• 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. rockymountainmama

    What is your personal theory or understanding of ME/CFS?

    Personal Theory: CFS/ME is really several different illnesses that have yet to be diagnose-able OR there are distinct phenotypes. My CFS neighbor is a "moldie", I have a viral cause and suspected MCAS. Our symptoms are very different too.
  2. rockymountainmama

    What are the lab tests used to help detect MCAS?

    Dear @Neunistiva and @redo, Even Afrin, the "godfather" of MCAS knowledge does not have a magic laboratory to send anyone to. The problem is after the blood draw or submitting the 24-hour urine, ANYONE in the chain of taking the sample to testing it can very easily screw this up. The half-life...
  3. rockymountainmama

    Appointment regarding MCAD with Dr. Afrin 1/26/17

    Dear @Lynn, @redo, @Fogbuster, After 21 years of missteps, I have recently met with a "Dr. House" type doctor who thinks I may have MCAS. I've read that Dr. Afrin's colleague, with who he now shares an office, Dr. Tania Dempsey states on her website that the TESTS ARE OFTEN NEGATIVE. She sends...
  4. rockymountainmama

    What are the lab tests used to help detect MCAS?

    Dear @Peyt Also check out http://www.mastcelldisease.com/mcas-doctors/ https://www.drtaniadempsey.com/single-post/Ask-The-Expert-Mast-Cell-Activation-Syndrome
  5. rockymountainmama

    CRITICAL Choline / Sensitivity Problem -- Please Help

    Dear @joejack102 Please look up Mast Cell Activation Syndrome. God Bless You to find help soon. http://www.mastattack.org/2015/05/mast-cell-disease-fact-sheet/ https://www.jillcarnahan.com/downloads/MCAS-Afrin.pdf
  6. rockymountainmama

    Do you have ME/CFS with or without sore throat?

    Dear @BadBadBear, Thank you so much for the helpful info. I too see an integrative MD, who is also always worried about my liver! I have to try something, QOL is pretty bad with all this throat pain. Although not a happy situation, I've adapted to my 50% life for these 21 yrs, as I'm sure...
  7. rockymountainmama

    Do you have ME/CFS with or without sore throat?

    Dear @BadBadBear, I JUST EDITED THIS! I am highly interested in your Famvir + Celebrex protocol, do you know where this treatment originated (I like to research before trying)? (OOPS I JUST FOUND OUT THAT IT IS PRIDGEN) Did your local MD/ND agree to prescribe this? My jaw glands are...
  8. rockymountainmama

    Do you have ME/CFS with or without sore throat?

    Dear @BadBadBear , Sore throat is a big big deal for me, I'm interested what the doctor gave you Famvir "for" (my doc will give me just about anything, but there has to be a reason), was it for EBV? (I have IGM+) SIncerely, RMM
  9. rockymountainmama

    Active EBV?

    Dear @Hip, I too received the "positive" EBV results from Mayo, however they were positive for every EBV category, IGM+ included. (actual mono was in 1983) I have since found out that ARUP does the quantitative results, and that many US labs will send to ARUP, one just has to specify ARUP on...
  10. rockymountainmama

    Do you have ME/CFS with or without sore throat?

    Dear @Merry I also have chronic right-sided sore throats (Me/CFS since 1996). Has the Methylation Protocol still kept your sore throats at bay? Thank you!
  11. rockymountainmama

    Do you have ME/CFS with or without sore throat?

    Dear #Merry Since I started the Simplified Methylation Protocol last September, I have had few sore throats. I can't remember when I had the last one and would have to read through my medical diary to give you a more accurate account. I also have chronic right-sided sore throats (Me/CFS since...
  12. rockymountainmama

    When people ask you to dinner

    Hi everyone, Although I have good days and bad days, my default is to NOT MAKE ANY PLANS. EVER. Because I know I will feel sick so often and canceling on friends feels awful. I love the wording of this advice in last Sunday's NY Times "social Q's" column! Sounds like the writer has Fibro or...