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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. G

    Just went to Dr. Dantini last week....ordered bloodwork on this list of viruses.

    Don't tell Dantini if you have tested positive for XMRV. He said he could not treat someone with rat dung and was not interested in anything that was going on with me. He seemed so angry about XMRV. I have never been to such an unprofessional doctor.
  2. G

    Annette Whittemore on Nevada Newsmakers again

    Eric, the WPI are trying to help very sick people. I still think it is a retrovirus. It may not be called XMRV but it must be a retrovirus. People on retroviral medications are being helped so it must be a retrovirus. I am planning to go on viread this month. You do not sound supportive to me.
  3. G

    Doxepin - Is it a good choice for first-ever sleep aid (for deep sleep)?

    I have taken .5mg of Doxepin for several years. It helps my sleep but any higher dose and i have a hangover.
  4. G

    Ampligen Experiences

    Daffodil, is Ampligen approved and on the market in Canada.
  5. G

    Article: A Fibromyalgia Doctor Steps Out: Dr. Dantini on Treating Fibromyalgia and CFS with Antivira

    I live in the same community as Dr. Dantini. I did not go to him because I attended a lecture by him about 15 yrs ago and he said he could "cure" CFS with acyclovir. I had already taken that drug and was not cured and considered him a quack. Recently, I talked to someone who called and was told...
  6. G

    WSJ: Amid War on a Mystery Disease, Patients Clash With Scientists

    Some scientists have preconceived ideas before they do their experiments. Some are saying XMRV is a contaminant before they have proved it. They need to be held accountable. I think some do not take this illness seriously enough.
  7. G

    Caa poll

    I give all my donations now to the WPI. I regret having donated anything to CAA, little as it was. We need to fire the board members if all they do is rubber stamp whatever the leadership wants.
  8. G

    Dr Kleinman

    The phase III study he refers to sounds like the Malderelli study. Is it possibly the same?
  9. G

    Dr. Deckoff-Jones talking about setting up a clinic at the WPI

    Only WPI is doing real studies for this illness. If I am going to a clinic it will be WPI because I love the fact that the money I spend will go directly to research.
  10. G

    Have you had a remission?

    I was very sick for 7 years and went into a remission for 5 years. While in remission I still knew I had the illness because if I was on my feet for more than 2 hours I would have PEM for about 24 hours. I considered myself in remission because I could live a normal life as long as I was careful...
  11. G

    Reply from nih- collins' office

    I think it would be helpful if the NIH used patients who already know they have XMRV to study the virus instead of trying to find the right cohort to study.
  12. G

    Antiretroviral Trial

    Sue, I read that adefovir combined with tenofovir will increase tenofovir and could cause too much tenofovir in the body.
  13. G

    Anti-Virals working for XMRV?

    Meg, what dosage of valtrex are you on. I am taking one gram a day and I am in my seventh month. I have had a slight improvement. I am considering increasing my dosage but I get sick if I take 1.5 grams.
  14. G

    Antiretroviral Trial

    Daffodil, I have not started the arvs yet but I am concerned about the drugs causing cholesterol and triglyerides to increase. My cholesterol is already high. Have you had an increase?
  15. G

    Two antiretrovirals at the same time

    My doctor has prescribed Isentress and Viread to begin taking them at the same time. It seems most people on this forum begin one drug and a week later start another. My doctor believes resistance could occur in one week if only one drug is taken. She is basing it on her experiences with HIV...
  16. G

    Cheney's Latest Newsletter

    Lisa, I agree with you completely and you say it so well.
  17. G

    Cheney's Latest Newsletter

    I will not pay him for his newsletter. I find it shocking that he has the audacity to charge $49 a month. $10 or $15, maybe. I will eventually get the information later because if news is pertinent to our cause it will find its way on to the internet. As for research I will donate what I can...
  18. G

    Why Were Only Polytropic Variants Found in the NIH/FDA research?

    I remember when the Alter paper was leaked it showed him calling it XMRV. XMRV was in his slides. Did he change it to agree with the CDC. I may be mistaken about this because no one has mentioned it.
  19. G

    My Antiretroviral Trial

    It has been several days so how are you doing? Are you having any bad reactions. Are you seeing any increased energy.
  20. G

    Antiretroviral Trial

    I came down with cfs after menopause. I was taking hormones but it was less than the body produces, I think. I still take hormones but much less.
  21. G

    Obtaining the ARVs now/soon?

    I would really appreciate it if some of the people would post here and let us know how they are doing. They can remain anonymous. It would help those of us considering it.
  22. G

    Antiretroviral Trial

    I wish more people who are on antiretrovirals would report so we could know how they are doing.
  23. G

    Patient Advocate September 08th, 2010

    I cannot understand Dr. Coffin's reluctance to begin clinical trials. This would solve the issue of causality. I guess he was trying to say we cannot measure viral load yet but it is time to get us help.
  24. G

    Retrovirus Positive CFS Patients Show Enhanced Response to Ampligen(R), an Experiment

    I was very confused when I read the Hemispherix report but after reading several more times I think I understood what they were trying to say. The patients that are XMRV+ were able to increase their exercise capacity while the XMRV- were less able to exercise. They were showing the drug was more...
  25. G

    My experience with Valtrex

    I have been on Valtrex 4 months. I do not crash as often but other than that I see no difference. Maybe I'll try famvir.
  26. G

    Article: Post Exertional Malaise IV: Power to the People by Jennifer Spotila, J.D.

    I bought a scooter thinking it would enable me to shop. Guess what, I get PEM even in the scooter. I must limit my shopping to 30 minutes. It may be the mental exercise of trying to decide what to buy or just sitting up with no support to my head.
  27. G

    Question for those who are XMRV+

    I had reactivation of the zoster virus twice. I had reactivation of CMV when I first got sick. I no longer get tested for viruses.
  28. G

    Antivirals for MLV-related Viruses (CFS type 1 to 4)

    I love your idea of half dosage. Would this mean cutting the pill in half because I don't think the dosage comes less than 400mg. It is a coated pill but I don't think it is time release. I wonder if it would hurt the stomach if cut in half.
  29. G

    Antiretroviral Trial

    Daffodil, I, too, am so desperate I am going to take antiretrovirals. I am only going to take Isentress and tenofovir because AZT can be so toxic. I have read about some HIV patients are taking antiretrovirals and they just don't work so they are switched to other drugs. It may not be known why...
  30. G

    My experience with ARVs

    Since I am considering taking arvs I decided to read up on these drugs. I am reading, "The guide to living with HIV infection":developed at the Johns Hopkins AIDS clinic. There are many instances where AIDS patients need to change drugs because of toxic effects. The good news for them is they...