• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. D

    Which difficult to obtain treatment would you most like to try?

    I tested positive ANA and positive on RNP. No other positives but family history of autoimmune illness led me to believe that what I had was some variation of autoimmune disease not fully developed. The IVIG dose was Gamunex 1000 Mg per KG every three weeks. First dose took two days and then...
  2. D

    Which difficult to obtain treatment would you most like to try?

    Perovyscus- I agree with Jesse as your theory makes sense in a lot of ways. For me I always thought there was a blood brain barrier problem as I have high unspecified protein concentrations in my CFS. Can you tell me what is your background as this sounds as plausible as any theory out ?
  3. D

    Which difficult to obtain treatment would you most like to try?

    The date was Feburary 19, 2014 the day after my back surgery . I felt something wrong in my body but was not really alarmed because I believed it to just be part of the surgery. That night I could not fall asleep which was strange because I never had sleep issues before. My chest muscles under...
  4. D

    Which difficult to obtain treatment would you most like to try?

    Jesse- A simple question but not an easy answer. At first I thought it was viral as my onset was acute and so it made sense that something like a virus would come on.so quickly. But then I think back and realize that for a long time I loved to nap after a good workout. It made me think that...
  5. D

    Which difficult to obtain treatment would you most like to try?

    Rodger-Thanks for the kind words. I was just trying to provide insight into my journey to finding a cure , I am in a unique position that I contracted the illness the first month after I retired so I had the finances to do things most people could not undertake because every Non-FDA theropy is...
  6. D

    Which difficult to obtain treatment would you most like to try?

    Have you tried multiple antiviral drugs at the same time ? Taking drugs that compliment each other yet do not overlap treating the same virus. If it is too toxic how do the HIV positives take multiple drugs for the rest of their lives. I see always posts on Famvir / Valtrex/ Valcyte/ but...
  7. D

    Which difficult to obtain treatment would you most like to try?

    Here is something that is interesting to me. During the first three months after my first symptoms started I never tested positive for ANA. Then at the fourth month Labcorp tested me positive but Quest did not . Then at the one year mark both tested me positive. The RNP auto was showing up but...
  8. D

    Which difficult to obtain treatment would you most like to try?

    I do not post often but wanted to on this post because Jesse does a great job of researching different topics. I have been sick for 3.5 years. Mine started with a combination of Flu vac and back surgery. At the six month mark I decided to try Stem Cell Infusion hoping that it would be the...
  9. D

    If there were no barriers, financial or otherwise, what treatments would you try

    My experience with RTX was that it was easier too take than IVIG . MAybe because I had IVIG first and RTX second that is the case. RTX may help those with autoimmune issues as you can see it been in trial for MS and RA. In the US Rhuemetologist will not go near RTX when it's not been FDA...
  10. D

    If there were no barriers, financial or otherwise, what treatments would you try

    RTX was done in the US but followed what Norway laid out was the dose and schedule. There was no response after 9 months of doses and immediate B cell depletion. No worse or better exactly the same. The B cell depletion did not affect my immune resistance. I do not think that it is autoimmune...
  11. D

    If there were no barriers, financial or otherwise, what treatments would you try

  12. D

    Case reports: Stem Cell Therapy for Autonomic Nervous System Dysfunction in Two Young Patients

    Cheney took a group of patients to a clinic in Costa Rica( There are a few there as medicine is not closely regulated and so all these places moved there) and as far as the clinic you can google it and find it. They do tons of advertising and put out youtube videos of all thier successes. I read...
  13. D

    Case reports: Stem Cell Therapy for Autonomic Nervous System Dysfunction in Two Young Patients

    THe locations outside the US can/will use both types of Stem cells (your own and fetus). In the US these clinics can do a same day procedure using liposuction( your own cells) and then separating the cells using centrifugal machines to harvest the stem cells. Same day procedures may get 20...
  14. D

    Case reports: Stem Cell Therapy for Autonomic Nervous System Dysfunction in Two Young Patients

    I went and had Stem cell infusion both IV and Intratecal and can tell you it had no effect on my symptoms and after 45k spent out of pocket decided it was not worth it. I had the three procedures done in the first six months after the illness started after a vaccine and back surgery. I was...
  15. D

    If there were no barriers, financial or otherwise, what treatments would you try

    I think that RTX will turn out not to be what people are hoping for. It may have an effect if your illness is based on some autoimmune process but no one knows. I thought for sure it would help because my family ( cousin and niece) have autoimmune diseases(MS and such). It did abosolutly no...