• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. justy

    In Memory of Purple (Klara)

    Klara's funeral will be held on Monday In London: Monday 1st October 2018 at 10.45am Honor Oak Crematorium Camberwell new Cemetery Brenchley Gardens London SE23 3RD Klara’s wishes for the funeral is she didn’t want a sombre affair in black suits. She want’s people looking positive, flowery...
  2. justy

    In Memory of Purple (Klara)

    I first met Purple on Phoenix Rising and later, even though we never met, we became friends and sent each other messages occasionally. She worked hard at M.E advocacy from her bed, even raising money for investinME by selling her old stuff on ebay. I remember her laughing about the kind of...
  3. justy

    In Memory of Bob: A tribute from his friends

    Saddened by this beyond words. Bob and i had been chatting recently about our similar issues with food. He was such a kind and balanced presence here on PR and was missed so much when more ill and will be missed even more now by me and many others.
  4. justy

    Using a wheelchair.

    I use a wheelchair all the time outside and sometimes inside. It took me two years of missing out on family days out etc before i decided to try one. I didnt find it hard emotionally - it was very liberating, but my family did. It took them quite a few years to get used to it - also husband...
  5. justy

    Has anyone improved MCAS symptoms by treating underlying infections?

    Yes, i hear you on this! I'm always sad to hear anyone say this, but my situation is the same as yours and i know i am also at the end of my road. I cant keep searching because trying anything is making me worse year on year. I now only tolerate 8 foods, and still react almost daily to some of...
  6. justy

    Very poor immunity

    Most of my in depth immune testing was done by KDM in Belgium, not by the NHS in the UK. I did however get my GP to test immunoglobulin levels - IGG, IGM and sub classes In the UK the only people that get IVIG are people with primary immune deficiency. I used SCIG for about two years and it...
  7. justy

    Pseudobulbar affect, emotional lability

    Yes. I have posted about this elsewhere. I also get the hysterical laughter of pseudobulbar. It is horrible. The crying and the laughing can come on even if something is not that sad or that funny and i then become hysterical and actually physically cant stop laughing or crying and it becomes...
  8. justy

    Open-label pilot for treatment targeting gut dysbiosis in MECFS...

    KDM has been treating his patients for gut dysbiosis (if found) for some time. I think the results are mixed. My anecdotal evidence shows that more of his male than female patients make good recoveries.
  9. justy

    ME/CFS is a mast cell disorder (hypothesis)

    Have you had a bone marrow biopsy to rule out mastocytosis? This should be done if Tryptase is high. No idea if anything can be done about it. I take a lot of vitamin c as well.
  10. justy

    Watching Unrest again, I'm noticing something.

    Ive sat with my legs crossed under me or up on the seat next to me all my life, my mother frequently comments on it and how ive done it since she can remember. I also cant stand completely still with two legs straight - lifelong issue - i either stand with one leg over the other as in the...
  11. justy

    ME/CFS is a mast cell disorder (hypothesis)

    I havent done gene testing, no. Interesting idea though. My mast cell Dr thinks i may have a leaky blood brain barrier as i react very strongly to any sedating drugs - i take a 1/4 of a 2mg valium tablet for travelling and it works, also ketotifen knocked me out at a 1/4 of one tab. Steroids...
  12. justy

    ME/CFS is a mast cell disorder (hypothesis)

    This is what i have been told, yes. Ceftriaxone. But it was Doxycycline two years before that that kicked off my mast cells big time with intense itching 24 hrs a day that went on for months and months. I still get breakthrough itching now, but lots of antihistamines just about controls it...
  13. justy

    ME/CFS is a mast cell disorder (hypothesis)

    The first severe reaction was when receiving IV antibiotics for suspected Lyme and co. I had a seizure/dystonic type storm immediately the drip started. I felt severe impending doom, flushed and then started jerking in my arms and legs, my mouth drooped downwards and i couldnt speak properly...
  14. justy

    ME/CFS is a mast cell disorder (hypothesis)

    Good luck with finding a Dr. Let us know how you get on. I havent updated my postings on MCAS in a while, but mine has, as Afrin suggests in his book, stepped up over time so that now i am having minor reactions a few times a week, own to a very limited diet and unable to tolerate all but my...
  15. justy

    mild symptoms

    I had a long remission a number of years ago, for about 9/10 years to near normal functioning. During that time i believe i still have very mild M.E. I could exercise, but always felt really exhausted afterwards and had a lot of issues with not being able to improve stamina or get fitter. I...
  16. justy

    $1,000,000 donation to OMF!!!!!

    That is wonderful news. Just great.
  17. justy

    Cost of IVIG

    Hi, i used low dose SCIG, - Gammanorm brand. If you have a European prescription you can get it anywhere in Europe - Belgium is cheaper than France.
  18. justy

    Constant crash anyone?

    I feel like this every day since becoming more severe. All common ME symptoms.
  19. justy

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @jeff_w thanks so much for coming back to PR to let everyone know about your experience. You say you also had MCAS symptoms - do you still have them? are they unrelated to the spinal issues (although it is related to EDS so...) I don't have a solid EDS dx as i'm 48 and not as flexible as i...
  20. justy

    Karma and ME/CFS?

    Just no.
  21. justy

    Research update from Prof. Ron Davis (video!)

    In UK patients this figure would be close to 100% of patients having had chicken pox as it is considered a normal childhood illness and we are not vaccinated against it.
  22. justy

    A clinical trial of prednisone to empirically separate subgroups?

    co morbidities could affect the results of this. For example, some of m symptoms improve a lot on prednisolone eg the MCAS ones, however i also have a general worsening, i dont get the good up effect, i get very ill and feel awful and lose my appetite. Secondly a lot of us just dont tolerate...
  23. justy

    IVIG Treatment

    @Gingergrrl just to say how thrilled i am for you - following your story from the start and it is so inspiring how you have persevered. I feel frustrated that without access to the kind of Drs you have and a health care system where treatments can be accessed i will never know what is really...
  24. justy

    IVIG Treatment

    I couldnt agree more re mast cells and M.E/CFS I now have more severe MCAS all the time. I am almost a prisoner in my home because of it and can barely eat any foods. I continue to have minor constant reactions even with safe foods, tons of meds and a mask. i really had no idea what hell was...
  25. justy

    Please would you consider doing a kindness to one of our community who is in dire circumstances?

    Hi, im really sad to hear how the new hut turned out - i did donate pipes from our eco house build for underfloor heating so im VERY upset to hear they were not used. I once spoke to her on the phone and found her to be very generous with her time and very knowledgeable about M.E and...
  26. justy

    I definitely have PEM, does that mean I have ME/CFS

    Sounds like M.E to me. A lot of us also have SIBO, IBS gut dysbiosis etc. Some of us dont have significant pain.
  27. justy

    How many hours do you sleep?

    8-9 hours, 9 is optimum for me. I dont sleep in the day.
  28. justy

    The Big Vitamin D Mistake. 2017 Papadimitriou DT. J Prev Med Public Health.

    Unfortuantely vitamin D causes me to have severe joint pain and flu like feelings. I do have Cpn and have heard thats possible. I am deficient and need to try and add some more in again. I live in Wales - low levels of sunlight and i dont go out the house often at all.