• 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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Search results

  1. I

    Blood mycotoxin test? What lab?

    I've recently heard on a podcast about a lab that tests for mycotoxins in the blood but haven't come up with anything in my searches online. Anyone have any info?
  2. I

    Successful Targeted Treatment of Mast Cell Activation Syndrome with Tofacitinib.

    Very much so, which is terrible because i used to feel sssoooo much better from taking white willow and aspirin, and I even have a hard time with veggie's and getting proper nutrition now. I tolerate artemisinin quite well most of the time. I use biopure and I use to take, i think, nutricology...
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    Successful Targeted Treatment of Mast Cell Activation Syndrome with Tofacitinib.

    It helps. I'sm super sensitive to anything immune boosting at all, or get dramatically worse when i get sick, etc. Basically my mast cells are super sensitive to cytokines, so anything I take that has jak inhibiting properties makes a noticable difference in all my symptoms, especially how...
  4. I

    constipation

    It really depends on the individual. I tried most of those supplements and they actually made my problems worse. Turns out they were setting off my mast cells which were part of the problem to begin with. For me, getting rid of the sibo with bacteria/yeast eating probiotics takes enough of a...
  5. I

    constipation

    I'd like to add a few things here. First, good job addressing all the normal stuff that works for 90% of people (normal people i guess). Second, Myself, the several people that i've personally known to use it, and every doctor i've been to that recommends and personally uses it (probably 5 or...
  6. I

    constipation

    Prescript assist probiotics (when i tolerated probiotics) were what finally did it for me, and helped other gut problems/pain as well. Nothing else, even other probiotics, really did much to help.
  7. I

    Anyone have pos or neg effects from a magnesium supplement on mcs/mcas?

    I haven't tried a magnesium supplement in a few years. My doctor just recomended that I try it, but im a bit hesitant. I'm now one of those hypersensitive types (i have pretty severe mcas, REALLY bad in the gut) and it seems like, from my research on how certain minerals can activate trp's and...
  8. I

    Dr Conley Flint Michigan

    Fwiw, she prescribes me lorazepam and ambien for my mast cell (and anxiety) and sleep problems
  9. I

    Weird reactions to MCAS drugs

    I have mcas and have a similar type experience from certain things, initially do well on them, but then get dramatically worse. Anything that stimulates interferon is a major one. Vitamin D did it to me too. I cant handle quercetin, had the same experience with it. Luteolin, boswellia, and...
  10. I

    Dr Conley Flint Michigan

    Dr Diane Culik at ABC Wellness would be fine if thats all you were looking for. She's an integrative MD, very holistic, open minded, listens to what you have to say, and is cheaper than someone like Dr Conley. I dont know if or what insurance she accepts.
  11. I

    POLL: For post-vaccination ME/CFS patients: do your tests show active viral infections?

    I'll add to what i said above that a recent study has shown that sustained stat3 activation in human mast cells causes hypermethylation of socs3 promoter genes, thus downregulating socs3 which pretty much makes the whole mast cell hypersensitive and hyper reactive. They can only handle so much...
  12. I

    POLL: For post-vaccination ME/CFS patients: do your tests show active viral infections?

    I'll give that some credence. I'm in the camp that believes that theres a lot of, too much, mast cell activity driving the whole process, most likely along with some sort of autoimmune component in most (also quite possibly caused or driven by mast cell hyperactivity). Theres a lot of things...
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    POLL: For post-vaccination ME/CFS patients: do your tests show active viral infections?

    Mine was triggered like a light switch hours after a dpt shot and ive had elevated cmv titers consistently since then. Came down with lyme some years later which only made it all dramatically worse. Also turns out I have mcas and likely have had it to some degree my entire life. My mother said...
  14. I

    Successful Targeted Treatment of Mast Cell Activation Syndrome with Tofacitinib.

    Ive been using artemisinin for a little over a month, for its jak inhibiting/socs boosting properties, and its been very helpful so far.
  15. I

    Successful Targeted Treatment of Mast Cell Activation Syndrome with Tofacitinib.

