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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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Search results

  1. N

    Theoretically... if you had to move house

    Sorry for being away so long, there are many things to attend to here at home. All seems to be happening at the same time but at least I can handle most of it with the improvement in my health. I want to clarify what I wrote about the irritable bowel protocol which I take. It is not just a...
  2. N

    Theoretically... if you had to move house

    I have a different suggestion to offer. Dr. Klimas and Dr. Rey are finding most of their patients have a problem with mold. Last year, I tested positive for Ochratoxin. I lived in a house as a child in which the basement partially flooded. Dr. Rey gave me her mycotoxin treatment...
  3. N

    ME is not mould intolerance; mould intolerance is not ME

    I have been on a detox protocol for the past six months and have noticed a reduction in my overall pain level and an increased ability to tolerate sustained activity. I am taking coconut charcoal capsules twice a day and liposomal glutathione 5cc twice a day. Dr. Rey and Dr. Klimas told me that...
  4. N

    Significant improvement on MitoQ

    I must report that the Mito Basics with PQQ has stopped working for me. I know the reason is because I was taking care of a terminally ill family member during September and October. It was very stressful for me as he required care both day and night. Then there was the funeral and friends...
  5. N

    Significant improvement on MitoQ

    I should also mention that Dr. Klimas said that I have four pathways of double mutations which indicate that I do not metabolize food containing folic acid. She said that I should not take enriched B vitamins and that I should take methyl folate 400mcgs daily. She told me to stop the K-Pax for...
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    Significant improvement on MitoQ

    Thirty.
  7. N

    Significant improvement on MitoQ

    Dr. Klimas told once that she does not recommend any supplements unless she has reviewed the research regarding their efficacy. I can only tell you that I have noticed a difference and that I have not had that happy experience since I was on Ampligen in 2012. Because of my circumstances here...
  8. N

    Significant improvement on MitoQ

    I have read this thread with great interest. A few months ago, I saw Dr. Klimas and she wanted me to start a supplement called Mitochondrial Basics with PQQ from Life Extension. She told me that the PQQ helps the cells produce mitochondria even the cells that have viruses in them. I have...
  9. N

    What supplements are best?

    Nova's Neuroimmune Institute (Rey/Klimas) are asking their patients to start taking K-PAX Immune Formula (not the energy formula). One nurse practitioner stated to me that they have had encouraging results with this product. Website is: kpaxpharm.com Phone: 1-877-777-KPAX
  10. N

    Hemispherx Enters into Agreement for Early Access Program for Ampligen in Europe

    I don't have much time to write more this morning. I was at Nova clinic last week and the nurse practioner told me that Hemisperx was raising the price of Ampligen, so that is true. However, they are supposed to cover the cost of the IV's. Dr. Klimas told me that Dr. Peterson is using 200mg...
  11. N

    After my appointment with Rey

    Glad that you achieved some improvement. Could you please let us know how long you have been taking Equilibrant and your dosing protocol? Thanks.
  12. N

    Dr Montoya and Valcyte

    Time to start thinking outside the box. Perhaps you can find a doctor to test you for.... Eostein-Barr Early antigen IgG (mono reactivation antibody) and HHV6 IgG and also Coxsackie B (1-6). If you have reactivated your EBV and/or HHV6, maybe the doctor can put you on a long term low dose of...
  13. N

    Trying valcyte again, so far so good

    I would estimate that I feel about 30% better than my pre-Ampligen status. Except when my symptoms get bad, I continue to feel much less sick on a daily basis (latent EBV?). This makes a very big difference in my functioning and coping abilities. I was indeed quite disappointed that I didn't...
  14. N

    Trying valcyte again, so far so good

    It's long past the time for an update on my post Ampligen protocol. I had a very rough winter season, i.e. very busy holidays, lots of visitors, a head cold, etc. I began to feel an increase in symptoms about three months after stopping Ampligen, such as intermittent cough, sore throat...
  15. N

