• 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. S

    Anyone tried Limbic Retraining: Dynamic Neural Retraining System?

    NAET is pseudoscience and I would highly doubt any report unless coming from a person you personally know. I know several people who tried it. And the problem with DNRS is similar: I cannot find any report that is not fromt he company that is really convincing. Some report state that after two...
  2. S

    Anyone tried Limbic Retraining: Dynamic Neural Retraining System?

    Can this program reverse food intolerances that imply anaphylaxis as it occurs in mast cell activation syndrome? Please only respond if you experienced that or know someone who could reverse these kind of reactions.
  3. S

    Successful Targeted Treatment of Mast Cell Activation Syndrome with Tofacitinib.

    @impossible How did it go for you with jak inhibition so far?
  4. S

    Stem Cell Therapy

    @perchance dreamer , did you also use stem treatments to treat CFS/ME or any other condition?
  5. S

    Stem Cell Therapy

    @Jonathan Edwards I am totally objective. I am interested in that topic. I find that you exaggerate in a negative way as you say that what stem cell clinics offer makes no sense. It does make sense since there are various animal models and in vitro studies at first that showed various immune...
  6. S

    Who else has had stem cell therapy?

    @AlwaysTired , @gdbennett Hi guys, I hope you are doing well and that the treatment maybe helped in the end (in case you tried it @ErdemX ) I also consider mesenchymal stem cells for a mast cell activation disorder. The aim would not be to cure it (would of course be welcome but that is...
  7. S

    should i pay $90,000 for stem cells?

    Not sure where exactly you were talking about but if there is anything that might help in autoimmune disease and potentially ME, then this is mesenchymal stem cells and potentially other umbilical cord blood derived ones but the latter may be dangerous since they are different DNA. However...
  8. S

    Cost of IVIG

    My ANA is mostly between 1:200 (mildest positive here is 1:160) and the highest was 1:1000. The latter was outside a flare and I did only one measurement in a flare where I reacted to a food. I have Alopecia Areata and Vitiligo. I have always high Creatininine (1.6) but my rentals work fine...
  9. S

    How to Make Magnesium Enemas w/ Epsom Salt

    Hi all, did some people really do this enema and noticed benefits. It seems clear that this practice can be pretty dangerous (https://www.sciencedirect.com/science/article/pii/S2211558715000746). On the other hand it clearly demonstrates the high bioavailability. Do you know if this also works...
  10. S

    Cost of IVIG

    Hi @Gingergrrl , yes it totally relates to my experience. In 2015 I had almost a constant state in between normal and anaphylactic after I was on a ketogenic diet for 4 months. I lost tolerance to all foods. If I eat something I do not tolerate, I get sore throat, cough, sinus congestion, joint...
  11. S

    Cost of IVIG

    thanks for the repsonse @Gingergrrl . Can you maybe let me know who is your doctor? I would maybe approach him. I try to find a doctor who is familiar with MCAS and the use of IVIG. Of course you can send me his name also via PM in case this is private. How would you say has your quality of...
  12. S

    Cost of IVIG

    UNfortunately, curcumin has been one of my worst triggers for mcas. I read from one person here who improved miraculous her food intolerances. But further I find also the opposite for other patients, e.g. on facebook. Do you habe any insight in statistics for how many patients with MCAS improve...
  13. S

    Cost of IVIG

    @Learner1 Thanks very much for your report. May I ask for what exactly you try to treat with the ivig. It is obvious but also not obvious. Did they figure u have low IGG and u take a dose like 400mg/kg or do they try to treat your MCAS and you take 1-2g/kg? I have no idea about your story of...
  14. S

    enteragam for gut issues

    Did you have IBS-C or IBS-D?
  15. S

    Cost of IVIG

    Thanks Justy. Do you know statistics how risky this is for a person with MCAS. I saw the report from gingergrrl and of course I was hopeful but now I found several people with MCAS where it did nothing and some even got worse. Overall I found about 20 who tried it...What is your impression and...
  16. S

    Cost of IVIG

    @justy Please would you PM me where in Europe I can buy it. Can I also buy it in high doses in there? I think I have a doctor who would prescribe it to me....
  17. S

    Pulsing Lactoferrin?

