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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
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h pylori

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by kat0465, Jan 27, 2011.

  1. kat0465

    kat0465 Senior Member

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    i have just been diagnosed with h pylori and will be starting abx tomorrow. can anyone point me to a good probiotic to help my gut?

    i have a feeling the treatment is gonna be a rough ride;[ any suggestions are appreciated, also, how the heck does one get such a bad bug :confused:

    kat
  2. Mij

    Mij Senior Member

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    Hi Kat,

    I was treated for this years ago, I suspect I had this for years before being diagnosed. I would say I had a couple of days when I felt dizzy on the meds.

    I was taking probiotics for years before starting treatment and didn't feel they helped at all. I eat unpateurized organic sauerkraut on a daily basis now and my gut feels great, it's a great probiotic, high in vitamin C and fibre.

    Mij
  3. zoe.a.m.

    zoe.a.m. Senior Member

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    I've been diagnosed with this as well but haven't actually treated it, though Pyloricin is what I have in the cabinet to start--I was on a heavy-duty probiotic regimen for a couple of months beforehand which unleashed enough symptoms to get me to stop for a while. My doctor offered this up as the first line of treatment, esp. for those sensitive to abx. We also discussed what the regimen would be like if I went the traditional way because I'm allergic to penicillin and all abx derived from that (one of which is in the traditional protocol). While on the phone with my regular doctor this weekend, we were talking about treating and she was researching a new version of the protocol which uses a 'mycin' abx, though I can't recall the name. I've been fighting colds, flus and everything in between for the past several weeks and we decided to go over it again when I'm stabilized.

    Did either of you experience symptoms that you attribute to hp? I've read and heard many things on it, but never heard from anyone firsthand who's been diagnosed with it, other than people who have had ulcers and attribute it to that. What kind of relief did you find with treatment Mij?

    FWIW, I use Dr. Ohhira's 12-Plus probiotics (fermented, chewable (which can be good for those whose guts are messed up), and fairly expensive).
  4. maryb

    maryb iherb code TAK122

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    Hi Kat - I've just finished my H/pylori abx - they really whacked me and it was a push to finish- I was prescribed a lactobaccillus probiotic by KdM so started taking Culturelle straight away - can't tell if its doing anything major yet as my stomach was really messed up with the abx. I do prefer to use Kefir but when you aren't well its such a pain to keep going, the organic sauerkraut sounds a good idea if I have the energy to find some here.
  5. Mij

    Mij Senior Member

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    Oh dear did I experience symptoms? I was practically crawling on the floor I was so sick and weak in my legs. For at least 5yrs I had gut symptoms that came and went but I didn't know what to make of it, I had not heard of h.pylori at the time. I was so fortunate that a virologist I started seeing at time decided to test me because my ME doctor for years didn't think of it because I had too many other symptoms to deal with. I was getting worse.

    The only relief I found was Clarithromycin(Biaxin), Flagyl and Losac a stomach acid reducer. I took this for one week and felt so much better. I also took some mastica gum as a natural supplement. Probiotics are transient so they do not colonize in the gut, I have proof of this because I took probiotics for years and my test showed ZERO Lactobacillus. What a waste of money that was.
    On the other hand kefir and organic unpasteurized sauerkraut will and I have great results with nutrient absorption as well. Soon I will be making my own sauerkraut, I just have to buy the special crock to make it in.

    Mij
  6. zoe.a.m.

    zoe.a.m. Senior Member

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    maryb-Which abx did you take? Were you also given an acid reducer?

    Good info Mij-was the whole protocol only one week? That seems much shorter than I remember hearing. I think Biaxin was the abx that I just recently heard named. I've heard Flagyl can be exceptionally hard on people; do you think you tolerate abx well in general?

    I know that many of my problems stem from the gut (however that was damaged--probably the perfect storm of virus, abx over years and years, and stress and stressful work environment where I rarely had meal times...). I think I don't always think of my systemic fevers and fatigue (and all the rest) as coming from infection in the gut, though I have wondered very much about SIBO and will be tested for that at some point. Mij-Was it a sudden onset of the symptoms that caused hp for you, so that you were able to differentiate it from your other symptoms?

