The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

SIBO, Cholestyramine, Bile Acids And a Nervous System Gone Haywire

Discussion in 'Gastrointestinal and Urinary' started by space8, Aug 14, 2016.

  1. space8

    space8

    Messages:
    2
    Likes:
    0
    Hi, this is my first post on Phoenix Rising!

    I’m hoping you don’t mind me posting this here. It’s not directly related to ME/CFS, but I don’t know where else to put it since my medical history is askew. I REALLY tried to keep it short hoping someone could help, but it’s all so complicated.

    Diagnosed with IBS-D for 11 years. After 6 years I came down with something similar to ME/CFS. I don’t have an official diagnosis. Other than moderate to severe chronic fatigue and IBS I’ve been suffering from a wide range of symptoms. Restless legs, nerve vibrations, tinnitus, fasciculations, overall weakness, bruising without cause, brain fog etc

    Recently my doctor found that I had abnormally low levels of 7α-Hydroxy-4-cholesten-3-one (an intermediate in the biochemical synthesis of bile acids from cholesterol), which would mean my bile acid synthesis is impaired such as in cholestatic liver diseases due to mechanical blockages or disturbances in bile formation. I.e I produce TOO LITTLE bile. Hence, he ran liver tests + bile acids in blood. The liver tests were and are completely normal and have been a long time, though I did have elevated total serum bile acids and hypercholesterolemia.

    I had an ultrasound done, which showed dilated bile ducts and an enlarged liver. Later I got to do an MRI, which to my surprise came back completely clear. Considering the MRI and the normal LFTs my doctor excluded an actual liver disease.

    He somehow suspected that SIBO (small intestine bacterial overgrowth) could be the culprit, and got me started on a medication called Questran/Cholestyramine; a bile acid sequestrant which binds bile in the gastrointestinal tract to prevent its reabsorption. It’s most often used on patients who produce too much bile, but he had a theory that it might work on me too. According to the new blood tests the medication had vastly improved my serum levels of 7α-Hydroxy-4-cholesten-3-one, and reduced my total cholesterol.

    The only issue is I feel way worse. After being on Questran for about a month my restless legs which was manageable at the time skyrocketed. I got severe nerve vibrations all through my body, like shooting electricity from my spine to my legs and arms and head and back again. My nerves are constantly vibrating, sometimes painful sometimes not. My fatigue is increasing, so is the tinnitus, and it feels like Questran made my nervous system go haywire. My IBS did not improve while on the medication. Now I also have a dull ache in my liver area.

    I briefly mentioned this to my doctor but he was certain it was unrelated and urged me to continue to take the medication. I was wary, but have taken it a couple of times with unclear results, though currently I’m off it completely because my symptoms are so difficult I simply don’t dare to take it.

    Ever since then it’s been clear to me that my nervous system issues and fatigue is somehow related to whatever’s wrong with my bile acid synthesis. I also speculated that since the synthesis has been impaired for a while, my liver would logically (?) have accumulated hormones, toxins, foreign chemicals and heavy metals that would otherwise have been expelled with a normal bile production. So, I’m thinking the medication kick-started my bile acid synthesis which in turn left me with those accumulated hormones, toxins, foreign chemicals and heavy metals in circulation, affecting my nervous system. This is only a theory though.

    I’ve been reading up on everything from manganism to xanthoma of the central nervous system and hepatic encephalopathy. But since my doctor isn’t suspecting an actual liver disease – and there’s no way for me to figure out what’s going on without testing – I’m not sure what to think. I’m starting to get a little suspicious of the accurateness of the MRI though, but my doctor says it can be trusted. Otherwise, the dilated bile ducts on the ultrasound would point to perhaps Primary Sclerosing Cholangitis PSC, but I’ve been ill for so long so I find it unlikely that my LFTs would be normal after 11 years of possible PSC.

    Well, I guess my question is if someone on here have an experience with Questran and possible side effects? Of the 7α-Hydroxy-4-cholesten-3-one serum test? Or a general idea of what may be going on with my body? Can I trust the MRI? Do you have any ideas of what testing I should ask for to figure out my increasing nervous system symptoms? Could it have something to do with my elevated bile acid levels rather than a release of toxic substances? Possible deficiencies?

    I know it's a difficult case and difficult questions, but people on here are often very knowledgeable, so I'm just hoping someone will recognize something from my story and maybe be able to provide me with some clues on what could be going on.

    Thank you for reading!
     
    Last edited: Aug 15, 2016
  2. Mary

    Mary Senior Member

    Messages:
    2,889
    Likes:
    6,516
    Southern California
    @space8 - Most doctors seem to know very little about side (actual) effects of medicines and usually discount what patients tell them. You do have to listen to your body and if the Questran is making you feel so awful, I would definitely stop it.

    A little research turned up bile acid malabsorption, which is often wrongly diagnosed is IBS-D. If you do a google search, you'll find a lot of info on this. It can be caused by SIBO, and I don't believe Questran is a treatment for SIBO. The bile acid malaborption can also just be of unknown origin.

