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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. out2lunch

    Metabolite Produced By Gut Bacteria From Pomegranates Reduces IBD

    I'm curious as to why you tried that brand instead of Mitopure? I'm relatively new to the science behind urolithin A. I only found out about it via a Dave Asprey email. Dr. Mark Hyman is quoted as liking Mitopure on their website, so it makes me think there's something to this. Stuff costs $100...
  2. out2lunch

    Mycotoxin-Is this a worthwhile pursuit?

    Diflucan in low doses, but only for a month or two.
  3. out2lunch

    Mycotoxin-Is this a worthwhile pursuit?

    Yes. Do the test. I did, and I was swimming in mycotoxins, especially ochratoxin a and some trichothecene from black mold. I did cholestyramine once a day before dinner for two years. It dialed down my symptoms considerably, including my severe chemical sensitivity. It definitely improved my...
  4. out2lunch

    Check this out!

    I did the CPET test at the Pacific Fatigue Laboratory (now Workwell) over a decade ago, and my aerobic metabolism is gone. My anaerobic threshold sits at 93 bpm; it takes very little exertion for my body to drop into anaerobic mode. Which I believe will make the Lumen device virtually worthless...
  5. out2lunch

    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    How did you find a clinic willing to give you, an adult, the pediatric vaccine? My specialist doesn't give vaccines, and we can't find any clinic that's willing to give pediatric vaccines to adults. Thanks!
  6. out2lunch

    20 patients now found positive for CCI / AAI, there must be many more...

    Does anyone have any further info on this? I was part of Ron's nanoneedle study (I live in San Francisco and have several doctors at Stanford), and Julie mentioned that one of the blood vials was going to be tested for EDS genes because of my HEDS diagnosis from many years ago. That was back in...
  7. out2lunch

    intermittent fasting study

    Has anyone here done protein cycling (PC) with their intermittent fasting diet? The purpose of PC is to increase autophagy, which I thought was something our bodies didn't do very well with ME/CFS. Thanks! :nerd:
  8. out2lunch

    B6 VITAMIN PROBLEMS

    Very late to this party. But my latest blood work is the first time I've seen elevated serum B6. In the past, I've been deficient along with other B vitamins after gut illnesses tanked my parietal cells. It was discovered as the cause of my iron deficient anemia. Anyway, my level is four times...
  9. out2lunch

    Clonidine

    I started taking it at the beginning of this month for my ADHD. I also had mild hypertension which the clonidine has lowered to normotensive levels. I take it in the morning, some days I also take a small amount of modafinil with it if I need extra help concentrating. I like the way clonidine...
  10. out2lunch

    Ron Davis: Preliminary data shows problems with energy metabolism

    :woot: Hmm. Food for thought. I'm now wondering if mine was caused by viral meningitis. Worst illness of my life. Left me with nerve root clumping in my lumbar spine. And brain stem damage? Very likely. I ran a fever of 105° for two days. Probably cooked it good. :eek: I wonder how many...
  11. out2lunch

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    I don't believe they're doing that anymore, since that wasn't an option given to me. Or perhaps they didn't want to do it, given that I'm not having sleep drop attacks like my aunt to used to have. The symptoms are mainly bothersome in terms of functionality. They're rarely dangerous, with...
  12. out2lunch

    Narcolepsy confirmed as autoimmune disease

    I realize this post has aged a bit, but this addresses my issue with narcolepsy/cataplexy symptoms I've had for decades. (BTW… my symptoms did not go away with GF diet.) My MLST was also negative; quick sleep onset but no REM. And I've been told lack of REM means I don't have...
  13. out2lunch

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    Thanks!
  14. out2lunch

    Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

    OK. This is very important for me because I'm back on modafinil thanks to additional stress in my life right now that's brought back my narcolepsy and cataplexy symptoms. I would like to segue to a related issue concerning the terrible dance between ME/CFS/FMS and narcolepsy/cataplexy. Quick...
  15. out2lunch

    Holy crap -- IgM deficiency

    I've thought about Rituxan. But I'm not sure I could afford this without Medicare. And I'm pretty sure they wouldn't approve it for ME/CFS or SIgM Deficiency. :(
  16. out2lunch

