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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. M

    Mercury chelation question

    I received my NutraEval test results, which indicated high mercury and copper. I have a mouth full of amalgams so no surprise here. My MD said that mercury contributes to gut dysbiosis, which is also a problem. He wants me to chelate mercury with DMSA and ALA. However, according to the Cutler...
  2. M

    ME/CFS is a mast cell disorder (hypothesis)

    @xchocoholic - hi, I was reading this post and wonder what "oi" stands for. I also have parasites and h. pylori and now have histamine issues and have just developed MCS. Lost a ton of weight, difficulty breathing, struggling. Did you heal your gut and eradicate the bugs? If so, did that help...
  3. M

    Vacinnes and mast cell activation

    @camas - Thanks for your reply. I tried taking Claritin a few wks ago (this was before my situation was as severe as it is now, and it seemed to give me head pressure due to the chemical sensitivity I just acquired, so I did not continue it. I've since started an herbal antihistamine, which I...
  4. M

    Vacinnes and mast cell activation

    Hello - I posted this in the methylation board but thought maybe it should've been here. Does anyone know of potential risks from vaccines for the A1298C mutation and it's affect on mast cells? I have been really struggling for the past few months, but I just figured out another piece of the...
  5. M

    Menstrual Cycle, Histamine and Progesterone.

    Ema, I have not read the entire article (too tired from lack of sleep), but this is interesting. If you remember me, I am all of a sudden dealing with a histamine issue, and the last nearly 2 months have been hell for me. Unable to eat, lost 10% of my body weight in a couple of wks. Multiple...
  6. M

    MTHFR and Vaccines

    Does anyone know of potential risks from vaccines for the A1298C mutation? If you know my story, I began treating for MTHFR (A1298C mutation) by a practitioner who doesn't understand the whole issue and haven't been the same since. I reached a point where I couldn't tolerate ANY food b/c it led...
  7. M

    Update and warning about methylation treatment

    @UM MAN - How long did you have the chemical sensitivites, and how were you able to figure out what you were low in to correct it? I met with a nutritionists this week that understands methylation, and we identified several deficienies (Vit D, magnesium, zinc, fats, copper, thyroid a little low...
  8. M

    Update and warning about methylation treatment

    It includes protein, carbs/grains, veggies, dairy, fats, very balanced if one can tolerate everything.
  9. M

    Update and warning about methylation treatment

    @Freddd - thanks again. Do you know how one should be tested for these issues? I'd really like to look into this because I just got salavia neurotranmitter test results and my histamine levels were normal, which is surprising. I wonder if they rose since I took the test. But that doesn't...
  10. M

    Update and warning about methylation treatment

    Actually, just checked other labs taken recently and they show potassium at 4.2 and 4.1, even lower. Interesting.
  11. M

    Update and warning about methylation treatment

    @Freddd , and for the folate deficiency, I show serum folate of >24 and ref range is >5.4 for normal, but I do have some of these symptoms. I assume its probably not this issue based on my lab, correct? Thanks so much. My potassium level shows 4.6, sodium is also on the low/normal range, but...
  12. M

    Update and warning about methylation treatment

    @fredd, thanks for the info. So how does one test/treat for hypokalemia? I do have sore leg muscles and body/muscles feel tight, arms sore. But I don't have all of the symptoms and yes, potassium tested normal. This is scary stuff that I want to check into. Is it possible to have symptoms show...
  13. M

    Update and warning about methylation treatment

    Thanks for sharing your story, Pam. Glad to hear you're doing better ;that's very encouraging. @Violeta - I was originally reacting to a few foods including meat, gluten free oats, to name a few, but then it became almost everything inlcuding salad and olive oil, chips. Now that I've started...
  14. M

    Update and warning about methylation treatment

    @Critterina - so when you were seeing your pulmologist that first year, did you not yet make the histamine connection? And are you suggesting that the histamine caused your difficulty breathing? It appears this is my case; however, limiting histamine foods per the elimination diet for the past...
  15. M

    Update and warning about methylation treatment

    I feel that I should put this warning out there for anyone looking to treat methylation. It has become an absolute nightmare for me and has put me at the worst healthwise I've ever been. I had a practicioner tell me to take methyl folate and b-12 based on homo a1298, but I was realtively...
  16. M

    Quercetin and SNPs

    Should one avoid Quercetin if they have any particular SNPs? Seems like I read to avoid this early on, but I can't remember where or why. Could've been something else; just not sure, but I'd like to try it to help manage histamine. Any input appreciated. Thank you.
  17. M

    Reaction to Claritin...thoughts please.

