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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. froufox

    Increased symptoms after starting Byron White Formula?

    Hi kskiska, Wendi C is right the BW remedies are really potent so you might well have experienced some kind of die off or immune activation from the viral formulas. Ive not tried the anti-viral ones yet but i had a very strong response/herx to A-bart that lasted over a week after taking just 1...
  2. froufox

    23andme results

    deleted
  3. froufox

    Gamma globulin

    Re Dr Myhill, I enquired about immunoglobulin/gamma globulin injections a while ago after reading this thread. The secretary got back to me after speaking to Dr M saying that she wouldnt due to concerns about prions, however after reading here that they are filtered down to the prion level...
  4. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    yes i think because it works by boosting macrophages, and macrophages secrete IL-6, and increased Il-6 is associated with depression. Yes ive seen the stuff about mast cells/histamine...i've not found anti-histamines to be majorly helpful though i did find Lutimax helpful at times after bad...
  5. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Hi Violeta, yes definitely think that the balance between the 2 arms of the immune system had changed, as my body maybe started to go after the intracellular infections and also perhaps because the Tregs/TH17 that are involved regulating that balance is also dysfunctional that reaction gets out...
  6. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Hi Maryb, thanks :) I should clarify a bit more...even though I had a very strong immune reaction, it definitely felt like a positive thing one on level as I very rarely get flu type symptoms and when I do, my ME symptoms abate somewhat, and that happened on this occasion too, so obviously it...
  7. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Hi Maryb, Ive only been taking between 1/4-1/2 a teaspoon once a week or once a fortnight! I seem to be very sensitive to it eg after my 3rd dose, i had a MAJOR flu (worst one of my life, and about the 2nd since Ive had since having ME in 21yrs!). The dose after that my lymph glands (armpits...
  8. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Hi Anne, thats brilliant and very encouraging that you're experiencing similar benefits to Sushi, I hope these improvements continue! :) I am quite hesitant to take it again so will leave off it for the time being though the lymph symptoms have for the most part settled down now, which im...
  9. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    what about kefir on top of the probiotics that you have Madietodd?
  10. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    I guess we are all different, and this can depend on so many different factors like severity of illness, length of time being ill, ability to care for ourselves etc. I was severely ill in the past, having lost tons of weight at one point and after that I was sensitive to everything. Ive also...
  11. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Thank you Anne, Sushi and Asklipia for sharing your experiences, I really appreciate your feedback :) It is really reassuring to know that you've all had lymph issues, though I am sorry that it has been so rough too, esp with you Anne (I'm sorry to hear about the burning!). I am feeling a bit...
  12. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    great to hear of the improvements experienced by some on here! :) Just wanted to ask if anyone else has experienced continued lymphatic swelling? I continued to take just 1/3-1/2 teaspoon of RS per *week* (my last dose was over a week ago) and my lymph nodes keep swelling up, in my armpits, neck...
  13. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Asklipia, very interesting! :) I can relate to the lack of emotions, inability to socialise (not just due to lack of energy)... I guess it just shows the power of bacteria and how they play a huge part in dictating/shaping our behaviour/how we feel and think! Which has definitely been my...
  14. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    thats interesting Anne, and no, I would never have thought that potato could create such havoc! lol :D Like you I had the sore throat and swollen glands too .... in my case I do have leaky gut and I presume that partly explains my severe reaction - symptoms eg sneezing, mucus, were exacerbated...
  15. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    same here Anne!! I unleashed a monster too :eek: I wasn't sure if it was a healing crisis or what...it almost felt like the start of ME all over again which was very disconcerting to say the least. However i think it was probably a "healing crisis" of some sort...i had pints of mucus appearing...
  16. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    zzz0r I passed what looked like a tape or threadworm (it looked like a kind of noodle) a few weeks ago, 2 days after my 2nd dose of RS. I fished it out of the loo with a plastic knife and i could tell by the "feel" of it with the knife, that it was kind of rubbery/veiny in texture. It also had...
  17. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    I find green clay helpful and I have found gut formulas containing bentonite/charcoal helpful in the past too, i guess because they are helping with LPS, but I agree Violeta re these binders helping with the metals released in the gut. I have done a lot of chelation, but I have released more...
  18. froufox

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    I recently tried the Resistant Starch (Bob's Red mill one from iherb) - i took 1 heaped tspn, and I felt very depressed and kind of wired too (sort of felt like nervous system was really irriated) the next day (with a low mood for a few days after that) so clearly it was too much to begin with...
  19. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Apologies that I havent kept up with this thread for a few months, but just to add my 2 cents here....I went to a talk recently given by a nutritionist which was specifically about autoimmune illnesses and he discussed several cases of his all of whom responded/improved significantly to...
  20. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Ive tried Imunovir too like ukxmrv and I experienced benefits from it quite quickly, so i guess that at least in my case, that would not suggest the same effect on B cells as Rituximab, and that it was due to some other mechanism. Didnt Dr Cheney say that it is supposed to balance the Th1 & Th2...
  21. froufox

    Breakspear Medical in the UK

    Hi Brenda, thanks for that :) I think i might have tried that one actually, or perhaps it was another brand of pea protein from iherb, ill have to check. Sorry you've having problems with your new supps, how frustrating! I hope u manage to figure out what is causing these recent issues.
  22. froufox

    Breakspear Medical in the UK

    Hi Brenda, what protein have you found helpful for your leg muscles? thanks :-)
  23. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Thanks for replying. This leaves me wondering why there would be improvements in the ME symptoms afterwards, in both energy and cognitive function, if the antibiotics themselves were only acting as a poison. Perhaps Ive not quite understood tho. I know the immune system is extremely complex...
  24. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Hasn't Dan Peterson found about 20-30 times or even more, the number of pathogens in people with ME/CFS as compared to controls. I cant remember the exact details, or if these were active infections or not, but it was posted by a patient of his on this forum a few yrs back. He does do extensive...
  25. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    could it be that since the immune system is dysregulated/unbalanced (eg th1/th2 imbalance), apart from the resultant autoimmunity aspect, it is also left unable to fight off pathogens as a result of this, and so the pathogens do end up gaining more of a foothold so to speak?
  26. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Yes I'd really like to understand this more too...I get the basic gist of autoimmunity as that is what it sort of feels like a lot of the time (body attacking itself), but I cant get my head around die-off reactions/herxes (eg feeling poisoned, more fatigued etc) that Ive personally experienced...
  27. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    eek that sounds very unpleasant so i'm glad u don't get them anymore! Interesting how accepting them made them go away in your case, thats never happened with me even tho they don't really bother me hugely. Yes agree about the predisposition. My hypnagogic hallucinations arent very nice but i...
  28. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Curiously, Ive also had a lot of these type of symptoms both prior to, and since becoming ill with ME, although in my case they've definitely been a lot more severe since becoming more ill. I was always prone to episodes of sleep paralysis throughout my life since i was a child, but Ive not had...
  29. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Thanks lansbergen, thats interesting. Ive had IL-10 tested a few times, and its always been high, the last time a few months ago it was 101 (10-80).
  30. froufox

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Hi Marco, thanks yes I completely agree about the multiple, and also perhaps unknown actions of some antibiotics/drugs in general, and that some of the improvements I experienced may well, at least partly, be explained by that. However, would that also explain herxing/die-off reactions too? I...