• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    Cortene Peptide for MECFS? "Curative"?!

    I found this article on Urocortin and Urocortin II....not sure if it relates or not http://www.jneurosci.org/content/22/2/404
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    Holtorf Medical Group - Has anyone been?

    I’m thinking about going to the Holtorf Medical Group in El Segundo.... Has anyone been? Had a good or bad experience? They seem to treat CFS with hormones among other things. I’ve tried so many other docs and centers, so want to see if anyone benefited or has been. Thanks!
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    Valycte Question

    For those of you who are on Valycte, how long did it take before you noticed a difference or improvement? Just started 450 mg, 2 x a day about a week ago.....thanks!
  4. C

    should i pay $90,000 for stem cells?

    Did you test positive for any of these viruses? How well are you from 7 months of Valycte + IVIG? What’s your functioning from it?
  5. C

    Antistreptolysin O around 300 for 1 year --- antibiotics warranted?

    When I first got sick 2 years ago with CFS I was diagnosed with strep throat. They gave me antibiotics and I developed a full body rash for 5 days and felt even sicker. (I’m not allergic to the antibiotics bc I’ve done a test) I have a feeling mono had something to do with the rash, even though...
  6. C

    Transfer Factor Overstimulation Reaction

    Transfer factor wayyyy overstimulated me....I could barely handle 1/9th of a pill. I got a lift and then would crash hard.
  7. C

    Any Reasons NOT to Take Glutathione?

    Did you feel better before you crashed? I took it for the first time orally and immediately felt better within 20 minutes....and for the rest of the day. However, I crashed super hard the next day (and week). Have you tried it again at a lower dosage?
  8. C

    Any Reasons NOT to Take Glutathione?

    Did you feel better before you crashed? I took it for the first time orally and immediately felt better within 20 minutes....and for the rest of the day. However, I crashed super hard the next day (and week). Have you tried it again at a lower dosage?
  9. C

    Comment by 'CFS_Kristin' in 'Is PEM due to bacterial endotoxins?'

    Can you explain what you did to heal leaky gut?
  10. C

    How likely is high vit. C a mast cell degranulator?

    Hi @Gingergrrl - What supplements have you found to be the most beneficial for your MCAS? Also, when you take certain herbs or do treatments to kill off that cause herxing, does that aggravate your MCAS?
  11. C

    Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in ME/CFS

    Hi Kyla, What mast cell treatments are working best for you?
  12. C

    One month into Valtrex, starting out on Valcyte

    I would contact him but I believe he passed away last October 2015. I didn't know that until recently.
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    One month into Valtrex, starting out on Valcyte

    Just a little background, I've been more or less bedridden the past 1 year with symptoms of extreme fatigue, nausea, migraine, everything you can imagine, so weak I can't get out of bed. I decided to try and follow Dr. Lerner's protocol, since my EBV and HHV-G Titers were high (they are not...
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    One month into Valtrex, starting out on Valcyte

    Hi, Are you still taking Valtrex? I started 1,000 MG 2 months ago, and when I try to stop taking it I get extremely terrible flu symptoms. I'm not sure if this is a sign that it's working or that it's giving me withdrawal symptoms.
  15. C

    Patients Taking Valcyte with Imunovir/Equilibrant

    I got a terrible crash from the tilt table test. Took me over 2 months to recover, and still not the same as I used to be before. I would avoid this is possible. just my advice :)
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    How does dysautonomia cause leg weakness?

    Where do you feel the weakness in your arms? Is it overall? Under the armpits? I have been dealing with weak arms ever since I got sick with CFS/POTS. I get a pulsating feeling and it used to be under my arm pits and now it's an overall weakness in my arms.
  17. C

    New Mella talk, exciting reveals

    My CFS started after I got my Flu Shot. I had not gotten it in my early twenties for maybe 5 years, was perfectly healthy and then 2 years ago got it in November. All of December I was extremely run down, felt like I was coming down with something. Then I developed a fatigue every morning for a...
  18. C

    Adverse reaction to probiotics (histamine intolerance?)

    Have you ever been tested for SIBO? I tested negative but my doctor wants to try me on Xifaxin to see if it helps. Not sure whether or not I should try.
  19. C

    Adverse reaction to probiotics (histamine intolerance?)

    Hi, I've been sick with CFS for over 1 1/2 years, bedridden for 1 year, everything started after I got the flu last March 2015. I recently noticed that I'm super sensitive to probiotics and anything with histamine like Kefir. I had a TERRIBLE reaction to Kefir and sourdough bread, took me 4 days...
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    Have any cfs/me patients gotten worse after they received a flu shot?

    I was completely healthy, running a business, working out 4-5 days a week and traveling on weekends. The only other time I had fatigue in my life was when I was 18 I had Epstein Barr. But I was still able to go to college, I had to take it easy the first few months, but maybe because I was so...
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    Have any cfs/me patients gotten worse after they received a flu shot?

    I refuse to get another flu shot. My CFS started shortly after I received the Flu shot in November 2014. All of December I felt so run down, like I had come down with something and for months I would walk up with bad fatigue. Finally in March 2015 I got the flu, and my problems escalated when...