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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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  1. L

    News: Remote-Control for your Vagus

    I just chatted with Ron B. at Laser Spine Institute. He seemed unfamiliar with any external vagus nerve stimulator, specifically the NeuroCoach ll Stimulator. He said their care involves surgery. If it was for sale it'd probably be easier to find.
  2. L

    News: Remote-Control for your Vagus

    @roller I tried googling this device and found nothing other than the news article you linked. But yes, I'd consider getting the NeuroCoach ll Stim if it was available for purchase and not prohibitively expensive. It could be my imagination, but I've manually --jiggled thumb under jawline--...
  3. L

    Oral Probiotics to Clear Your Head!

    Hi Asklipia, We haven't 'crossed threads' much since red light therapy, almost forgot how fun you can be! I ordered the oral probiotics, will report results later.
  4. L

    Freddd's protocol killed my sleep

    @Aerose91 My first reaction was, 'you can sleep to 5am, what's wrong with that?' But we're all different, and of course, waking at 3am is never good. Have you tried taking a tab of enzymatic B12 just before sleep?
  5. L

    Trader Joe's kefir helped my gut enormously, perhaps with c. difficile

    Your original post would probably get more discussion (and be helpful) if you linked it to either, or both, the resistant starch or clostridium butyricum thread(s). @Mary
  6. L

    Adrenal Fatigue Link to Low Testosterone?

    And it can be the other way, too. My DHEA was very high but testosterone on low side.
  7. L

    Think I've Hit Donut Hole Deficiency?

    @Nikki7 2000mcg potassium is practically zilch. Do you mean 2000mg?
  8. L

    Building Blocks of a Disorder

    The problem may be that not many are watching this thread. You could post your question on Fredd's B12 Protocol or the Refeeding Syndrome thread and more likely get a response.
  9. L

    Building Blocks of a Disorder

    Hi Karin, Not sure how old that information is regarding those three supplements listed in your post, but it is not the order in which I started. I am reluctant to advise you on how to get started, especially given the mutations you mentioned. Fred is likely to show back up before long or...
  10. L

    Potassium and sudden frequent urination

    Hi dannybex, Well, there are exceptions to most things, but I'm guessing you're in the minority. And simply taking b12 shots is not the same as going on Fredd's protocol which as I understood the OP was the reason for taking the extra potassium. I could be missing something, though, Danny...
  11. L

    Potassium and sudden frequent urination

    Hi Nikki7, Along with replenishing water you probably know the other b vitamins and electrolytes may need some restocking as well.
  12. L

    Potassium and sudden frequent urination

    If you're on Freddd's protocol there's almost definitely an immediate need for extra potassium. Not taking it when your body begins using much more of it can be dangerous. All kind of advice can be heard here, but if you're going to trust using his protocol you may wish to defer to his advice...
  13. L

    Building Blocks of a Disorder

    Hi Lemnia, Fredd's protocol can be incredibly difficult to understand when you're first beginning. There's just so much to learn and it's not one size fits all and you're trying to figure it all out while changes, sometimes good, other times seemingly bad, are happening within you body and...
  14. L

    Could I have Babesia?

    And in my case, Banderol.
  15. L

    REFEEDING SYNDROME - The clues to healing via induced deficiencies

    @Freddd Another deeply thought out piece of the puzzle for many of us. Thanks, Freddd, for the incredible help you so freely give here. With that said, I got some questions. Not doubting what you've come up with ( too many occasions where someone apparently made quite sensible objections to...
  16. L

    Chronic fatigue syndrome/myalgic encephalo-myelitis – pathophysiology, diagnosis and treatment

    Having not read too much of this thread I may be missing the point, taking your post too literal. There is no psyche? We may be throwing out the baby with the tainted psycho babbling water. People like Carl Jung, not a small mind, would disagree, pretty sure. I think he'd say deep down, far...
  17. L

    Muscle loss

    "Huh?" Kinda funny way you said it, but I got it, a bit scary hearing that. Don't think you need worry in that extreme, though, I've had ME thirty years, and same thing, dropped weight right from beginning. Our heights are similar and my best weight was always around 160, now just under 150...
  18. L

    Raw Thyroid Glandular

    Hi Jason, whether you'd benefit from only T3 is, of course, something you'd have to figure out with your doctor. Doesn't look like more zinc would be helpful, but there's an answer to your trouble, just keep looking. I wish you well.
  19. L

    Raw Thyroid Glandular

    @jason30 It's possible you're having trouble converting t4 to t3 (some of us do) and the Thyro-Gold is simply layering the problem with added t4 you can't use. Just an idea. Have you tried added zinc?
  20. L

    GCMAF factory closed down in the UK

    You've been reading about it, have you tried it? For me, though it doesn't seem to work for all, it knocked the socks off other things I've tried. However, am among those Halycon mentioned, didn't know it was a blood product and haven't tried again. That said, I understand your skepticism...
  21. L

    Babesia treatments ?

    @duncan The good thing is you'll know what's going on. My problem was believing CDC and ruling out babesia because Lyme was supposedly unheard of in area where I live. Spent over a year chasing red herrings, ie West Nile Fever and many other more common maladies with similar symptoms. By...
  22. L

    Babesia treatments ?

    Count yourself lucky. Wish my dog would sleep, since 2012 he's not so much as taken a nap. A small pool probably wouldn't hold the sweat he's wrung from me. Yeah, sounds like your immune system fought it off, good for you.
  23. L

    BEEN OFF THE COUCH FOR 4 SOLID MONTHS! YEE HAW!!!

    The heat I've always used you'd have to switch the positions of the zero and three. Probably too hot, but I couldn't even break a sweat (in a sauna) at 103. I know some don't think the extra heat or sweat make much difference, but that always seemed counter-intuitive to me, would have to...
  24. L

    BEEN OFF THE COUCH FOR 4 SOLID MONTHS! YEE HAW!!!

    @Jacque I have a far infrared not used often, but your post may change that. It would be interesting to know the length of your sessions and the highest temp used. Thanks.
  25. L

    LED red intranasal light therapy

    I agree, have read HBOT can have tremendous benefit, and the quicker post stroke, the better.
  26. L

    Low ferritin (5) despite IV Iron

    What is said here regarding chelation therapies being 'very unproven in ME and in general' does not correlate to my experience. None of my serum levels for heavy metals were at dangerous levels. Of the untold number of therapies I've tried in the last thirty years chelation is right there at...
  27. L

    Unfolded Protein Response and A Possible Treatment for CFS

    @mariovitali How do you address biotin absorption problem? Thanks.
  28. L

    How to remove bacterial biofilm from the nose?

    @Violeta How do you plan to use coconut oil for your sinuses?
  29. L

    Cheney on Growth Hormone

    @amaru7 Any interesting results yet?
  30. L

    Clostridium Butyricum - A Game Changer?

    It was far from any 'game changer' for me, as well.