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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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Search results

  1. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    my experience with Filgo: - my condition was moderate to severe - 10x improvement (my subjective feeling of course, but I am a completely different person, totally life-changing, see my earlier posts for more detailed descriptions) - took filgo 12 months. Did not feel anything for the first 6...
  2. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    Cheers, Vlad! Please see my posts here for the answers to all your questions: https://forums.phoenixrising.me/members/sam-d.32724/#recent-content
  3. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    @junkcrap50 @Vlad83 yep, progress remain very stable and keeps improving. Took a long time of withdrawal from Telfast though. I read it was about histamine receptors having to grow back. Took about 4/5 months! Now I've completely stopped the whole KDM treatment and feel a bunch better than...
  4. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    Yes I believe I can get to 100% on my own. I'm now actively weaning off all my meds as detailed above. I aim to be completely medicine free hopefully this year, else next year. The only consequences left now are neurological. This is well documented and it's the reason why suddenly I'm able to...
  5. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    I'd say each step was a 10x improvement So I went from completely bedridden in 2017, say 0.1% of my old self (nearly dead) to 1% of my old self. Then with filgo I went from 1% to 10%. Now I can easily do another 10x to be back to 100% my old self. With 100% being equal to top competitive...
  6. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    yes he did order a bunch of test as he does during every consult but I almost never take them to save costs. I wanted to save as much money as possible for the treatment itself. Plus you very quickly get a feel for how good or bad you are doing. If you would really feel a lot worse then just...
  7. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    For the science it's better to ask KDM for the full picture. I haven't done scientific research on it. I just know that it's an extremely powerful anti-inflammatory that targets JAK receptors. The side effects were mostly confined to sometimes a burning feeling in the lower belly and urine...
  8. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    Hey it took about 6 months to see noticeable effects. Then after one year I reached my peak and now I feel better when weaning off. I was on 1 tablet per day for a year, now I'm already down to 1 tablet per 72 hours and planning on going to 1 per 4 days soon and hopefully I can completely stop...
  9. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    It's been lifechanging for me to be on an upward trajectory after 35+ years on a downward spiral. Huge emotional lift. - Yes KDM prescribed it - He said it would take a long time, years to heal, not days - I'm in Europe yes - It costs me net about $950 USD per month for 30 tablets
  10. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    Taking it for ME/CFS (see my historical posts). It's definitely helping, albeit super slowly. My rate of progress is about the same as the rate of my decline as far as I can tell. And I've been on a slow decline since 1987. Biggest improvement so far are: - my inflammatory episodes are...
  11. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    I have been on filgo since February 1st, 2022 12+ months and running AMA
  12. sam.d

    Help finding a vitamin c source I can tolerate

    I take Solgar Ester-C Plus, it's the only kind I can tolerate. It's a non-acidic form.
  13. sam.d

    has anyone needed a colostomy bag?

    I'm sorry to hear this and wasn't aware of the fact that there's so many that don't tolerate it. I hope there's others on this forum who can speak on these severe structural issues you have. This is clearly beyond my knowledge.
  14. sam.d

    has anyone needed a colostomy bag?

    That's unfortunate to hear. But you should definitely be able to tolerate Macrogol. It's a completely inert substance that just retains water in your colon by osmosis without touching the walls of your colon (which all other laxatives do). Just make sure to take enough bags (could be 8+ daily)...
  15. sam.d

    has anyone needed a colostomy bag?

    I use Macrogol, 3 bags a day. Ask your pharmacist for the trade name (macrogol is the generic name). Without it I would have to go to the hospital within a couple of days because of total impaction. I've used macrogol, 3 bags a day, without any ill effects for 5 years now. Totally passive. That...
  16. sam.d

    has anyone needed a colostomy bag?

    I suffer from extreme constipation too. What is this "last medication" you are on?
  17. sam.d

    Mutaflor - linked to colon cancer [2020]

    If I stop taking it, everything gets worse in a hurry. It's a cornerstone of my treatment.
  18. sam.d

    Mutaflor - linked to colon cancer [2020]

    I've been taking Mutaflor everyday for about 4 years now. Awesome.
  19. sam.d

    Severe gut problems - No answers

    I had all this. This is the treatment I've been on to help: https://forums.phoenixrising.me/threads/treatment-with-kdm-miraculous-so-far-need-help-with-dysbiosis-though.62722/#post-1021912
  20. sam.d

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    Hey Aubry, has this patient tried filgo yet?
  21. sam.d

    Vitamin D and Viruses that can trigger Me/CFS

    Excuse my brain fog. So what does this say? Is vitamin D supplementation good or bad for ME/CFS?
  22. sam.d

    Post Lyme Treatment with KDM

    @Jenc just to chip in: I'm hearing many people who've been prescribed DSF by KDM in the past weeks
  23. sam.d

    Post Lyme Treatment with KDM

    @MartinK I'll PM you
  24. sam.d

    Post Lyme Treatment with KDM

    @JES @Aubry yep. KDM will probably prescribe it to me at my next appointment but I'm saying 100% hard NO. I'm believe more in bee venom therapy. I've seen people fully healed from it. Not just "remission". Full eradication of Borrelia and all its forms.
  25. sam.d

    Post Lyme Treatment with KDM

    @MartinK nope, purely anecdotal. What I've heard from a lot of people in the Lyme community.
  26. sam.d

    Post Lyme Treatment with KDM

    @Aubry Cowden made me herx big time. Never took antibiotics. Certainly will not try disulfiram, heard many bad things about permanent brain damage and psychosis etc.
  27. sam.d

    Post Lyme Treatment with KDM

    @Aubry I'm preparing vor Bee Venom Therapy now: https://www.vice.com/en_us/article/vb9mwa/i-sting-myself-with-bees-every-morning
  28. sam.d

    Post Lyme Treatment with KDM

    @yabeeb yep, written about it here: https://forums.phoenixrising.me/threads/treatment-with-kdm-miraculous-so-far-need-help-with-dysbiosis-though.62722/
  29. sam.d

    Treatment with KDM miraculous so far, need help with dysbiosis though

    @Thinktank someone else emailed Galapagos and they replied august 2020 for launch.
  30. sam.d

    Treatment with KDM miraculous so far, need help with dysbiosis though

    @Thinktank please let us know the answer :)