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Constant nausea/anorexia

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by KRR, Oct 30, 2012.

  1. KRR

    KRR

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    Hi, I've had CFS for decades, tested positive for EBV and CMV back in the 90s, but am just starting to do research again to see what's new recently.

    I have a history of "atypical" anorexia and was on parenteral nutrition for 10 years until in '05 my appetite mysteriously reappeared and stuck around for 7 years, until this year. (Did a gluten-free diet once for about a year, didn't seem to make any difference).

    This year, after a period of severe stress, the anorexia has resurfaced with more nausea, and I now think it's virally related - severe inability to eat, with almost constant nausea or queasiness, feeling of a "lump" or huge amount of gas in the gut, early satiety, to the point where sometimes I can barely even take a few sips of water without the intolerable nausea. Sometimes I can eat tiny amounts and then be too full for hours afterward.

    If I force too much, my gut gets so uncomfortable that it keeps me up at night and I'm even less likely to get food in the next day. When my gut is really bad, I often have very low grade fevers and malaise. When the fevers are gone, my gut is a little better.

    So I don't force too much (can sometimes barely do a few ounces of a predigested protein drink, and crackers). I became so dehydrated recently that I was in the hospital for a few days getting IV fluids. The conventional labs are negative, except for ketones in the urine.

    They will not do parenteral nutrition unless prealbumin is off, and mine was fine. They and my GI doc suggest endoscopy. (I had a harrowing experience with that many years ago, so am reluctantly considering it). CT scan was ok except for silent gallstones.

    My "gut" feeling is that there isn't any blockage but lots of inflammation due to viruses. Still I never heard of anyone having this severe inability to eat in the absence of a physical blockage of some sort. I have no vomiting, bowels are normal, doesn't point to a blockage.

    So I need to do some info gathering on the viral aspect. I don't have access to a local doc who specializes in CFS. Mention of "chronic enterovirus" and docs dismiss the chronic part and say that I don't have diarrhea, so no.

    I have insurance but can't afford to spend a lot of money on private phone consults, and am not well enough to go traveling to see specialists out of town. although I'd like to know what's available and take it from there. I wish there was a specialized in-patient clinic.

    I'm extremely sensitive to all kinds of meds, not surprisingly, so it would be best to work with a specialist, although maybe not practical. I'm a natural health counselor myself, so I'm open to alternative approaches, and would be reluctant to use antiviral/antibiotic drugs, but the idea of immune modulators sounds good to me.

    I was just about to go order some Equilibrant, and then I saw the info on the methylation protocol. I don't think throwing a whole bunch of new supplements at me all at once will be a good idea, and I just don't know how to take this step by step.

    Any guidance on how to proceed?
    Thanks in advance!
    Karen
     
  2. Crux

    Crux Senior Member

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    Hi KRR;

    I believe the methylation protocol could help many of your symptoms. I haven't tried Equilibrant, but it looks like a good product. If someone doesn't come along to describe their experience, maybe you could post a question on the thread about it.

    B12 can help with normalizing appetite. ( Mine was very low.) It can also help with some types of nausea. If the nausea is neurological, B12 can function,in part, by normalizing the sense of smell and taste. ( I think it helped my early satiety too, not sure how.)

    The other B vitamins can help with forming stomach acid, and digestion. Folate and B12 are interdependent .

    Since everyone's needs are distinct, it's a good idea to start with lower amounts, and find what works best. ( I take sublingual methylcobalamin, but many people respond to hydroxycobalamin.)
     
  3. KRR

    KRR

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    Thanks so much. I'll pursue the B12.
    One point I didn't mention before is that I have been taking meds for migraines (mostly Imitrex) over the years, and when my gut started conking out earlier this year I first thought that it was a mild serotonin syndrome, since Imitrex is a serotonin agonist. I'd be nauseous after taking Imitrex but after a while the nausea didn't resolve, plus serotonin antagonists don't seem to help the symptom. So I'm just not sure anymore, and it's all a bit overwhelming trying to sort things out.
     
  4. Crux

    Crux Senior Member

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    Hi;
    B12 may help with certain types of migraines. I've been trying to figure this out, it's confusing. One type starts at the back of my head. It could be a type of occipital neuralgia. I've also had one sided types, mine was on the right side of the head, with aura. ( even temporary blindness)

    I haven't tried a serotonin agonist, but I had nausea from SSRI's and sometimes 5htp. Serotonin can collect in the gut, unmetabolized, and cause nausea.
     
