Invest in ME Conference 12: First Class in Every Way
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Severe "gut case", need HELP!

Discussion in 'General Treatment' started by Ekaterina, Nov 4, 2015.

  1. Ekaterina

    Ekaterina

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    Hi, guys!
    My name is Ekaterina. I developed severe CFS about 5 months ago due to problems with my gut. In past 5 years I periodically had cases of CFS, it always happened after consuming alcohol, medicines, junk food. I woke up next morning with severe fatigue, derealization, dizziness and weakness. It was not just hangover, I always knew that this conditions was pathological. I also might have this condition after dairy products, that made my gut bubble wich convinced me in "gut theory". 5 months ago I developed problems with my duodenum (I have duodenal obstruction with mesenteric vessels) and now I have permanent duodenal reflux into my stomach. Bile acid reduces the bactericidal properties of stomach acid and I have bacterial overgrowth. Before that I had CFS symptoms periodicly and now I have it all the time. I have permanent fatigue, burning skin, flu like condition, sometimes fever like feeling. I feel realy realy bad all the time especially in the morning. After defecation I feel better. I had surgery 2 months ago to fix duodenal problems and it didn't work. Things became much worse for me 2 weeks ago when I started feeling pain in my guts and started to have diarrhea and flatulence. And my CFS became much worse. I think adhesions can cause bacterial overgrowth. And I don't know what to do with it. I understand that it's all in my gut and I need to fix it, but nothing helps. I try antibiotics, lactobacilli, it didn't work. I'm waiting now for second surgery to fix problem with bile in stomach and with adhesions. But I want to treat my symptoms somehow! And I'm looking for HELP!!! Can you tell me is there any gut protocol for CFS sufferers like me? Can you give me some advise!!! I don't know how to live with this all the time((( Thank you for your attention
     
  2. Martial

    Martial Senior Member

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    Absoutely try resistant starches, prebiotics, and Miyarisan tablets from Amazon. Those three things should start to put you in the right direction in terms of proper gut biome.
     
  3. Ekaterina

    Ekaterina

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    Martial, thank you for asvice, I will try it. But I'm wondering is there a possibility to block somehow this connection between gut and brain? Mb some means that affects on immunity or something like taht? I'm new to all this and I want to understand what exactly wrong with me and how to manage it. Because I always had gut problems since school but my body never reacted like that on it.
     
  4. Richard7

    Richard7 Senior Member

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    ekatarina,

    I just reather foolishly loked at these forums before heading off to bed.

    I do not know if I can help with your problems but I posted a fair amount of what I know or think I know to this thread

    http://forums.phoenixrising.me/inde...gut-without-provoking-sibo.39729/#post-638559

    Also the gut is closely linked to immunity and is considered by some to be something of a second, more primative, brain.

    three useful links
    http://coolinginflammation.blogspot.com.au/2015/01/gut-microbiome-2014-diet-inflammation.html
    http://drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS
    http://drbganimalpharm.blogspot.com/2013/11/how-to-cure-sibo-small-intestinal-bowel.html

    personally I found that taking betaine HCL seemed to be the game changer, but I explain more in the above link.

    hope this helps
     
    ahmo likes this.
  5. Ekaterina

    Ekaterina

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  6. globalpilot

    globalpilot Senior Member

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    I'm sorry to hear about your situation. I guess on the bright side if there is one is that you know what the problem is.
    For the adhesions I think there are manipulation techniques that can be done to break them up. I don't know a hold lot about this but here is something : http://jaoa.org/article.aspx?articleid=2094553. I really hope your next surgery fixes your bile reflux problem - that would help a ton.

    BTW if you don't mind could you explain a bit more about the duodenal obstruction and how that is causing bile reflux ?
     
  7. Ekaterina

    Ekaterina

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    Thank you, globalpilot for your attention! My duodenum is squeezed between aorta and mesenteric artery. In normal person the distance between them - 13-25mm, my distance is 6mm. It very difficult for food to pass and it make the duodenum to move food and bile and pancreatic acid into the stomach.
     
  8. SB_1108

    SB_1108 Senior Member

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    @Ekaterina - I also suffer from mostly digestive issues and I just wanted to reemphasize the suggestion from Richard7 to take betaine HCL/Digestive enzymes. Its not a cure but it can definitely provide major improvements. I would suggest NOW Super Enzymes.
     
