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Dysbiosis/ GI Treatments

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by albellenfant, Mar 15, 2010.

  1. albellenfant

    albellenfant

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    I am trying to resolve GI issues that had been mild for a long time but have now become quite severe again. My current doctor supports the idea of the hybernation theory and not the NO/ONO theory of Dr Pall. I think the use of items to increase Nitric Oxiide may be at play although I cannot say for certain. As I look back at old ideas to treat the gut and many new ones I have many items to consider. As a former patient of Dr Cheney(I would still be a patient if I could afford him) I must say he helped control my GI issues while under his care. He did the GSDL CDSA and it indicated my dysbiosis was 17 with optimal being 0-4. He commented how severe my case was based on other patients. He first prescribed neomycin short term to eliminate both gram positive and gram negative bacteria that did not belong. He also started me on HCL and enzymes with meals. He added S. Boulardii, seacure,primal defense(I could not tolerate) and a good probiotic. He also had me take an immune modulator called Isoprinosine which I think was a real difference maker me along with B-12/ magnesium/taurine injections. Now that I am not a patient anymore I am trying to formulate the best plan moving forward. I have stated to modify my diet, will add HCL ,enzymes, s-boulardii, seacure, flax seed oil, peppermint oil, and a good probiotic. I am unsure about the probiotic needed to do the best job. I have read a bunch here and elsewhere about different types. I am currently taking align and have started small amounts of live kefir. I came across two products of interest and would like feedback from anyone that may have tried these. These come from betterhealthguy site. The first is progurt from Australia that uses human strains. It is very expensive but the guy who runs the site claims it is very, very good. I have corresponded with Scott since he was in an article on CFS in the Life Extension Magazine and have found him to be trustworthy even though some of his treatments are very extreme. He is by all accounts getting better so I will try not to judge. The other product is offered by Custom Probitics which is a small company and the owner is very open to discussion and I have used his CP1 formula in the past. He has a product called D-Lactate Free that contains L-Salvarius, L-Rhomnosus, B- Bifidum, and B-Infantis. I am cosidering adding this with Align. Any thoughts are appreciated. I must get my gut under control again.
  2. Sunday

    Sunday Senior Member

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    This is coming from a different angle, but - Rich van K and Freddd have suggested that methylation may be a really important part of getting digestive stuff under control. My observations on my own gut stuff affected by methylation are here. I'm sorry, I wasn't able to get any joy out of the search engine searching for RichvanK's post on the subject, maybe you could PM him? He's very good at explaining the biochemistry in the way we ordinary mortals can understand.
  3. Sunday

    Sunday Senior Member

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    Oh, by the way, I meant to say that that thread where I made my comment might have some useful info in it for you. I learned a lot. It's about general gut stuff: tests, things people have tried, and so on - as well as biofilms.
  4. consuegra

    consuegra Senior Member

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    After nosing around for years on gut ecology I am trying the following. The vexing problem is raising the Bifidobacteria.

    Align
    Custom Probiotics D-Lactate free
    Russian Immune by Allergy Research
    Mutaflor, ordered from Germany
    Culturelle
    GNDL digestive enzyme
    Symbiotics Colostrum
    Glutagenics

    Chris

    http://cfspatientadvocate.blogspot.com
  5. SaraM

    SaraM Senior Member

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    Consumerlab recently reported that Culturell and Align do not contain the amount of bacteria mentioned on the box.I do not know how accurate this is. Kirkman lab is now offering a new bifido probiotic called Bifodo Complex with 15 billions organisms at a very good price. I may give this a try for raising bifido level.
  6. jeffrez

    jeffrez Senior Member

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    I need bifidus, too. My alternative doctor recommended Metagenics "Ultra Bifidus DF" to me (I think DF = dairy free). It has 15 billion organisms per dose of only bifidus. Most if not all other brands, like the Kirkman, are probiotic "complexes" that actually only have 3 or 4b. bifidus per dose, with one or more other organisms mixed in. So even though the Metagenics is a little pricey ($30 per bottle at needs), other brands tend to have a lot fewer Bifiduses (Bifidi?), so for the money UBDF actually often turns out to be a better deal for bifidus.

