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

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Search results

  1. R

    CFS Doctor in Istanbul?

    I'm looking for a good CFS doctor in Istanbul. English-speaking would be ideal, but I can work with Turkish if necessary. Many thanks!
  2. R

    GERD exacerbating insomnia

    Could you link the website you mentioned? And do you have access to the study you quoted? Thank you!
  3. R

    GERD exacerbating insomnia

    For the past several months I've seen a flare-up of insomnia, including great difficulty getting to sleep (sometimes not until the afternoon of the next day), irregular heartbeat, and nausea. Acidic foods, caffeine and spices all exacerbate it. It seemed to trigger after being placed on...
  4. R

    Very Sick on Antibiotics/Unsure What to Do

    But a definite diagnosis isn't really possible, right?
  5. R

    Very Sick on Antibiotics/Unsure What to Do

    I started a Lyme protocol on November and am on azithromycin, amoxicillin, malarone and hydroquinone. As I add more to the regimen I seem to be getting sicker and sicker, crashing one or more times a week and barely able to take care of my basic needs. Is this something I need to go through to...
  6. R

    Should I Start Full Lyme Treatment?

    I'll be going on azithromycin, amoxicillin, and minocycline. Also malarone and plaquenil. I did antibiotic treatment for MARCONs and a few months for mycoplasma pneumoniae. Otherwise I haven't done many antibiotics as an adult.
  7. R

    Should I Start Full Lyme Treatment?

    I actually have a hyperbaric oxygen machine and didn't know Lyme was anaerobic until today! Will work on using it more.
  8. R

    Should I Start Full Lyme Treatment?

    Hi everyone, I've been in CFS and mold illness mode for years and recently saw a Lyme doc who treats based on symptoms. He believes I'm a typical Lyme case and wants to put me on a load of long-term antibiotics. Can anyone offer their perspective on issues like safety, Herxing, and whether any...
  9. R

    Phenol & Sulfur Sensitivity - What to eat/How to fix?

    From your response, I take it you believe I have mercury toxicity? Do you think that's related to chemical sensitivities?
  10. R

    Phenol & Sulfur Sensitivity - What to eat/How to fix?

    I am doing the Heartfixer protocol, but haven't started a low-thiol diet. The stuff I'm craving all seems to be on it...I'm also feeling aversion to/feeling full quickly on certain foods like meat and oil. I did try to cross-check glutamate/histamine/sulfur/salicylate foods lists to find what I...
  11. R

    Phenol & Sulfur Sensitivity - What to eat/How to fix?

    Hi guys, For the past month I've been having a painful heart at night, back pain with crying, and sometimes full-body burning pain, as well as sun sensitivity that triggers burning pain. After tracking my reactions to foods, I realized I have phenol sensitivity and cravings (histamine...
  12. R

    Full Body Burning Pain and Erratic/Painful Heartbeat

    I have been having a bit of reflux, but I think the first two can be crossed off the list of possibilities.
  13. R

    Full Body Burning Pain and Erratic/Painful Heartbeat

    Hey guys, About two weeks ago I started having a tight feeling in my chest, a bit of coughing and a sense of throat constriction when I was trying to sleep. We cleaned the dust out of that room after a few days of that. Then, after a couple of days of spending time out in the sun, I started...
  14. R

    Can I stay in my house? (CIRS/MCS)

    From what I've seen, mold is much or all of the problem for a substantial subset of CFS patients, but not all. If you read the theory behind Rich van K's methylation protocol, he explains that he and some other experts believe that glutathione depletion is the central mechanism that triggers...
  15. R

    Can I stay in my house? (CIRS/MCS)

    RealTimeLabs has a urine mycotoxin panel. You can also take the online Visual Contrast Sensitivity test.
  16. R

    Can I stay in my house? (CIRS/MCS)

    Thank you for this. I did not get notified somehow. What's the name of the doc? And how do you get your belongings tested - will any mold remediation company do it?
  17. R

    Can I stay in my house? (CIRS/MCS)

    Hi all, I was diagnosed with CIRS in August but have been sick for 7 years. I developed MCS in February of this year. No real improvement yet on CSM and other binders, but my house isn't exactly ideal. We've had one ERMI score come back so far, on a bedroom on the first floor that's carpeted...
  18. R

    Liver Flush and Biotoxins

    Liver flushes benefit you the same way cholestyramine does - by forcing the body to flush its bile (the "stones"), you can effectively reduce fat-soluble toxins. You may have read this, but it often takes 10 flushes or more to see long-lasting benefit. I don't know what the eczema/TMJ could...
  19. R

    Pain/Fatigue from Antimicrobial Foods...why?

    That's incredibly helpful, thank you! What's LPS?
  20. R

    Pain/Fatigue from Antimicrobial Foods...why?

    I started having fatigue after making salads with onions and garlic, and came to this page: http://www.hi-tm.com/Documents/Spices.html Having been diagnosed with CIRS (mold illness), I wondered if this reaction could be die-off, and went full tilt with it. I've been eating lots of garlic...
  21. R

    Help - MCS Rapidly Worsening

    The MCS developed months before I started CSM. And my electrical sensitivity has actually gotten better since I started it. Since mold seems to induce MCS, and CSM is its best treatment, stopping CSM doesn't seem like a good idea.
  22. R

    Help - MCS Rapidly Worsening

    I've had CFS since 2011 and developed MCS this year after an attempt to do a high-carb diet. Concurrent with the MCS I appeared to develop SIBO - this was treated with Xifaxan but since finishing my course my post-meal gas has gotten worse again. I started cholestyramine for mold detox a few...
  23. R

    Cure Together Survey Summary

    Can anyone elaborate on body inversion? Is it used primarily for pain or does it help with brain fog, or...? It strikes me that it came out as one of the top treatments and yet there seems to be nothing about it online specifically in relation to CFS.
  24. R

    SuperBetter: A Game to Help Heal Illness

    Hello everyone, I've had CFS for 3 years, with varying degrees of severity over that time. A few weeks ago, I listened to a very interesting TED talk by Jane Mcgonigal, who created SuperBetter after she experienced suicidal depression while recovering from a concussion. Watch the talk here...
  25. R

    Xanax Improves Energy?

    Hello Bluestem, I just saw your post! Thanks for replying. May I ask how much Xanax you take, and how frequently? At the moment I just take .5 mg every 10 days or so (when I really freak out).
  26. R

    Xanax Improves Energy?

    Hi guys, First time posting here. I've had CFS for 3 years with occasional anxiety attacks. When I began taking Xanax (just for severe anxiety episodes, every two weeks or so) about 6 months ago, I noticed that while I would have a harder time sleeping than usual for about three nights after...