  9. Ekaterina

    Ekaterina

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    Thank you SB_1108! I'm already looking for something like that!
     
  10. globalpilot

    globalpilot Senior Member

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    Digestive enzymes have been a major help here too.
    But I'm wondering about those adhesions - do you think that is why the surgery didn't help. Have you looked into HBOT to help with adhesions.

    Also just wondering howyou found out you had the narrow duodenum ?
    Really hoping your next surgery helps you.
     
  11. Ekaterina

    Ekaterina

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    Surgery didn't help me not because of adhesions, but I think they might increase bacterial overgrowth. I don't know nothing about HBOT, sorry. But I hope surgeons will cut adhesions during second surgery. I've found out that my duodenum was squeezed from KT scans. I started to have duodenogastric reflux, meds didn't help and my GI suggested me to make a KT and measure the distance.
     
  12. minkeygirl

    minkeygirl But I Look So Good.

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    You didn't say but If you are taking NSAIDS you cannot take betaine. It's contraindicated.

    If that is the case try bitters.
     
  13. Ekaterina

    Ekaterina

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    I don't take NSAIDS. And what are the bitters?
     
  14. Ekaterina

    Ekaterina

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    And do you guys know some doctor that I can contact via the Internet? I'm feeling so bad during past week and I need a doctor. Doctors in my area don't know anything about my disease.
     
  15. Hip

    Hip Senior Member

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    Bile going the wrong way in your guts may conceivably cause leaky gut (intestinal hyperpermeability) — this study found that bile increases intestinal permeability.

    Leaky gut has been linked to ME/CFS, and in some instances, fixing leaky gut has led to full remission from ME/CFS. See this thread:

    Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

    So once you have the second surgery to fix the bile problem, your transient CFS symptoms may also clear up.

    You might also like to investigate taking a set of supplements that help fix leaky gut, and also avoiding any factors that cause leaky gut (see the above thread for these details). It can take many months to fix a leaky gut, though.

    Some factors that cause leaky gut include NSAIDs like aspirin or ibuprofen, spicy food, and chloramine (which is found in some drinking water).

    You can also get a test for leaky gut (it is called the lactulose/mannitol test).



    The main link between the gut and the brain is the vagus nerve. When there is infection and inflammation in the gut (or any other organ in the torso), the vagus nerve signals to the brain, triggering the sickness behavior response, and sickness behavior has similar symptoms to ME/CFS. But I am not aware of any way of blocking this signal.

    However, in the case of leaky gut, some researchers suggest the increased intestinal permeability can allow the LPS (lipopolysaccharide) toxin from gut bacteria to enter the blood stream, which causes problems, since LPS is a very potent pro-inflammatory substance. So in your case, LPS leaking into the bloodstream through a leaky gut might in part be causing your symptoms.

    Taking probiotics and prebiotics (prebiotics are the all-important food for the probiotic bacteria) may help, because probiotics will crowd out the bad Gram-negative bacteria in your gut that are the source of LPS. (LPS comes from Gram-negative bacteria, and probiotics are mostly Gram-positive bacteria).
     
    Last edited: Jun 19, 2017
    dannybex and Ekaterina like this.
  16. mariovitali

    mariovitali Senior Member

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    @Ekaterina

    Before trying anything else...Can you please check your Liver (if you haven't already) ?


    ALT/AST
    Albumin
    Bilirubin
    Gamma-glutamyl transpeptidase (GGT)
    Lactate dehydrogenase(LDH)
    Alkaline phosphatase (ALP) Levels
     
    Ekaterina likes this.
  17. Ekaterina

    Ekaterina

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    I checked, it's fine.
     
  18. mariovitali

    mariovitali Senior Member

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    Could you give me the details please? For example did you have all the tests i listed above including GGT? Did you have an Ultrasound (which i forgot to mention)?
     
  19. msf

    msf Senior Member

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    What dietary changes have you tried? My illness is heavily influenced by my gut, and the FODMAP diet as helped me a lot.
     
  20. Mij

    Mij Senior Member

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    Rule out h.pylori.
     

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