  5. nanonug

    nanonug Senior Member

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    Do you have any of these: allergies, facial flushing, shortness of breath, difficulty in concentration ("brain fog"), rhinitis/sinusistis, tachycardia, blood pressure irregularities or abdominal distention/bloating?

    Any other symptoms even if you think are unrelated to this condition?

    This is a good idea and I highly recommend it as it rules out some nasty stuff.
     
  6. KRR

    KRR

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    Crux: Re. migraines, I suspect mine are now mostly rebounds from the drugs themselves. There's even a new name for them: "medication overuse headache." I try to take the smallest effective dose, and wish I could get them out of my system, but the pain is too unbearable to go without, so it's really hard to break the vicious cycle.

    Re. serotonin, yeah, the SSRI's will do it, although Remeron is one that actually antagonizes a certain form of 5-HT in the gut, and I don't remember the chemistry precisely but that one used to make me hungry. Doesn't have the same effect anymore, though, and I'm very cautious about SSRIs in general (according to Ann Blake Tracy's research)

    nanonug:
    Well, the fatigue is painfully severe, a restless kind, jitters, insomnia, feeling that I'm always in fight-or-flight and the sympathetic nervous system is always on (dysautonomia, I think), mitral valve prolapse, not a lot of allergies per se but intolerances to loads of things, shallow breathing and shortness of breath on exertion, no other respiratory sxs, some episodes of tachycardia, abdominal distention, extreme chilliness. Blood pressure is pretty stable, amazingly. Brain fog when I'm not eating much but generally not all that pronounced. Just that the physical fatigue prevents me from doing much work at all, physical or mental.

    The only reason I'm on the fence about endoscopy is because of my past experience that was extremely traumatic even with conscious sedation, so I'd need to be unconscious and that would be a big deal for me to go through. I'm waiting to hear from my doc about how it might be done in my case.
     
  7. nanonug

    nanonug Senior Member

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    OK, based on this set of multi-system symptoms, I think there is a good chance that you may be affected by some form of Mast Cell Activation Disorder. Have a look at this paper and see if it rings any bells for you: "Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options." In particularly, look closely at table 3.

    If this paper "speaks to you", I'll be happy to give you some suggestions on how to proceed. Are you in the US? If yes, what state?
     
  8. KRR

    KRR

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    Thanks for the paper! Because I have so many symptoms, many of them are represented there, but I don't see that my profile is really there. I don't have abdominal pain, but the anorexia is the most severe GI symptom. I'm only constipated because of such small oral intake very recently, but otherwise that's normal.
    I wouldn't rule out this possibility, but I'm just not sure.. what would you have recommended?
    I'm in upstate NY, BTW, and not able to travel at this point.
     
  9. Crux

    Crux Senior Member

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    Hi KKR;
    I agree about caution with SSRI's. I had terrible side effects from them. I tried remeron one weekend... and had a full blown manic episode. Bad. It did help my appetite, but, mania, no thanks.

    I understand how debilitating migraines can be. The B6 in a B complex may help with serotonin metabolism.

    I'll read up on Anne Blake Tracy, I haven't taken an SSRI in 7 yrs. They didn't work for me.

    It may take some months for the protocol, and B12 to work, but it could very possibly help many of the conditions you are suffering.
     
  10. nanonug

    nanonug Senior Member

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    The fact that you have so many symptoms on that table (I counted 12) is what made me suggest mast cell activation disorder.

    The beauty of it is that MCAD is testable. Given your symptoms, I would say that these three tests would suit you:
    • Serum Tryptase
    • 24-hour urinary N-methylhistamine
    • 24-hour urinary Prostaglandin D2
    The last two are very picky and collection needs to be done is a very controlled way. These three tests are available via Quest Dianostics and your local Immunologist should be able to order them. Most probably, however, s/he hasn't heard of MCAD so you may want to take a copy of the following document with you: MCAS Primer for Physicians.

    Finally, if you want to learn more about mast cell activation, have a look at this PowerPoint put together by an expert on mast cell disorders: "Systemic Mast Cell Disease: An Update."

    Good luck!
     
  11. KRR

    KRR

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    Crux: Thanks again, and good idea about B6.. I need to get more B's.
    About Ann Blake Tracy, her website is http://drugawareness.org, great resource, great personal dedication to education about the dangers of SSRIs. I'm thinking we're lucky that we can't tolerate them!

    nanonug: Thanks for all that info! I will certainly look it over. I haven't gotten so far as to even see a local immunologist, but that might be next.
     
