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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. WinterWren

    Severe LDN side effects continuing even after stopping the medication?

    Sorry if you’ve already mentioned this but have you looked through posts on the Facebook group LDN for ME/CFS and Fibromyalgia (it’s a slightly longer name but that should bring it up)? I searched it and found similar experiences when I had a bad reaction to LDN. My reaction was pretty different...
  2. WinterWren

    Worried about my upcoming lumbar puncture. Has anyone had bad experiences? CSF leaks?

    I’ve had two and had no problems afterwards. In my hospital there’s an option to have a guided lumbar puncture (by radiology imaging or something like that?) which I didn’t have either time but if I ever have to get another one I’m requesting it. Honestly, I was told by both doctors that gave me...
  3. WinterWren

    CAR t-cells

    Thanks @Judee , I’m not sure that I even have a question. Maybe my question is doesn’t this sound like a possible explanation for ME? A reason why only a few people would get lucky after rituximab, their immune systems becoming more effective at dealing with EBV, but most would need something...
  4. WinterWren

    CAR t-cells

    I’m way too sick to try to reword this (below quotes from Gavin Giovannoni, a neurologist who writes about MS) but it’s adding to a lot of what’s been discussed with ME and I just want to put it out there. He’s talking about CAR-T cells and AHSCT as immune reconstitution therapies that may work...
  5. WinterWren

    My experience on plasmalogens

    Has anyone purchased this to be shipped to Canada? That’s been stopping me from trying, it’s never clear what the duties/taxes will be until it arrives and it’s already so expensive. I see two websites to order from so I’m also trying to get a discount code. Thanks for posting your experience...
  6. WinterWren

    Bad reaction NAC/Liposomal Glutathione Permanent Damage? :(

    If I were you I would also go to a doctor and try to get referred to a neurologist.
  7. WinterWren

    Professor Simon Wessely says he is misunderstood

    @antares4141 Since Wessely’s in the game of diagnosing people with psychological disorders based on his feelings about it, basically, I’d guess that Wessely has narcissistic personality disorder (one of the very low in empathy disorders). I’m familiar with a narcissist who’s often claimed to be...
  8. WinterWren

    I get really odd reactions to certain B vitamins and cofactors

    I’ve always wondered about my similar reactions. I get muscle tension, sometimes my neck from what I remember, a fuzzy head pressure and extra fatigue when I take some b vitamins on their own. B1 was the biggest problem, the bad feeling comes over me really quickly. B2 and lower dose B3 were...
  9. WinterWren

    Acetyl-Choline Overload

    It’s been a long time but I don’t remember it doing anything (or anything good, I stopped using bone broth and collagen likely because it was making feel unwell in some way…)? Interesting.
  10. WinterWren

    Acetyl-Choline Overload

    I haven’t tried glycine on it’s own, just higher amounts from bone broth? Mg glycinate doesn’t do anything noticeable.
  11. WinterWren

    Acetyl-Choline Overload

    Honestly not much, if the cause is overdoing it then I just have to rest better and wait it out. All the usual things that people do like no intense shows in the evening etc. The things I mentioned (niacin, antihistamines). Ornithine is really making me feel sleepy and that’s rare, so it’s...
  12. WinterWren

    Acetyl-Choline Overload

    Yeah lots of things can make me feel that way! Overmethylation especially. Sometimes taking no supplements at all and just from doing too much. Or histamine.
  13. WinterWren

    Acetyl-Choline Overload

    Yes but I kind of threw everything at it so I don’t know what really helped me! Bad habit of mine. Plus my memory has tanked lately, it feels more like dementia at this point. So I can’t really remember the order I tried things, but Reactine helped a bit at night, I started taking niacin during...
  14. WinterWren

    Article Dr. Natalie Eaton-Fitch Discusses Repurposed Drugs and the Treatment of Myalgic Encephalomyelitis (ME)

    I wonder if the reason some feel better for a day or so when they get a cold (for me the day before) is because the virus stimulates TRPM3 ion channels. 🧐
  15. WinterWren

    Hormones, HRT and Estriol

    Curious about trying an estriol cream, is what you use a prescription or just over the counter? Progesterone cream alone makes me sleep non stop and dizzy. Pregnancy by second trimester (when estriol kicks in) puts me into remission.
  16. WinterWren

