The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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My Gut is.... Poll

Discussion in 'General Treatment' started by xks201, May 31, 2012.

?

My Gut is

  1. FINE

    6 vote(s)
    10.5%
  2. Questionable

    14 vote(s)
    24.6%
  3. Definitely Not Healthy

    37 vote(s)
    64.9%
Multiple votes are allowed.
  1. xks201

    xks201 Senior Member

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    Again boys and girls...just in the name of research.

    Let us know the state of your stomach and intestines. Just curious how many of you have CFS with no gut symptoms, or gut symptoms. Not implying that you all were born with no transverse colon or anything, just curious how many of you can honestly say your CFS is totally unrelated to potential gut problems. Excuse the "questionable" typo, I do not know how to modify the poll, lol.
     
  2. Enid

    Enid Senior Member

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    Something I pointed out very early on to my Docs - motility problems - then diahorreas - blackened stools and pain, urine abnormal odour and colour - infections - yes - Amoxcillan for teeth extractions eased. Now what are my Docs clearly missing - enterovirals stand out.
     
  3. xchocoholic

    xchocoholic Senior Member

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    Just wanted to say that I considered my digestion ok despite having gas, reflux, occasional D,
    etc and taking otc meds for most if my life until 2005. That's when I think I got full blown celiac and all hell broke loose.

    So what we think is ok may be signs that our digestion is off but we've all been taught to pop a pill and ignore the
    symptoms.

    I got sick in 1990 after a catching something that caused uris, utis and systemwide neuro problems ...

    Tc . X
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    Unless we have noticeable symptoms, I don't think we can know without some sophisticated testing.

    Sushi
     
    Tito likes this.
  5. SickOfSickness

    SickOfSickness Senior Member

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    I put questionable but I think mine is mostly good and just needs me to take better care, such as probiotics.
     
  6. Carrie-Louise

    Carrie-Louise

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    I used to get the usual stomach pains, diarrhea/constipation thing when I was very sick, and then a few years ago I developed an atypical appendicitis that resulted in rupture and abscessing. Docs were very puzzled about why and how it happened in the way it did, as I was feverish and septic for about three months before it was eventually diagnosed, which is not at all like a usual appendicitis. I've always wondered if there was any connection with my ME, but have not found any literature about it.
     
  7. mermaid

    mermaid Senior Member

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    My gut would probably be Okish if I could stick to my rigid diet for more than a week. I can cope with the gluten free aspect, but if I waiver one iota from the dairy free, processed food, sugar free, many kinds of additives, then I am in trouble. All better for me of course, and it's taken me long enough to address it! So it's much better than it was but not quite 100% yet.
     
    MeSci likes this.
  8. taniaaust1

    taniaaust1 Senior Member

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    My bowel issues are even worst then they used to be after side effect of a drug which I was taking for sleep but unknown to me till I researched after the side effect .. had a side effect of slowing with peristalisis of bowels. Now due to that Im twice as bad as I was as it seems to have possibly caused permanent damage?

    The cause for my other gut/bowel issue turned out to be hyperinsulinemia and also food intollerances but Im currently fine over the food intollerances (they come good themselves after several years of avoiding triggering foods) and my high insulin is now currenlty okay too due to the special diet Im now on.

    But the neuro? damage in my bowel remains worsened by the med trial I had had.
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I don't know how to vote as my gut was really bad for decades until I changed my diet. Now it is good if, like you, I stick to the diet AND pace rigorously, which is not always possible.
     
  10. mermaid

    mermaid Senior Member

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    Hi there MeSci - I see we are in the same neck of the woods in the UK!!

    Things are still about the same for me a year on. I just have to stick to the boring diet, though I can now tolerate goat and sheep yogurt and kefir so maybe that's progress!

    Actually it's worse in some ways now, as I have to be very careful with fruit too, though mostly I can tolerate a very little amount.
     
  11. hmnr asg

    hmnr asg

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    I know many people had a viral infection type of trigger for their CFS, but mine was GI related. I started having terrible bloating one morning out of the blue; prior to that I had been fine as fiddle. I took copious amounts of Gas-X for the next month battling with horrible gas that had me looking like a baloon. Then about a month after these intense GI problems, the fatigue began... and then the rest gradually came too (the cognitive impairment, memory problems, sleep problems etc).
    Four years later, the acute bloating has stabilized into a mild IBS (with slightly less abdominal distension that that first month).
    So i for one, am behind your GI hypothesis for CFS.
     
  12. knackers323

    knackers323 Senior Member

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    Symptom wise mine seems fine but testing says otherwise and gut treatments improve my symptoms
     
    MeSci likes this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    That's interesting - what test(s) did you have?
     