    I was using a coconut kefir (though they changed the name to "cultured milk") since I can't handle dairy in any form, not even goat's milk. It seems to improve things for some time and then I crash. I often feel that if I did not require food, I could possibly feel almost normal! Poor gut/GI!!
  7. Mij

    Mij Senior Member

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    Our poor guts is right!

    Yes my protocol was for one week although I have read that 10dys is better? Yes, Flagyl is hard on the gut but my gut was so sick I couldn't tell either way.
    I have not taken many abxs in my life and yes I seem to tolerate them well.

    My ME onset was a sudden viral onset and I did have a very sick gut so it's difficult to know for sure whether h.pylori was a culprit at the time.

    I can say the first 10 years(before I was treated for h.pylori) of my illness my gut problems would come and go. After being treated(around 8yrs ago) my gut problems are different and not as severe. So yes to your question that my gut problems now are different. I find the unpateurized sauerkraut VERY helpful.

    Mij
  8. kat0465

    kat0465 Senior Member

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    Mary,
    the abx is so hard to take!! they have me on flagyl, and tetracycline, and zantac. 12 pills a day for 10 days. i feel awful when i take them, also the dr didnt say to take probiotics. but i know im gonna need them with so many abx. did you take yours when you were taking the abx?? or after the protocol was finished.

    i have milk kefir, but have put it in the fridge and dont have the energy to make it every day :( mij the organic saurkraut sounds good, my gut symptoms have came and went for about 2 years now. just thought it was your typical heartburn. well when this hit 3 weeks ago, i was in such pain i thought i was dying!! they first thought gall stones, but the ultrasound came back normal, the bloodwork tested positive for h pylori, had never heard of it before. and im pretty sure i have ulcers, although i havent been scoped. it sure feels like theres sores in my stomach! pain is somewhat better. not bent over in excruciating pain any more, but mornings are hell, seems like the longer i lay down the worse the pain gets. im scared this will never resolve, like all the other stuff( cfids/fibro) thanks everyone for posting, i need all the info i can get.

    Kat
  9. maryb

    maryb iherb code TAK122

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    Hi Kat I was only prescribed abx for 1 week - KdM said to start probiotics after finishing them, I'm the same as mij - acute viral onset immediate gut problems and also had h/pylori 5 years ago so its come back again. I was on clairythocmycin(sp) 1000mg pd -amoxicillan 1000mg pd - plus omazeprole which I couldn't take. Its standard treatment in the UK - 1 week - the cost cutting NHS again. I'm definitely going to try the sauerkraut after finishing the culturelle. I too have casein intolerances so no dairy,sheep,goats products for me either, such a pain.
  10. Mij

    Mij Senior Member

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    Kat,

    I am hopefull your symptoms will resolve because they sound exactly like mine were- bent over excruciating pain. I have totally empathy for you. I should also mention that after the abx and flagyl it took around one month to feel back to normal again but the acute symtoms went away soon after treatment.

    Mij
  11. zoe.a.m.

    zoe.a.m. Senior Member

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    Just wondering if anyone was scoped to find out they had H. pylori or scoped afterward...? It's something I would like to pursue and it seems like the only real test of just what's going on "in there." That's probably not the case though if you have really acute onsets like some of you are describing with bent-over, excruciating pain though. I think I had those really acute symptoms years ago, but it took 10 yrs of speaking about the symptoms (and an out-of-network doctor to order that testing) to even have a lot of my symptoms seriously addressed.

    Good thread and very useful info. Now I know to clear my schedule for when I try this; that's for sure. If I end up trying the Pyloricin and have any good results, I will be sure to post about it. It sounds like it might be worth a serious try before all of the abx, and since it was a specialist MD who recommended it, I have to assume that he's used it with some success before.

