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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. BeADocToGoTo1

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

    @cheeseater Thank you for sharing. Welcome to the group. We all try to share and help where we can. It also took me a while to dial in the quantities of pancrelipase and know how much to take for what type of meal. I am now using Pancreaze instead of Creon due to insurance changes, but it...
  2. BeADocToGoTo1

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

    Hi @motorhead Sorry if I missed your post where you mentioned your symptoms. Pancrelipase, such as Creon or Pancreaze, are not a painkiller type of medicine with immediate relief. Depending on the symptoms and the body's state it can take a while to turn things around. That is, of course...
  3. BeADocToGoTo1

    Article Honouring the Memory of our Friend PatJ

    Patrick. You are missed! You brought so much love and support to this community. You supported me personally in so many ways you will always be remembered.
  4. BeADocToGoTo1

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

    Hi @Replenished Never a pleasant topic of discussion, but such an important one. It is sad that doctors, even many gastroenterologists, and especially most family practice doctors completely ignore the importance of stool tests and a detailed discussion around it. I took pictures with me to my...
  5. BeADocToGoTo1

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

    @Pyrrhus Thanks for the diagram and the note. I have wondered that too, or for that matter any form of malabsorption or other underlying causes of nutrient deficiencies. The impact of nutrient deficiencies is huge on the functioning of any and all metabolic pathways, and the symptoms can...
  6. BeADocToGoTo1

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

    Hi Flnn, Great Plains Lab (Organic Acid Test - Nutritional and Metabolic Profile) or Genova Diagnostics (ONE or FMV) are ones I have used in the past.
  7. BeADocToGoTo1

    Diagnostic difficult despite many analyzes and tests

    Glad you found something to pursue that may makes you feel better! I still do meditation almost daily, which include Yoga breathing to help calm me down and get the blood flowing. Even in stressful situations I have found that focus on breathing helps. My French is not great but I...
  8. BeADocToGoTo1

    Pale Stool and Bile Salts

    Hi GreenEdge, I was thinking more of supplements like magnesium citrate, oxide or glycenate.
  9. BeADocToGoTo1

    Pale Stool and Bile Salts

    Have you tried magnesium supplements for the constipation?
  10. BeADocToGoTo1

    Fatigue, shortness of breath, etc.

    Hi @st134 , @dave11 Have you had a stool pancreatic elastase test done? If so, what is the level in mcg/mL? If not, please ask your doctor for one just to rule out EPI ( or even pre-EPI as I call it), as it is an often overlooked problem. Air hunger I had as a downstream symptom from nutrient...
  11. BeADocToGoTo1

    Diagnostic difficult despite many analyzes and tests

    Hi @Laurenluv Sorry for the late reply. I follow a Primal diet, which is simply put is as much real food as possible, Or what our ancestors just called food. :) Low in starchy vegetables, but as much color and variety of vegetables, healthy fats (nuts, seeds, fish, eggs, olives) and healthy...
  12. BeADocToGoTo1

    Diagnostic difficult despite many analyzes and tests

    Hi @nini Sorry for the late reply. Did you do another stool pancreatic elastase test recently? If anything I would ask your doctor for one. The test should show a specific value in mcg/mL (microgram per milliliter). The one you had uploaded before did not provide a specific standard value. It...
  13. BeADocToGoTo1

    Pale Stool and Bile Salts

    Hi @dave11 Sorry if this was already brought up, but did you have a stool pancreatic elastase test done?
  14. BeADocToGoTo1

    Pale Stool and Bile Salts

    Hi @bread. and @overtheedge If your gastroenterologist, or even your family practice doctor is not willing (which is shocking in and of itself) to have you perform a super cheap, super easy fecal test then you can try taking pancreatic enzymes with your meals to see whether it helps with...
  15. BeADocToGoTo1

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    Hi @goxus A couple more items pertaining to your heart. Have you looked into taking a mitochondria supplement cocktail including CoQ10 (amazing!), B1, B2 vitamins, magnesium, creatine, and L-Carnitine? Something that really helped me is the following: ● 400 mg of coenzyme CoQ10 per day. ● 100...
  16. BeADocToGoTo1

    Grass fed/finished meat makes me sick

    Beef and pork are generally more fatty meat and harder to digest than chicken or fish. Is it possible you have a hard time digesting fat? What did you prepare it in? Butter? If butter, are you lactose intolerant as that can also cause cramps and nausea.
  17. BeADocToGoTo1