    The absence of IDO upregulates type 1 IFN production, resulting in suppression of viral replication in the retrovirus-infected mouse (Hoshi, 2010)

    https://www.jimmunol.org/content/185/6/3305 Old paper but it made me wonder about a lot of things, like what would happen if they used mice without IDO and gave them other viruses. Or did these mice behave differently before they died. They had increased type 1 IFNs and fought off the virus...
  17. WinterWren

    ALS linked to Cyanobacteria and HERV-K

    I just checked back on this thread and noticed you replied. That’s terrible about your coworker... I was born in ‘84 so things have come along way but working in the field I still had enough of the sexism. Old school attitudes about everything. Plus being exposed to sometimes who knows what...
  18. WinterWren

    Metabolomic Evidence for Peroxisomal Dysfunction and Dysregulation of the CDP-Choline Pathway in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    I didn’t know which thread to post this in… but I’m trying to learn more about peroxisomes after reading Cort’s latest (March 3, 2022) article on the Limpkin preprint. I thought this was interesting as I couldn’t find much about possible therapeutics: - Therapeutic developments in peroxisome...
  19. WinterWren

    A treatment that helps me tremendously

    Oh and I have in my notes that tanning in the sun can strongly inhibit Th17 responses. ?
  20. WinterWren

    A treatment that helps me tremendously

    To add my experience; I have very low vit D, supplements (mega loading at first) raise it but this doesn’t make me feel any different, a tanning bed makes me feel better the next day (pretty convinced), and I always feel better in summer but not drastic improvement. I tan outside in the summer...
  21. WinterWren

    Severe headaches for 2 mths ...help.please.

    That’s great you’re feeling better :) My concerns are mostly based on bad past experiences with antidepressants and other prescriptions. Being messed up long term from them. Plus, my doctor actually prescribed 25mg a day so it’s good to know I can talk about a lower dose!
  22. WinterWren

    Severe headaches for 2 mths ...help.please.

    @Emmarose47 I was just wondering if you’re still having success with amitriptyline for your headaches… I’m considering starting it but I’ve had the prescription for almost a year unsure about what to do! I have trigeminal neuralgia (tn2) headaches that can last months and I’m going crazy.
  23. WinterWren

    Acetyl-Choline Overload

    Hopefully something helps you, I’d be interested to hear how hydroxyzine works if you try it. It’s a precursor but there’s also free choline in the brain (and other choline containing compounds). I don’t know anything about it really, but I remember a researcher (Jarred Younger I think) talking...
  24. WinterWren

    Acetyl-Choline Overload

    It sounds like you and I have similar reactions to supplements and I’ve been trying to figure out my insomnia lately too, which started with me taking a prescription that enhances cholinergic transmission. So, that led me to suspect acetylcholine but it‘s confusing because in the past, things...
  25. WinterWren

    ALS linked to Cyanobacteria and HERV-K

    Interesting. I wish we could survey everyone who worked in such an environment. I was taking fresh samples and getting them to the point of preserving, etc. I don’t remember a lot but I remember the smell of cyano 🤢
  26. WinterWren

    ALS linked to Cyanobacteria and HERV-K

    I’m just going to put this here, sorry if there’s a better place. https://multiplesclerosisnewstoday.com/news-posts/2022/01/31/top-line-data-likely-march-protect-ms-trial-temelimab-relapsing-ms/ It’s pHERV-W targeted by temelimab so different family of HERV. No connection to cyanobacteria...
  27. WinterWren

    Neuroinflammation in Long Covid

    @Pyrrhus thanks for collecting and posting so much about this topic. So as far as ideas go about what might be happening in the covid infected brain… There’s the two FDG-PET studies you posted about a hypometabolism in multiple parts of the brain, there’s the Olivarria paper that demonstrated...
  28. WinterWren

    Epstein-Barr Virus Found to Trigger Multiple Sclerosis (ScientificAmerican)

    https://www.hsph.harvard.edu/news/press-releases/epstein-barr-virus-may-be-leading-cause-of-multiple-sclerosis/ Now, if they can just figure out what’s going on with EBV… :aghhh: hurry research!
  29. WinterWren

    ME/CFS and MS

    Dr. Elem Tremlett (UBC MS researcher) did the first large study about the prodromal phase of MS, fibromyalgia was found to be a part of it. I notice a lot of people with MS have fibro. I have MS and ME.
  30. WinterWren

    Vision Loss with PEM

    Have you been checked for optic neuritis and MS?