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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Pursuing treatment again

Discussion in 'General ME/CFS Discussion' started by KRR, Aug 25, 2016.

  1. KRR

    KRR

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    Well, I'm back on this track again, after a long bout of eating difficulty which is still ongoing, severe weight loss (77 pounds at 5 feet), G-tube placement, and now not being able to tolerate the feedings into the stomach. I don't have any local medical support for the kind of research discussed here, so the only thing being offered right now is to convert the G tube to a G-J tube and "maybe" my jejeunum will tolerate it better than the stomach..

    And that may be necessary to try, for the short term to stabilize me in the meantime. But I'm looking at the possibilities for getting more to the root of the problem, which I suspect is along the lines of Dr Chia's work.. and also Dr Van Elzakker's vagus nerve infection hypothesis, which really ties the CFS and gut symptoms together. And I do have quite an overreactive nervous system, and even had nerve injury from the G-tube surgery itself, causing nerve entrapment at the stoma. Very painful and difficult to deal with.

    I was never able to get to a Quest or Labcorp lab to get Dr Chia's blood testing done, as the nearest ones are just too far from me and I'm too weak to travel. So I put that on hold. I had a phone consult with Dr Thomas Cowan in San Francisco who recommended LDN, but that has to be on hold as well, for now, because I may need to take a narcotic in the near future if I'm going to need an upper endoscopy for G-tube replacement. So I wish I had more professional support of the specialized kind I need, but my options are limited.

    I do have some Equilibrant that I had started a few years ago and never really followed through with. I'm wondering if I should just start in with that, at a very small dose, given my low body weight and hypersensitivities. I was also wondering about trying liquid pine cone extract, but don't want to introduce too many things at once.

    And also I happen to have an Ayurvedic/Chinese medicine herbalist who has recommended David Winston's VX Immune Support (herbal extract including elderberry and others). But I'm not sure if that's specifically good for shifting the T2-T1 balance.

    I'd appreciate any thoughts on this!
     
  2. halcyon

    halcyon Senior Member

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    Do you have a local hospital with a diagnostics lab? I recently found out my (very rural) local hospital sends out all of their more complex blood work to ARUP anyways, so I was able to get easy access to the right enterovirus serology panels. If you do have one close by, just call their lab and ask if they are able to send out samples to ARUP. If so, have your doctor write an order for echovirus and Coxsackie B panels and bring the requisition info (1, 2) in when you get blood drawn.
     
    KRR likes this.
  3. KRR

    KRR

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    Thanks! Have never heard of that, but sounds worth looking into.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Were you having allergic or mast cell reactions to the food or was it a different issue? Also, and I hope she doesn't mind me tagging her, but @kangaSue has a lot of experience with GI issues and may have some feedback.
     
  5. KRR

    KRR

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    Thanks for that. I don't think it's allergic or mast cell reaction, although I really don't know anything about mast cells.. but the tube feeding doesn't seem to bypass the problem, so anything I put into my stomach by tube feels just as bad as if I had taken it orally. The tube is still in, but I'm not using it for now.

    Basically, the problem is early satiety after a few bites, stomach upset, feeling of pressure like a "lump" in my gut, sometimes feeling it up to my throat. Sometimes I can get something down okay but then a very distressing feeling of over fullness and stomach upset hours later, sometimes lasting all day and night. Sometimes when that happens, I can barely even drink water, and just have to wait for many hours until it clears. I don't have an aversion to food, and miss it terribly.

    I was dealing with this situation the past year as I was losing weight, and then the biggest problem was extreme weakness. Now I'm actually quite a bit stronger, as l've been able to tolerate eating a bit more, but it's still not nearly enough, and at this point I can't afford to lose even another pound.

    I've had endoscopy which was negative for what they usually look for, but they don't biopsy.

    Now I seem to have another nerve issue caused by the G-tube surgery itself, and I don't know if that's affecting my digestion too, but my digestion was so poor before the surgery, so it's hard to know. Maybe the fact that I'm having so much nerve pain now externally at the G-tube site, which the docs and nurse practitioners who deal with G-tubes say is very rare.. maybe that says something about my predisposition to nerve issues.
     
