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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. el_squared

    plaquenil for me/cfs -- work for anybody?

    Hi, A year or two ago I tried Plaquenil briefly but it made my pain worse. I didn't really stick with it, though -- maybe it would have helped if I took it longer. I have talked to other patients of the Stanford CFS clinic who have taken it and for some it helps. As far as I know the Stanford...
  2. el_squared

    Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

    Who are you asking?
  3. el_squared

    Gammacore--any experiences?

    My GI doc at Stanford just mentioned it. I'll let you know if she gives me one. I suppose we have to apply to get coverage from my insurance, first. She thinks the vagus nerve is involved in my bad ibs and fatigue after defecating.
  4. el_squared

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

    I meant to ask you, what treatments has Dr. Nguyen given you?
  5. el_squared

    plaquenil for me/cfs -- work for anybody?

    Totally agree, although I can't express it as articulately in scientific terms like you. All the ME specialists are saying increasingly that this is a disease of inflammation. They're also seeing auto immune components. And yet, as you said, we aren't given access to these drugs. At least...
  6. el_squared

    plaquenil for me/cfs -- work for anybody?

  7. el_squared

    plaquenil for me/cfs -- work for anybody?

    So Sorry, one quick followup question: Why are you seeing a rheumatologist if you haven't been diagnosed with any auto immune conditions and have no muscleor joint pain? Would the sulfasalazine be for bowel issues instead?
  8. el_squared

    plaquenil for me/cfs -- work for anybody?

    I go to Center for Complex Diseases too! I see Dr. Chheda. The first several months I have tried SIBO fixes, but I react badly to everything. She suggested I try LDN before Plaquenil. I have had bad reactions to LDN in the past -- I took it here and there in 2015 and 2016, while a patient at...
  9. el_squared

    plaquenil for me/cfs -- work for anybody?

    Thanks for the report. Wow, I hope you continue to feel better. Had you been diagnosed with an autoimmune disease that Plaquenil is typically prescribed for -- Lupus, or RA? Just curious. I have not. I have not considered hyberbaric oxygen therapy. It must be expensive? Or did you do it...
  10. el_squared

    plaquenil for me/cfs -- work for anybody?

    And I also tested positive on the Quest Early Sjogren's panel. Although I don't think my insurance-covered docs will recognize it.
  11. el_squared

    plaquenil for me/cfs -- work for anybody?

    Thank you. And doctor did recently diagnose me with POTS.
  12. el_squared

    plaquenil for me/cfs -- work for anybody?

    Oh, also, what is the Omega supplement you're taking?
  13. el_squared

    plaquenil for me/cfs -- work for anybody?

    Thank you so much for responding Gloria. Good to hear that you have improved. Your ME issues sound very similar to mine, except I have not developed GA, which I had never heard of. Sounds like your stomach has tolerated it, which is good. I took my second dose of it today, just 100mg. After a...
  14. el_squared

    plaquenil for me/cfs -- work for anybody?

    Yes, true. As I said, I have no inflammatory markers that suggest those diseases, although one doc suspects sjogrens. Would love to hear if it has helped an ME/CFS patient with the fundamental weakness and fatigue.
  15. el_squared

    plaquenil for me/cfs -- work for anybody?

    No improvement with a chance of damaging our eyes -- not very encouraging!
  16. el_squared

    plaquenil for me/cfs -- work for anybody?

    Yeah I was diagnosed with Lyme but not sure if I have it. I'm not treating for it as the most recent tests were negative. That's good you had a positive reaction to Plaquenil. I am worried about the digestive effects. I definitely have bad IBS-C. In addition to SIBO and motility issues. The doc...
  17. el_squared

    plaquenil for me/cfs -- work for anybody?

    Hi, The Stanford CFS clinic recently prescribed me with plaquenil, after I responded adversely to several antivirals. I don't test for high inflammatory markers like ANA, but I guess the clinic doctors think this drug might have anti inflammatory and antiviral properties. I have pain and...
  18. el_squared

    Sudden increase in flu-like symptoms -- how to treat?

    Yes I have tried LDN a few times. It seemed to give me some energy, but what happens is that after, say, 5 days of taking it, I will develop terrible muscle tension. I have tried many different dosages, down to .25. So it's strange to me that it's for fibromyalgia, because it makes mine worse...
  19. el_squared

    Sudden increase in flu-like symptoms -- how to treat?

    Yes my doc told me to stop the neomycin, so I stopped after three pills. Xifaxan always causes me to feel better. but unfortunately the boost doesn't last.
  20. el_squared

    Sudden increase in flu-like symptoms -- how to treat?

    Curious if you have tried LDN, which is touted as an immune modulator.
  21. el_squared

    Sudden increase in flu-like symptoms -- how to treat?

    Thank you. I'd never heard ot andrographis. I don't have a respiratory infection. Just this flu-like illness that is the hallmark of my CFS illness. Temperature a little elevated and all the flu-type symptoms without having a flu.
  22. el_squared

    Sudden increase in flu-like symptoms -- how to treat?

    Thank you. Interesting. I've begun seeing a doctor who wants me to try Zantac for mass cell activation syndrome, among other treatments, but I haven't begun them yet. I was trying to treat sibo with xifaxan and neomycin. I had not taken neomycin before and it seems to be throwing my immune...
  23. el_squared

    Sudden increase in flu-like symptoms -- how to treat?

    Hi there, I am sick all the time but right now the furnace has been cranked up on the flu/fever symptoms that I suffer. Feeling hot and then cold, clammy, massive headache, rising temp (though my temp is never that high). Extremely weak and bedbound. The last time it was this bad, it lasted...
  24. el_squared

    TGF-Beta 1 results?

    My test was LOW. Anyone know what that means?
  25. el_squared

    PANDAS/PANS treatment protocol for ME/CFS?

    I just got my Cunningham Panel test results back. Will be a few weeks before I see the doctor who ordered test to discuss. I am elevated on three out of the five markers. If anyone can opine on the significance, what these means, please chime in...
  26. el_squared

    New doc at Stanford

    Hi, Dr. Bonilla just prescribed me Arava as well. Because I react badly to the antivirals. Have you been on Arava? Wondering if you tolerated it and if it has helped...
  27. el_squared

    can't tolerate Valtrex after several tries -- what do I do?

  28. el_squared

    can't tolerate Valtrex after several tries -- what do I do?

    And thanks for the links -- very interesting. My viral tests only showed past infection. Stanford has maintained that these elevated numbers are still significant, but I really wonder. It seems like the ground is constantly shifting. It's viral-related. It's mitochondria. It's inflammation. It's...
  29. el_squared

    can't tolerate Valtrex after several tries -- what do I do?

    Thanks for your reply. I was surprised that Bonilla didn't offer to do monthly labs. But I recently talked to my internist who I see regularly and she seems okay with ordering liver function tests, etc. The Center for Complex Diseases sounds promising but Stanford is covered by my very...
  30. el_squared

    can't tolerate Valtrex after several tries -- what do I do?

    I'm just hearing about this one -- Acyclovir. That's not Famvir, right? That's Zovirax? Is it helping you?