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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Can't handle more complications

Discussion in 'General ME/CFS Discussion' started by vision blue, Feb 24, 2018.

  1. vision blue

    vision blue

    It's one thing after another and at limit of ability to troubleshoot and endure. The latest is after trying "lauricidin" (an over the counter supplement) to beat back a herpes virus that I think is contributing to symptoms, it feels like the little granules damaged my esophagus, specifically the Upper Esophageal Sphincter (UES). Never thought i'd long for the days - decades - where my primary symptom was unnatural disabling fatigue..

    Altho I have had reflux issues since childhood, they have been under decent control. But after these grananules, I now have some liquid refluxing up that just pours into my mouth. I've tried testing the ph to see if its acid or bile and its sort of hard to determine (i'd say mostly acid, and once bile). The granules are supposed to be swallowed and instructions say "do not chew" . but since i know i have trouble swallowing pills I contacted the manufacturer and they said it was ok to chew, it's just that it's very bitter. So chew I did. Just one granule at a time for a few days, Was indeed bitter like soap, but ok. Anyway, it irritated tings some, but felt like it was helping, so i continued using very little- about the dose recommended for a 2-5 yer old child. . But last time i did it, the granule was too bitter, so i mostly swallowed it, after i think biting off one bit. Even since then is when this started. in addition, i washed it down with a pepcid chaser...or rather, since i can't swallow pills, I chewed a bit of a pepcid table right after the lauricidin and that burned like crazy too - the throat and upper esophagus
    So sometimes I think I got the little granule stuck somewhere, and other times i think i just scarred the hell out of my UES from the lauricidin perhaps helped along by pepcid (manufactuer i contacted says they cannot recommend safe to chew).

    It's been a month, and its just getting worse and worse! Acid - or something - just pours into my mouth. lots of it. worse lying down, not suprisingly, but also when sitting and standing. Never had anything that was like this. like someone opens a garden hose.

    this comes on the heels of what appears to by my autonomic system affected which sent me to the ER in hypertensive crisis and tachycardia. That lasted over 2 months - I posted on that - and the day that ended, the reflux started. Makes me also wonder its just somthing else being targeted, or perhaps the reflux damage turned my immune system from autonomic system onto something else to play with.

    but am seriously fed up. Been suffering alot. Now i picture being able to eat even less than before. I'm already super thin, already have tons of food intolerances, many for unknown picture i won't be able to stop this, and will get strictures, perhaps more if i already have them, or perhaps won't heal at all and now i have 'wide open reflux" and valve will never close again.

    insult to injury was a doc led me on that he would be willing to try to get me IVIG which i'd like to try for my situation generally ; i spent tons of time gather ing some records for him and even drafting the letter myself to the insurance company making i thought i pretty damn good case for it - trying to do much of the work myself. But i guess he didn't think i was going to see it through since he finally just said that unless another doctor diagnosis POTS or other autonomic dysfunction or peripheral neuropathy, then he won't do it on his on. If i can get another doc to do that, then why do I need this one? Waste of my time, engergy and hope.

    have an appointment with an EP type cardio to followup on the heart weirdness, but i'm always a doctor or two behind. by the time i got that appt, as i mentioned, my heart stopped misbehaving and now need a different kind of doc. Unlikely EP guy can even help the heart symptoms since its not really a rhythm disturbance (one bout of SVT, which seems to be incidental, pvcs of course, )

    not that i want to see a GI doc- they are the bottom of the barrel in my opinion. Once before, i thought i had a tooth restoration fragment i may have swallowed causing reflux (though not in mouth like this); i asked if he could xray; just completely ignored me and tried to get me to take PPI for reflux assuming was GERD. I did not since can't take PPIs because of allergy to an ingredient anyway. About a week later, i felt the obstruction move- and reflux vanished. So theyd never believe me this time that perhaps i've got something stuck/obstucting the valve keeping it from closing properly. (and of course they don't care if you ingested somthing that caused the damage)

    by the way, if by any chance the lauridin is stuck, i tried many things to dissolve it - including vinegar, and peroxide, and boiling water - i.e. in different cups, not in my body. Not one made a dent after 48 hours (at that point my vinegar ate through the cup, so i stopped the experiment).
    The manufacturer said, after i emailed him about the problem, that only thing that will dissolve it is lipase because its designed with a fat coating around it, so normally would not dissolve til the small intestine. sheesh. I"m relucatant to pour lipase into my esophagus and irritate it further, and i don't even know if its stuck or just did damage.

    It shouldn't be this hard to keep myself alive, but a good part of each day is spend trying to take care of myself and the rest spent resting. I suppose the acid is not as n inducer of suffering the way my vertigo is (i'm dizzy much of the time as well as vertigo), and the "impending doom" heart events.

    But i'm super discouraged and wonder if its time to acknolwdge that i've done everything i can, including trying unsuccesfully to get ivig for a long time now. Doesn't there come some point in which one should in fact stop trying and just accept that i have limited time left?
    Richard7 likes this.
  2. Richard7

    Richard7 Senior Member

    It sounds like you are in a really horrible place at the moment, one that many of us will recognise. Indeed one could almost call that place ME/CFS.

    And I know how hard it is. I just had a morning where I guess I felt much the same. A major dose of the frustration of knowing of some things that should help me get a little better, things that someone who was well could easily arrange, but which are beyond me.

    I think that the lack of support is often a bigger problem than the ME/CFS.

    In terms of your specific problems I am perhaps just going to say things you already know.

    If so, I'm sorry but just in case it proves useful ...

    Reflux can be caused by the stomach acid being too acidic or insufficiently acidic. The latter happens because if the stomach contents is not acidic enough it will not trigger the release of the valve into the duodenum. It is also more likely with ME/CFS because making acid is very energy intensive.

    I had lots of issues with GERD until I started taking Betaine HCL (+pepsin). It sounds counter intuitive and I remember being a bit concerned about taking it, but I just bought a bottle and followed the advice I had read which was to take one tablet with the first meal, two with the second and work my way up until I felt an unusual warmth after a meal somewhere in my chest (stomach I guess). At that point the dose was 7 600mg tablets. After a while I found that I needed fewer tablets to get to that same point and I am now on 4 tablets for a normal meal.

    Re the dizziness and PoTS the only advice I can give is to really try to to keep up the electrolytes. I find that the easiest way is to make up a lot of tea with salt and potassium and drink it over the day.

    You can get a bit further with something like WHO oral rehydration solution; which is 20g glucose, 3.5g salt, 1.5g potassium chloride and 2.5g bicarbonate of soda (NaHCO3) per litre of water. But I expect that anyone with ME/CFS would have issues with the glucose - I did. By experimenting a bit I found that a mix of 12.5g amino acids +3.5g salt 2.25g potassium chloride and 2g bicarbonate of soda seemed to work well.

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