• Welcome to Phoenix Rising!

    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. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    These are some awsome changes, @alicec, congratulations! And thanks for sharing your results. How long did you have to wait for them?
  2. Sleeping Beauty

    Is Anyone Else Scared of Rituxan?

    To get back to Rituximab, I really think each person has to do a cost-benefit analysis for themselves. By 'costs' I don't just mean financial costs, just as I am obviously not talking about financial benefits alone. And it all boils down to how sick you are. @Sidereal talked about this earlier...
  3. Sleeping Beauty

    Clostridium Butyricum - A Game Changer?

    @JPV if you also have POTS, sauna is a bad idea.
  4. Sleeping Beauty

    Clostridium Butyricum - A Game Changer?

    I have had a similar experience with AOR3. I have severe ME and have dealt with tooth-related problems for most of my life. Root canals, infections and cysts at the end of root canals, I have had it all. Read about @Sidereal's problems with AOR3 on the main thread after having ordered it, so...
  5. Sleeping Beauty

    KPAX Synergy (methyphenidate/Ritalin) trial results are out

    From a statistics point of view, the sample size is relatively small. A bigger study with a similar distribution of outcomes could easily lead to statistically significant results. The 9-point difference is quite large.
  6. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    I will respond to other posts later, too tired tonight. Just wanted to say, though, that I wish I could like your post 1001 times, @Asklipia ! You always know how to put a positive spin on things. Thanks for that :balloons::beer::heart:!
  7. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    @ariel It is not as big a move as it sounds. Literally, on the contrary: my mum has come to live with me for the last 5 months and has to go back home soon. I would have to move back to Europe from North America (after 20+ years), so wriggling my way through on my own for a while again seems to...
  8. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    I was referring to these posts (two of which appeared on page 132, of course, sorry!): These posts nicely summarized and crystallized prior developments in the thread (and in the thinking of Chris Kresser, Tim Steele, and others promoting RS, if I recall correctly). At least for me they did...
  9. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    What do you all think of this part of my 'bad' post (slightly edited):
  10. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Please, everybody, keep in mind my qualification: 'for lack of a better word'!!! 'Lost in translation' might not directly apply here, but I am ESL (English as a second language, might be a Canadian term). I didn't mean to offend or attack any one in particular. As I said in my next post, I...
  11. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    I had slowly worked my way up to 2 level tbsps twice daily and promptly crashed. My stomach is super sensitive and I am nauseous after pretty much any meal. I also have really bad IBS-D. But this was different and I decided at the time it might be a sign of SIBO. I then tried different...
  12. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    @Hip I have been using Miyarisan for about 3 weeks now. I am taking 4 tablets 2-3 times per day. It's hard for me to pinpoint its effects as I have drastically changed my diet over the last two months. I also started experimenting with PS first, then added other pre-biotics as I was making my...
  13. Sleeping Beauty

    how can I stay in aerobic zone of exercise without knowing when anaerobic is kicking in?

    Thanks for your CoQ10 feedback @Mij, @charlie1, and @MeSci. It appears that I can for now save money and complications until (very optimistically) I get better. I am currently about a 1.3 on the PR rating scale and at most a 10% on the Bell ratings scale that @MeSci linked to, so it appears I am...
  14. Sleeping Beauty

    how can I stay in aerobic zone of exercise without knowing when anaerobic is kicking in?

    @SOC and others, thanks for all the information! I was thinking about how much it must cost to take that much CoQ10! I never noticed a difference when taking it, but then I never took more than 300 mg. Can you recommend a brand? How do you take it?
  15. Sleeping Beauty

    how can I stay in aerobic zone of exercise without knowing when anaerobic is kicking in?

    Thanks, @SOC ! I definitely suffer from OI. So far I tried increased salt intake, electrolyte drinks, and different pharmaceuticals without much success (side effects were making things worse). Time to put on support stockings. Or get an anti-G suit :sluggish:? How did you get better?
  16. Sleeping Beauty

    how can I stay in aerobic zone of exercise without knowing when anaerobic is kicking in?

    Sigh, my heart rate goes over my (estimated) AT when I turn around in bed...
  17. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    @ariel and @Asklipia The way I thought to understand the connection between ME/CFS and PTSD is much simpler than yours (probably both ways affect us in reality). Given that most people here have been sick for many years, even decades, one thing we all have experienced is post exertional...
  18. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    @Asklipia I read somewhere (maybe even here?) that a lot of people who have had ME/CFS for a long time are likely to suffer from PTSD as well. Maybe that's why you are feeling the way you do. So now you need treatment for PTSD. The illness that keeps on giving...
  19. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    @jepps, I am having bone broth from beef/veal bones (mostly knuckles, some marrow bones) almost every day. Also eat plenty of coconut oil, avocadoes, macademias, etc. Ghee is out at the moment as I am experimenting with a dairy free diet and am worried about cross-contamination. My weight seems...
  20. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Ooops, still struggling with quoting things on my iPhone... @Sasha, you probably know about this, but I am bringing it up anyway: have you tried to sleep with your head/upper body elevated a bit? That can do wonders for acid reflux (gravity). You can either put your entire bed at an angle by...
  21. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

  22. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Sooo, obviously, my multiquoting requires some work. Let's see how this goes: Thanks, @Gondwanaland! Believe it or not, I was reading the threads on my phone and took screen shots of all the important stuff in order to be able to summarize the most important points. Unfortunately, I took like...
  23. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    @Asklipia, I am a very lucky person, indeed, catching you fully synchronized and being included in your blessings. Not to mention your being the first person to "like" me (wait, why the " "?!?). Love your Vodka methylation protocol, btw. Thanks also for bringig the Sanum thread to my...
  24. Sleeping Beauty

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    Hi everyone, this is my first post ever on PR! Hopefully it doesn't break too many forum rules. I spent the last ten days working my way through this thread with its links, as well as a candida thread, and I skimmed through several threads regarding @Freddd 's myelation protocols. I also...