    Little Bluestem likes this.
  14. knackers323

    knackers323 Senior Member

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    Firstly I had a bout of extreme stomach cramps that lasted about ten days that were never explained. During which I was exhausted.

    My stools were soft, kind of runny for a month or two but seemed to normalise by them self but I was left with this fatigue unlike anything else I had felt previously.

    I have had two colonoscopys that say everything is fine.

    Twice I have had fecal testing done with bioscreen and I have dysbiosis. I never really read to much into this as I figured that this would probably be the case for 95% of the population.

    However in the years since then people are saying treating this can make a difference. Ken lassesen has a blog, (cfs remission) that talks about this and a member on here at PR, Elph seems to think he is on to something similar.

    I have taken antibiotics to correct the dysbiosis and they immediately had a huge effect but I was unable to continue it due to dr unwillingness.

    None of my stomach tests have ever suggested I have a candida problem but I have taken nystatin for a few weeks at a time twice but never noticed anything. But on a third occasion I took one dose of nystatin and one hour felt 50% better. However subsequent doses did nothing.

    There have been times when I have eaten yogurt and felt a dramatic improvement but again, one day it works and the next it does not.

    I have also noticed some improvement from eating only meat and veg. Exactly why this is, is too hard to tell.

    On a few occasions I have gone to the toilet and imediatly felt much better.

    In my first few years of illness I would tend to feel better when I didn't eat. Now I just feel that shit always that it doesn't seem to make any difference.

    My grandfather died of bowel cancer and my brother has crohns disease so maybe there is some weakness there in the gut?

    Who f@&king knows. There are so many questions and no answers and the thing seems to keep moving around. You find something that seems to start helping and you get your hopes up and then for no apparent reason it just stops helping. It's a joke.

    Ha ha sorry about that. It's the not knowing that really pisses me off. If they could just tell me, you feel like shit and your life is screwed because X isn't doing what is supposed to or Y doesn't work any more.

    I could handle that a whole lot better than, oh well, your f@$ked, but we don't know why and we aren't interested in finding out either. And by the way we still expect you to function like everyone else.
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm not a doctor but that first episode sounds like a gut infection - maybe what would be called gastroenteritis. That could have thrown your gut flora out of balance, which in turn caused the rest.

    Have you checked out this thread? Lots of useful info there including things that people have found helpful, and theories about how leaky gut can cause ME.
     
  16. knackers323

    knackers323 Senior Member

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    Hi thanks for the info.

    Yes I guess it could have been gastro but I have had that a few times before and it has what I would call moderate cramping and lasts a day or two.

    On the occasion where I got sick, these were the most intense cramps I have ever felt. I was almost in tears curled in a ball to the point my parents had me at the hospital three times in the first three days thinking I may have appendicitis or something.(each time they sent me home and said it is just a normal bug, it will pass). And they lasted about ten days. So it was definatly an infection. But what one? What else causes these symptoms?

    It is shown that PWCFS have gut dysbiosis. Anyone know how often it is in autoimmune conditions and healthy controls?
     
    Last edited: Nov 14, 2013
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I had my first severe bout in childhood - age of 11, I think. I remember it clearly. There was a pain that started around my navel and gradually travelled down to my groin, getting stronger and stronger as it moved down, until I was crying out and doubled up in pain. It kept happening day after day, and I was rushed to hospital and opened up as they suspected appendicitis, but it wasn't. They said my colon was inflamed, and gave me a diagnosis of spastic colon, which I think is what is now known as IBS.

    I don't think it matters what bug causes it. What matters is that it causes the gut wall to become too permeable, which can lead to autoimmune disease. There is info about this in the thread I linked to, including links to scientific papers.
     
  18. knackers323

    knackers323 Senior Member

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    Hi Sci

    I was thinking, what if it wasn't a viral or bacterial infection but something more like a heavy metal or industrial poison?

    Do you know of any where I can find a list of possible things or substances or a way to test for these possibilitys?

    It feels to me like whatever got in me then may still be there to a lesser degree.

    Thanks for any ideas you may have.
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Sorry but I can't help. I suspected poisoning in the 1990s (myself and my cats) but could not find anyone to carry out tests. Maybe someone else will know. What country do you live in?
     
  20. mermaid

    mermaid Senior Member

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    I visit a Dr in London UK, (actually based in Surrey) who does some of these heavy metal tests via Acumen lab, but that's not much good to you if you are in the US or elsewhere.... just looked back at some of your posts and I think you are in Australia? Must be someone testing out there presumably.
     

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