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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. SwanRonson

    SIBO and ME/CFS similarities ......

    I've been down the SIBO path quite a few times since getting sick. The problem with the entire hypothesis is that nobody knows if those gasses were already present before the illness. I'm not aware of a single A-B comparison where someone had a breath test done before getting sick, then...
  2. SwanRonson

    Chronic Constipation - Gilbert's Syndrome, Bile Acids, Milk, Elobixibat

    To be clear, I'm not saying that VitC caused my CFS. I'm saying that the gastritis that resulted from the Effer-C I was taking started the chain of events (Gastritis->Stress->Shingles->CFS). I do still take VitC. I just use the LivOn liposomal packets now. I used to take Taurine, but I...
  3. SwanRonson

    Chronic Constipation - Gilbert's Syndrome, Bile Acids, Milk, Elobixibat

    CIC = Chronic Idiopathic Constipation I’ve done Ascorbic Acid in mineral water before. It worked great until it gave me gastritis, which led to shingles, which led to CFS. In a roundabout way my CFS started with Ascorbic Acid water for constipation. I’ve been scared of it ever since. It’s...
  4. SwanRonson

    Chronic Constipation - Gilbert's Syndrome, Bile Acids, Milk, Elobixibat

    I've been researching the newly approved Japanese drug for CIC called Elobixibat. It's an ileal bile acid transport (i.e. re-uptake) inhibitor. I dug into this a bit and found that people with Gilbert's syndrome, like myself, usually have reduced bile acid output because of the UGT1A1...
  5. SwanRonson

    what would the perfect b-complex look like?

    I've started using washout periods more often. Just cold-turkey all the supplements and see how I feel after about 3 days. Of course, some things take longer to wash out than others, like Vitamin D. Long half-life on that one.
  6. SwanRonson

    Vitamin D supplementation causes worsening of symptoms?

    I wrote 1,25OHD meaning total D3. Sorry for the confusion. If parathyroid is within normal range I wouldn't supplement without doing more research. That podcast is a good place to start. You could have hereditary reasons for a lower D3. You really just might not need it. IMO, supplementing...
  7. SwanRonson

    Vitamin D supplementation causes worsening of symptoms?

    https://drruscio.com/how-to-determine-what-your-optimum-level-of-vitamin-d/ There’s nothing wrong with you most likely. I have this reaction too. Listen to this podcast. The bottom line is you don’t want to supplement vitamin d based solely on a 1,25OHD test. You also need to test parathyroid...
  8. SwanRonson

    options for testosterone off-insurance

    Are you happy with this protocol in general?
  9. SwanRonson

    options for testosterone off-insurance

    I've been afraid of that. Just replacing hormones seems like a roll of the dice since your body's equilibrium has it down for a reason. That's why I wanted the gel and not the shot or pellet since I could start really low and see what happens before doing something that would rock my world for...
  10. SwanRonson

    options for testosterone off-insurance

    My testosterone (free and total) is always low or just barely within normal range each time it's checked. The last time it was checked it was 105 (ref range starts at 100) so insurance wouldn't cover the prescription for Androgel. Does anyone have experience/recommendation buying testosterone...
  11. SwanRonson

    does stomach acid kill probiotics? SIBO conundrum

    Thanks for the thorough post. It's actually that blog that got me back thinking about probiotics again. I had given up on them as dangerous and/or ineffective a few years ago. I've been eating Bubbie's sauerkraut recently and it has definite effects. So, I'm going about this slowly with much...
  12. SwanRonson

    does stomach acid kill probiotics? SIBO conundrum

    My thinking: Stomach acid (ideally) should kill any bacteria that comes through. Obviously that doesn't work 100% of the time because food poisoning/travelers diarrhea is a thing. But, is that controllable? Like, how could you force probiotics through the stomach unharmed? Maybe by taking...
  13. SwanRonson

    why do kids sleep so well?

    Do you have any further info on this you could point to? I'm cautiously experimenting with gut biome right now.
  14. SwanRonson

    Constipation: Lactobacillus Reuteri study

    That’s my understanding as well. I found another study yesterday saying basically the same thing. I’ll find it and link it tomorrow.
  15. SwanRonson

    Mountain View Accommodations

    We looked at a lot of Airbnb before we went. They were all more expensive than just a hotel. There’s no getting around the fact that mt. view is one of the most expensive places to live in the country. Stinks, but it’s a beautiful place that’s for sure.
  16. SwanRonson

    why do kids sleep so well?

    Forgive the naivety of this question, but I always wish I could sleep as well as my kids do. My teenage boy and 7 year old daughter sleep for like 10-12 hours a night. What is going on with them chemically that allows such long, deep sleep?
  17. SwanRonson

    Mountain View Accommodations

    We stayed in the Super 8 on El Camino Real: Google Maps Link. It was the "cheapest" of the decent hotels. You won't find a clean hotel anywhere in that area for less than about $150 unless you get really lucky. I just looked at my budget from then (2016) and we paid $148 per night.
  18. SwanRonson

    Constipation: Lactobacillus Reuteri study

    No, I never tried it. Honestly I forgot about this. lol. I read so many articles per day I tend to forget stuff. This looks like the right stuff: https://www.amazon.com/BioGaia-Probiotic-Chewable-Tablets-Count/dp/B001XUQNN4/ I'll buy some and try it. I'm in a fermented food phase right...
  19. SwanRonson

    enzymatic therapy still best?

    I bought another bottle of Enzy and still feel the same response to taking it, so I'm guessing the formula hasn't changed.
  20. SwanRonson

    enzymatic therapy still best?

    Is the Enzymatic Therapy B12 Infusion still the best formulation for most? I keep buying it but noticed the label changed recently.
  21. SwanRonson

    digestive enzymes

    @Valentijn @perchance dreamer Any worries about dependency? I've been taking enzymes on and off over the last couple of years and they really help but I see conflicting info about dependency on them from long term use. Any advice?
  22. SwanRonson

    mutaflor source in the U.S.

    I never followed up on it. I'd love to know about it as well as I've always wanted to try.
  23. SwanRonson

    Constipation: Lactobacillus Reuteri study

    I've been seeing the pubmed stuff on that drug. I tend to give constipation drugs plenty of time in the market before considering them. They have a fairly nasty track-record with being pulled. Hope this one is different.
  24. SwanRonson

    Constipation: Lactobacillus Reuteri study

    Just saw this in my news feed. Anyone have knowledge of this bug? Link: https://www.ncbi.nlm.nih.gov/pubmed/28429333?dopt=Abstract "RESULTS: Four weeks of L. reuteri administration was associated with a significant decrease of mean CH4 production determined by LBT (from 20.8 ± 15 to 8.9 ±...
  25. SwanRonson

    Slow Transit Constipation...... no pain just no movement

    @slowmot Couple of questions: 1. Do you respond to Miralax? 2. What does an average day of eating look like for you? For instance, a typical day for me would be: Upon waking (6:30am): 1 cup of mineral water and 2 cups of decaf coffee with organic heavy cream (no carageenan or other gums)...
  26. SwanRonson

    Slow Transit Constipation...... no pain just no movement

    How much 5-htp? Also, what form of vitamin C? I've had success with vitamin C before but only with the powder and ended up gettting gastritis.
  27. SwanRonson

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Not long. About a week I think.
  28. SwanRonson

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Not always. Only if it's constipation dominant. Otherwise it's just rifaxamin I believe.
  29. SwanRonson

    Oleamide for sleep

    Does the same thing apply to Niacinamide?