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  6. kangaSue

    kangaSue Senior Member

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    No, I don't mind Gingergrrl.

    @KRR , Have you had a (4 hour) Gastric Emptying Study done? That is the primary test for Gastroparesis (GP) and it sounds like that is what you have. Not that "Gastroparesis" is a very helpful diagnosis as it has several etiologies which can encompass abnormalities at 3 levels--autonomic nervous system, smooth muscle cells, and enteric neurons so it's not a case of one size fits all and should really be called "Gastroparesis Syndrome".
    http://rarediseases.org/rare-diseases/gastroparesis/

    Do you have a swallowing problem too, otherwise I can't think of why you were only tried on a g tube without a j tube extension as you need to bypass the stomach completely if you have delayed gastric emptying and yes, feeding into the jejunum can make all the difference depending on whether or not a motility disturbance affects other parts of the GI tract. (Some doctors are lazy (or ignorant) and will only advance the extension into the duodenum too which can still reflux back into the stomach.)

    Fat and fibre are a major problem with chronic GP, reducing the intake of those can alleviate symptoms a bit along with having smaller meals. If you're o.k. tolerating herbal things, Iberogast has some proven efficacy for improving motility, don't just start at the recommended full dose though, some find starting with as little as just one drop and slowly working up works best for them.

    It takes a lot of diagnostic work to gauge what is the right direction to be looking into for a cause for reduced motility. Enterovirus is something getting more attention of late, full thickness biopsies are invaluable there as well as for determining whether the problem is neuropathic or myopathic but it is an invasive measure that rarely gets done. GP symptoms from a viral cause can wax and wane like you mention in having a period of feeling better.

    Fatigue or muscle weakness are not a major thing with GP as a rule, that may be more related to an antibody cause. One thing that crops up a bit that is ME/CFS-like with extreme fatigue along with chronic GI dysfunction is Sjogren's Syndrome. Antibodies can relate to several connective tissue disorders too.
    https://www.inspire.com/kangaSue/jo...on-another-piece-of-the-gastroparesis-puzzle/

    Personally, I have a problem of lack of blood flow to the bowel, Chronic Mesenteric Ischemia which may be more common than the literature indicates but it is also related to a wider problem of autonomic dysfunction which I still haven't got to the bottom of and may involve a vascular compression syndrome just for good measure.
    http://pubs.rsna.org/doi/full/10.1148/rg.341125010

    An absence of findings with an endoscopy is not unusual even with chronic GI dysfunction. It was about 5 years into having chronic GP before I had any sign of gastritis evident during an endoscopy procedure.

    G-tube pain is not rare, in fact it is quite common. You may be one of the unlucky ones that has a nerve severed in placing the tube, again, not an uncommon happening.
    https://www.inspire.com/Duvie/journal/possibly-understanding-the-mysterious-tubie-stoma-pain/

    Don't know if you have a problem with nausea and vomiting, this is interesting anyway;
    Chronic unexplained nausea and vomiting http://www.ncbi.nlm.nih.gov/pubmed/19375605
     
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  7. KRR

    KRR

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    Wow, thank you so much for the excellent info!! I will take some time to think through these things.
    I haven't had a gastric emptying study in many years - first time, I just ate a bit of something with dye in it and then had some kind of scan that showed that the food went through okay. That was many years ago when I was on TPN. (Now they won't do TPN unless G-J feeding has been tried and failed, and TPN is a very big deal that I'm hoping to avoid).

    I think the docs aren't pushing to do more testing now, just because of all I've been through, and I'm not sure it's worth doing testing that wouldn't lead to a specific treatment plan. I think we can safely assume that I have some degree of GP, and I don't tolerate the usual meds for that.

    I do take Triphala, the Ayurvedic herbal formula that is good for gut motility, and it does keep me regular although I haven't noticed it do much for my stomach.

