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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. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    I can sure see how right you are that it takes time to replenish the nutrients that I've lost. My hair is STILL falling out too much, in spite of everything I'm now doing in giving myself enzymes and eating high nutrient foods. I am now using Creon, but only 2 caps per main meal. So far...
  2. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    @BeADocToGoTo1, Picking up Creon 36,000 on Monday. But I'm still trying to figure things out though via my use of Pure Encapsulations (PE), because until I can get the 12,000 and 24,000 caps you wisely mentioned you take (appointment in two weeks, then have to wait on the pharmacy), I may have...
  3. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    Turns out the sleep issue was, in fact, taking too high amounts of the PE Digestive Enzymes. I made an educated decision to move to 5 caps per meal, 3 for snacks. Last night was MUCH better. Of course, as my insufficiency gets worse (it sure did the last year), I'll move to 6, etc, per meal.
  4. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    @BeADocToGoTo1 I'm still in the process of working with the company to get Creon far cheaper, so I'm using Pure Encapsulations (PE). I looked at the Creon chart as to how much Creon based on weight. The recommended amount for my weight is 36,000 to 144,000 Lipase. Since Pure Encaps (PE) has...
  5. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    I've been delayed in getting my Creon. Long story, but I've been on 3 each per meal of Pure Encapsulations Pancreatic Enzyme, plus regular (non acid resistant caps) of enzymes for what saliva would be doing. It did help to reduce the pins and needles in my feet a lot, except for when I wake up...
  6. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    I am suspicious about something. An ultrasound revealed in late 2018 that I have polyps in my gallbladder duct which are blocking the release of bile. I have to take bile with most meals. And I wonder...what if I have polyps in the pancreas duct causing what is going on with me that resembles...
  7. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    @BeADocToGoTo1 that is VERY interesting that I could have EPI due to an elastase reading around the 200 micro gram/mL mark. Your knowledge has been very valuable. You know what I have noticed the last few weeks? Constant pins and needles/numbness in my toes (small toe and one next to it are...
  8. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    @BeADocToGoTo1, two questions; 1) I understand that amylase is released from the salivary glands into saliva when chewing, but it's nowhere near as effective as what gets released directly to the intestines by the pancreas. And my own life-changing experience hugely underscores the latter...
  9. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    Hi @Gingergrrl FYI: I'm not in the entire 9 pages. He started this string long before me. And I wouldn't have tried to read it all, either. :) The high lactic acid I would feel anytime I raised my arms to do a project, or climb stairs, is like a burning in the muscles. And yes, it can...
  10. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    Gingergrrl, I don't know if you read my posts, but my pancreas hasn't been releasing enough amylase for at least 5 years and I never caught that, nor did any doctor I used. I finally had to figure it out on my own just over a week ago. These past five years, I had corrected anything and...
  11. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    Yes, I was already on thyroid meds with T3 in them. And was doing well and still am. No, any Endo I've tried wants me on T4-only. Been there, done that---I did horrible without T3 in my treatment. I also did a nutrient test at the end of February and many were terrible. Have been bringing them...
  12. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    Hey @BeADocToGoTo1, I'm curious as to what is going on after 7 days of being on the acid resistant cap wtih 540 mg of amylase. i.e. though I'm not crashing like I used to, and though my lactic acid isn't rising like it used to when I use my muscles, I'm now more physically tired. For example...
  13. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    Hi BeADocToGoTo1. Yes, if only I had known starting five years ago that this was all about a poor release of amylase. Even the doctor I was using last year who ordered the stool test seemed to have no clue why I had an intermediate level of carbs in my stool! So I was on my own since last year...
  14. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    Adding to my post before this: Even with... * an intermediate level of carbs in my stool diagnosed as an absorption issue * clear symptoms of not enough energy from carbs (high lactic acid when using my muscles) * a high urine beta-hydroxybutyrate (which only Diagnos-Tech connected to...
  15. grapes

    Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

    I am back and see my last post was around July 2019. I was on the right track, but 2019 became hugely busy for me, and it's taken at least 6 more horrific, single-event fatigue crashes, plus constantly having to pace myself for fear of a crash at any time...to get back into this. Namely, after...
  16. grapes

    My Stomach mystery

    Another idea: When anyone eats, there is a biological spike of cortisol. It goes pretty high before it goes back down in the same way, and that's the body's way to help get carbs/blood sugar to the cells. So...if you already have high cortisol, that spike can go even higher, and there will be...
  17. grapes

    Do all gastroenterologists recognize SIBO?

    I'm curious if anyone in this post did a stool test and found themselves with unabsorbed carbohydrates in their stool as I did?
  18. grapes

    Crash SO hard after using my muscles?? What is that?

    Still hoping to find someone on this forum who had a stool test that revealed carbs in one's stool. And I still crash if not careful.
  19. grapes

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    In a way, it makes sense. Cortisol raises blood sugar, aka glucose, and raised blood glucose gives you a direct and immediate energy source. I'm thinking you might get the same affect by using Cortef, aka hydrocortisone.
  20. grapes

    Crashing late afternoon while treating PEM!! Any ideas??

    UPDATE: I think I have the strongest clue yet as to my continued fatigue crashes/PEM after a lot of activity. Granted, this may or may not explain why I started this string in the first place--crashing in the afternoon after a day of rest. I do think that was a cortisol issue, as I had high...
  21. grapes

    IMMUNE SYSTEM OVERDRIVE AT NIGHT waking me up!!

    I really appreciate you sharing that. I'm taking it tonite for the first time. I just have to figure out how much. I already overreact to B6 or B2 if I take too much. The bottle I got is 550 mg which may be way too much. I can pour out part of it into a dollup of something before bed.
  22. grapes

    C60 Mitochondria Repair

    Do you detox easily? I do. It's always rough for me. I had to twice detox high heavy metals and the fatigue was overwhelming.
  23. grapes

    C60 Mitochondria Repair

    I was having detox problems so I stopped. I detox like a bull in a China cabinet. I'm still curious about it. It's in my freezer.
  24. grapes

    IMMUNE SYSTEM OVERDRIVE AT NIGHT waking me up!!

    Here are my strategies so far that have helped me sleep better two nights in a row, so far: 1) I am taking this at bedtime, but 3 caps instead of 2: https://amazon.com/gp/product/B076DTDZG5/ref=ppx_yo_dt_b_asin_title_o00_s00?ie 2) I've added 400 mg of magnesium to the above, mixed in a dollup...
  25. grapes

    IMMUNE SYSTEM OVERDRIVE AT NIGHT waking me up!!

    Yes, it's interesting. And I've read the CFS/ME could include an immune system in overdrive. I'm not sure I have CFS/ME, but I do have terrible PEM and have had starting a year after I have to do my first major heavy metal detox, since some metals were very high.
  26. grapes

    IMMUNE SYSTEM OVERDRIVE AT NIGHT waking me up!!

    About two years ago, I have been waking up a few times during the night, and trouble falling back asleep.. Looking back, my sleep issues started after I had gone through two years of heavy metal detoxing here or there to get high levels down, plus treating SIBO and enduring the miserable die off...
  27. grapes

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    You are wonderful.
  28. grapes

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    Hip, is your list of PEM supplements updated to the current day and time based on experiences?
  29. grapes

    Creatine supplementation reduces my PEM

    Hi. I'm not even sure what the Huperzine does to prevent a crash? I do see it helps the neurotransmitters in the brain. But nothing to counter a PEM crash?
  30. grapes

    Crashing late afternoon while treating PEM!! Any ideas??

    Yes, the doctor did tests, and I did need to get problems out or down. Two high heavy metals, lots of candida, even mold.