Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Possible connection between these symptoms?

Discussion in 'General Symptoms' started by outdamnspot, Jul 11, 2018.

  1. outdamnspot

    outdamnspot Senior Member

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    I have severe CFS and all of my testing so far has been normal. However, I've noticed some new symptoms developing over the past few months and was wondering if there might be a connection:

    Chills/body temp. dropping after I eat
    Episodes of uncontrollable shivering
    Nausea/stomach tenderness (sometimes gagging as soon as food touches my stomach), vomiting bile, two episodes of vomiting blood
    A pink rash across my arm
    Pale/orange stools
    Air hunger and difficulty breathing
    Muscle tension and migraines

    From my reading, it seems a lot may be connected to the gall bladder?
     
    Moof likes this.
  2. Moof

    Moof Senior Member

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    Gall bladder problems will cause some of these symptoms, so you could well be right.

    Have you been tested recently for coeliac disease, by any chance? (For the test to work, you'd need to have been eating foods containing gluten in the weeks beforehand.) Just wondering about the rash, pale stools, and gastric symptoms...

    The other thing that occurs to me is that air hunger is a common symptom of severe B12 deficiency/pernicious anaemia. This usually can't be ruled out by a straightforward serum B12 test, you'd also need homocysteine and MMA tests. I'm guessing you'll have thought about this already, though.
     
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  3. outdamnspot

    outdamnspot Senior Member

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    Thanks for your reply. I was tested for coeliac disease but didn't consume any gluten beforehand. I'm on a strict Keto diet and consume no gluten anyway (aside from whatever tiny trace amounts may be in sauces).

    I wasn't aware about homocysteine and MMA being used to diagnose B12 deficiency. The problem is that I haven't been able to tolerate B12 supplementation since my CFS became severe. I guess injections could be a possibility?

    Are gall baldder issues easy to have assessed by a GP? It isn't something I've really looked into before, it just came up as a suggestion when I googled my symptoms.
     
  4. TenuousGrip

    TenuousGrip Senior Member

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    Has stopping the coffee enemas had any salutary effect on any of your symptoms ?
     
  5. Moof

    Moof Senior Member

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    It's difficult to carry out the first line of testing for coeliac if you're already on an exclusion diet. Tiny amounts of gluten can cause symptoms in some people, but I guess you'd be best asking your doctor for advice about how likely it is.

    I had severe B12 deficiency (I'd lost the ability to absorb it from food), yet my serum test looked super-healthy. Just because there was plenty of it in my system didn't mean I was able to absorb it, though. I started on injections, and they changed my life – I was showing symptoms of premature dementia, air hunger, constant mouth ulcers, and peripheral neuropathy. Luckily I caught it early enough to be able to reverse some of the worst symptoms, but if the deficiency's severe enough and it's left untreated for long enough, the neurological damage can become permanent. It's well worth getting tested even if you don't show all the typical symptoms, specially if you're having bloods drawn for another purpose anyway. I do the jabs myself now, it's pretty easy to self-administer subcutaneous injections if you're not too ill to sit up.

    There are all sorts of ways of investigating gall bladder problems, but some of them (CT, MRI, ultrasound and HIDA scans, X-rays) may have to be done at a hospital clinic. That's likely to be tough for you, given that you're so ill with ME. Speak to your GP, though – some of the tests will be standard bloods, which you should be able to have drawn at home.

    I really hope you get it sorted, it sounds like no fun at all.
     
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  6. outdamnspot

    outdamnspot Senior Member

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    I find if I stop them completely I deteriorate even further
     
  7. outdamnspot

    outdamnspot Senior Member

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    Thanks again. I have an appointment at a CFS clinic next week. I'm hoping I'm well enough to make it -- if so, I'll ask about B12, and possibly the gall bladder issue too!
     
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  8. kangaSue

    kangaSue Senior Member

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    What you're describing actually sounds like Infectious Atrophic Gastritis. H pylori is the most common cause of this but it can be autoimmune related.
    The problem with gallbladder issues is that they can be due to dysautonomia and just whipping it out can be the catalyst for a worsening of GI problems. There's no test to tell you if this is the case but you want to at least know the status of your vagus nerve here so a Heart Rate Variability to Deep Breathing test is a good meaure of your autonomic function.
    http://www.vitalscan.com/dtr_ans.htm
     
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  9. outdamnspot

    outdamnspot Senior Member

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    Is that something a gastro would need to assess?
     
    Moof likes this.
  10. kangaSue

    kangaSue Senior Member

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    It is, yes.
     
  11. outdamnspot

    outdamnspot Senior Member

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    I did some bloodwork today in preparation for the gastro visit that included a H Pylori serology. Could this also be why vomiting makes me feel a lot better? I don't just get immediate relief from nausea -- my energy/mood/anxiety all improve .. though I thought it could also related to the parasympathetic system.
     
    Moof likes this.
  12. kangaSue

    kangaSue Senior Member

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    I thought about this after I posted yesterday and was going to suggest doing some preliminary testing. I would consider doing comprehensive stool analysis too to rule out a number of other pathogens if you haven't already. Can't remember if you are Oz or not, we have a test called a Fecal Multiplex PCR which has a Medicare rebate assigned to it.
    http://www.qml.com.au/IamaDoctor/TestingGuide/NewTestingInnovations/FaecalMultiplexPCR.aspx
    I know this can be the case for those who have delayed gastric emptying in gastroparesis and that relates to a screw up in your autonomic system. It's not unusual to feel better for a bit after vomiting even when you have just the flu or gastro so I'm not sure what you can read into that.
     

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