnosis. You probably hear the stories also, of people getting multiple...
  15. MargeM

    Mitochondrial Clinic

    Glen, they did suggest I take CoQ10, B complex vitamins and a prescription form of L-carnitine. I improved significantly, but still have many symptoms. It's been a while since I've been a patient at the clinic - I felt like there was no need to continue with follow up visits unless I developed...
  16. MargeM

    Decreased oxygen saturation upon exertion

    Powertool, I have had the same thing happen to me. (sats dropping while walking the hall at my doctor's office). I failed a cardiopulmonary exercise test -- that indicated I have a problem with oxygen transportation/delivery. During the test they also drew my blood and found I was low on...
  17. MargeM

    CFS,mitochondrial diease, autism

    Mitochondrial disease You can have a genetic mitochondrial disease and not develop symptoms until later in life, so there really is no distinction there. As you age, the number of mitochondria decline - it's thought to be part of the aging process. Some people seem to hit a threshold at one...
  18. MargeM

    CFS,mitochondrial diease, autism

    Hi Julia. If you don't mind me asking, what tests were done to rule out you and your son from having a mitochondrial disease? I'm just a little surprised to hear it could be ruled out so easily. It's my understanding that negative biopsies don't rule out the disease and sometimes labs are...
  19. MargeM

    CFS,mitochondrial diease, autism

    I've read that most mitochondrial diseases are caused by defective nuclear genes, and can be inherited from either parent or a defective gene from both.
  20. MargeM

    Dr. Mikovits of the WPI to Host Live Q&A Session Regarding XMRV 22nd Jan

    Good question Tina. I'm curious to know if they think this virus hides out in biofilms. Does anyone know if that's been mentioned by WPI? Could offer an explanation of why the virus isn't caught in every sample. Live from the Lab Viral Biofilms - Discovery of a New Propagation Mechanism for...
  21. MargeM

    CoQ10 deficiency related to multiple ME/CFS symptoms and early mortality

    coQ10 Although I've read that is what Cheney believes, I don't remember reading the logic behind it. :confused: I do know that a friend of my mother's was on a waiting list for a heart transplant (for heart failure) but in the meantime he started taking CoQ10. His heart improved and they...
  22. MargeM

    CoQ10 deficiency related to multiple ME/CFS symptoms and early mortality

    http://www.epic4health.com/howtogetlabt.html I've never tried this particular lab. I usually have my CoQ10 tests taken at the UCSD lab.
  23. MargeM

    New Study Shows Dangers of Stem Cell Treatment

    Also apologize if this is posted elsewhere on the site (site is getting so big I sometimes get lost here). But here's more on stem cell cure for HIV: http://www.sciencedaily.com/releases/2009/12/091208132732.htm
  24. MargeM

    Mitochondrial Clinic

    Koan, Unfortunately the tests were inconclusive (there was no evidence of the mitochondrial disease or abnormal cells in the muslce biopsy). So I left there with a diagnosis of myopathy of unknown etiology. I'm actually a FMS patient first but when my symptoms progressed (after using...
  25. MargeM

    Mitochondrial Clinic

    Glenp, I've been to The Mitochondrial and Metabolic Disease Center in San Diego. Were you looking for some specific information about the testing done at these clinics? I was evaluated there for a suspected mitochondrial disease. Lots of labwork, cardiopulmonary exercise test and a muscle...
  26. MargeM

    The only disease with PEM?

    I don't think post exertional malaise or the global exacerbation of symptoms is unique to CFS. People diagnosed with genetic mitochondrial disease experience this also. Actually, the reaction to exercise appears to be quite the same for both conditions.
  27. MargeM

    Top scientists to meet at Cleveland Clinic on trial of XMRV

    I just noticed this blog regarding the conference. http://cfidsresearch.blogspot.com/search/label/Reasonable%20Certainty
  28. MargeM

    MAES M.:July, 2009. Co-enzyme Q10 deficiency in myalgic encephalomyelitis

    dose of CoQ10 I have a coQ10 deficiency in my muscle tissue. My blood tests are always ok (on the high side) because I take CoQ10 supplements. I take Tishcon brand Chew Qs (NFI) 600mg tablets. At one point I was taking 1200mg a day, as prescribed by my physician. I can't recall my test...