    Holy crap -- IgM deficiency

    :whistle::lol::nervous::rofl: Actually, I suspect that number is much higher, more like 100/10,000. And I'm basing that on... … this. Autoimmune diseases are on the rise. Big time. So if IgM deficiency stems from autoimmune syndromes, then 3/10,000 is way too low.
  17. out2lunch

    Holy crap -- IgM deficiency

    Jaime: I'm going to bump this thread with your post because I'm in the same boat regarding immunoglobulins. And I strongly feel these protein anomalies are connected to the blood flow/viscosity issues we're currently discussing on the other thread. I haven't had my IgM and IgG tested for two...
  18. out2lunch

    Low Sed Rate = Hyperviscosity?

    There you go. ESR in the basement but serum viscosity is normal. So if the blood isn't flowing well through the plumbing… does the problem lie with the red blood cells? Are they damaged? Less flexible? Too sticky? And that's why heparin works, because it thins up the liquid part of the blood...
  19. out2lunch

    Low Sed Rate = Hyperviscosity?

    That totally sucks! :grumpy: I think y'all can count me into this club: the ME/CFS folks who believe that circulatory problems are a major component to our illness. And how frustrating that this issue seems to get very little respect in the medical community, either from the practitioners or...
  20. out2lunch

    Low Sed Rate = Hyperviscosity?

    Funny you mention Berg and Hemex. I had my blood drawn there, well over a decade, when visiting my mom in AZ. (Very cool wall of photos of new moms and their newborns who did the hypercoag treatment thing for infertility!) Anyway, that was my first ISAC, and I was mildly hypercoag. So I did the...
  21. out2lunch

    Low Sed Rate = Hyperviscosity?

    Lack of funding. :( 'Tis the ME/CFS chronic heartbreak. :cry:
  22. out2lunch

    Low Sed Rate = Hyperviscosity?

    It's been six months since someone posted to this thread, but I think it's a worthwhile topic. The OP inquired if anyone had done both ESR and viscosity testing. I recently did ESR and serum viscosity testing, both of which were low. My ESR, like most ME/CFS folk, has always been under 4...
  23. out2lunch

    Naviaux Study Info Imbeded In Collaborator's Blog Post

    I think you might have touched upon the reason for the small sample size of the original study (43 subjects): differentiating between ME/CFS patients and Lyme patients. The GMA patient base is largely comprised of Lyme and rickettsial patients, which is to be expected since they're located in...
  24. out2lunch

    Secretor status

    Thanks for the info! And clearer perspective!
  25. out2lunch

    Secretor status

    I'm going to bump this thread. My doc and I are having this very discussion right now, about FUT2 SNPs and gut issues. Sterling Hill recently released another blog entry about the "most important genes" on her latest variant report. FUT2 is one of them: FUT2: The 3 major FUT2 genes that seem...
  26. out2lunch

    Lyme gender study

    There has been a very well established connection between fibromyalgia and endometriosis. And long-term use of BC pills is similar to the constant estrogen barrage that endo patients suffer from. Many women, such as myself, struggled with endo issues for years before developing fibro. Especially...
  27. out2lunch

    Temporary paralysis I need your Insights

    As I was reading the thread, this thought came to me as well. Many years ago, I experienced episodes of severe cataplexy, in which I would drop like a rag doll and couldn't move my extremities; just my fingers, toes, and eyelids. In all instances, extreme emotions brought them on, typically...
  28. out2lunch

    What is Functional Medicine by David Brady

    This thread was created over six years ago, but I'd like to resurrect it, given that Dr. Brady has a new book coming out next month (The Fibro Fix), along with an online healthcare summit about fibromyalgia. (I'm guessing the online summit is mostly to promote his new book.) At the risk of...
  29. out2lunch

    Quest Diagnostics recent blood test show high Osmolality

    If you're like me and a whole host of other ME/CFS patients… you might have ADH deficiency. Without sufficient amounts of Anti-Diuretic Hormone in your system, you'll be perpetually dehydrated. Dr. Paul Cheney and Dr. Ritchie Shoemaker have addressed the ADH conundrum in their research. Most...
  30. out2lunch

    "I live in a van DOWN BY THE RIVER!!"

    And Melissa McCarthy totally nailed Farley on the 40th Anniversary Special! LOVE IT! :woot: