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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. M

    White blood cells

    This question would be strange anywhere other than a CFS/ME forum, but I'm concerned that after having had high WBC counts for years, my last one was normal. The high WBC counts seemed appropriate as an indication that my immune system was trying to fight the underlying infections linked to...
  2. M

    Supplements do not have any real effect on symptoms

    Replying to the very first post in this thread: One reason supplements may be helpful to some people with ME but not to others is the existence of allergic reactions to some of the contents in the pills (no idea whether it's the active factor or other contents that I am reacting to). I have...
  3. M

    Cause of Death among Patients with Chronic Fatigue Syndrome

    Thank you, Nancih, I just noticed a weird lesion on my skin a few days ago and the thought of skin cancer never occurred to me (in part bec. it's on my lower abdomen and hasn't been exposed to sunlight in 20 years). Your post just convinced me to take it seriously enough to go see a doctor...
  4. M

    Life Expectancy and CFS/ME

    A belated reply to some of the earlier posters who did not see the point of this thread: It is not just reduced NK cell activity that leads to earlier deaths among people with CFS/ME. That wouldn't account for the fact that those of us who die from heart disease do so an average of about 20...
  5. M

    Has anyone who has taken Valcyte developed cancer?

    @Kati, like most people with CFS/ME I get lousy care from my doctors. My oncologist now is very good, but there's really not much that can be done for this type of leukemia. My CFS specialist completely missed the fact that my platelet counts were increasingly above normal for a year - in fact...
  6. M

    Has anyone who has taken Valcyte developed cancer?

    Thanks, Gingergrrl. Darnit, I'm usually pretty careful about writing down what I'm taking and keeping it, but for some reason I didn't write down the dosage for the Valcyte. It was not a particularly low dose; it was whatever the standard Montoya protocol was at the time.
  7. M

    Has anyone who has taken Valcyte developed cancer?

    IreneF, not all cancers can be cured. My rare form of leukemia, which involves formation of scar tissue in the bone marrow, is one that cannot, and I expect it to be terminal within a few years. I took Valcyte for almost 6 months and it made me feel awful the whole time, plus my EBV and HHV-6...
  8. M

    Never Ask Us if We're Hungry -- The Answer's Always No

    Not only am I rarely hungry, I am never THIRSTY, and my dehydration can get pretty bad before I realize why I'm feeling so terrible. For the times when I realize I've gone too long without food and don't have enough energy to go to the kitchen or prepare any food, I keep organic peanut butter...
  9. M

    Chronic Kidney Disease and ME/CFS

    Thanks for all this information. I just learned that I've had Chronic Kidney Disease for over a year. IMPORTANT NOTE: do NOT rely on your doctor to notice this, especially if you have more than one doctor. An isolated result under 60 doesn't mean anything by itself, but you and your doctor...
  10. M

    Has anyone who has taken Valcyte developed cancer?

    abstractblue, I hope your bone pain was due to something less dire than cancer, but in response to your original question, I took Valcyte for 6 months and later developed cancer. Four years later my longstanding problem with precancerous cells in my cervix worsened to the point where I needed a...
  11. M

    Ozone Therapy

    Thanks, will try soon.
  12. M

    Ozone Therapy

    Hip, re your easy ozone technique: can you tell me how bad the die-off effects are? I am so weak and sick now (I have leukemia on top of my ME) that I cannot tolerate a full-fledged die-off or Herx reaction.
  13. M

    Cause of Death among Patients with Chronic Fatigue Syndrome

    Hi Muffin - I know you posted a while ago, but in case you haven't come across it yet, there was a study done in 2012 on just this issue. You can find the abstract at http://www.ncbi.nlm.nih.gov/pubmed/22648858. The rate of CFS among cancer patients and controls was the same - BUT "CFS was...
  14. M

    Cancer On Top Of CFS! :(

    Hi awdbawl - first, good luck. Second, re bruising: for me, excessive bruising is always a sign of worse anemia than usual. The brain often doesn't register mere brushes with solid objects, that's why you don't remember walking into things, but if you have severe anemia, the body does register...
  15. M

    In Brief: Muscles and the 'myalgia' in ME/CFS

    Back to the original article: you state that Dr. Newton's research "suggests a potential pathological problem during the process of muscle contraction, namely a problem during the process of aerobic respiration causing anaerobic respiration to take place at much higher incidence than healthy...
  16. M

    weight Gain

    Nielk, I don't see anyone who answered your question about getting your human growth hormone levels tested, so I'll reply. Yes, it can definitely be done if you go to a good endocrinologist who knows that to get a meaningful result, blood has to be drawn periodically for a few hours while you...
  17. M

    Can we skip all this and go straight to intrathecal injection? Rich, Freddd?

