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    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. Suffering Succotash

    Probiotics During Heavy Antibiotic Treatments

    During my clarithromycin antibiotic treatment for mycoplasma pneumonia, I used Jarrow Saccharomyces Boulardi Probiotics. The Stanford PA recommended this brand. Ordered from Amazon: https://amzn.to/2Z9V1jB
  2. Suffering Succotash

    Unexplained recovery from lactose intolerance?

    What I learned in my food chemistry classes is that lactose intolerance can wax and wane, go in and out of existence like a radio station going in and out of range. The intolerance does seem to be dosage-related, so while you may be able to tolerate a little lactose, more might cause a...
  3. Suffering Succotash

    Updates on ICD-11 and other classification and terminology systems

    Thank you for that thorough and well-researched response. I appreciate the effort you made here. I'm a researcher myself and love answers with citations. Warm regards. Recommendation: Replace entity, "Benign myalgic encephalomyelitis" with "Myalgic encephalomyelitis."
  4. Suffering Succotash

    CFS or ME/CFS statistics?

    Does anyone recall a website that has number of people with this illness, in particular, California? I sourced it in March, cannot find it now. Or, if you have the numbers and source, that would be great. Thanks.
  5. Suffering Succotash

    Updates on ICD-11 and other classification and terminology systems

    BENIGN myalgic encephalomyelitis? Do they really think ME is benign?
  6. Suffering Succotash

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    I will respectfully disagree, and ask others, if they are interested, to do their own research into treatment of this illness in Europe. Good luck to you, JES.
  7. Suffering Succotash

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    I don't see it that way. There are treatments that are evidence-based, both in the medical literature, and from the informed patient comments here. I wrote my statements about Stanford's CFS Clinic in reference to treatments with little statistical or anecdotal success that are prescribed in a...
  8. Suffering Succotash

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

  9. Suffering Succotash

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    In my opinion, there's no way Bonilla could be anywhere near where he needs to be to effectively and skillfully treat patients given how green he was less than a year ago. His knowledge of MECFS was in its infancy, and I was floored to see how little he knew. The informed patients on this forum...
  10. Suffering Succotash

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    When I took the antiviral Valcyte, I read a great deal about it before beginning, and what others said, and what I found is, yes, you do feel worse before you feel better. I thought this was due to viral activation before die-off. You might research Herxheimer effects. Yes, hang in there. I...
  11. Suffering Succotash

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    Thank you for that. Interesting to read. I predict that the exhaustion suffered by MECFS patients will be discovered to be a cell mitochondria autoimmune illness -- the immune system attacks the mitochondria and disrupts the energy production cycle, the ATP --> ADP energy synthesis.
  12. Suffering Succotash

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    That is my understanding, that MCAS is autoimmune. My guess, is that MECFS will be eventually discovered to be an immune illness also, with dysregulation at both ends -- meaning the patient has both an under-active immune system and over-active immune system (autoimmune). As an autoimmune...
  13. Suffering Succotash

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    Learner I, I will write you a personal note about MCAS. Runs in my family. Thanks for your post.
  14. Suffering Succotash

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    IRT mycoplasma, you probably have to be on antibiotics longer than three months to kick it. It's a bear of an infection and really gets established in the body. Recommended to me: take Clindamycin 6 months, then go off for 1 month, get re-tested by the same lab, then go back on for another 6 months.
  15. Suffering Succotash

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    I think MCAS is showing up more and more in patients with MECFS. That's what I'm reading and hearing from inside the medical field.
  16. Suffering Succotash

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    <<Also Dr. Montoya is really hemmed in by Stanford, and has to be extremely conservative. Seeing specialists there is bureaucratic and exhausting, but you can get a ton of testing- if that’s what you want-that’s covered by insurance.>> Montoya is hemmed in by his research schedule and frequent...
  17. Suffering Succotash