    I don't have a swallowing problem, but the docs who recommended the G-tube saw that my stomach was functional to whatever degree, and thought that the tube could possibly bypass some problems.. maybe partly psychological, although I'm sure now that's not the issue. When I did a trial with the N-G tube, I seemed to tolerate a small volume of feedings, so they took that as a positive sign to go ahead with the G tube. I've been struggling with it ever since (5 months), and haven't even used the tube in the past month, just flushing it with water.

    BTW, the placement of the N-G tube was among the most harrowing ordeals of my life. I knew it wasn't going to be pleasant, but I'm sure I had an unusually difficult time with it, and I only persevered through that hour because the docs were saying it was my only chance. They wouldn't place the G-tube without a N-G tube trial. Just mentioning this, because my unusual degree of difficulty with it might be another clue.

    I'm sure that dysautonomia plays into all this, as I have all the signs of sympathetic overload. Am getting back to practicing some of the relaxation techniques I've known about but never really did on a regular basis, including Buteyko breathing.

    Thanks again, will look into the issues you brought up.

    ETA: Another possible clue is the meds I've been taking that are anticholinergic and may be interfering with neurotransmitters that the vagus nerve needs.. meds such as Benadryl and Ambien. I've taken them several times a week, for the past year, and very small doses, but with my level of sensitivity I can't rule it out as a contributing factor at least. Insomnia is a major problem, but I'm trying to take meds less often now.
     
    Last edited: Aug 28, 2016
  8. Mary

    Mary Senior Member

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    This sounds similar to what I experienced when my gallbladder was inflamed. I just wasn't digesting food properly, and it literally would sit in my stomach for hours. I was given AF Betafood by Standard Process, by my chiropractor who does muscle testing, and it really helped a lot. Eventually I learned my stomach acid was low (maybe the root cause of the problem) and I had to start taking betaine hcl with pepsin with meals and my digestion has been good since.

    Here's a simple test to see if your stomach acid is low:
    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.

    BTW, the chiropractor helped me with several digestive issues, and I would have been much worse off without him. The muscle testing was invaluable.
     
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  9. KRR

    KRR

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    Thank Mary! I'm sure my stomach acid is low. I use some Standard Process supplements, mostly Catalyn as a multi, but AF Betafood sounds like a good idea. I do have silent gallstones, but no one seems concerned because I don't have classic symptoms of gall bladder problems.

    Reminds me to also go back to a Chinese herbal formula for gallbladder, Lysimachia GB formula from Golden Flower herbs, which my acupuncturist recommended.

    I've been a little skittish about taking betaine HCl because I eat so little, but that's something to think about.

    -Karen
     
  10. Mary

    Mary Senior Member

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    Hi @KRR - for your info, I had to take a largish dose of the AF Betafood for a few weeks, maybe 9 a day in divided doses. They're small tablets, it wasn't hard to do, but it made a big difference. If you try the AF Betafood and it helps you, then you should be able to eat more, and then perhaps you could try the betaine hcl with pepsin (I read somewhere that the pepsin is important too, though can't tell you why). I take Swanson Brand betaine hcl with pepsin and it works great.

    I didn't have classic signs of gallbladder problems either. My main symptoms were this early fullness and food just sitting there, especially meals with protein or fat. I didn't have any pain, or just a tiny bit once in awhile. The chiro told me that muscle testing can pick up problems before they develop into acute ones.

    BTW, if you put the "@" sign in front of someone's user name (like @Mary or @KRR), they will get an alert that you are responding to them - this can be helpful so that people know you are responding :)
     
  11. KRR

    KRR

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    Hi @Mary, thanks for the info on tagging.. I receive email notification when a post is replying to me directly, so I didn't understand the purpose of tagging except when you want someone else to be alerted also.

    Anyway, thanks also for the info on AF Betafood. I'm sure I never took enough of it to know whether it would help. With my extremely low body weight, and tendency to react poorly to so many things, I tend to take half of adult doses. Although I'm sure that I have a better chance with Standard a Process products than most others.

    I don't have a practitioner who can get SP products - do you have any ideas? I see that some are listed on Amazon, which I thought was against SP policy, and the retail prices are so high anyway.
     
