• 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.

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  1. Jasper80

    Bicarbonate (Baking Soda), H2O2, Borax, and Methylene Blue

    Hy, my expierence is, that it makes it worse. Also the Ammonium, that is produced by Candida or Sibo will be absorbed much more into the Body because of the alkaline Environment, which may be the reason for your Headache, heart palpitations and so on. May be. The Environment should be quite...
  2. Jasper80

    Adrenaline rush from MCAS?

    My Body instantlly reacts with Adrenal Ruches. It did all My life and unfortunately in the passt i thought it is something good, because i felt so clear in My Head and Full of Energy. I didn‘t know it was something bad. Now I do, behause My Adrenals are close to failure and i don‘t tolerate any...
  3. Jasper80

    Successful Targeted Treatment of Mast Cell Activation Syndrome with Tofacitinib.

    Hello Impossible, are you Salicylate sensitive? Do you know if artemisinin is ok for Salicylate Sensivity? Merci :)
  4. Jasper80

    Mcas and Gut healing (Candida/Sibo)

    Hello world, I wonder if anyone has any Idea how it may be possbile (even with weird Workarounds) to heal a severe Candida Infection/ fermentable Gut, while having MCAS? How Can it be possible to strengthen the immunsystem without Mastcellattacks? It´s like an impossible Thing to do. My Dr...
  5. Jasper80

    D-Lactic Acidosis in CFS

    Yes I´ve tried it, I killed some sibo, but I´ve feed the Candida because of the Sugars. I´m blessed with both. The scd diet then afterwards killed my adrenals. Thank you for your idea. It is! But my case is so complicated, that I´m just not able to do it bye my self. There are to many Things I...
  6. Jasper80

    Just wondering why MCAS is so common in certain conditions?

    Hy, I am a very Special case, but maybe it Can Help to understand how MCAS occures or why. I had a car accidend when I was 8 or 9. A very hard Crash (about 50 mph) in my left side. It seems that I have a sort of EDS because I´m hypermobile and never had any pain in my Spine. Unfortunately (I...
  7. Jasper80

    D-Lactic Acidosis in CFS

    Hey Avenger, thank you very much for your words. I´ll contact mrs Myhill. MCAS is the one Thing, that seems to Keep me off helping the others. It is dreadful. Thank you :) Unfortunately Dr.Myhill does not take new patients. Not much hope left though.
  8. Jasper80

    D-Lactic Acidosis in CFS

    I also have a d-Lactat producing Sibo and a Candida. Been on low /or better now carb made some Symptoms disapear and felt really good. Unfortunately after 3 Month (I was still working) my adrenals crashed. After that I became housbound and still am. Unfortuneately I also have MCAS. So I can´t...
  9. Jasper80

    Has anyone improved MCAS symptoms by treating underlying infections?

    unfortunately boswellia and curcumin are salycilates, which I don´t tolerate. As well as Quercentin. Vitamines is such a Thing as well. It´s quite hard to figure out hw much, which ones in which form. The one Can help the other may harm. I have infections, that suck my nutrients up as well. I...
  10. Jasper80

    Has anyone improved MCAS symptoms by treating underlying infections?

    He is a MCAS Doctor. One of the few in Germany. I will ask him again. Did the IVIG help with the infections? I do have some Infections too and I have no Idea how to treat them. I got everything tested multibal times. Candida is for sure and it produces lots of bad stuff. I tried the elemental...
  11. Jasper80

    Has anyone improved MCAS symptoms by treating underlying infections?

    Maybe he is. But how to figure out? I have no idea. I have one who tries. It´s really difficult, but we are just the half Way through. So... I´ll look into Gingergrrl´s Story. Thank you very very much :)
  12. Jasper80

    Has anyone improved MCAS symptoms by treating underlying infections?

    My Doc told me IVIG wouldn´t help me. Something against sibo for sure, but I believe it´s more complicated for severer cases. 7 years ago, when I wasen´t Aware of my mcas an run from doc to doc, I got Antibiotics and felt so good. So unbelivable normal. I cried. And after 2 Months it all got...
  13. Jasper80

    Has anyone improved MCAS symptoms by treating underlying infections?

    Copy that. It´s like you have all These severe health conditions (me/cfs, allergies, Viral infections, Adrenals, Gut, Sibo, Candida and so on) and then the one on Top, which makes a cure for any of the others and itself impossible. I searched so Long and tried so much and now i truly see. It´s...
  14. Jasper80

    Irreversible invertebrate Blockade and Mcas/mcad!

