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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. Firefly_

    reality television show 24 CFS/ME patients move out to desert

    I’m of the opinion that if you build it they will come, it’s a fantastic idea that many people would jump on. Not me but my situation is different than a lot in that I live on 33 beautiful acres, made my money before I got sick and my husband is an outstanding caretaker. If not for all that I...
  2. Firefly_

    I am having the best day...

    Love it when I get good days, just lets me know I’m not irretrievably broken! Got my fingers crossed for you.
  3. Firefly_

    Emergency, Please Help

    Someone way smarter than me may be able to help you, but if I were you, I’d try to find a good functional medicine dr
  4. Firefly_

    Low Dose Naltrexone Experimentation

    It really messed with my sleep at first too, but I was already struggling with insomnia at the time the LDN just made it worse, and my dreams were vivid and “edgy” not really bad but...anyways, it all smoothed out and I ended up at 3 mg in the morning and 5 mg at night, seemed to do the trick...
  5. Firefly_

    Very Sad

    Me too.
  6. Firefly_

    gut pain

    I just keep a bottle by the bed and swig from it a couple of times a day, but most people probably couldn't tolerate it like that due to the strong flavor so it's recommended to put a tablespoon in warm water and drink it like that, However, if you have histamine and yeast issues, not sure if...
  7. Firefly_

    gut pain

    Gastroenterologist/uppper gi? Gut pains a bitch and a lot of times they don't really know why you have it, so will just prescribe Prilosec or something similar. I've been using apple cider vinegar to control muscle spasms and it's had the added benefit of stopping my persistent heartburn and...
  8. Firefly_

    LDN Week 3

    Are you attributing the gut pain to LDN? Maybe stop for awhile and see if you continue to have those symptoms. May need to start with lower dose and titrate up slowly, some people don't tolerate it well at first/ever.
  9. Firefly_

    Suggestions on How to manage organizing pills?

    I've had trouble finding organizors big enough for a weeks worth of pills so I just line up 10 plastic colored shot glasses for a.m. and 10 for p.m. meds, (I use a specific color for morning, and different one for night or I'd certainly screw that up!) and if I have to travel I dump each dose...
  10. Firefly_

    I have got the diagnosis CFS, but..

    I've always considered it somewhat of a wastebasket diagnosis as in "you are truly f@$%ed up, and we've got no clue!" Please find something else...anything else!
  11. Firefly_

    I have got the diagnosis CFS, but..

    No if you look towards the end of her message she was saying that it's possible some are misdiagnosed as she was.
  12. Firefly_

    Dr. Kaufman patients. Anyone Bartonella positive in Galaxy Lab being treated here?

    My gp took a tissue sample in my upper arm and it was cultured by galaxy for I think about 3 weeks.
  13. Firefly_

    Dr. Kaufman patients. Anyone Bartonella positive in Galaxy Lab being treated here?

    He tested me for Bartonella via galaxy and it came back negative. I resisted getting a tissue sample for awhile due to cost, but he kept insisting that he thought I had Bartonella, so I finally relented and sure enough it came back positive. Silly me!
  14. Firefly_

    Pain help! At the end of my rope

    Low dose naltrexone got me off of the Lyrica and Tramadol, I take 3 mg a.m. And 5 m.g. before bed. I also suffer from internal and external cramps/muscle spasms, swig on cider vinegar throughout the day keeps them at bay
  15. Firefly_

    Megasporebiotic - Has anyone tried this?

    Not sure which dr you meant so Dr Kaufman is my main doc, his office is the Center for complex diseases in Mountain view, ca 650-447-3001. Functional medicine dr is in Edmond Oklahoma Rob Wilson, Thrive Medical, 405-212-9667. So sorry I was this late replying!
  16. Firefly_

    Constipation Treatment and vulva pain

    When I got sick with this and sibo I was constipated for 6 months. Nothing worked. Was taking high dose magnesium every day, didn't help. Miralax, exlax, nada. Even resorted to enemas. Didn't work. Dr Kaufman put me on Iberogast, you can get it from Amazon, 3 times a day. Can't remember how...
  17. Firefly_

    Is Anyone on LDN for pain?

    I have adrenal insufficiency or some such thing. On thyroid meds and also Dexamethasone because I don't make any cortisol. I can make it just don't. Nothing in that regard changed when I started taking the LDN in the a.m. But I had already started it in the evening before I saw Dr Kaufman and...
  18. Firefly_

    Is Anyone on LDN for pain?

    Hey Misfit my 2 cents....I've been on LDN for over a year and a half was taking 4.5 mg at night and also taking tramadol throughout. It did cause me crazy dreams at first and my sleep was shite already so not sure if that hurt it any, but I sleep fine now. A few months ago Dr Kaufman had me...
  19. Firefly_

    Positive for Bartonella...and I have so many questions!

    @valentinelynx @Strawberry just want to see how ya'll are doing and if you are still on abx? I was started on valcyte clarithromycin and the rifampin a couple of months ago but Dr K just took me off of rifampin because it ate my lunch (the valcyte is no picnic either!) and my functional...
  20. Firefly_

    Low dose Naltrexone

    S someone on here mentioned once that the residue was the filler, I also make mine by dissolving the 50 mg tablets and you don't need to warm the water. When I take it I just shake it up first.
  21. Firefly_

    Quick Bloodtest Question

    I think you have it covered by drinking your heaps of fluid. Otherwise I have nothing to add. Congrats on your improvement, it's the little things that make us happy now, yes?
  22. Firefly_

    Weight loss and weight gain poll

    I'm in justys boat. Lost 40 lbs rapidly at onset of illness then got started on a low dose of Dexamethasone, got up out of bed and was ravenous all of the time. Gained back the 40 and recently 10 more. Sometimes I feel like I've got something chemically lacking in my brain because I can eat till...
  23. Firefly_

    Anyone improve by daily dose of coconut oil?

    Use about 4-5 tablespoons of coconut milk in my coffee every day and haven't noticed any improvement from that.
  24. Firefly_

    Does anyone have issues with ketotifen?

    Tried it for almost a week, felt more and more tired/toxic, then had a lovely 3 day bout with gastritis and said yup, nope, not for me thanks. Might try again when I'm not so crashed, but then again, might not.
  25. Firefly_

    Disappointing Visit to Dr. Montoya's PA

    I'm not sure re ampligen, but I do know that he tests for every damn thing under the sun on an ongoing basis (I get labs done probably 3 or 4 times a year and the last set was 17 vials of blood) and treats accordingly. And for me he's batting a thousand as far as "I think you have this or that...
  26. Firefly_

    Disappointing Visit to Dr. Montoya's PA

    @ebethc my advice would be go see Dr Kaufman at OMI in Mt View
  27. Firefly_

    Positive for Bartonella...and I have so many questions!

    Yeah, I'm going to query dr Kaufman about the dx, and if that would change it and also if this could just be another thing caused by my immune deficiencies like the viral reactivations or what. It's all so damned confusing to me, the whole chicken or egg conundrum. Have all of these different...
  28. Firefly_

    Positive for Bartonella...and I have so many questions!

    Thanks for that @xrunner, very informative. I've actually been suffering from gastritis the last 2 days which is why I haven't been up to posting. I get it periodically ranging from mild to severe and it's very interesting that it could be attributed to Bartonella!