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

    So you wake up when every farmer in the world wakes up. :) I would not worry about it. Whenever I wake up early like that, I will go for a walk instead of trying to go back to sleep. Nice and calm outside. Usually I will feel more tired in the evening and go to bed earlier. But, if your cortisol...
  18. BeADocToGoTo1

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

    Hi @grapes It is important to dial in the amount of pancrelipase and stick with it. It sounds like 5 caps is a good level for dinner, so stick with it unless your stool changes. Hormone rebalancing will take a while and will not be directly linked to the amount of caps you are taking. This...
  19. BeADocToGoTo1

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

    Hi @LordSutch Beside the potential malabsorption issues, have you looked at your blood sugar control and have you tracked the impact of your diet on your blood glucose using a simple pin prick meter? Have you looked into the athletes (e.g. Zach Bitter, Mark Sisson, Joe Rogan), that are...
  20. BeADocToGoTo1

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

    HI @grapes Good to hear from you again. It is a bit of trial and error to get the dosage right for your body, the meal size and content, not to mention the OTC pill quality and strength inconsistency. Every meal and snack might require a different amount in your case. But, whether there is a...
  21. BeADocToGoTo1

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

    Scary. Hopefully it will continue to improve. The test I did was the MRI with MRCP of the abdomen which provides a 3D picture of the gallbladder ducts, and detailed pancreas duct information. And it is non-invasive. There is also a an endoscopic ultrasonography (EUS), but I did not do that due...
  22. BeADocToGoTo1

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

    When you start delving into metabolic pathways and how vitamins and minerals, fatty acids and amino acids are required in the functioning you can see how a deficiency can cause a myriad of symptoms. I also had a lot of nerve issues, parasthesia including complete numbness in parts of hands...
  23. BeADocToGoTo1

    Unrelenting Gas

    Hi @Matthew_2 SIBO was already mentioned above, and I would add Candida overgrowth to that too. Have you kept a diary of everything you ingest? Food, drink, supplements, medicine to see if there is any correlation? Do you have silent or classic acid reflux? Have you tried taking lactase pills...
  24. BeADocToGoTo1

    Pale Stool and Bile Salts

    Please check out the following thread in case it has some info: https://forums.phoenixrising.me/threads/pancreas-damage-exocrine-pancreatic-insufficiency-epi-and-chronic-fatigue-syndrome-cfs.62997/ Have you had the following tests done?: MRI with MRCP of the abdomen with contrast - Gives a...
  25. BeADocToGoTo1

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

    When I had trouble digesting I was sensitive to everything including dairy and gluten. Even though growing up I had no sensitivities whatsoever. Since I was not digesting properly with mucus and stomach lining issues, my body was sensing these partially digested particles as invaders and...
  26. BeADocToGoTo1

    Diagnostic difficult despite many analyzes and tests

    Just as a little side note. This was many years before my body completely broke down, but they were warning signs. My first doctor was an endocrinologist that I went to when my energy levels and mood started unexplainably slipping. Two of the tests that came back low were testosterone and...
  27. BeADocToGoTo1

    Diagnostic difficult despite many analyzes and tests

    I was sensitive to most everything I ate for a long while during my ill period. However, I never had any sensitivities or allergies growing up, and could eat absolutely everything. During the bad time I was nauseous for months and had years of pain and intestinal distress. Since I was not...
  28. BeADocToGoTo1

    Whole genome done - now what?

    Hopefully they will be able to provide you with some concrete help! I am very curious what you find out in terms of epigenetic (as I am assuming that is what they are testing) settings and recommended actions (medicines, supplements, dietary changes, etc.). Do they dive into the metabolic...
  29. BeADocToGoTo1

    Pancrelipase e.g Creon vs. OTC Enzymes

    No histamine issues that I remember. But I was sensitive to most everything I ate for a long while. Nauseous for months and years of pain. Since I was not digesting properly with mucus and stomach lining issues, my body was sensing these partially digested particles as invaders and reacting...
  30. BeADocToGoTo1

    Diagnostic difficult despite many analyzes and tests

    That is curious. I would agree about the malnutrition or malabsorption as a possibility. Was that on carnivore diet? Vegetarian diet? Since you are on such a restricted diet, this can also be a cause. Are you able to add more healthy fat to the diet? Nuts? Avocado? Olive? Olive Oil? Full fat...