    SIBO is often caused by low stomach acid and when that is remedied, the SIBO disappears. There are drugs for SIBO but I would start with investigating stomach acid levels. None of us are sick due to a lack of drugs and I've found that most often drugs are not the solution, and instead often create a host of new problems (like you're dealing with). Here's a simple test you can do to help check stomach acid:

    On an empty stomach, drink a glass of water (about 8 oz.) into which you have mixed one-quarter teaspoon of baking soda (sodium bicarbonate). See how long it takes you to burp. If you haven't burped in two minutes, your stomach acid production is low.

    Some other things come to mind - since you've had diarrhea for many years, it's almost a certainty that your electrolytes and other nutrients are out of balance or depleted. e.g., if your potassium is low, that can cause severe fatigue. Your muscle twitches can also be caused by low potassium, and magnesium too. I think it's likely your B12 is deficient. The list goes on.

    If I were you, I would try to find a functional or integrative medicine doctor - someone who will look at your nutritional status instead of just handing out drugs. Naturopaths can be good too.

    One other thing - I used to have a host of digestive problems including an inflamed gallbladder, toxic liver, stuck ileocecal valve (yep!), low stomach acid. My chiropractor who does muscle testing helped me with all of these, without drugs. You might look into this as well. It was amazing what he was able to do. He used supplments from Standard Process and my digestion is now overall very good. I do still need to take betaine HCL with pepsin with heavy meals, but I don't mind.

    Since your digestion has been screwed up for so long, I think it's quite likely that most of your problems are due to nutritional imbalances and deficiencies. and of course this is only my opinion, I can't diagnose you, but this is what I would look into if I were you. And hopefully a different doctor - and I think an integrative or functional medicine doctor, or a naturopath would be best- or even a competent chiropractor who does muscle testing - can help you get it all sorted out.
     
  3. space8

    space8

    Messages:
    2
    Likes:
    0
    Thank goodness someone answered. I was sure no one was going to bother to read all that. So, thank you Mary! Though I need to add right away and I also added it to my first post, because I was definitely too vague. My issue is the opposite of bile acid malabsorption where you've got too much bile, I have too little bile.

    It's very rare to have a patient come up low on the 7α-Hydroxy-4-cholesten-3-one serum test (low bile acid production) without them having a cholestatic liver disease (cholestasis is a condition where bile cannot flow from the liver to the duodenum), which I don't appear to suffer from according to my MRI and my LFTs. That's why it's all so mysterious. To sum it up the question me and my doctor is dealing with is: Why do I got a low bile acid production if I don't have a cholestatic liver disease?

    I.e my doctor is actually using Questran for the opposite issue of what it's designed for (it's designed for the condition you mentioned - bile acid malabsorption - where you've got a high bile acid production), and according to the blood tests it seems to have been a solid idea since my low bile acid production (low 7α-Hydroxy-4-cholesten-3-one) are now in normal range. Though I don't feel well in any case.

    Thank you for the advice on Questran. The symptoms increased subtly so it was a gradual onset, why I'm still unsure exactly how Questran would have caused my reaction, but it does say that the medication can produce nervous system side effects such as nerve pain, it just doesn't say how and why.

    I'll definitely try the baking soda test! Thanks. I really need to figure out what's going on. About SIBO. He actually thinks it's the SIBO that causing me to have the low 7α-Hydroxy-4-cholesten-3-one levels (even though it usually causes bile acid malabsorption / high 7α-Hydroxy-4-cholesten-3-one levels). Though my follow up question to that would be: Then what's causing the SIBO? It seems to me as if it's the impaired bile flow that would have lead me to develop an overgrowth of bacteria, since there wasn't enough bile to keep my small intestine clean. Though my doctor is not sure yet either which comes first, the chicken or the egg.

    I always think so too, that I possibly can't be getting all the nutrients I need, but every time I test my vitamin/mineral levels they're in range. It's so weird. The "only" thing I haven't tested is probably Vitamin E and Iodine. Possibly something else. My diet isn't even very varied so I don't know where I'd be getting all those vitamin/minerals. Topical magnesium helps a little. Though I hate using it so much that I barely think it's worth it (it hurts and itch A LOT even though I dilute it). It's a shame. I've always thought my nervous system symptoms must be due to a deficiency, but now I'm leaning towards the theory that it's toxins (from the liver or the gut) affecting my nervous system. But I'm highly uncertain.

    Thank you so much for all your suggestions, and your time!
     
    Last edited: Aug 15, 2016
  4. Mary

    Mary Senior Member

    Messages:
    2,889
    Likes:
    6,516
    Southern California
    Hi @space8 - Sorry, I did misunderstand, thought you were overproducing bile. Okay, well, there's a very good product called AF Betafood from Standard Process which helps increase bile flow. My chiropractor gave this to me when my gallbladder was inflamed and just not working right, and this stuff helped immeasurably. Why was my gallbladder inflamed? I'm not sure but I think it was related to low stomach acid. Eventually I learned I had to start taking hydrochloric acid (betaine HCL with pepsin) with each meal and the gallbladder problems stopped. Again, low stomach acid is implicated in SIBO, so if your root problem is low stomach acid, that's easily dealt with. And of course this can all affect your liver.

