• 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

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    Tell the FDA What You Think, Through Comments or Public Meeting

    Hmmmmm, I have a beef with the FDA as well as the CDC, not sure if my comments will be very cordial (im being nice about this). They have ignored us long enough!
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    First antiviral, AB or immunemodulator?

    Hey Heapsreal :) Talking about nursing homes........... my mother was in an assisted living facility 10 years ago and I have to confess.....it looked good hahahahahahahaha. I thought wow, I could use a place like this LOL. I used to chat on a CFS chat for years and we would talk about our...
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    Have you been turned off church and church life but not jesus?

    Jesus has kept me alive and made this illness tolerable. I wouldnt be alive if it wasn't for Jesus. I do most of my fellowshipping with other Christians on facebook. I am sort of an encourager. I also send books and Bibles to people :)
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    Interesting blog post regarding Norwegian ME/CFS developments. (Mella&Fluge research)

    Hi there Jacque, Nice to meet you :) I guess we are the wise veterans LOL, im not going to say wise old owls because im my mind im still a kid LOL. One of my friends through illness has been ill since she was 9 and I think she is 60 now. So there are a group of us out there. I think a...
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    ME/CFS is a mast cell disorder (hypothesis)

    How many symptoms on that list do you have to have to be considered having MCAS?
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    Any reason to see Klimas/Rey over Peterson?

    I actually do see an immunologist for IGG subclass insufficiency, I just may have to look into this!
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    Any reason to see Klimas/Rey over Peterson?

    My friend went to see that presentation by Dr. Byron Hyde. She said it will be on the internet soon. She said it was very good, she is a long term patient too. I look forward to seeing the presentation.
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    Interesting blog post regarding Norwegian ME/CFS developments. (Mella&Fluge research)

    Interesting, my CFIDS doctor said to me about a year ago that some patients with CFIDS actually have Lyme disease.
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    First antiviral, AB or immunemodulator?

    Hi Heapsreal :) I know, I sound very critical :) If anti virals work for you, thats great, as well as antibiotics. I had systemic candida very bad because of over usage of antibiotics, and it took 4 years to get rid of it. I had sensitivities so bad at the time from the thing, I couldnt...
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    Any reason to see Klimas/Rey over Peterson?

    Ive been in the ME/CFS doctor club since 1994. For personal reasons, I just recently scratched Peterson off of my referral list because he knew about Rituxan for years and never looked into it, is busy pushing Ampligen which still isnt approved, and is hooked on the anti virals which do...
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    First antiviral, AB or immunemodulator?

    Anti virals do not work, and if you have sensitivities, you may have reaction to them. AB's will give you a nice case of systemic Candida. In 1994 Dr. Susan Levine in New York prescribed what was then known as Kutapressin, which is an immune modulator. It wasnt a cure but made the illness more...
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    Would you take Rituximab

    Hi Sushi, Nice to meet you. I just learned about Dr. Kogelnik. Im thinking about it, its just that I would have to have a fundraiser to get me there, and to pay the man *grin*. ME/CFS financially depleted me years ago after having a $2000 a month medication for years before Medicare Part D...
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    Would you take Rituximab

    Hello, My name is Anne, this is my first time posting here :). I am 48 years old, I have had the illness for 47 years, didnt get diagnosed until I was 29, was disabled and unable to work when I was 31 (I was an active RN for almost 10 years), 95% bed and house bound since I was 33, divoced and...