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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. E

    Vinpocetine For Brain Fog/Anxiety Might Not Be a Good Idea

    Necro thread alert! :ninja: But I started taking Swanson Gingko with Vinpocetine a few weeks ago, first once a day, then upped to 3x a day (so 15mg Vinpo per day). Then I had a really bad crash. Like, not just exhausted (though at first I thought it was just another bout of exhaustion) but also...
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    'The Science Isn’t Settled on Chronic Lyme' by Rehmeyer and Dusenberry

    Great article. I had a bulls-eye rash documented by my GP. My IgM showed Lyme-specific bands. But...my IgM never switched over to IgG, even a year later. So all the doctors say is mumble mumble "false negative?" mumble mumble "who knows?" (go away). Freakin' insane.
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    Article about new potential treatment by Victoria Bohne, in Norwegian

    I'm interested at the similarity between this treatment and the Wahl's protocol. My first thought when reading Wahl was "Holy oxalates, Batman!" My other thought was, like Wahl, whether the treatment works because of the reasons they think it does. Or if it works for a different reason...
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    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Yes, I guess it sounds sorta like hypoglycemia. But with SS there's more mania and "manic-buzzing." It feels like you're about to actually spontaneously combust. Without the experience from the Tramadol, I might not have known what was happening. But it was definitely SS. Years ago, before we...
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    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Okay, now I'm feeling a bit better. I wasn't feeling too well this whole past week. I thought at first that I was just still exhausted. But then I also wasn't sleeping well. Had a hard time falling asleep, then would wake up between 4 and 6 am completely dead tired but unable to get back to...
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    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Ok. Even natural serotonin is still BAD. For me. I'll post more when I stop feeling so sick.
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    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Yeah, though I don't eat a lot of fruit. But this past week I had some. So maybe that also factored into my crash. So you don't personally recommend a diet that includes potatoes, rice, and spinach? :cool: I'm not sure about those things either. Or the insulin response required for tryptophan...
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    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    I really like meat. Though I also like chocolate... oh yeah, that's not meat. Lol. Anti-allergic - interesting. You know, I've always been a fan of anti-allergy medicine. As a kid I would sneak swigs of Benedryl when it was in the medicine cabinet. It just made me feel better. Rational adult me...
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    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Okay, sorry. my flare yesterday and posting from bed on my kindle made me a bit confused with my previous posts. Trying again: Okay. so the food list. It looks like it's an overlay of food that is 1) High in tryptophan. 2) No fructose (except almonds, I guess the tryptophan outweighs the small...
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    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Oh, right. They also exclude lactose because.....it might be like fructose? Okay. Hmm.... so quitting fruit caused remission or your muscle pain et. al. Interesting. Did you trial cutting out all fructans?
  11. E

    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Hmm...having a flare right now, and trying this is appealing to me. Wondering about the food list though. Plain Greek yogurt? Coffee? Butter? Coconut oil? I found this list of fructose foods https://www.healthhype.com/nutrition-guide-for-fructose-malabsorption.html. All those things seem okay...
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    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

  13. E

    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    Interesting. My primary diagnosis is FMS. Though I seem to be sensitive to serotonin. Last year I was prescribed both amipitryptiline and tramadol and after a few days I got nasty serotonin syndrome side effects. Not life-threatening bad, but bad. I stopped the tramadol and have kept the...
  14. E

    My Thyroid experiment (Ongoing)

    I take a "thyroid support" supplement ( nutraWest total thyroid 2) and found that taking it at night severely messed up my sleep. There's research that taking thyroid supplements at night is better, but not for me I guess. Maybe move it to a.m.?
  15. E

    Promethease--homozygous for AMPD1. I need D-ribose?

    I'm C;T. Promethease says that is 20% prevalence. Before getting chronically ill, I was always quite active. Well, I wanted to be active. I liked doing hikes and biking and did some running and so on. But...yeah, I always seemed to tire quickly. No matter how much I did, I just didn't have as...
  16. E

    23andMe testing looks like it will finally be completed soon. Tips on where to send the raw data?

    Promethease now appears to be $10. Not a big difference, though. :)
  17. E

    How to detox...

    No one? Or just you? I watched it. And got a lot out of it. Pretty sure I'm someone.
  18. E

    How to detox...

    Did you watch the video? You don't have to buy the program. In fact, I think he "gives away" the main keys of his program in the video.
  19. E

    How to detox...

    Interesting video about detox. Lots of good points.
  20. E

    Ehlers Danlos Type 3 Hypermobility - Do you have it?

    Okay, reading all this through,and mulling it over. Very interesting. I think Rowe's research explains a good bit of the underlying pathology for my condition. Which is something I've been puzzling over for a while now, so thanks all. As background, I never considered myself very bendy as a...
  21. E

    Muscle soreness after sauna?

    Thanks for the ideas all. But I feel like I already do drink enough, that's the thing. Yesterday I did the sauna again (more than 48 hrs since the previous session I mentioned in pp) and drank .75l of my homemade tonic (which also includes coconut water, forgot to say that in pp) and then .75l...
  22. E

    Muscle soreness after sauna?

    Wondering if anyone else gets sore muscles after spending time in a sauna, or if it's just me. To be clear, I don't know if I have CFS. I officially had (had?) Lyme and now fibromyalgia. Hyperthermia is one route of chronic lyme treatment, and saunas are also supposed to be good for FM, so I've...
  23. E

    Homemade Health Tonic

    I was just reading yesterday about the original health tonic - tonic water. It's actually surprisingly useful, as long as you don't down so much to poison yourself But that goes for a lot of things, many common plants we eat are poisonous in large amounts. It might make a good "base" for the...
  24. E

    Fibromyalgia as tight muscles

    This site about RLS also mentions some other dopamine stimulators (like Mucuna Pruriens) that might be helpful to try, maybe?
  25. E

    Fibromyalgia as tight muscles

    I've read that magnesium malate is supposed to be good for fibro. I'm having some issues finding it here in NL, but I suppose I can take Malic Acid with my MagCit? The malic acid and magnesium are supposed to be good for the muscles. Calcium and potassium are also good for muscles. I'm...
  26. E

    Fibromyalgia as tight muscles

    Systemic pain (particularly muscle pain) without inflammation, is the basic definition of FM. If your doctor did actually think you have peripheral neuropathy he should have sent you to a neurologist for a full nerve conduction test. PN is serious. I started taking the amipiltriptyline when my...
  27. E

    Fibromyalgia as tight muscles

    ALA = Alpha Lipoic Acid EPO = Evening Primrose Oil I can't think of anything else in particular that changed.
  28. E

    Fibromyalgia as tight muscles

    Yeah, I kinda shuffle-walk. During my last (and never again) PT, I was made to walk "properly" for 8 minutes, and it gave me heel spurs and nearly tore my achilles. I told her everything was tight, but I guess she thought she could know my body better than I did just by looking at me???? Stiff...
  29. E

    Fibromyalgia as tight muscles

    I've only had TSH measured. But it's moving, I think. March, 2018: TSH 1.8 (ref. 0.27-4.2) July, 2017: TSH 1.6 May, 2017: TSH 3.45 November, 2016: TSH 2.39 I'm not sure why there was the drop in 3 months from 3.45 to 1.6. I was taking ALA in those months, I think. And maybe EPO as well. Don't...
  30. E

    Fibromyalgia as tight muscles

    I've started taking Nutri-West Thyroid 2, which has selenium and a bit of thymus gland. Though I realized this morning it has folic acid (not folate). Oh well. My other supp also have some selenium. Looked up Low T3 syndrome. I've never had my t3 measured. Are you talking about Euthyroid sick...