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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. edawg81

    Headache so I'm sick of headaches

    I got my hands on some nurtec for my migraines… seems to work slowly but lasts longer than triptans.
  2. edawg81

    Insular cortex neurons encode and retrieve specific immune responses

    “Israeli scientists tweak brains to cause illness, gaining psychosomatic insights” Terribly written summary (see comment below)…...
  3. edawg81

    Did your symptoms begin after Glucocorticoid treatment? (POLL)

    Depomedrol gave my pre ME , PVFS a flair. But it was the cold i caught 3 months later that I consider my onset.
  4. edawg81

    Should I push for Valcyte?

    Here is my advice about valcyte, this is not medical advice im not a dr. I’m just speaking from my own experiences with it If you feel you can tolerate a med trial, sure go for it (It could make you better or worse). I think its indicated for high igg of cmv and hhv6 (learner protocol). If...
  5. edawg81

    Turmeric/Curcumin poll

    Benzos, nsaids, post-migraines and sleep deprevation. none of which i really recommend on a regular basis. NAC may have helped but it made me too jittery.
  6. edawg81

    what are the options to enhance effect of benzo?

    Thank you for sharing your experience. I’m sorry to hear it did not go well. I know everyone reacts differently. Most of the ME dr protcols are based on clinical case subjective experiences since so little is still known about the pathology of this illness. In my case klonopin has helped in...
  7. edawg81

    what are the options to enhance effect of benzo?

    Check out the cheney protocol: doxepin + klonopin: both low doses https://www.healthrising.org/treating-chronic-fatigue-syndrome/drugs/doxepin-elixir-sinequan-silenor-fibromyalgia-chronic-fatigue-syndrome/ https://www.prohealth.com/library/dr-paul-cheney-discusses-the-benefits-of-klonopin-19834
  8. edawg81

    Brain inflammation

    I get this exact symptom all the time, coupled with the feeling of feverishness. Only thing that helps are cold/ice packs and time for it to pass. Sometimes advil helps if i also have a migraine.
  9. edawg81

    Does anyone else experience most of their fatigue in the afternoon?

    I sleep from 2 or 3 till about 7 or 8, then half awake for 4 hours. Good for another 4-5 hours but still partially bedridden, then crash hard from 6-9pm with feverishness and may develop a migraine. Then better till i can fall asleep. Rinse repeat. I dont have my daily crashes if i have had...
  10. edawg81

    whole spine burning, do you have it?

    i have this but it coincides with my extreme feeling of feverishness and burning sensation of my brain. I use ice packs on my neck and cold packs on my head more often than not. The burning feeling is strongest behind my head and disapears below my shoulders. NSAIDS help but only...
  11. edawg81

    Brain inflammation & temperature

    I rotate cold packs and wear them 75% of the time due to my feeling of feverishness since my onset. I found a gel pack that is very effective with velcro. This is one of the more effective treaments I have found. I try to stay away from ice packs and use cold packs on my neck and head.
  12. edawg81

    Is there any positive upcoming news???

    I prob had MECFS for years and didn’t know it. Till i got so sick I couldn’t even function. Then I was diagnosed and found my way to the MECFS community. Theres a lot of functioning people walking around with mild MECFS and probably don’t even know it and don’t know what to do, and probably...
  13. edawg81

    Could Copaxone Help Us?

    Based in his previous trials he expects the drug to work quicky in a few doses over a few weeks, unlike the rituxan trials. I would ‘guess’ he could start and end a phase 2 trial in 90 days. Correct me if im wrong, but logistics and the administrative burden seem to be the most costly with...
  14. edawg81

    POLL: Which text format do you find easier to read with ME/CFS blurred vision?

    I have some blurred vision although very minor and usually temporary, but i can read both texts fine and have no preference, so i did not vote.
  15. edawg81

    Is there consens among specialists regarding IVIG in CFS-patients?