    Hello, Has anyone any treatment idea or has anyone made the same experience or heard of this: My spinal segment/segments in the chest area is blockading all the time for decades now. If I see my physic it takes only 3-4 hours until I feel my stomach pulling the segment towards my gut and...
  15. Jasper80

    How to live after giving up fighting?

    Hy kathyrn, Yes you are right. On top off it all I‘m a sensitive empathic person. I‘ve bought equal books here in Germany ;) and yes that makes it more difficult. It is a blessing and a burden at the same time. It‘s hard to find your way, when your‘re healthy and sensitive, but being ill for so...
  16. Jasper80

    How to live after giving up fighting?

    Hy, thank you very much for your reply. And for checking in;) Hard to say. I try to think as less as possible about it. It‘s quite with no goal ahead or no good practitioner. It‘s just swimming at the open see with sharks nearby. Honestly I‘m such a positive guy and tryed everything(maybe too...
  17. Jasper80

    How to live after giving up fighting?

    Hello, may I ask you something, because I have no one to talk about this hard topic and I would like to have some feedback or just some words for me to think about. My case is really tough and there is no help in sight at all. Like I wrote I‘m struggeling my whole life and so many mistakes...
  18. Jasper80

    Fatmalapsorbtion/salycilate and mitochondria?!

    hello. A Main Problem for me beside Mcas, sibo and the adrenals (which is all linked) is the following which makes me confus. Thank you for reading and helping. I have a lake of energy an huge mitochondria problems. The last ATP test was ok, which I don't really understand... I ate 3 month...
  19. Jasper80

    Special h2s sibo threatment?

    Thank you. I've already tried this, but somehow my system crashed after 7-8 days. I had bloodsugar issues (maybe because of the adrenals, which are very week). It helped at least, but I couldn't keep on going. There is to much going on my body. Maybe I can try it again someday.
  20. Jasper80

    Special h2s sibo threatment?

    hy, Is their any special threatment for the h2s Sibo version? Any suggested products? It is quite hard for me to tolerate the herbs. (Maybe because of the salycilates, the dye-off or the gut itself.). Should one keep on taking the products, even when it cramps and brings fartique or is that...
  21. Jasper80

    How to live after giving up fighting?

    I'm very greatful and touched about all your responses. Your words honestly helped me and calmed me down a bit. I'm very sorry for all who suffer so much and I know how exhausting it is to chase after every bit of health and normality. Day after day. But this little bit of hope will always be...
  22. Jasper80

    How to live after giving up fighting?

    Hey, It is really hard to talk to people about these elemental and hard topics. Friends and family are overwhelmed, practitioners try to calm you down and a Therapeut is asking questions. I'm 37 now and I'm fighting for 20 years now. I've never had a normal life. More stress and pain and...
  23. Jasper80

    Adrenal fatigue/MCAS/hydrocortisone intolerance

    Hy bspg, I've tried quercentin as far as I can remember. Unfortunately I don' t tolerate salycilates. And quercentin etc. are plant based. I' be read about NeuroProtek and even the low Phenol version is made with olive oil, which peaople woth salycilate intolerance can't take :( We are all...
  24. Jasper80

    Adrenal fatigue/MCAS/hydrocortisone intolerance

    I'm quite scared about nearly everything to take. There is no chance that I could tolerate hydrocortison anymore. Mcas and all that other stuff is just... pfff
  25. Jasper80

    Adrenal fatigue/MCAS/hydrocortisone intolerance

    @NotThisGuy Hey, Yes I ve tried a lot for methylation and had my success with it too. But honestly, without a proper guidance it seems impossible to be successful on the Longrun. Every vitamin i take or what ever I do with methylation is either to weak or to strong, or something is still...
  26. Jasper80

    Adrenal fatigue/MCAS/hydrocortisone intolerance

    Hello Gingergrrl, Thank you so much for sharing your story with me. Right now everything may be helpful. Unfortunately I don't have a Mcas doctor here in Germany and my attempt with Ketotifen didn't work out. I'm not sure if it is the liver itself or the mastcells, which for sure are influenced...
  27. Jasper80

    Adrenal fatigue/MCAS/hydrocortisone intolerance

    Hy, Unfortunately I didn't tolerate any stabilizer yet. I hope I'll find something in the future. Thank you very much
  28. Jasper80

    Adrenal fatigue/MCAS/hydrocortisone intolerance

    hello World, I'm a very Bad vicious Circle and have no ideal How to get out. Maybe some of you have any idea. I have a very Rough combination from MCAS, several Adrenal Fartigue and mitochondria dysfunction, which all together Ende up in CFS and MCS. Now I ve tried hydrocortison which gave...