• 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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  1. J

    Multiple Chemical Sensitivity (MCS) - How Bad

    Bump.
  2. J

    Why Are COVID-19 Long-Haulers Developing Fragrance Allergies?

    Interesting article. Speaks of mast cells, t cells, heightened sense of smell and more. Hopefully more research will be done to help those of us suffering with this. Also more public and medical awareness, and more fragrance-free places...
  3. J

    beta blockers, could they be the cause of mast cell issues?

    Thank you @Learner1. :hug: Sorry about the calcium blocker affect on you.
  4. J

    beta blockers, could they be the cause of mast cell issues?

    Curious how this is going for everyone. Beta blockers and mast cell. Any new info to share about it? Doc wants me to take yet concerned cause somewhere along the line years ago I read that beta blockers shouldn't be taken if one experiences angioedema. Also dealing with lots of reactions...
  5. J

    Quercetin - how long does it take for it to work?

    Thank you @Learner1. Too foggy and unwell to read it. Will ck it out someday.
  6. J

    Quercetin - how long does it take for it to work?

    Thank you everyone for your responses. I'm still unclear how many days or weeks does it take to build up in your system so you see the affect of it? How long does it take for it to work? Thank you if you have some idea.
  7. J

    Quercetin - how long does it take for it to work?

    Thank you. I was wondering if it works immediately (within an hour or so) or if you have to take it for days or weeks for it to wok?
  8. J

    Quercetin - how long does it take for it to work?

    Hi, Does it work within an hour or so like antihistamines do? Thank you.
  9. J

    Dr David Tuller: Only nine days left to raise 40% of his goal for funding - UPDATE 10/26 - 5 days left to raise 10%

    Shew. Looks like we might make it. Hope so. Very close now. Thank you all the donors and especially thank you David for all your hard and brilliant work! $62,974 98% Raised toward our $64,000 Goal 575 Donors 3 DAYS LEFT Project ends on October 31, at 11:59 PM PDT...
  10. J

    Dr David Tuller: Only nine days left to raise 40% of his goal for funding - UPDATE 10/26 - 5 days left to raise 10%

    Bump https://crowdfund.berkeley.edu/project/27513
  11. J

    Dr David Tuller: Only nine days left to raise 40% of his goal for funding - UPDATE 10/26 - 5 days left to raise 10%

    I know! I was very happy to see that. Hope we make the goal and then some. Forever grateful for David and all his excellent work! Thank you! And thank you everyone who donated and will. https://crowdfund.berkeley.edu/project/27513
  12. J

    Dr David Tuller: Please Support David's Crowdfunding: Update

    https://crowdfund.berkeley.edu/project/27513 Please support David's crowdfunding. $35,276 55% raised toward $64,000 goal 11 days left Thank you! And Thank you David!!!
  13. J

    No PEM after weeks on Valacyclovir

    Happy for you @Diwi9! :) That's wonderul you're able to do all this. :thumbsup: I find it encouraging even though my situation is so different. I hope your condition holds. Thank you for sharing and please if up to it keep us posted.
  14. J

    Someone Just Won Disability for ME at the ALJ hearing 2021

    Oh that's great that he won it! :) What a relief. It's no easy feat. Went that route. :( Denied at Federal Court. Had to restart process from square one again. Thankfully this time I was better informed to help my case and ended up with an ALJ that believed me. Yes, testing if you can...
  15. J

    CALL TO ARMS, FOLKS!.....well, cards, actually. One of our community is hospitalised and about to be subjected to harmful treatment against her will

    Thank you! :hug: Too foggy to think of a personal message right now. If you're ok with it, please write something for me. If not, please give me a few days or longer (getting vaccinated tomorrow not sure how it will go).
  16. J

    CALL TO ARMS, FOLKS!.....well, cards, actually. One of our community is hospitalised and about to be subjected to harmful treatment against her will

    Can someone send a card from me? Thank you if you can.
  17. J

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Thanks for this @Learner1. This may be covered in this thread or elsewhere and I'm just not remembering or read about it, are there treatments for these antibodies that can be tested for if one is positive?
  18. J

    Mast cell activation syndrome is not what it seems

    Ionizer I'm highly reactive too. :( Also which can't pull up now, read other reasons to avoid them.
  19. J

    SSDI application: phone calls

    Agree. For many reasons. Too exhausted to post why. It's a gamble when talking with them with odds stacked against you. Sounds like not good for your health or husband's to do so either.
  20. J

    CDC and FDA recommend US pause use of Johnson & Johnson's Covid-19 vaccine over blood clot concerns

    It's in Miralax. That's what I had a reaction to a few years ago. I realize this isn't same as a vaccine directly into your blood yet I was going to try a tiny bit orally (not on the skin), then call vaccine companies and figure out ratio of PEG in vaccine to Miralax. Still wasn't a good idea...
  21. J

    Anyone taking montelukast, and if so, what does it help with?

    My immunolgist recommended it to help with my chronic urticaria and I think for my angioedema. Still deciding whether to try it or not.
  22. J

    CDC and FDA recommend US pause use of Johnson & Johnson's Covid-19 vaccine over blood clot concerns

    I too was tempted to try a little PEG to see what kind of reaction I'd have now. I had a reaction in the past. My immunologist who specializes in mast cell told me not to get the vaccines with PEG in it even if it was a mild reaction that was had with PEG. I really wanted to get the Pfizer...
  23. J

    Medical Alert Device in case one falls, your recommendations and experience please

    Thanks Alvin. :) Good idea. Only problem is I don't have a cell phone except emergency one for my car which I don't ever have with me or charged (lots of good that does me). Don't have the ability (and other reasons) to manage having a cell phone on me in my room. Good idea though for...
  24. J

    Has anyone had a Covid vaccine yet?

    Hope you can get it Friday @TiredBill. Also good to know that you were approved for high risk group with ME/CFS. :thumbsup: I need to work on getting that approval. I'm in CA also. Sigh, need a provider, mine retired.
  25. J

    Medical Alert Device in case one falls, your recommendations and experience please

    Hi. Concerned about falling or passing out especially during my more dizzy periods. No one would know if I did and most likely my hard floor and crowded little room I'd hurt my head bad. Skip the very next paragraph if you like, it's very sad and it's scary. I've been concerned and more...
  26. J

    Movies and Documentaries about ME

    Ohhh I didn't like that movie. Felt it left the question there, that she may just be suffering from some kind of mental/life dissatifaction obstacle or mental condition. Wish the story was told without that.
  27. J

    Anyone Know of a Good PCP or NP in San Diego?

    Hiii!:) No luck yet. Yes let's share details off the board.
  28. J

    Anyone Know of a Good PCP or NP in San Diego?

    Hi @L.A. Awww this is the first message I've seen of yours on this thread. I was looking to see if there was a private message but I think cause you're new and have only posted a few times can't private message yet. (I think that's how it works.;)) Anyways, I was just laying in bed thinking...
  29. J

    Doctors who make house calls! ...in California, Atlanta, D.C., New York, Seattle, and more

    Ohhh thank you so much for this. I'll check it out. Been needing to check into finding such for awhile now. If I hear of other ones tooo I'll post it here.
  30. J

    Any good virtual support groups for chronic pain?

    Hi! Asking for a friend with chronic pain, fibro and more. Anyone know of any good virtual support groups for chronic pain? Thank you if you do and can share. :)