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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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Search results

  1. Isaiah 58:11

    Prednisone makes me feel good

    At the moment my brain can't tell me if this matters at all, but I will add that my ADH/vasopressin has always tested as low or totally undetectable and I have had sort of mini crises remedied by salt, but I have also seemed to benefit from overall electrolyte supplementation, sometimes...
  2. Isaiah 58:11

    Prednisone makes me feel good

    No problem. :) I hope something sticks out as similar and potentially helpful.
  3. Isaiah 58:11

    Prednisone makes me feel good

    Prednisone was awesome for me too. I was prescribed 40mg with a move to 20mg. I am currently taking Dexamethasone at a dose equivalent to 27mg Prednisone and it helps other things but doesn't seem to have quite the same effect?
  4. Isaiah 58:11

    Does anyone think they could have something else?

    I don't want to hijack the thread, but I will clarify that I think I was susceptible to the tick borne infections because of the prigonal insult. Yes, they were within months of each other. I took antibiotics for months (They make me feel so much better! Even the ones not known to be...
  5. Isaiah 58:11

    Does anyone think they could have something else?

    I am probably wrong, but here goes: I think ME is a *thing* (obviously) and all the other things are add-ons, like sprinkles and peanuts on a frozen yogurt. I got food poisoning while coming down with flu and that was my onset. Then I got a tick bite, then I lived in mold, then I took a...
  6. Isaiah 58:11

    #OMFScienceWednesdays-The hunt for elusive pathogens in ME/CFS, by Jaime Seltzer, M.S

    What about fungal DNA in the sinuses and/or gut? My husband had a coworker whose wife had ME but who was eventually diagnosed with a fungal sinus infection and cured. I had a stepped onset: food poisoning, tick bite, then, right after I let my husband, full-blown ME. My husband has had...
  7. Isaiah 58:11

    If Dr. Kaufman or Dr. Chedda Have Treated You for TBD/Bartonella...

    Will you please PM me (or post here, if you feel free to) the details of what was done, how, and why? It would also be great to hear approximately what was covered by insurance, how useful you felt it was, and if you recommend seeing them for this purpose. And if there is anything I have...
  8. Isaiah 58:11

    Desperate for HELP or support for extreme burning generalized skin pain

    I don't have much to offer. :( Unfortunately, I do know what you are talking about though. I once had a doctor tell me that was viral reactivation in my nerves, but then when the problem resurfaced she had forgotten that she said that. *If* that were true, 4 grams daily of lysine, eventually...
  9. Isaiah 58:11

    Question re: Quercetin + Vit C from Vitamin Shoppe (US)

    I am sorry, but I have no answer for your specific supplement. If you can afford to repurchase something, you may want to look at these? Beyond Health, I believe, actually sells a high-quality vitamin C though. Anyway, these work for me and don't contain stearates which my gut doesn't seem to...
  10. Isaiah 58:11

    What Fixed/Aided Your Brain Fog?

    1. Mold avoidance 2. Caffeine 3. Zyrtec twice daily 4. https://beyondhealth.com/cell-repair-quercetin-240-capsules.html 2 capsules twice daily 5. Nicotine 6. Sleep deprivation 7. Outdoor meditation when I can handle the weather
  11. Isaiah 58:11

    Court orders MERCK to list CFS as a side effect of HepB vaccination

    Crazy. I had to have that series TWICE (record was lost after first series in junior high). What is most ridiculous, I actually HAD Hep B as a child and should have just had antibodies tested both times.
  12. Isaiah 58:11

    Veterinary Probiotics?

    I accidentally stumbled across a calf bolus probiotic in an attempt to hunt down a product like Symbioflor of Mutaflor. The details on that probiotic weren't available, but it led me to wonder if perhaps the beneficial E Coli strains aren't still available in the US in animal products. Does...
  13. Isaiah 58:11

    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    I haven't been tested by ARUP, but I supposedly have both based on my neurologist's interpretation of Sonora Quest labs. I was just looking at Dr. Lerner's treatment of C. pn. Last night (or was it Mycoplasma? I test + for both...) and was surprised to see that he treats until IgG goes down to...
  14. Isaiah 58:11

    Mifepristone for ME/CFS? (NK Cell Function / HPA Reset)

    I just experienced a system reset of sorts that had me wondering about all of this. I was put on propanalol for POTS and after about a month I had a day where I forgot to take it. I noticed that my heart rate was normal, which seemed odd for something that is dosed throughout the day, so I just...
  15. Isaiah 58:11

    Seeking information on long-term outcomes with Dr. Kaufman

    Care to elaborate? It doesn't seem to work for me either.
  16. Isaiah 58:11

    What factor in red meat was responsible for my PEM relief?