    Ruxolitinib improves symptoms and quality of life in a patient with systemic mastocytosis. Yacoub A1, Prochaska L1. Author information Abstract BACKGROUND: Systemic mastocytosis is a clonal myeloproliferative neoplasm associated with constitutional symptoms from mast cell mediated chemical and...
  16. I

    Natural/herbal antibiotics that don't boost the immune system?

    Garlic is a pretty potent immune stimulant too. Blows me out of the water.
  17. I

    Help - MCS Rapidly Worsening

    You said you started it it a few days ago and have gotten worse in the last few days. ??? Gotta try something, thats a known big one. Also sounds like you could have yeast problem. Fyi, most doctors like to space out trialing new drugs/supplements in sensitive folks. If you start multiple...
  18. I

    Natural/herbal antibiotics that don't boost the immune system?

    Goldenseal contains berberine, which is a pretty potent th1 stimulant. Youre right, most do in one way or another, to some degree. Artemisinin and some of its derivatives are used as immune suppressants in a wide variety of diseases that regularly prescribed immune suppressants are used for...
  19. I

    Help - MCS Rapidly Worsening

    Normally i wouldnt blatantly say something like that regarding a medication or health issue, but i feel fully confident saying that
  20. I

    Help - MCS Rapidly Worsening

    Get off the cholestyramine. Its a huge interferon stimulant which has sent many people into mcs. Methylfolate also had the same effect on me.
  21. I

    Multiple Sensitivities - Underlying Cause?

    Even for those with typical degranulating type mcas problems, getting a positive test can be difficult. For the more inflammatory/less allergic type the only labs that might turn up positive are prostaglandins and leukotrienes as far as the official tests go. There are other indicators like...
  22. I

    Natural/herbal antibiotics that don't boost the immune system?

    Heck no to oregano oil and goldenseal. Artemisinin is broadly antimicrobial and very calming to the immune system. Medium chain fatty acids like caprylic acid and monolaurin are pretty benign as far as my immune system is concerned (which is HYPERsensitive), though i dont tolerate lauricidin...
  23. I

    Multiple Sensitivities - Underlying Cause?

    That was exactly how i used to be, until it got much worse and set off by everything. Atypical mcas. Not much by the way of degranulation/allergic type symptoms, most of the time anyways for alot of people actually. Other cell functions, specifically toll like receptors and igg receptors become...
  24. I

    Successful Targeted Treatment of Mast Cell Activation Syndrome with Tofacitinib.

    Another one from Afrin: Abstract Mast cell (MC) activation syndrome (MCAS) is a collection of illnesses of inappropriate MC activation with little to no neoplastic MC proliferation, distinguishing it from mastocytosis. MCAS presents as chronic, generally inflammatory multisystem polymorbidity...
  25. I

    LDN making my chronic Yeast problem worse

    If youre taking it orally, going topical can make a huge difference too. Any compounding pharmacy can put it in a cream. From my experience, 1 mg orally = 1 mg topically. For some its only helpful in that regard, others it entirely takes care of the problem. In most cases, I think it depends on...
  26. I

    LDN making my chronic Yeast problem worse

    It has a downregulating effect on the innate immune system. According to the immune restoration handbook (i believe its called) neutrophils play a significant role in keeping candida in check. Perhaps it would be worth putting some effort into finding and trying supplements/herbals that could...
  27. I

    Equilibrant and LDN

    I dont really know anything about equilibrant, just been on ldn before and put a little time into studying it. Tbh, the best answer is nobody knows for sure what the exact mechanisms that make ldn effective are. It affects different immune cells in different ways and its still being studied...
  28. I

    Equilibrant and LDN

    LDN upregulates th1, thus downregulating th2. Lupus is classically known as a th2 driven disorder.
  29. I

    Transdermal B12 oils

    I think theres a pretty good chance theres some answers and relief down that road for you . I wish you luck on your ghost chase and ill be sure to check in periodically. If you ever have any questions feel free to fire away.
  30. I

    Transdermal B12 oils

    Lol. The MRT test is supposed to be a good one if one wanted to explore in that direction and would rather drop a few bucks instead. It looks like the most thorough. Ive chatted with a couple more "normal" people that used it and had alot of success eliminating various symptoms and general...