    Rockt, in response to your post "I have had several concussions and since a lot of my CFS troubles started afterwards, I always think there might be neurological damage. The funny thing is though, I had neuro-psych testing done a few years after the last concussion and it showed that my...
  18. M

    Prescription Drugs Use in ME/CFS.

    My new favorite drug-drug interaction website, because you can type in everything you're taking, including non-prescription medications, all at once, and it will check all the possibilities: http://reference.medscape.com/drug-interactionchecker
  19. M

    Prescription Drugs Use in ME/CFS.

    Well, SOME pharmacists are very knowledgeable. Mine is not, possibly because he's old. Some pharmacists use drug-drug interaction software. Mine doesn't. No surprise: some of their records are still kept by pen on paper. Nevertheless, he is very convenient and very cooperative and that's...
  20. M

    Prescription Drugs Use in ME/CFS.

    oh, nefazodone is for depression, not CFS/ME. I've avoided statins for years, but my cardiovascular condition is now so bad that the benefits (e.g. continuing to live) outweigh the risks.
  21. M

    Prescription Drugs Use in ME/CFS.

    I agree, and I don't trust most specialists either. My neuropharmacologist is the only one who checks carefully. I raised the question because my cardiologist, after seeing me the first time, prescribed simvastatin. I take nefazodone, as he knew, but apparently he didn't realize nefazodone...
  22. M

    Testing for Post-Exertional Malaise

    Incidentally, when I did Keller's PEM test, it also showed that my performance on the first day of the test was way below normal, that is, my energy level was significantly below normal even before exercise. I got dynamite results from this test for my disability insurance case. If you take...
  23. M

    Testing for Post-Exertional Malaise

    Unfortunately, there still is not a single definitive test, because post-exertional malaise can be caused by other things. But the number of tests that can be done to show symptoms that have a high correlation with CFS/ME is mounting, and that is making it easier to prove we're sick. Even more...
  24. M

    Testing for Post-Exertional Malaise

    Thank you - that's exactly the study I meant. Her sample was unfortunately very small, so I hope she republishes when she has more data. Also she's starting a new (related) study which I will post more about next Tuesday after she comes by my house to do the testing for it.
  25. M

    Prescription Drugs Use in ME/CFS.

    With so many strong opinions on prescription medications on this thread, it seemed like a good place to raise the question: who should be PRIMARILY responsible for checking for drug interactions - the doctor (and if so, which, the general practice doctor or a specialist), the pharmacist, or the...
  26. M

    Testing for Post-Exertional Malaise

    Dolphin, in addition to the Stevens study on post-exertional malaise you cited above, I recommend Dr. Keller's presentation, Exercise Testing to Quantify Effects of Fatigue on Functional Capacity in Patients With CFS by Keller, B.A., Micale, FG, Ithaca College, which I have lost the url for...
  27. M

    ADHD drugs reduce ME/CFS cognitive dysfunction

    My adderall (amphetamine salts) is my all-time favorite CFS medication of many that I have tried (Valcyte made me sicker, and not just because of Herxing). Cut right through the brain fog, but even though my doctor knows to my medication dosages low because of CFS, I still had to cut it down...
  28. M

    Doctor in NY who does comprehensive testing

    Oh, I understand the reason now. I should have been taking Valtrex for my EBV as well as the Valcyte for my HHV-6. Suppressing only the one allowed the other to flourish.
  29. M

    Doctor in NY who does comprehensive testing

    Please be careful about the antiviral. She put me on Valcyte several years ago, which at least sometimes is not effective if the patient has more than one underlying virus, such as EBV plus HHV-6. Yeah, it cut down my HHV-6 but sent my EBV through the roof, and I have never gotten back to the...
  30. M

    Doctor in NY who does comprehensive testing

    That's correct. I felt she did not pay adequate attention to me, including but not limited to telling me she had no time to discuss my test results with me.