    @Gondwanaland I have taken 5 mg daily sublingually and tested as deficient, so moved to 10 mg daily sublingually all at once and then also tried divided doses, now I am not taking any as it made no difference whatsoever.
  17. Isaiah 58:11

    What factor in red meat was responsible for my PEM relief?

    This is exactly what happened to me a few months ago after years of finding carnitine helpful. I think my body slammed the door on that pathway for some reason. I posted before about thinking my carnitine and ketone issues could be related and since carnitine has stopped working its magic I have...
  18. Isaiah 58:11

    DNA Connexions

    My doctor wants me to get thousands in TBD testing from Galaxy Labs and Igenex. Someone recommended I do DNA Connexions instead to save money. Do you know anything about that lab? How do the results compare? Thanks!
  19. Isaiah 58:11

    Why this sudden feeling of severe agitation?

    I find a tyrosine capsule very effective when I feel that way.
  20. Isaiah 58:11

    Staph vaccine to treat CFS??

    The initial ones were. This last one I just sent photos because the sores occurred in some of the exact same spots, like there is a reservoir in that location. I first really wondered what was going on because a week or two after the antibiotics cleared it, the sore areas started getting pink...
  21. Isaiah 58:11

    Staph vaccine to treat CFS??

    I am sure this sounds stupid, but I think Staph infections may be helping me recover; they seem to be modulating my immune system in a similar way as the vaccines did for others. My most recent was 6-8 weeks ago and after I started antibiotics my lungs hurt, which I thought was odd. Then, over...
  22. Isaiah 58:11

    Dr. Brewer Protocol

    Yes, it needs to be refrigerated. I have had wonderful experiences with Woodland Hills (they have done amazing things to accommodate me), but do not recommend Hopkington Drug.
  23. Isaiah 58:11

    Core etiology of ME/CFS: Fe toxicity?

    I don't remember? The infusion was a few years ago. I know we did that because the shots had absolutely no effect. I know I also tried cutting up grassfed beef liver into cubes and downing a handful of that straight from the freezer every day. These were the only pills (prescription or...
  24. Isaiah 58:11

    Why teriflunomide is a dark horse and may pack the killer punch. #ResearchSpeak #CharcotProject

    Yes. My diagnoses include both CFIDS and autoimmune encephalomyelitis.
  25. Isaiah 58:11

    Core etiology of ME/CFS: Fe toxicity?

    ^^^ I am similar to valentinelynx I've had iron pills, shots, and infusion. At last check iron SAT was 7, ferritin 9. But, to go along with your theory, alethea, I have a friend who is CIRS, EDS, MCAS, etc. and does have hemochromatosis.
  26. Isaiah 58:11

    Core etiology of ME/CFS: Fe toxicity?

    That is interesting. Why? FWIW my family has a pathogenic CHEK2 variant.
  27. Isaiah 58:11

    Carnitine Deficiency and OAT Metabolites

    I do have blood sugar problems. Growing up I had hypoglycemia and had to go to the school nurse for a snack mid-morning. I hated juice and candy and such as it would make me ill. That has shown up at times on labs as an adult, sometimes low, sometimes normal but my normal baseline has crept up...
  28. Isaiah 58:11

    Carnitine Deficiency and OAT Metabolites

    The science behind this is way over my head, but maybe my test results will help you puzzle it out? I have urine ketones (anywhere from 15 to 160 mg/dl) with some frequency and a carnitine deficiency that shows up when the acyl/free ratio is tested. My doctor says the urine ketones are caused...
  29. Isaiah 58:11

    Mountain View Accommodations

    I agree that would be a good idea, but the cancellation window on my ticket closed a few weeks ago. I will just have to do as suggested and let them know up front. I will also plan on getting there early, if possible, and ask to pay before the appointment. And I guess it wouldn't hurt to bring...
  30. Isaiah 58:11

    Mountain View Accommodations

    Well that is worrisome! That might make me miss my (non-refundable) flight. I called and asked if the appointments ran late and they said never more than 10-15 minutes. I have no idea what I would do in that situation!