  12. Mary

    Mary Senior Member

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    @KRR - you're right, the retail Standard Process prices are quite high. They're quite a bit cheaper through a practitioner.

    I get mine from my chiropractor who does muscle testing. He's also the one who determined how much I need. So I recommend what worked for me, which is finding a chiropractor who does this. You can check out the yellow pages (do they even still exist? :confused:) Key words to look for are nutritional counseling, applied kinesiology or something similar. You can also just call their offices and ask if they use Standard Process products or do muscle testing. Some use other brands and do similar treatment, though I had such good results with the AF Betafood I would try to find that.

    One other thing - you can go to the Standard Process website, here: https://www.standardprocess.com/HCP-Search and find practitioners in your area who use their products. I've seen several. In my experience, the initial appointment is generally $100+ (but it has been less too), but follow-up appointments have been the cost of an adjustment, which might be covered by insurance.
     
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  13. kangaSue

    kangaSue Senior Member

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    No worries, time is not a limitation with complicated GI stuff. It's taken me 16 years to accumulate this stuff, mostly from having to advocate for myself. You only got a brief synopsis of some main points though, I could fill a whole volume without even trying.
    It's still radioactive eggs that they get you to eat for the test before scanning you. There is a newer breath test that's being done in the U.S. but you still get to have the egg meal first.
    Was there some other condition you had to be put straight onto TPN. It's not the normal thing without first trying some form of tube feeding. I've tried both and in hindsight, I would take the j tube in a heart beat over TPN if I had a choice. Life was much less complicated when I was able to tolerate tube feeding overnight and a far less threat to your health than TPN. Not that I tolerated TPN either, a moot point with the specialists who thinks it's all in my head (see point below about my views on that).
    I know of a few people with gastroparesis who's tests show there is stomach peristalsis but the pyloric sphincter is not functioning as it should. Acetylcholine signalling can be at fault here and Mestinon and maybe the supplement Parasym Plus might be helpful for that.
    See my answer #463 here http://forums.phoenixrising.me/inde...n-patients-with-cfs.40109/page-24#post-756054 I think the antibodies discussed here may also happen to cause GI dysfunction.
    Don't give the doctors an inkling of that, the bastards will milk it for all it's worth. If I had a dollar for everyone with chronic GI issues that copped the "it's all in your head" routine, I'd be living it up in the Paradise. Well, maybe along with throwing it up too.
    I've had a couple of incidents of idiots trying to place NG tubes. Sometimes it's lack of experience on the part of the medical personnel rather than a technical difficulty.
    Have you had an Autonomic Function Test panel done? It can help with picking up other autonomic dysfunction. I recently had a diagnosis of Restricted Autonomic Neuropathy added to the list with failings in QSART, TST, Tilt Table Test and Heart Rate Variability to Deep Breathing Test
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3543903/
    That goes towards my point of lack of acetylcholine signalling too which can be antibody related too.

    @Mary's point about gallbladder is a very valid one too. You can have a wide variety of problems when they are dysfunctional.

    One other suggestion, search out some abdominal massage techniques, they can help with improving GI motility function. Oh, and TENS or Interferential Current Therapy, these devices do get results for some people.
     
  14. KRR

    KRR

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    Hi folks, I'm surfacing again.. have had to narrow my focus a bit because it's just too much for me to pursue all the possible angles. Currently I have a hugely difficult decision to make about whether to take out my G-tube or replace it with a J-tube.. so many variables to consider, with my history of complications.. So improving my oral intake is really my primary concern, but nothing has helped significantly so far, so I'm back to trying Equilibrant, as I'm convinced the viral issue is key.

    I started the Equilibrant again with ¼ tab/day, sometimes skipping a day, and after about a week I was in a flareup of severe nerve pain (Tietze's syndrome perhaps) in upper back, neck, shoulders, and more frequent migraine which I now think is connected to all this too.