    Even though my potassium levels are in the normal (low normal) range, I have trouble getting enough. I know my potassium is going low when I get muscle twitches in my feet and legs; low potassium also causes severe fatigue for me. So I still think it's very possible that your electrolytes might be off. Many of us here have electrolyte issues, despite normal seeming blood work. One good source of potassium is low sodium V8. I also take potassium supplement, plus magnesium and a ton of other stuff.

    When I first saw the chiropractor who does muscle testing, my digestion had been off, I had been feeling sick, and within a few minutes he found a problem with my bile ducts. He gave me collinsonia root by Standard Process and I think it was choline (this was a long time ago). Within a few days I started to feel better. Eventually I had other problems but he helped me with all of them, including my liver which was overwhelmed with toxins. It all showed up on muscle testing and he was able to help me with all of it. So I strongly recommend this, he helped me when doctors were clueless.

    Maybe someone else can weigh in here, I'm just going by my experience. And again, perhaps an integrative or functional medicine doctor might be of more help to you - good luck!
     
  5. alicec

    alicec Senior Member

    Messages:
    1,436
    Likes:
    2,743
    Australia
    Bile acid sequestrants also bind folate and B12.

    Depletion of these vitamins could well be contributing to the worsening of symptoms.

    All fat soluble vitamins are depleted - eg vit A, D,E,K. This could be an issue also though the folate/B12 issue may be of more immediate relevance.
     
    Last edited: Aug 14, 2016
    Asklipia likes this.
  6. Silence

    Silence

    Messages:
    87
    Likes:
    88
    Northern CA
    Hey space. I have ibs-d, too, and also did a stool test that showed that some secondary bile acids were out of wack. I also experience rls, and vibrations throughout my body. Recently, I have noticed that my right lower abdomen seems a bit distended compared to the left side which is why I am going to ask my doctor for an ultrasound to check my liver and gallbladder.

    For me, my diarrhea seems to be caused by candida albicans infection that never goes away. But I will say that there seems to be a bile acid component because i cannot digest fats and have yellow stools.

    If you' ve had diarrhea for this long you can be certain that you have some nutritional deficiencies. Ive had diarrhea for 3 years and have a few deficiencies.

    Ive also taken cholestyramine, but couldnt take it for long because it made me feel crazy and wrecked my gut.

    Id like to ask what bile acid test you had done, as i would like to also have it done.
     
  7. cfs6691

    cfs6691

    Messages:
    64
    Likes:
    34
    I am sending you 2 quotes from medical journals regarding the unreliability of liver function tests.I hope that your doctor will take them into consideration.
    a)Ricketts,W E Pathological liver with minimal or no change in liver tests Am J Med Sci 1951;Mar 22:(3):291''Liver tests within normal range are not synonymous with the abscence of liver pathology a point not sufficiently emphasized...Approximately one-tenth of the normal parenchyma is able to carry on adequate function..The most frequently abnormal test,and thus the best screening test was found to be the bromsulfalein retention''
    b)Zamcheck,N,Sidman RL Needle Biopsy of the Liver-Its use in Clinical and Investigative Medicine The New England Journal of Medicine 1953;vol 249No25:1022"In every hospital there are patients whose serious illness remains undiagnosed despite prolonged clinical and laboratory study.There may be no clinical findings to suggest liver disease.Yet liver biopsy even in the abscence of hepatomegaly,has proved useful in such cases.Von Falkenhausen et al recommend the use of liver biopsy in all cases of obscure illness in which a definite and clear diagnosis cannot be made by ordinary methods''
    and c) regarding fatigue and liver disease E Anthony Jones Fatigue associated with chronic liver disease:A riddle wrapped in a mystery inside an enigma Hepatology 1995 Nov 22(5)p1606"'There is a strong clinical impression that many patients with compensated chronic liver disease develop fatigue of a severity that seems to be out of proportion to the patient's general medical condition...fatigue can be the dominant,and may be the only symptom in patients with chronic cholestasis''
     
  8. cfs6691

    cfs6691

    Messages:
    64
    Likes:
    34
    Hepatic encephalopathy is only useful in establishing a link between severe liver damage and brain damage but it only applies in specific conditions(hemorrhage,coma,porto caval shunt).I have photocopies from medical books in which it is written that cholestasis affects the part of the liver where chemicals are detoxified(centrilobular distribution of cholestatic liver damage).I think that the chapter Cholestasis,Its ultrastructural aspects written by Phillips,Oda and Funatsu is from a book edited by Hans Popper Schaffner Fenton.I have similar issues(suspected cholestatic liver damage-intolerance to chemicals)but as far as I can tell there is a lack of research in that area as well as in other areas that concern the liver(eg it's involvement in the immune response).A study had found higher organochlorine levels in the serum of CFS patients A preliminary investigation of chlorinated hydrocarbons and chronic fatigue syndrome R Hugh Dunstan et al Med J Aust 1995;163:294-297 although there is no mention of the liver or slower detoxification of chemicals as being an issue.
     

See more popular forum discussions.

Share This Page