    I think I have high histamine, so I tried a small amount of Claritin yesterday, and I think it helped with the breathing symptoms and weird head feelings from what I think. However, I must also have a new chemical sensitivity b/c I've been reacting to everything over the past month or so...
  18. M

    How reliable are the Sulfate test strips

    I bought the test strips from amazon and they show my levels are quite high yet I've been on a low (almost no) sulfur diet for over several months. after about 2 months, I started adding it back in slowly it back in, then started having multiple chemical sensitivities so started no sulfur again...
  19. M

    Is this a good treatment option...input please.

    Sushi - Yes, I've been posting on other boards, but last Fri. was posting here about what seems to be high histamine. My nutritionist assumes so b/c I'm all of a sudden having sensitivity to multiple foods and chemicals (nearly everything). It's progressively worsened over the past month where...
  20. M

    Is this a good treatment option...input please.

    Hello, I began drinking nettle leaf tea and taking mg and ca last Friday as well as the foot bath with these and vit c. They seemed to help with my difficulty breathing. But then today, I had the head pressure again and am just not sure what's helping/hurting. I read that nettle contains...
  21. M

    Managing histamine

    Thanks for all the great info. I know I posted this on the methylation board, but this is so overwhelming b/c it has happened as a result of taking methyl supplements as recommended by a dr. who doesn't understand the full scope, treated for MTHFR a1298 only. I reacted negatively, I've now...
  22. M

    Managing histamine

    No, they are no help. I've been to my local urgent care once, Mayo Clinic ER this past weekend and the local dr today - each time stating I can't breathe. No one can figure out why. I have another appt at Mayo next week, but it's going to be a long wknd since the breathing difficulty is...
  23. M

    Managing histamine

    I actually ordered the DAOSIN by Swanson today at the recommendation of my practicioner (he focuses on MTHFR, not allergies). I wasn't able to speak to him though and things have worsened since the 3 days ago I talked to him. Scary :(
  24. M

    Managing histamine

    Ema Ok, so are you suggesting that I start with say Zantac rather than Zyrtec or benadaryl? I'm trying to read up on this and learn more, but if I start this right away I suppose there's a chance for reaction? Also - any idea why this problem has gradually worsened over the past month (it...
  25. M

    Managing histamine

    Ema - hi, one more quesiton, i noticed you suggested an h2-antihistamine. I looked that up and it's things like zantac among others for heartburn, or so I thought. What about allegra, zyrtec or even benadrayl? The known antihistamines? Thanks so much.
  26. M

    Managing histamine

    Ema - thanks again. I am miserable and very scared. my last labs did show low potassium. do you know what type of dr. will do this ACTH stimulation test? I'm not getting anywhere with local drs. The one I visited this morning doesn't even have a blood histamine test. PS - i've lost about 10...
  27. M

    Managing histamine

    Ema - thanks for the feedback. my dr. suspects adrenal problems as well and we're going to have that tested. in the meantime, what can i do? i'm down to 103 pounds and i'm 5'6". I"m really freaking out and no one local can help me. I talked to my MTHFR consultant on Monday, and he just said...
  28. M

    Managing histamine

    My symptoms seem to line up with high histamine. Assuming that my worsening difficulty breathing and reactions to food and chemicals is due to high histamine, I have a couple of questions: -what types of labs test for this? -has anyone tried benadryl and does it help? I'm trying nettle tea...
  29. M

    Finally found a practitioner...update

    Hi - I'd just say to be careful with low sulfur and make sure you don't go to NO sulfur. That's essentially what I did, went too far wih it and got negative effects. I also had the parasite - taxonomy unknown on the metametrix stool test. My practicioners think it was the "fry bug" (can't...
  30. M

    Finally found a practitioner...update

    Interesting, so you added calcium and vit c to help heal the gut? I like the idea of the foot bath since I'm not tolerating anything right now. My potassium is actually on the low end. Thanks!