    Frustrated with lack of progress with Famvir

    From what I have gathered, it may take as long as a year before you will be able to judge if the Famvir is helping you. I am taking 250 mg of Famvir per day and only started as the beginning of November. I did get a significant benefit from a year of Ampligen which ended on Oct. 5th. I have...
  16. N

    Combo rituximab and thalidomide analogues stimulate nk function

    I did not have an NK blood test for at least three years before starting Ampligen in October 2011. Pre-Ampligen NK number was 9.99% and the activity was 31.44%, all normal. However, I felt terrible and my viral titers to EBV and HHV6 were quite high.
  17. N

    Trying valcyte again, so far so good

    I think its performance depends on the individual patient being treated. Ampligen stimulates the patient's own antiviral pathways. It does not target specific viruses. Ideally. a patient should receive an antiviral medication targeting herpes viruses while also receiving Ampligen. However, I...
  18. N

    Trying valcyte again, so far so good

    Yes, my NK function was in the normal range before I started the Ampligen and I can only attribute that to the Imunovir. I guess the Ampligen built on that so I had a good outcome from the treatment.
  19. N

    Switching from Famvir to Valcyte.

    Ema, I was on Valcyte in 2008 under the same dosing protocol as you intend to take. About nine days into the therapy, I began to feel a lot more body pain (I also have fibromyalgia) and fatigue. This stayed with me for the full six months of therapy. I did not get any perceivable benefit from...
  20. N

    Trying valcyte again, so far so good

    How much Imunovir are you taking? How does it make you feel? My natural killer cell function is within the normal range and I was quite relieved that Dr. Rey didn't put me back on Imunovir as it made me feel bad. A bit like that the cure is worse than the condition.
  21. N

    Trying valcyte again, so far so good

    I remember that Dr. Rey said that when I achieve viral latency, she will probably maintain me on 125mg of Famvir for an indefinite period of time, which I took to mean until a better treatment is developed for our illness. The problem of recurrence of high viral titers is, in her view, very...
  22. N

    Trying valcyte again, so far so good

    Presumably, you meant to say that you will continue on Famvir when you finish the Valcyte and that sounds like a good strategy. I have been taking Famvir 250mg/day for almost a week after the 125/day build up. I am functioning at about a 70% capacity and continue to feel fairly normal with...
  23. N

    Trying valcyte again, so far so good

    It is encouraging that you are beginning to show signs of improvement on Valcyte and that you are planning to continue beyond the six month mark. In the Montoya study, Dr. Rey said that the relapse rate was high when the drug was given only for six months. Maybe you could switch to Famvir or...
  24. N

    Epstein–Barr virus infection induce chronic fatigue syndrome

    I took Valcyte in 2009 for six months with no improvement. I was on Imunovir before I started Ampligen. I think it helped keep up my NK cells and therefore gave me a bit more energy. The dosing for Famvir does sound low but that is what Dr. Klimas and Dr. Rey are recommending now.
  25. N

    Epstein–Barr virus infection induce chronic fatigue syndrome

    I'm just home from receiving my last dose of Ampligen and am happy that the treadmill which I have been on is over. I have my prescriptions for the Famvir and Doxepin elixir (sleep). I am not going to continue the LDN as I have been taking it for two years and the only benefit it gave was a...
  26. N

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Jacque, how can you contemplate taking another antiviral while you are on the Rituximab and feeling so bad?
  27. N

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Yes, I feel less sick, somewhat more like normal on a day to day basis and I can work about the house for five to six or seven hours a day with a nap or two in between. I still have a sore throat, muscle pain (although less) and still must be careful about not over extending myself. These...
  28. N

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows. The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody. Then the HHV-6 IgG went from a positive...
  29. N

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows. The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody. Then the HHV-6 IgG went from a positive...
  30. N

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Okay, I received the antibody reports from Dr. Rey today and the two most encouraging are as follows. The Epstein-Barr EArly Antigen went from Positive before Ampligen, to Negative after nine months on the medicine. This is the Mono Reactivation Antibody. Then the HHV-6 IgG went from a positive...