    What is your favorite probiotic

    I take: Jarrow Formulas Saccharomyces Boulardii + MOS, 5 Billion Cells Per Capsule. 180 Veggie Capsules. Amazon $29. Keep in refrigerator. Recommended by Stanford CFS PA.
  18. Suffering Succotash

    Approaching recovery from ME and CFS - L. Jason et al: J. Health Psychology

    Thank you for posting this. I was interested in reading it. I've seen listed other articles by Devendorf? Can you recommend his analyses or other articles?
  19. Suffering Succotash

    went to Stanford CFS clinic -- a bit confused about treatment plan

    ------------------------------------------------------------------------------------------------------------------------------------------------- I do agree that Stanford Medical having a CFS Clinic gives MECFS professional recognition. I agree that the researchers at Stanford Medical (not the...
  20. Suffering Succotash

    went to Stanford CFS clinic -- a bit confused about treatment plan

    Dr. Montoya prescribed a medication but then never explained what it was for or why he was prescribing it, even though the medication has a very high risk attached. When I asked him questions (emails, telephone, letter), he never responded. Not even once. That's Montoya. From a different...
  21. Suffering Succotash

    went to Stanford CFS clinic -- a bit confused about treatment plan

    I've known Dr. Montoya since 2009. I've known Jane Norris about as long. Dr. Montoya sees patients once per year, according to the staff and Clinic Manager. That's not enough to manage a severe, chronic illness. Dr. Bonilla is very inexperienced. He was learning the basics of HHV family of...
  22. Suffering Succotash

    went to Stanford CFS clinic -- a bit confused about treatment plan

    I found Dr. Bonilla too inexperienced during my brief encounter with him.
  23. Suffering Succotash

    How to work with Medicare when you have ME/CFS ?

    Thank you for your input. The difference in price between regular Medicare and a Medicare Advantage plan was $16,000. Trouble is, the Medicare Advantage plan fights MECFS patients every step of the way in obtaining coverage. It's hell. The illness is bad enough; fighting for care makes every day...
  24. Suffering Succotash

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    The problem with Bonilla is that his understanding of the illness is in its infancy. When he was in the exam room with Dr. Montoya and me, Montoya was explaining the most basic concepts of the illness, stuff we patients have known for years. It was embarrassing. I can't believe someone so...
  25. Suffering Succotash

    How to work with Medicare when you have ME/CFS ?

    Thanks for the feedback and insight, everybody. A senior Medicare analyst did an analysis of which plan in my area was best, and because of my very high prescription cost, the Medicare Advantage plan won out by thousands of dollars. I'll try to do another analysis soon.
  26. Suffering Succotash

    How to work with Medicare when you have ME/CFS ?

    Thanks, Mary.
  27. Suffering Succotash

    How to work with Medicare when you have ME/CFS ?

    Some very good ideas here. I'm grateful for the responses. Which ME/CFS physicians take Medicare? Any? Kogelnik, Kaufman, etc in the Bay Area. Montoya takes Medicare but he's a disaster. Never in the office and elusive.
  28. Suffering Succotash

    How to work with Medicare when you have ME/CFS ?

    Please share any thoughts on this. I'm disabled, like many ME/CFS patients. I have Medicare (actually Medicare Advantage). If you have Medicare, your ME/CFS medications and treatments must be a Medicare approved treatment, or you pay out of pocket. Sometimes it's tough getting treatments...
  29. Suffering Succotash

    Disappointing Visit to Dr. Montoya's PA

    Treat the mycoplasma. I was much better after doing so with Clarithromycin. I took Jarrow Probiotics to restore gut flora. It's not crazy to take antibiotics that long. You need to treat the mycoplasma pneumonia. After three months, go off the antibiotics for 2 months, and get re-tested. Go back...
  30. Suffering Succotash

    Disappointing Visit to Dr. Montoya's PA

    I had an extremely disappointing experience also. Slap-dash medicine and no follow-through. The PA is good, but she is not a physician.