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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. rebar

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    I can't find the study nanonug, it was a rather scattered search and its not coming up in history. It is a possible side effect, at this point I don't know how significant. I've run out of energy so I'm going to take a break. This came up immediately...
  2. rebar

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    @Hip, I just googled depression and Sodium Dichloroacetate, it is definitely linked one study used the word significant, so for now I'll wait. When I crash it can trigger depression, not always but often when I feel pressure in my head and neck. I assume it's triggered by inflammation.
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    Healthy food makes me worse...?

    No, I started with probiotics but with limited success. Most do not populate and are totally eliminated within a day or two. I believe there are only a couple of probiotics that are human sourced and do populate. Mutaflor and Symbio-Flor 2 are the only ones I know of that do. With any start low...
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    Healthy food makes me worse...?

    Gut Biome, the good the bad and the ugly. Different types of bacteria digest different foods. They compete for space by displacing contenders. Completely different groups digest big Macs from those that work on broccoli. When altering the biome by food choice negative symptoms can increase...
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    A new album about Chronic Fatigue Syndrome by Charles Ortleb

    I just listened to the first two songs on the album, beautiful and moving. They seem to really get it.
  6. rebar

    resistant starch 4

    thanks, I may have found one. Most all out there is for industrial use and sized accordingly, at 50 or 75 lb. bags. I located modified resistant wheat starch in a 2 lb size.
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    Tolerable Antidepressants

    Dosing is generally much higher than what was recommend to me and what I eventually took. Bi-polar seems to be around 200mg. Yes you should pay attention to the possibility of a rash developing. I don't know if it's dose dependent or not. I paid attention, stayed out out the sun, and was fine...
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    resistant starch 4

    Anyone know a source for RS4?
  9. rebar

    Tolerable Antidepressants

    I didn't read everything, but if yours is cyclical as mine is, never manic, more like what I experience with ME. Not seeming to be linked to anything just phasing in and out. I went through most of the SSRI's, didn't work well at all. A very well respected Pharmaceutical Psychiatrist in NYC...
  10. rebar

    what is behind alcohol intolerance?

    I've been both, years ago it helped some symptoms, no longer I'm completely intolerant. A small sip of wine has me feeling very ill within 5 minutes. I believe it will be linked to the gut biome, and changes there.
  11. rebar

    I'm going on a mission! wish me luck

    Please don't.
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    Am I really getting better?

    Adam do you know about Ken Lassessen, I started to use his recommendation about a month ago, all his information about altering the gut comes from pubmed. It's a very reasoned out approach. Herbs to diminish the unwelcome overgrowth and proper probiotics to reset. There is a great deal of...
  13. rebar

    Am I really getting better?

    I afraid I completely disagree with Tanlaaust, alcohol helps some, there are post about this here on PR. If you have or have had PEM, and also pots then there aren't many illnesses that share those two symptoms and certainly when you add in your other symptoms. I celebrate in your improvement...
  14. rebar

    Severe Brain Fog after using Probiotics

    read up on Ken Lassesen's site, our gut biom is way out of wack, there is a balance that needs to be addressed. You should be careful with selection when choosing probiotics, Probiotics can cause herxing, which is not necessarily a bad thing. It could mean a good type is displacing a less...
  15. rebar

    mental performance

    It's nice to see this discussion, I've long dealt with short term memory issues, I love to read and process the information well with good retention, in a general way, but I can't remember specifics, the name of the book, the author. Alex mentioned problems with math. I went through a phase...
  16. rebar

    A very odd thing just happened to me

    I can not imagine the CDC makes random calls, out of the blue for participation in a survey. Does not make sense. The call was a set up for some type of solicitation.
  17. rebar

    Ben and Claire's adventure to Davis-Dafoe land!

    Ben thanks, you are an inspiring guy. Your natural optimistic spirit shines. I hope all goes well for you.
  18. rebar

    BBC: Research in Norwich could offer ME/CFS breakthrough

    Hi deleder2k what is the current protocol for dosing. The initial dose is a series isn't it, and the following are how often? With travel from NYC it really has to be closely planned.
  19. rebar

    Oleamide for sleep

    Also as Helen mentioned the Liftmode site, good products and information.
  20. rebar

    Oleamide for sleep

    I tried it , didn't work for me. Didn't notice any effect. Tried all of Mary's list no go for me. I'm now on L-tryptophan, about 2g, and when I wake at 12 to 1 or so I take half of a 10mg ambien. I get 5 to 6 hour a night, usually closer to 5. It's been a particularly difficult problem for me...
  21. rebar

    Releasing molecular brake allowed damaged neurons to regenerate

    https://www.sciencedaily.com/releases/2016/10/161007084632.htm
  22. rebar

    "You Can't Ignore ME NOW"

    To win the media game you have to play it. I admire her courage!
  23. rebar

    Links to media coverage of the Naviaux study (Aug 30, 2016)

    thanks for the laugh, and we think we have problems!
  24. rebar

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    thanks for all your effort Ben.
  25. rebar

    Higher Dementia Risk Linked to Some Common Medications

    Thanks for the update Arc. I didn't see seroquel, (quetiapine) and have seen it listed as anticholinergic.
  26. rebar

    Jen Brea giving TED talk on 27 June

    I'm disappointed.
  27. rebar

    Primary Care and ME Specialist Wilmington, NC

    No, I'm the only one and I don't know of anyone in south eastern NC who does. I haven't lived there in a long, long time. I will ask around, several of my family are in health care.
  28. rebar

    Primary Care and ME Specialist Wilmington, NC

    I'm from Wilmington and have family still living there, I've never heard of anyone specializing in ME in Wilmington.
  29. rebar

    Looking for a relatively safe laxative

    Long term problem for me, most likely SIBO. My solution lately has been 10 to 12 oz of prune juice right before bed. Only works for me every other night, so I skip, and take it accordingly. I keep waiting for it to stop working, as most everything else has, but for 6 months success.
  30. rebar

    Coffee,, yes or no

    Like Gondwanaland I cycle, in the past I was a massive coffee drinker, but alas now, at times, it can cause several problems including a significant rise in BP.