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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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Search results

  1. August59

    MRI technology reveals deep brain pathway in unprecedented detail

    This was utilizing a 7 T(Tesla) MRI scanner as well. Only a few places in the world have these, but there are a few places that have 10 - 15 T Scanners. Scanner strength and software/computing power have been playing cat and mouse for 15 years. It's definitely promising, but I'm guessing it...
  2. August59

    Has Big Pharma caused us mitochondrial damage?

    I trialed 3 different statins (not Crestor) and had to stop all 3 due to aggravated muscle pain. I already had muscle pain, but statins made it worse. Lipitor was the worst offender. I eventually went fenofibrate because my triglycerides were in the 350 - 400 range. It worked great and switched...
  3. August59

    Too Much Progesterone and Pushy People-Because it works for them, it must work for you.

    Too much progesterone, but then there is where it ends up downstream! Progesterone can take many different pathways!
  4. August59

    DH got bedridden by taking whey

    Well Wisdom Whey protein one one of my top 5 supplements. I don't take it in large amounts, but I do take it 4 times a day. It took awhile to start showing improvement, but it has been a well rounded improvement. It's not cheap, but considering the money I've spent on other supplements it's a...
  5. August59

    Alzheimers and Genes

    @garcia - Exactly I feel sure that the amyloid hypothesis was deemed more lucrative for big pharma and therefore received all of hoopla and consequently clout and major funding.
  6. August59

    Alzheimers and Genes

    Has this doctor been right all these years? Probably! http://www.pri.org/stories/2015-04-30/do-we-all-have-alzhemers-completely-wrong-man-says-yes
  7. August59

    Unfolded Protein Response and A Possible Treatment for CFS

    I believe that Dr. Baraniuk's study and Dr. Natelson's study on spinal fluid both indicated "misfolded proteins" unique to ME/CFS patients. If I can find them again I'll link them.
  8. August59

    Anyone else dread bedtime?

    I've done 2 salivary cortisol test and on the same day did a 24 hour urine cortisol. Both salivary cortisol test (ELISA) were 8am = low, 1pm = high(just barely), 5pm = high and 10pm high. Both 24 hour urine cortisol (LC-MS/MS) were "0" My endo doesn't even know how to order a the test for...
  9. August59

    Anyone else dread bedtime?

    I hate going to sleep because I know how bad I'm going to feel when I wake up!
  10. August59

    Has D-Ribose helped you? If so, what other mitochondrial supplements are you taking alongside?

    I tried it approx. 7 years ago with limited positive results, but it was not cost justified at the time. I was also taking Omega-3(fish oil), Co-Q10 and 10mg of NADH prior to starting and continuously while taking D-Ribose. The effects from NADH were insignificant as well. I would consider...
  11. August59

    The Histamine Gene rs10156191

    Why does SNPedia say it is the AOC1 gene, but 23andme says it's the ABP1 gene?
  12. August59

    The Histamine Gene rs10156191

    Definitely not a dumb question! I can read a Bangkok street map better than I can follow the SNP roadmap:rolleyes:
  13. August59

    Effectiveness of dance in patients with fibromyalgia: a randomized, single-blind, controlled study.

    I would be happy walking 75 yards to my mailbox everyday!
  14. August59

    CFS Exercise and Brain Scan Study - Upcoming CFS study with Dr. Baraniuk at Georgetown University

    FYI - This study is now taking applications and will soon begin scheduling for June 1st and afterwards. Edit: They are also offering an option for for a "spinal tap". I'm not sure if this looking for cytokines or specific proteins. My guess is it is proteins since Dr. Baraniuk's previous study...
  15. August59

    Some doctors have deep contempt for patients

    Doctors version of "Jackass - The Movie"!
  16. August59

    Rose Hips getting some attention!

    https://www.yahoo.com/health/from-breast-cancer-to-better-skin-is-rose-hip-the-115204052057.html
  17. August59

    Avril Lavigne diagnosed with Lyme disease

    WTF would be a good interim name!:jaw-drop:
  18. August59

    CFI Spinal Fluid study from Lipkin and Hornig is out.

    Could it be associated with the topic in this thread: http://forums.phoenixrising.me/index.php?threads/neurological-diseases-share-common-blood-brain-barrier-defects.36653/
  19. August59

    Neurological diseases share common blood-brain barrier defects

    Thought this was pretty interesting. I actually thought a few of the topics at this convention were interesting. I have never even heard of this convention before? http://www.newswise.com/articles/neurological-diseases-share-common-blood-brain-barrier-defects Main link to the "Experimental...
  20. August59

    Have you lost, gained or stayed the same weight?

    Most of my weight fluctuation was due to different medications that I have been placed on in the past 9.5 years since becoming ill. I was around 205 lbs. at onset and gained up to around 225 lbs. I'm now at 198 lbs and I contribute this medication discontinuation and a "carb watching" (not...
  21. August59

    Does anyone know of a pain pill without food dye?!!!

    I'm not sure if the Mallinckrodt generic brand has "food dye", but the 2 chemicals you listed don't seem to be mentioned in the "Full Prescribing Information" (attached) As mentioned earlier a compounding pharmacist can order hydrocodone bitartrate in powder form which by the MSDS (attached) is...
  22. August59

    The Medicine of the Microbiome - Townsend Letter (February/March 2015)

    By: Mark Davis, ND Appears to focus on "fecal microbiota transplantation (FMT)" (?) http://www.townsendletter.com/FebMarch2015/microbiome0215.html
  23. August59

    Gamma globulin

    To "Tag" a member, so that they will receive a notification that there member name has been referenced in a post, use the "@" symbol as prefix to there member name ( i.e. - @susank )
  24. August59

    How does a homebound person shop for a new mattress?

    This was my exact approach because it gives a durable foundation and I added initially a 2" latex topper, but this wasn't enough for myself, so I added another 2" and it works well. I'm thinking of passing along one of my 2" latex layers to my son. I want to replace it with a firmer 2" layer of...
  25. August59

    Short acting sleep meds?

    Intermezzo (sublingual zolpidem) is marketed as a sleep med that is used for people that wake up and can't go back to sleep. Regular zolpidem only has half-life of about 4 hours, so I would think a sublingual version may be a little less, but have a much quicker onset.
  26. August59

    Short acting sleep meds?

    Tizanadine works well, but go slow with dosage and find just enough to work. I went up a little to quick and it gave me terrible nightmares!
  27. August59

    How does a homebound person shop for a new mattress?

    I wasn't homebound, but not far from it. I did a lot of online research and read pinions on mattresses that I didn't even know existed. I knew I wanted something that was durable, comfortable and economical. I quickly found out that some of the most comfortable mattresses (i.e. - Pillowtops or...
  28. August59

    Are all nuts high in lectins & phytic acid? other foods?

    I definitely need to read up on this since nuts mainly and some seeds are a mainstay with me right now trying to keep glucose levels in good shaped. It's working great.
  29. August59

    Townsend Letter - This Road to Health Hell with Oxalates

    I sort of took it as a guide in which I could use to evaluate what foods I can eat, not eat and look at my other foods available to me and keep focusing on developing a diet that consist of vast amount variabilities. Of course devolping a highly variable diet sets the tone for keeping oxilates...