    Kat, I feel for you with the doxy; I just can't tolerate that at all... When I tried to take it several years ago, I ate (what you can eat with it, and 4 hrs before and after) to ensure that I wouldn't get sick and promptly vomited about twenty minutes after each pill. It's a real no-no for me--I wouldn't put myself through it again! Sounds like your doc missed the boat not telling you to take probiotics, at least afterward. There is a prescription-strength probiotic, VSL-3, that some people use (dairy-derived though for those who are sensitive) and it sounds like a really serious probiotic and worth a try if you could get your doc to prescribe it. The protocol(s) sound like there wouldn't even be a point to taking probiotics until you're done with the abx; I can't imagine anything could survive that number of abx!
  12. maryb

    maryb iherb code TAK122

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    My H/pylori was found via saliva testing - it needs to be at least a couple of months after finishing the abx before you should test again. The only way to know for sure if something else is going on is to have an endoscopy, If your symptoms don't resolve once the stomach has healed and settled down then I suppose this would be th next option, I would give it 6 months at least though, nothng happens quickly with this illness.
  13. kat0465

    kat0465 Senior Member

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    thanks mij, that gives me some hope that this will get better. with my nk cells so low and my immune system so screwed up,it's scary!
    thanks to everyone else who posted, i know a lot more than i did about h pylori now. mij, did you eat the saurkraut after you finished your course of abx?? im off to the organic food store to look for some. :)

    ((Hugs)) Kat
  14. kat0465

    kat0465 Senior Member

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    Maryb,
    my infection showed up in bloodwork.may i ask if you had a scope done?? and once the abx was finished, did they keep you on some kind of meds to help your tummy heal???
    seems we need something to continue the healing, i've been reading up on natural things like mastic gum, pine nut oil, and aloe vera.ooh, and a major change in diet is probably in order.... sigh;(
  15. Mij

    Mij Senior Member

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    Kat,

    No I did not eat the sauerkraut after the treatment, it was 8yrs ago and I was not familiar with sauerkraut back then. I took Mastica Gum for 2 months. I just started the sauerkraut a couple of yrs ago and what difference in my gut!

    When you buy the sauerkraut make sure that it says RAW UNPasteurized Organic with sea salt, you will get the full benefits.

    Good luck!
    Mij
  16. maryb

    maryb iherb code TAK122

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    Kat I only finished the abx last week and still feel terrible, my stomach is struggling to cope with the aftermath, It was actually much better before the abx:( now I've got gurgling, acid reflux, awful pain and just feel quite ill. Just wish I could get out to try some organic sauerkraut. Any natural alternative that is proven to work must be better than the abx, I did look around but couldn't find one, I never saw the Pyloricin anywhere, worth a try I would say.
  17. anne_likes_red

    anne_likes_red Senior Member

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    Active Manuka Honey is supposed to be effective agaist H Pylori, but there has been some question about the levels of the "active factor" in some honeys labelled "Manuka" in the UK so you would need to research it a little.

    I make live probiotic sauerkraut - it's easy, but you need a couple of weeks at least for it to be ready :(
    There must be a supplier in the UK. Any live probiotic sounds like it would be good for you right now. Hope you feel better soon!
  18. zoe.a.m.

    zoe.a.m. Senior Member

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    Thanks for the reminder anne-likes-red. I just bought that honey last week! And with hp in mind no less... My brain is just drained these days. I was super picky in which kind and from where I got it, though I haven't opened it yet. I heard about it on a talk show and wrote down the name and off I went.

    Okay all of you sauerkrauters: how the heck do you make the stuff? And does it require a giant crock?

    Hope things improve maryb, I'm on abx right now (but the better ones) and your description sounds just awful and like the kind of thing to nip in the bud so that that doesn't become it's own problem! If I ever get to the Pyloricin (and/or manuka honey), I must remember to post here (though it sounds like months would go by before I'd have any results to compare anything to...).
  19. anne_likes_red

    anne_likes_red Senior Member

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    Sauerkraut

    zoe :)
    I use the wild fermentation recipe (Sandor Katz)

    hmmm here you go:[video=youtube;i77hU3zR-fQ]http://www.youtube.com/watch?v=i77hU3zR-fQ[/video]

    I use cabbage and himalayan salt, and a glass jar. Every couple of times I add a probiotic (I use bio-kult) into the mix. The end result is a digestive aid and a live pre/probiotic food which is high in Vitamin C.

    Anne.
  20. tahoma

    tahoma

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    Mij,

    What brand is the sauerkraut you get?

    T

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