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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. K

    FOXP3 SNP”s (Low TREG Cell-Mast Cell Activation).

    Hi there, im not sure about the “83” didnt could find this with my results of from my daugther. (same health problems). but the “65” homozygous is often with Autism. And Autism and CFS are often linked to each other (also because of MTHFR genes). my daughter had autism and homozygous “65”...
  2. K

    EBV test positive for ME

    **Also Tregs are made from high fat. That’s why often keto-diet does help. I did get Intralipid infusion with high dose EPA (OMEGA). And in 3 days they where much higher. Oxidative stress lowers TREG CELLS
  3. K

    EBV test positive for ME

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3621134/ I guess this is the answer to all. Less Regulatory T cells / bad functioning TREG cells. They suppress auto-immunity. They suppress response after infections (EBV,LYME, but also after vaccinations) - I guess the problem that people get sick...
  4. K

    Regulatory T Cells (auto-immunity) FOXP3- Mast Cell Activation

    Thanks for sharing! For now we only have the RS3761549 in common. I guess it’s also the combination with methylation. because METHYLATION defects blocks the liver and blocks metabolism. Wich lowers zinc uptake what is also needed for making proper TREG Cell. Do you have Methylation issues ...
  5. K

    FOXP3 SNP”s (Low TREG Cell-Mast Cell Activation).

    Hi There, a couple of years ago I went to a good immunologist and they find I have low Regulatory T cells. I have many auto immune issues, and my only brother has Diabetes type-1. so auto immunity is driving our family. I did find out I have mutated FOXP3 genes. (And very worse methylation...
  6. K

    Regulatory T Cells (auto-immunity) FOXP3- Mast Cell Activation

    You are exactly my husband! ;) My husband has (undiagnosed Autism). His sister had Asperger (very bad, -diagnosed and medication). And our daugther has Autism. There are many medical reviews to find. RS 3761548 - is often found with MS, and more aggressive auto immune diseases. (TT allele)...
  7. K

    Top immunologist in Germany, Uk or Europ

    Dr Pfeiffer Düsseldorf. He is the best! People from whole the world come to visit him. min from the Netherlands and also visit him! He did know why I didnt get pregnant. And test whole my immune panel. He found out why I have CFS/ME. (Low Regulatory T Cells). Wich gave me allergies, Mast Cell...
  8. K

    Regulatory T Cells (auto-immunity) FOXP3- Mast Cell Activation

    Hi There, a couple of years ago I went to a good immunologist and they find I have low Regulatory T cells. I have many auto immune issues, and my only brother has Diabetes type-1. so auto immunity is driving our family. I did find out I have mutated FOXP3 genes. (And very worse methylation...
  9. K

    Copper - Your Hair Mineral Test

    Aquariusgirl thank you for youre response! Do you know youre methylation genes? Most people with methylation problems and adrenal burnout have those issues! And because of low zinc we got infections, sugar problems, thyroid problems ( pyroluria) etcetera. Also convulsions, muscle twitching...
  10. K

    Copper - Your Hair Mineral Test

    This is such a interesting conversation. I have to low ceruloplasmin. Between 20-60 is normal and my ceruloplasmin is 18. I did years very wel on zinc, and b6 but now anymore. My histamin intolerance is getting worse and worse because low intracellulair copper. My bio unavailible copper is to...
  11. K

    B vitamins "honeymoon" over...

    Peter are you from the netherlands as well? Did you test youre pyrroles at KEAC in the Netherlands? And why taking copper? If you have pyrrol disorder you are copper toxic. Better avoid copper and copper rich foods just like people with wilson disease. Im also always low in BOUND copper my...
  12. K

    B vitamins "honeymoon" over...

    Yes the same here... I have to take more and more to feel something! Its i guess because low stomach acid! I dont absorp anything anymore! Everytime i have to increase the dose to find a couple of weeks relieve but at this point my stomach is just as acid as water i guess and dont absorp thing...
  13. K

    Kuvan/BH4/biopterin

    Hi Teancum, For me not so great result. My doctor who gave me the RX did already told me that! In the past he gave his patients also biopterin bit also with bad results. There was one guy whi become from depression mania.. But did feel fine on it... But most no effect. But he would let me try...
  14. K

    Liverbiopt

    hi guys, I was very curiouse if some CFS/ME patient has ever got a liver biopt? I guess im copper toxic sort of Wilson disease i think. I was curiouse if someone ever had a liver biopt where they checked copper and other things in the Liver? I never heard of it before in CFS. But the miljon...
  15. K