    So I'm wondering if the Equilibrant kicked something up.. I really don't know if I'm in the category of autoimmune illness that contraindicates Equilibrant, as I haven't had the kind of workups that might diagnose some of those conditions. (I'm just not up to running around to local specialists to get a diagnostic label that doesn't lead to any useful treatment, and can't travel to see the docs who are more enlightened on this subject).

    Because my symptoms go through cycles of flareup rather regularly, it's so hard to judge whether anything new I try is exacerbating things. Any thoughts on the Equilibrant would be appreciated!

    Re. the J tube, the surgical site in my stomach is causing so much trouble - I had nerve entrapment from the original surgery a year ago, which is still causing unusual pain at the site, and I just don't know if I can tolerate the site itself much longer. I've seen a nurse practitioner who specializes in tube issues, and have exhausted all her ideas. Plus, given my sensitivities, putting in a J tube is not a simple procedure, and without any sense of whether I would tolerate it.

    I'm just so exhausted on every level and want to be done with all this medical intervention and get back to eating enough, so I can focus more on dealing with the fatigue issue. Ideally it's all connected and everything should improve at the same time!
     
  15. halcyon

    halcyon Senior Member

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    I definitely had an increase in symptoms when starting (and increasing doses) of Equilibrant. Yes it would cause migraines for me as well each time I bumped up the dose. Having gone through it I think it was worth it for the symptomatic improvement it gave me. If it were me, I'd give it at least a month or two of continuous use before giving up on it, unless the side effects are just too great. That being the case you might just try even smaller amounts until it becomes tolerable. That is what I had to do.
     
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  16. KRR

    KRR

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    Thanks, makes sense. It's just a little discouraging to have to lower the dose below ¼ tab and not really be getting much of a therapeutic dose for quite a while, at the same time not really knowing whether my symptoms are from the Equilibrant at all or just coincidence. But my intuition keeps bringing me back to this option, and the support here really helps, so I'll stick with it.
     
  17. otherworldly

    otherworldly very severe

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    i do have very helpful info 4 u but 2 weak 2 type now...will get back 2 u in few days @ least, k?
     
  18. KRR

    KRR

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    @otherworldly, thanks so much but please take care, no hurry!
     
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  19. otherworldly

    otherworldly very severe

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    simple, noninvasive, do it urself advice from a naturopathic pt. of view: whatever the cause, ur gi symptoms scream INFLAMMATION! inflammation causes early satiety as does low hydrochloric acid (hcl) especially. 1st try some betaine hcl w/meals then some proteolytic (systemic) enzymes such as proonezyme, & then if no improvement throw a basic probiotic in there if ur not already on one.


    i dont do conventional medicine & i was in a very similar sitch, i knew if i couldn’t figure it out, i’d need 2 leave the house (which i cant do) & c a doctor & need a feeding tube which would b an absolute last resort (which i wanted 2 avoid since imo they know next 2 nothing about root causes, never mind me/cfs). it took some trial & error, but i figured it out in 2 months time. it was my complete solution. no more symptoms whatsoever & i hope it does the same 4 u!


    also, b aware of any food intolerances of course!


    if ur in the states u can get all these supps. on amazon.
     
  20. KRR

    KRR

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    @otherworldly, I'm so glad to hear that you had such success healing your gut! I've done those supplements without much improvement (not the betaine HCl though, as I just don't eat enough at a time).

    My diet is awfully inflammatory to begin with, so maybe that's a limiting factor. I have to eat whatever I can get down, and that's largely bread and crackers right now. Even a GAPS doctor advised me to forget about improving the quality of foods for now and just get calories however I can. So it's a real bind, and I'm hoping to be able to substitute some better quality foods without having to sacrifice calories. I'm just so sensitive as to what I can tolerate.

    I do take Ayurvedic digestive herbs, Iberogast (although I'm not sure that the mint in that formula is the best thing for me), and naturally fermented sauerkraut for probiotics.

    I am thinking about enzymes, though. I used to take Serapeptase, and wonder if that's a good choice now.. is ProOnezyme a better choice?
     
    Last edited: Feb 24, 2017

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