    I heard its possible to get ivig if you fail a vaccine challenge or get diagnosed with SFN via a biopsy.
  16. edawg81

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Here are a (limited) collection of screen shots (from several presentations) from the symposium, so people have access to while OMF works on getting the full video online: http://www.mediafire.com/file/v4s6itj2dyfw1x5/MECFS18.zip/file
  17. edawg81

    Brain on Fire: Widespread Neuroinflammation Found in ME/CFS by Jarred Younger

    I have a mini fridge full of these things, they got velcro, they go on sale every few months: https://www.thebodyshop.com/en-au/body-care/accessories/cooling-gel-eye-mask/p/p000375
  18. edawg81

    Brain on Fire: Widespread Neuroinflammation Found in ME/CFS by Jarred Younger

    I always feel feverish and my head is burning, so I usually wear a cold pack 24/7 except in the rare occasions I feel better. This really seems in sync with Youngers work and similar to some of the possible treatments being discussed. I have tried Resveratrol and Tumeric in the past, I don't...
  19. edawg81

    Ibuprofen reduces my fatigue significantly

    I know this is an old thread, I just wanted to add, the days I take Ibuprofen, the next day I don't crash (like a 15% improvement in functioning), which is unusal because I seem to crash pretty hard everyday in the evening. Looking into alternatives to take daily because I only take 400mg of...
  20. edawg81

    Positive EBV Antibodies Question

    Dr Lerner, in one of his published papers (can find if you need), noted most MECFS patients are IGG positive while IGM/PCR negative. So this is a fairly common finding in MECFS. Depending on what dr/researcher you talk have different interpretations, you will either get an answer that the...
  21. edawg81

    Realistically, How Can We Find a Cure?

    We know the dysfunction in MECFS that causes the symptoms; dysregulated immune system, dysregulated energy production; dysregulated neurological and nervous system. We all exhibit different symptoms because our bodies respond differently to this dysregulation. Determining the cause of this...
  22. edawg81

    Dopamine seretonin challenge? Is my Natropathic dr nuts?

    Sounds dangerous to me. If you wanted to go this route maybe you should try to slowly taper off the AD first. I always say, when in doubt call a pharmacy, they are happy to answer questions about interactions. Good luck, i decinitely feel like i have similar crash symptoms and seritonin...
  23. edawg81

    Cortene Peptide for MECFS? "Curative"?!

    The phase 1 trial was not specific to MECFS, so we are in uncharted territory, i think its just an orphan drug, with litte reseach supporting its use in MECFS only a hypothesis. That said im all for trials with how devastating this disease is. Rumors are the (month long?) trial will be at BH...
  24. edawg81

    Cortene Peptide for MECFS? "Curative"?!

    I believe this just means approve to run a phase 2 trial, not approval to market. I’m not sure the fda has this information online or not.
  25. edawg81

    Confusion about EBV and antivirals...

    First off straight up ask the dr to test for ebv 4 titer test and cmv hh6 igm and igg. If they refuse you have several choices. See another dr. Or See a private dr that is paid to listen to you (LLMD, functional, naturpath) or Get the labs done without a script here...
  26. edawg81

    If I'm so tired, why does sleeping hurt?

    I feel the worst when i sleep well, and the best if i dont sleep. This has been going on since my onset 2 years ago. One thing that i found interesting a dr once told me patients with depression feel better temporally without sleep. Scientist are now hypthesising depression may be linked to...
  27. edawg81

    unrelenting flu feeling

    I have feelings of flu and feverishness nonstop for the last two years. Only agressive resting slightly helps. Will be trying more antivirals soon.
  28. edawg81

    How would you like the $1m donation to OMF to be spent?

    I want that *!*?#%!!!!! nano needle test in every dr office in the world after its validated as a proper mecfs diagnostic. The results of ppl testing positive for mecfs will be staggering, our health crisis will finally be quantifiable!
  29. edawg81

    Bartonella solutions other than antibiotics?

    Ive used pre mixed herbal tinxures like BLT, MC-BAR to combat bart. They havent helped me much but it was worth a try. They also make one called A-Bart but i have not tried this. A lot are based on buhner or cowden herbal protocols.
  30. edawg81

    How many hours do you sleep?

    6-7 hours with sleep meds, cant nap anymore since becoming sick.