    Damn...Now that I read this, I regret that I started taking Lactoferrin. I am worried that I dysregulate my body with it. Maybe the body shuts down own production when it is taken and therefore when stopping people experience the rebound... I am on day 2 and for me it causes brainfog and sinus...
  18. S

    Lauricidin

    @ScottTriGuy Any further improvements?
  19. S

    Question about seeing Dr De MeirLeir: Reno or Brussels?

    WHat are the experiences with the treatments of KDM generally? I do not find reports on the internet...
  20. S

    Are infections really a cause?

    delete
  21. S

    My first appointment with KDM

    Hey, how are you today @Drass ? I obviously also had a positive screening for Tularemia and now the IGG test will be done. The IGG test was negative for you. Does that mean, that you had Tularemia in the past but the body was able to fight the bacteria off? Or does it mean that you were in...
  22. S

    case report about lowering high homocysteine (C677T and A1298C +/-)

    Not sure if you read the whole report but that is what I was saying. And even more: It is not even necessary for people who cannot eat vegetables at all. At least not to lower homocysteine. Of course certain vegetables have many other positive impacts on health that people would not want to...
  23. S

    case report about lowering high homocysteine (C677T and A1298C +/-)

    Hello, I just wanted report my case here for everybody who is interested in lowering homocysteine. See my genetics in the signature. I am compound heterozygous. Januar 2015 my homocysteine was measured 13.2. November 2015 my homocysteine was measured 50. At the same time folate levels was low...
  24. S

    How good can the body use blood levels?

    I found a study where they found exactly what you are saying CFS for 19 year. However they first saturated people with folic acid by giving them orally 5mg daily until blood levels did not rise anymore than that. Then they injected 5mg and found a huge increase in blood levels which were back...
  25. S

    How good can the body use blood levels?

    The problem is: When you ingest folic acid, it is converted to the forms usable for the body in the liver but this works with only up to 1mg or less. The rest will remain unchanged in the blood serum as folic acid. The question is, can the body pick up the leftover folic acid efficiently the...
  26. S

    How good can the body use blood levels?

    Hello Snowdrop, I read the text below dosage. Unfortunately they don't give any answer on that. I also doubt that the information stated there as it has been shown that plasma levels of folic acid increase with intake of high doses of folic acid. Injection of 20mg folic acid is even a strategy...
  27. S

    How good can the body use blood levels?

    Hello, I have a specific question and you would help me if you focus just on the question without asking why I ask this of if I tried other ways etc and that I should use active folate etc...Please just focus on this question. That would help me a lot. Thank you! The purpose is to lower...
  28. S

    Lowering Homocysteine using Hydroxocobalamin instead of Methylcobalamin

    @PeterPositive: just to give you an update: I don't know why, but I had a mast cell reaction to the methyB12. It very very likely was not because of anything the B12 did (so not because methylation was pushed to hard), but a reaction of my mast cells themselves. It took up to 2 weeks until I...
  29. S

    Has anybody tried Hydrocortisone therapy?

    After reading the book from Jeffries I was quite confident that I wont harm myself if I try out taking 5mg in the morning and 2x2.5mg later during the day but now I feel like this could be dangerous as many report lasting problems after trials. I thought if it causes trouble then leaving it out...
  30. S

    Lowering Homocysteine using Hydroxocobalamin instead of Methylcobalamin

    UNfortunately the reaction is still not completely gone. It is very similar to my adverse reaction to creatine and NAC, Glutamine etc... So I am pretty pessimistic that I can tolerate the methylcobalamine because of a direct mast cell response to it. Dont ask me why that is, but I experienced...