    BH4 and the Genetics of ME/CFS

    Hi Justin, Yes i have! If you have intereting you can send me a PM! :) I couldnt take it because of to many side effects :(
  16. K

    Candida & Biofilms - Theory & Protocol

    Hi gondwanaland, You have to read the links above :) You need high zinc to absorp use copper. In the first short term copper seems to help but later on its isnt ;) Most people have low copper but high ceruoplasmin. Thants the biggest problem :(
  17. K

    Candida & Biofilms - Theory & Protocol

    Hmm i think my research is almost compleet when i read youre post about xenooestrogen! I did read about the biofilm! I think i found youre website or the site where you did get youre information from. You talk in this post about xenooestrogen. I had my own theorie about ME/CFS. In very...
  18. K

    Intracellular magnesium defiency and vitamin B6 (and/or B2) deficiency in ME/CFS

    I was surching on the internet and found this post. They say people with Celiac have low Akline Phosphatase. This is the reson they cant do anything with normal B6. P5P would be better only leople with Celiac cant absorp P5P well in the gut. So the anwse would be ( heal the gut). And inject...
  19. K

    potassium bicarbonate / ph balance

    So how about potassium? only thing I read is in Freddd his protocol. I want to higher my PH in body especially in gut. hopefully absorp nutrients better that way. I read about sodium bircarbonate (baking soda) but also potassium bircarbonate. I now we need potassium. my level was 4,1 last time...
  20. K

    BH4 and the Genetics of ME/CFS

    *** offtopic if someone will try BH4/Kuvan, i have it for sale. It did nothing for me ... (Its a shame). But i have to pay my own risk at insurance! I have used 6 tablets of it. The rest i have it at home so if someone is looking for buying it... You can contact me :)
  21. K

    CBS A360A & alpha lipoic acid supplements

    Its a shame that nobody response! Ive got also a360 and want to try ALA as well! :) Do you still take it? :)
  22. K

    23andMe results- let the journey begin!

    Ive got almost the same mutations as u @goonie8473 and u @Methyl Health... Look at my signature. Also a1298c and CBS homozygous!
  23. K

    sulfur/thiol sensivity (high cystien?) CBS mutation

    Hi you guys! Thanks for the answering! Im busy right now so i will answer to hou guys later! But i appriciat youre input! :) thanks :) About coffee , i cant handle coffee ( anxity to the roof!) and now i am sulfer / thiol sensitive i think i also react to coffee. Dont know of they also have...
  24. K

    sulfur/thiol sensivity (high cystien?) CBS mutation

    also here is a person who already do this protocoll and he can eat thiols now... http://onibasu.com/archives/fdc/123807.html
  25. K

    sulfur/thiol sensivity (high cystien?) CBS mutation

    I reed that we need glutathion to lose our metal toxity. We with ME/CFS are lacking in produce gluthation right? So that would be the reason that healthy people not being sick of high metals. I find that people who react to thiols (sulfer) its because of the metal toxity. I also react very...
  26. K

    New, Inexpensive CBS Ammonia Fix

    Yes youre right BUTthere i a connection! When i use high dose B6, i got much neuropathy BUT ONLY when i eat thiols ( sulfur). When i follow strickt the sulfur/thiol free dieet then i can take high dose B6 without neuropathy. So there i a connection! The B6 speed up my already high(er) CBS...
  27. K

    New, Inexpensive CBS Ammonia Fix

    Sorry much spelling faults ( iphone) sorry!
  28. K

    New, Inexpensive CBS Ammonia Fix

    Thanks @Valentijn for youre inpute i really appriciate it. I also think B6 is most important! Its so ( toevallig , dont know the word in Englisch) dat diabetes , alzheimer, parkinson ar al low in B6. Also in our country i reed at MSweb.nl and site where people have for example thyroid problems...
  29. K

    New, Inexpensive CBS Ammonia Fix

    Yes i also think its very intresting! Only problem i get very worse neuropathy while using B6 ( P5P) Only use 60mg , but when i dont take it i got soooo worse depression and diarrhea and parkinson - symptoms i think because low BH4 low dopamin low serotonin nothing works! And B6 makes from...
  30. K

    High Glutamate

    Thats true! Before i order it i will look for some revieuws and start slow thanks @Rand56