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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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  1. denmarkk

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    I feel as if I may be raining on everyone's hope, but here's another anecdotal story: Dr. Enlander said that the couple CFS patients he had who developed B lymphoma and received Rituximab did not experience a CFS remission. (He does not now or before administer Ruxtimab. These were CFS...
  2. denmarkk

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    I hope so, too! Definitely keep us posted. Can't wait to hear updates.
  3. denmarkk

    Appt With Enlander

    I get that from him, too. It makes my GI tract more regular and less gassy, but no change in my health overall (or at least too small a change to notice).
  4. denmarkk

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    Thanks for posting. Very interesting. Rituximab looks more promising than I thought This graph shows that everyone, except for the last entry, had at least some gain in function.
  5. denmarkk

    Appt With Enlander

    You're right. The needles are very short. This last batch had shorter needles (orange caps) than previous batches but my newest shipment (gray caps) may be longer. I haven't opened one yet. I give it to myself very high up on my arm. I aim for the spot about two-three fingers down from the...
  6. denmarkk

    What are seminal studies in ME research?

    Staines and Marshall-Gradisnik Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5217865/
  7. denmarkk

    What are seminal studies in ME research?

    So many from Leonard Jason. Too many to pick from, but here's three that stand out to me. A Prospective Study of Infectious Mononucleosis in College Students https://www.researchgate.net/publication/312936696_A_prospective_study_of_Infectious_Mononucleosis_in_college_students Estimating the...
  8. denmarkk

    What does Ampligen's effectiveness tell us in light of the latest research?

    @Gingergrrl Thank you! It was a frustrating time. Julie Rehmeyer reported about an interview she did with the NIH head, Francis Collins: "In a recent interview, Collins described the range of possibilities under discussion. “They’re talking about everything from basic science – the...
  9. denmarkk

    What does Ampligen's effectiveness tell us in light of the latest research?

    @Jesse2233 Yes, unfortunately, I would have the same problem trying to get transferred to Dr Peterson's AMP511 group. NIH has teased about possibly doing trials with Ampligen and Rituximab, but that would be years away (if ever) because it will take a couple years to finish their...
  10. denmarkk

    What does Ampligen's effectiveness tell us in light of the latest research?

    No, I don't think so. When Dr. Enlander stopped being a provider, I was "removed" as a AMP511 trial participant and much to my chagrin, am no longer eligible. Dr. Podell (NJ) agreed to be a provider for me, but Hemispherx was at the height of their chaos what with Carter being fired, austerity...
  11. denmarkk

    What does Ampligen's effectiveness tell us in light of the latest research?

    @Jesse2233, @Jeremy C. , @LaurelW, and others on this thread. Just wanted to say how much I appreciate you starting and contributing to this thread. It's great to see so many testimonials from so many Ampligen users in one place. I'm OGrover from Reddit (one of the posts you cited). I have a...
  12. denmarkk

    Clinical trials from the patient perspective: Survey in an Online Patient community Feb 27 2017

    That's why I didn't join the current post-infectious ME/CFS study at the NIH, even though I qualify and live 45 minutes away. The number of tests in such a short time frame scared me away. I was worried about the short and long term repercussions on my illness by being taxed in such a grueling...
  13. denmarkk

    autoimmune or viral??

    That's exciting news about the early success of Dr Scheibenbogen's new trial. I think we have to be open that it's either of those theories, or neither. I.e., it's something totally undiscovered altogether. Just as the discovery of the misfolded proteins (prions) that cause mad cow disease was...
  14. denmarkk

    Cognitive processing of exercise and activity-related information in CFS, asthma & healthy controls

    Serious question - what does it mean when they say "induced to have a depressed mood"? How does one induce depression in someone? I would love to know their complete methodology of attempting this. I immediately flashed to a story of a director who wanted a child actor to be sad for a scene...
  15. denmarkk

    Narrowing of pulse pressure when standing, what is it called?

    Narrow Pulse Pressure can be caused by low stroke volume. Usually it is viewed as a possible symptom of cardiac disease. BUT, in ME and CFS cases it may simply be from heart muscle fatigue. As our cardiac muscle cells run out of energy, they can't pump with as much force needed to meet the...
  16. denmarkk

    Appt With Enlander

    He didn't push any supplements on me. I didn't even know he was stocking some until a staff member opened a drawer full of them in front of me. The only supplement he recommended at first was his electrolyte mix (developed at Mt. Sinai) and that was after I complained about the commercial...
  17. denmarkk

    Fatigue and psychosocial variables in autoimmune rheumatic disease and CFS

    Don't worry. I fixed the last sentence in the abstract for them: "For example, these study authors' lack of acceptance and avoidance behaviour toward new biomedical research results may be particularly important in understanding their perpetuating fallacies about fatigue in CFS."
  18. denmarkk

    #MEpedia - OMF page, Davis page, Naviaux page

    My pleasure!
  19. denmarkk

    #MEpedia - OMF page, Davis page, Naviaux page

    I'll work on Dr. Naviaux's page.
  20. denmarkk

    Appt With Enlander

    He's only in the office on Weds now. I think they are having phone problems.
  21. denmarkk

    MAF878

    It's hard to tell. I'm feeling a tiny, tad better, but not sure if I would have anyway. Tummy is a bit better. Less gas and indigestion. Overall, I feel less flu-y, and I can stand still for a couple seconds more. Still having the same cognition problems and level of fatigue.
  22. denmarkk

    Feel like giving up

    I never went to Mayo, but I know several people who have ME/CFS and did go. All of them said the experience with the doctors and staff was very good and they felt cared for. However, none learned anything new to help them feel better. And all ended up with a big bill. No one got a new...
  23. denmarkk

    Comment by 'denmarkk' in 'Remission: completed 1st university semester with minimal struggle and top grades'

    Thank you - " there IS hope" - huge congratulations!
    • denmarkk
    • Blog entry comment
  24. denmarkk

    MAF878

    I've only been using it for a month, but I think my stomach likes it. No side effects that I've noticed. I started the Hepapressin shots the same time and I feel a tad better. Hard to say if it is one or the other or the combo.
  25. denmarkk

    Appt With Enlander

    Hepapressin is $40 an injection (one injection per week), so $160 per month GcMAf yogurt starter is $120 a month Gear Up and Gear Up Plus (they use to be called Immune Resist and Immuno Plus - same product just different name) are each $38 per month Here's a price list for other supplements...
  26. denmarkk

    Appt With Enlander

    I can answer that question because I was one of his Ampligen patients and was in his office twice a week for 7 months. He's not retired, just has fewer hours in the office and less staff. Try calling on Tuesdays, because that is usually the day he is in. His nurse of 20+ yrs retired and she...
  27. denmarkk

    Appt With Enlander

    The only reason he stopped the Ampligen trial is because of contract differences with Hemispherx. His infusion nurse retired and he wasn't able to replace her. He still likes Ampligen as a drug. His words were 'good drug, but poorly run company.'
  28. denmarkk

    Hepapressin

    Good article on it here: Nexavir (Kutapressin) for CFS Thanks, Hip! That was a great blog entry! Very helpful!
  29. denmarkk

    Hepapressin

    I just took my first Hepapressin IM injection this week. Here's a short video is which Dr. Enlander lists the ingredients in the injections: http://cfstreatment.blogspot.com/2012/12/dr.html
  30. denmarkk

    My visit to Dr Susan Levine NYC

    I just realized in my previous post, I made an error. I said I improved with generic Valtrex in a couple days. I meant a couple WEEKS. I started to get less brain fog and flu-lke feelings. I never had any side effects to valtrex and I'm been on it continuously for 2 1/2 years. Also, you can...