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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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  1. D

    Have You Had a Pneumonia Vaccine?

    Did you ever get Prevnar? How did you do with it?
  2. D

    uncontrollable sleepiness after eating

    I've been dealing with something similar lately. On a whim I decided to try enzymes - I seem to be doing much better! It's a pretty easy thing to try even if you are skeptial. Couldn't hurt, at least.
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    Survey sent to me from Dr. Komaroff

    It's my impression that he is simply a researcher. Which means zilch when it comes to clinical help.
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    Tamiflu for flu?

    I've taken it. It caused major nausea and some depression for me. Still had the flu and it took me a long time to get over. Don't know that I'd use it again.
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    Low IgG and IVIG Troubles.

    I, too, have been diagnosed wiht CVID and do Privigen. We are supposed to be switching to Hizentra soon as my dr. swears people do better on it, but I'm nervous about it! One thing that might have helped w/ the iv for you is if they slowed down the infusion. I could never do it in 3 hours. I do...
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    What does overmethylation feel like?

    I recently started Amy Yasko's new daily vitamin and although she contends it should not provide enough to jump start methylation I haven't been feeling well. I have other things going on so it's not definitely the vitamins but I was just curious in general what it feels like when you start...
  7. D

    Found Mold in Bedroom.. Been Sick SInce Moving to House. Advise Needed

    I'm in the middle of serious mold issues and I will say MOVE! You are right, don't test because then you have to disclose when you sell. Just put it on the market as is and find a better place. And do a thorough testing & inspection of the new place.
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    Hereditary neuropathy with liability to pressure palsies

    @Boule de feu any update on this? I'm wondering about hnpp for myself and am sort of freaked out.
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    Common rarity in 7 out of 7 ME/CFS patients based on 23andMe results

    I'm CC.
  10. D

    Doxycycline

    What do you mean by sick?
  11. D

    major leg cramps after epsom salt bath

    I just took my second ever epsom salt bath. 1 cup for 10 minutes. I was nervous because I wasn't sure how I'd react since I don't do well with msm. I thought I did pretty well after the first one but had minor cramping in my thighs mainly. Took another one today and my legs are really hurting...
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    Surgery and ME/CFS

    I did ask for a lesser amount but I'm sure they titrated to what they felt was appropriate based on my response. Pretty sure it was iv. I had a colonoscopy before w versed & other things and did not do great with those drugs so I was pleasantly surprised with the propofol. That said, we all...
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    Surgery and ME/CFS

    I had propofol for an upper endoscopy. LOVED it. And I HATE drugs particularly sedatives because I am so sensitive. So I was nervous about the propofol but I did fine with it. What was really great is how quickly it wears off. So I really wasnt groggy even 15 min after administration when the...
  14. D

    Is there any reason NOT to take curcumin?

    I feel like I read on one thread here a while ago of some contraindication or some reason why one would not want to take curcumin. Would it have to do with SNPs or methylation? Or is it something you just need to try and see how you do?
  15. D

    Can florinef cause emotional swings? depression, anxiety.. im in hell at times

    I stopped taking florinef because of mood changes.
  16. D

    Deborah Waroff interviews Dr. Dan Peterson: ME/CFS Alert, Episode 48

    I'm guessing he means something like kineret - an il-1 blocker. But that's totally speculation on my part.
  17. D

    ermi testing - is one lab better than another?

    Anybody??
  18. D

    ermi testing - is one lab better than another?

    Anybody have any info on labs for ermi testing? Esml seems cheapest. But I wasn't sure if there were reputations I was unaware of.
  19. D

    Stachy Found - do I have to throw out everything?

    slayadragon Could you direct me to the peer reviewed literature you are referring to? I'd like to have it so that I can discuss w my dr. Thanks!
  20. D

    Stachy Found - do I have to throw out everything?

    slayadragon thanks for the clarification. Do you personally know people who have tried spraying something to kill the mold yhsts there and ended up sicker? Or is that hypothetical?
  21. D

    Stachy Found - do I have to throw out everything?

    Could you clarify the above? I'm just confused because you say that it (what?) Is not recommended for mold remidiation but then you said mold remediation is needed. Do you mean not to spray something that would denature the mold? Also if removal is the only answer how do you suggest to clean...
  22. D

    Stachy Found - do I have to throw out everything?

    Thanks Ema. We probably will replace mattresses just to be safe. But that's the thing...it's not like there is mold growing on anything. I'm just worried about spores and taking them with us and will I have issues wherever we go then? I hate this!
  23. D

    Stachy Found - do I have to throw out everything?

    Sushi I have no idea! I am not familiar with chlotine dioxide.
  24. D

    Stachy Found - do I have to throw out everything?

    I'm guessing some answers will be YES! But I'm not sure that it will be necessary...trying to figure this out. Had air samples taken and found low levels of Stachy in house. We are moving. I plan on throwing out the couches since those are hard to clean but what about other belongings? Artwork...
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    Air purifiers

    sianrecovery What do you mean by air purifiers working against you if you have a mold issue. Could you elaborate?
  26. D

    how accurate are VCS tests?

    Yes it's the visual contrast test. Not sure about blood tests but shoemakers site talks about some markers he follows I think.
  27. D

    how accurate are VCS tests?

    Just wondering how accurate the vcs test is. If I keep passing it no problem does thag mean biotoxins are not an issu?
  28. D

    anyone used bactroban nasal spray?

    I'm just repeating what I've been told on numerous occasions by my ENT's office. It's not in some po-dunk town either. Sure they could be wrong, but I'm sure they are basing this on some data.
  29. D

    Excitotoxicty from diet - or too much glutamate?

    Mostly vegan. I've already been gluten free/dairy free for years. I have no problem adding small amounts of animal protein in per week but there's no easy answer on this. You have a point and yet there are others who believe that animal protein should be avoided for various reasons, one of which...
  30. D

    Excitotoxicty from diet - or too much glutamate?

    I am CBS699T +/- BHMT02 +/- BHMT 04 +/- What would I do to address the sulfur problem? And what would backing off the b12 do? Slow down any methylation that might be starting up? I was under the impression that people (Like Fredddd) take way more than that on a daily basis. Star-Anise what...