• 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

  1. R

    Reverse-engineering Mast Cell Issue? (MCAS, MCAD, ACV apple cider vinegar, ketotifen, bicarbonate)

    Ketotifen from Japan- Family Pharmacy no prescription, not too expensive. Once B12 deficient alway B12 deficient I was told.
  2. R

    Searching for CFS Doctor in Reno, NV

    I just made an appointment....Can you tell me if you are still a patient of Dr. Fredericks and his treatment protocol for CFS/ME?
  3. R

    Fatigue, flushes, neuropathy, cloudy urine... not ME/CFS

    Hello, I am wondering if you were able to find a diagnosis? I am currently dx with MCAS, it is a form of mast cell activation disorder. I am also being referred to Stanford for lung carcinoid. How are you?
  4. R

    ME is not mould intolerance; mould intolerance is not ME

    Here we go again! Just chasing my tail. Initially thought my weakness and fatigue was due to black mold. Then a diagnosis of CFS/ME due to high titres of EBV, Coxsackies etc...Now a diagnosis of MCAD- due to high tryptase and crazy hypersensitivities .No wait, latest labs show 4 different molds...
  5. R

    has anyone had these symptoms

    Magnesium supplements- have you RBC mag blood levels checked then get a quality supplement- Doctors best
  6. R

    Plaquenil- Herxing?

    I was prescribed Plaquenil approximately a month ago. The first week was very difficult, kidney/back pain, salivary gland swelling, body aches, fatigue. By week 2 most symptoms had resolved. Now in week 4 there back- my face, head body aches, incredible fatigue, little nauseous just basically...
  7. R

    Why now am I reacting to mold?

    Thank you so much for your reply-you make complete sense! I guess I am confused as to why my symptoms that I have been experiencing the last 2 weeks"the extreme reaction" hasn't shown up earlier. Since I have lived here I have 3 sets of symptoms. 1. Fatigue, weakness (since August) 2...
  8. R

    Why now am I reacting to mold?

    The last two weeks have been pretty dreadful with a day or two of a serious crash. My main complaint is "mold". I found this charming nearly 100 year old farmhouse to rent. As my husband says "It's a dump", with hard work wonderful landlord I fixed it up pretty well. We moved in May...
  9. R

    What supplements are best?

    I have been taking B-12, Magnesium, Zinc Vitamin D but want to add supplements for more energy. I am thinking CoQ10, NADH, Selenium, D-Ribose. Any suggestions or thoughts?
  10. R

    Will an Infectious Disease Dr. Do???

    There suggestion is to go back to primary care, retest cpk if elevated- MRI then muscle biopsy. Has an enterovirus been found in muscle biopsy??? Would "modern" medicine look for enteroviruses or would it just be considered unknown or idiopathic if not conclusive?
  11. R

    Will an Infectious Disease Dr. Do???

    Thank you, I checked with Dr. Powell and he doesn't accept insurance-cash only;) I just concluded my "interest" in UCDavis infectious disease - my appt. yesterday went as expected- flagged high titres of EBV & Coxsackies B in their opinion is of no interest or noteworthy :mad:. My high cpk-...
  12. R

    Silly Questions???

    INTERPRETIVE CRITERIA: <1.8 Antibody Not Detected > or = 1:8 Antibody Detected Single titers of > or = 1:32 are indicative of recent infection. Titers of 1:8 or 1:16 may be indicative of either past or recent infection, since CF antibody levels persist for only a few months. A four...
  13. R

    Silly Questions???

    So, Coxsackie B really doesnt sound like my problem. These test were run at Quest labs. What about The EBV, is this a concern? Thank you so much for your expertise and knowledge:) If I could possibly borrow your brain, just for a day or two, I promise to give it back---:D and maybe I could...
  14. R

    Silly Questions???

    Most of my testing was done at Quest, and yes I could use some help interpreting these results:confused: EBV VIRAL CAPSID AG (VCA) NEGATIVE AB IGM EBV VIRAL CAPSID AG (VCA) 3.27 HIGH AB IGG...
  15. R

    Silly Questions???

    Please excuse my ignorance but..... Am I contagious? I tested positive for EBV and Coxsackies B. Since it is an "active virus" is it communicable? Should I be washing my counters with anti-viral, bleach etc...? Should I stay away from elderly and babies, those that are immunocompromised...
  16. R

    Will an Infectious Disease Dr. Do???

    Thank you all for your replies, this is what I suspected. I think I will spend my energy on Dr Petersen or Whittemore Institute. I was a resident of Lake Tahoe in the 1980's, whether or not that has any bearing whatsoever, I don't know? Should I look for a Naturopathic or Holistic...
  17. R

    Will an Infectious Disease Dr. Do???

    I am happy to have some positive labs!!! Seems like a silly thing to say but after so many years... Anywho Coxsackie B 1, 3, 5, 6, positive and EBV VCA 3.27 High and EBV EBNA positive. Where do I go from here? I live in Northern Ca. and am in process of trying to get into UCD...