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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. girlinthesnow

    Chronic fatigue syndrome from vagus nerve infection: psychoneuroimmunological hypothesis

    @Violeta, I've been looking for sources to explain the relationship between viruses and bacteria in the body, thanks very much for these.
  2. girlinthesnow

    Co Enzyme Q10 reaction? whats going on here?

    Thanks @justy and @alex3619 for having answered a question that I hadn't realised was a question! Today I also had an episode of severe cognitive dysfunction after taking my usual dose of Coq10. I've taken 200 mg twice a day for more than two years so I didn't realise until now that this...
  3. girlinthesnow

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    My experience would indicate that it is unsafe for people with MCADs. Listening to the whole recording he seemed a little vague but also less gung-ho about treating gluten disease (coeliac) but was ok about Crohn's. I feel a little queasy about it.
  4. girlinthesnow

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Gingergrrl, I think your concerns are justified. Iif you listen to the first few minutes of the link @Sushi posted, Dr Vincent explains that this was the origin of LDI. Dr Myhill gives a form of EPD, when I was a patient I told her about my experience. She said it was unusual but not unique...
  5. girlinthesnow

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    I had EPD with Dr McEwen in 1995 for multiple food intolerances. It was disastrous, I lost the ability to eat many more foods and have never been able to tolerate them since. I had a bad response to the first treatment, he insisted this was common and I would need to have more doses. I had...
  6. girlinthesnow

    The Abundant Energy Summit

    Horrible graphics on their site which made me not take it seriously but perhaps they just employed a terrible web designer o_O
  7. girlinthesnow

    Lack of chatter about the Ketogenic Diet

    A pure ketogenic diet gave me chronic constipation.
  8. girlinthesnow

    Unfolded Protein Response and A Possible Treatment for CFS

    @mariovitali What dose of resveratrol are you taking now?
  9. girlinthesnow

    Unfolded Protein Response and A Possible Treatment for CFS

    @mariovitali Just curious, have you ever added calorie restriction to your searches?
  10. girlinthesnow

    Vagus Nerve & Inflammation--Radio program

    Thank you so much @anciendaze for your post, full of so many useful, intriguing and potentially life-saving pieces of information. You are a treasure.
  11. girlinthesnow

    I can now sleep...with this curry

    Certainly I will send you some, curry by post! :)
  12. girlinthesnow

    I can now sleep...with this curry

    Thanks @cigana for the recipe, I'll try this for my chronic insomnia, cheers!
  13. girlinthesnow

    My first appointment with KDM

    Thanks @Daffodil. Wow, it is too expensive to swallow, I might try it as an enema!
  14. girlinthesnow

    My first appointment with KDM

    @Daffodil , is this the one you ordered? I've been taking Align too, without ill effects but probably no positive ones either! http://www.amazon.co.uk/Adult-Formula-CP-1-Custom-Probiotics/dp/B004BU51JK
  15. girlinthesnow

    Mitochondrial localization of viral proteins as a means to subvert host defense

    I have both chronic hypocalcaemia and chronic viral (herpes) infections. I just found this old thread about calcium/hypocalcaemia and viral hijacking of cell mechanism. Is there any new research into this mechanism? Thanks!
  16. girlinthesnow

    Oral Colostrum Macrophage-activating Factor for Serious Infection and Chronic Fatigue Syndrome: Thre

    @ukxmrv It shifted something, in the wrong direction. I think there was a connection with glutamate receptors but I haven't enough brain to work out how or what.
  17. girlinthesnow

    Drinking Water

    Another Berkey fan here.
  18. girlinthesnow

    Oral Colostrum Macrophage-activating Factor for Serious Infection and Chronic Fatigue Syndrome: Thre

    Injectable GcMAF initiated severe microglial (?) activation in my brain, giving me seizures which I'd never experienced before. I gave myself one low dose injection a week for 16 weeks, four years later my brain has not recovered.
  19. girlinthesnow

    Unfolded Protein Response and A Possible Treatment for CFS

    Yes, it does feel like an answer, perhaps even 'the' answer. :) Info was on Sterling Hill's report from her site mthfrsupport.com
  20. girlinthesnow

    Unfolded Protein Response and A Possible Treatment for CFS

    Further to the above I've just had another trawl through my 23andme results (run through Sterling Hill's app) and found these mutations: PAH A33429G rs10860936 (Risk C) C;C PAH A75311G rs1722387 (Risk T) T;T PAH C35625G rs1522305 (Risk G) G;G PAH C5594T rs1522296 (Risk A) A;A PAH G1155C...
  21. girlinthesnow

    Unfolded Protein Response and A Possible Treatment for CFS

    Interesting you should mention 25 (OH), mine is high 59.7 pg/L 1,25 Di-OH is even more out of range at 112 pg/L (normal range 20.0-75.0) but I did stupidly supplement this on the advice of a nutritionist. SlgA is low 392 (range 510-2040) Perforin mRNA 1010 (normal range 250-750)...
  22. girlinthesnow

    Unfolded Protein Response and A Possible Treatment for CFS

    Thanks for your kind offer to look at this. I have great difficulty with organising my thoughts but will try. Here goes... Apart from childhood illnesses I was strong and well but have always had low BP, low body temperature and OI. About 25 years my thyroid suddenly stopped functioning...
  23. girlinthesnow

    Unfolded Protein Response and A Possible Treatment for CFS

    @mariovitali here are my results in bold: GCH1 rs12147422 (Risk C) C;T rs3783637 (Risk T) C;T rs7147286 (Risk A) A;G rs7492600 (Risk T) G;T rs8004018 (Risk G) A;G rs 3783642 (Risk C) C;T ER Stress response none of those listed Choline Metabolism (impaired Choline absorption => impaired...
  24. girlinthesnow

    Unfolded Protein Response and A Possible Treatment for CFS

    I'm slowly working my way through this thread but wanted to ask about a-l carnosine and coffee. I don't remember how I came across it but about 6 months ago I started taking 500 mg of beta-alanine when I was doing a pulsed abx regime for Lyme and was very toxic. I had chronic insomnia and...
  25. girlinthesnow

    Psychoquackery on BBC Radio 4

    Psychology is not medicine or science and has no place whatsoever in either.
  26. girlinthesnow

    Has anyone actually been cured by KDMs lyme treatment?

    @trickthefox As far as I know KDM does not use PICC lines which are inserted in the chest. PICC lines are done in a hospital setting during an operation. They are risky and used when infection is so severe that there is no other option. Getting an infection in a PICC line is very serious and...
  27. girlinthesnow

    Antibiotic Ketek. Would you?

    Hi Justy, had the same experience with it as szenn, just the usual stuff that I get from abx, no where near as awful as Rifampicin which was hellish and another alternative for Bart infections but I'd talk to KDM about it if you're feeling unsure. I don't blindly do what I'm told anymore!
  28. girlinthesnow

    Phosphatidylcholine (PPC) adverse effects?

    It was a nutritionist who recommended it along with lots of others to add to my extensive collection of 'pills and potions'. I'm working my way through them but got sidetracked this week by a pesky kidney/UTI infection. I'll get back to it eventually. Yes we are :) Although it's kind of...
  29. girlinthesnow

    Phosphatidylcholine (PPC) adverse effects?

    Yes I couldn't take this one either.