    Crux likes this.
  12. nanonug

    nanonug Senior Member

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    OK, it seems that anorexia is also a possible MCAS symptoms. Look at page 40 of the PowerPoint presentation on my previous post. Also, on page 9, you'll see as part of a case study that starts on page 6, "2008: Multiple unprovoked episodes of severe nausea, anorexia, pallor, mild hypotension, and chills (without fever)".
     
  13. alice

    alice Senior Member

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    KRR,
    I just had a upper endoscopy and a colonoscopy three weeks ago. I was "out" during the whole procedure. The anesthesiologist used Propofol for me. I had no side effects afterwards except for a very slight sore throat - no worse than I have on many other days. I woke up very shortly after the procedure and felt no nausea.

    The good thing is that nowadays the anesthesiologist will come and talk to you right before the procedure and will discuss any concerns with you. So if you go ahead with it, be sure to let anesthesiologist know of your prior bad experience. I've had three procedures so far this year and have had no problem with any of the anesthetics

    I do think upper endoscopy is really important if you are having a problem. I was found to have Barretts Esophagitis about 6 years ago, but it has apparently pretty much resolved now. and I was very happy to know that.
     
  14. ukxmrv

    ukxmrv Senior Member

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    Have you tried Betaine HCL with food? Just something to maybe consider. When i eat I get very full fast and then my stomach feels blocked and painful for hours after. The theory is that this is slow stomach emptying caused by a lack of acid. Exactly the opposite to what doc doctors originally thought it was. They tried to treat as a high stomach acid causing indigestion but it goit worse.

    I take Solgar Betaine HCL up to 5 with a big meal. You could maybe start with one and see how you go. There was also a baking soda test (that you can do at home) but I've lost the link to the thread.

    Dr Chia is the entrovirus in the gut expert of course and you are already mentioning Equilibrant. I also got terrible gut problems (which never resolved) from antidepressants (and to a lessor extent codeine painkillers).
     
  15. KRR

    KRR

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    Thanks for the reminder about Betaine HCL. I never got great results with it, but it can't hurt to try some again.

    Update: I had the upper endoscopy, was sufficiently comfortable and don't remember a thing due to the Versed, so that was fortunate. Results were negative, not even any significant inflammation! Would it be possible to have an enteroviral infection even when the results of conventional endoscopy are negative? I plan to continue using Equilibrant empirically anyway.

    Meantime, my gut sxs remain pretty much the same although I'm eating/drinking enough to be stable for now, fortunately. The most puzzling part of this is that for 7 years my gut wasn't bad and I was eating fairly normally. When the gut issues first began, decades ago, it was like my appetite just shut off like a switch, then in '05 the switch turned on again, stayed on for 7 years, and then this year it turned off again. And I can't seem make any correlation with treatments or supplements that would account for those changes.

    That's why I don't think that interventions aimed at digestion per se are going to make much difference, even though the symptoms are showing up in the gut, but I have to aim more for the immune system aspect of gut function.
     
  16. globalpilot

    globalpilot Senior Member

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    Gastroparesis is another possibility. Have you done the gastric emptying test ?
     
  17. KRR

    KRR

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    Yes, thanks, I did the test a while back during a time when I had the same sxs I have now, and gastric emptying time was normal.
     
  18. globalpilot

    globalpilot Senior Member

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    Frustrating eh ? I have severe upper symptoms too and can't get to the bottom of it.
     
  19. KRR

    KRR

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    Yeah, it's good to have testing to rule a lot of nasty things out, so I count my blessings as far as that goes (CT scan helped ease my mind). But then knowing where to go from there is pretty challenging.
     
  20. merylg

    merylg Senior Member

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    Hi KRR,
    Regarding the Mitral Valve Prolapse consider the possibilities of a genetic connective tissue dysplasia eg Marfan's Syndrome, Loey-Dietz Syndrome, Ehler's Danlos Syndrome. Genetic Clinics at major hospitals help with these. Need a referral from your GP (PCP).

    http://www.marfan.org/marfan/2320/Features

    http://www.marfan.org/marfan/2290/Loeys-Dietz-Syndrome

    http://www.ednf.org/index.php?option=com_content&task=view&id=1347&Itemid=88888968

    Regarding the gut issues consider genetic Mitochondrial Diseases. These are in the realm of Neurogenetics Clinics. I got a referral to the Neurogeneticist from my Neurologist, but you can also get a referral from your GP (PCP). They can request a Nuclear Medicine Study of Gastric and Colonic Motility. They also run a lot of other tests related to mitochondrial issues and look at your overall health.

    http://www.mitoaction.org/guide/anorexia-and-poor-feeding

    It's good you were able to get the gastroscopy done. So they don't think the gallstones are a problem?
     
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