    Having said that, I actually notice more of a difference taking Now Acidophilus + Bifidus 8 billion, which only has 3 billion bifidus per dose. So that appears to be a pretty good brand, although having fewer bifidus. I don't know why it seems better - maybe I also benefit from other strains, or else the metagenics bottle I got had weakened or heat-exposed bifidus in it. Or possibly the bifidus has subtler effects that you don't notice as much. Or possibly it just isn't as good as it's touted, although it's a very well-respected brand. Maybe taking both together would be a good idea. But for bifidus only, I don't think there's another brand with as many per dose as the Metagenics.
  7. leaves

    leaves Senior Member

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    Hey all
    I tried so many probiotics, including Progurt. My experience; they help for a while (cause immune response?) and then the effect wears off. The problem with these probiotics is that they are too small amounts to really affect the gut flora. I am now on (prescribedO VSL 3 DS which is (partly) reimbursed by insurance. This is a very high dose, and CAN affect gut flora. It has 900 billion live baccteria, the strongest probiotic on the market I believe. It is used to treat colitis. So far so good.
    I think besides VSL the best thing you can do is kefir from a good kefir plant (e.g. Dom's). Pretty cheap, effective and easy to make too.
  8. jeffrez

    jeffrez Senior Member

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    VSL#3 seems to be awesome. I was going to try to get that before my doc left the area, but the compounding pharmacist he called never heard of it, and we never got around to ordering it before he left.

    How long have you been taking it? Are you definitely noticing any benefits? Like you said, it really works in colitis (and also prevents liver fibrosis in steotosis), so it would be interesting to see if the effects wear off like the others seem to.
  9. SaraM

    SaraM Senior Member

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    Mr.Kite,
    Do a google search and you will find out that Metagenic probiotics was one of the worst mentioned in Consumerlab report. It only contained around 10 % of what was mentioned on the box.
    Home made kefir is the best probiotics I have ever used, but I do not know if it contains any Bifidus.
  10. jeffrez

    jeffrez Senior Member

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    Typical. No wonder it seemed ineffective to me - trust your gut! :D

    Kefir is dairy, right? Too many allergies for that. I will stick with the NOW acidophilus + bifidus until I can try to get VSL#3 for the steatosis, as I definitely noticed a difference when I was taking the Now.
  11. silicon

    silicon Senior Member

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    You might consider kefir from goat's milk. This is apparently what Dr. Cheney recommends as his probiotic of choice. Apparently people tend to be less allergic to the goat milk-based product than cow milk. I avoided all dairy for 15 years, but am pleased to say that I can actually tolerate goat milk kefir! Unfortunately, I can't tell if it makes much difference in my case--nevertheless I am still thrilled to be able to add a "dairy" food to my so very narrow diet.
  12. brenda

    brenda Senior Member

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    Kefir can be made from young coconut milk and this is the best medium untilt he gut is healed.

    Here is my new guru

    http://www.bodyecology.com/

    She really knows her stuff.
  13. willow

    willow Senior Member

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    I've used CP1.

    In terms of releiving my experience of making my gut function smoother it was probably the best. But on the whole I managed gut symptoms with diet so there wasn't much symptomatic gut relief required. Still, if I had tension in my gut it soothed and released it. But over many months i didn't see any improvement in my gut flora stool testing. Infact there was a little deterioration. I did write and ask Custom if they had any advice but they didn't reply.

    If you're dairy or coconut sensitve you buy water kefir crystals., though FWIW kefir wasn't a winner here... there's a few fermented things I have to avoid.
  14. Sunday

    Sunday Senior Member

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    Besides the goat milk kefir and water kefir, I've read you can also use kefir in nut milks and soy milks. Apparently the grains need a little time to adapt to their new medium, but then do fine.

    Since I am a N European with lots of reindeer and goat (and whatever the prototype of cows was) herders in my ancestry, I do fine on dairy so I haven't tried this. And I'm sorry, but I can't remember the website where I read it, either. But it doesn't take much effort to try. If you want starter grains, I can send some.
  15. zoe.a.m.

    zoe.a.m. Senior Member

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    Haven't seen them mentioned on this forum and just found out about them myself after meeting with a nutritionist who just may know more about physiology than anyone I have ever spoken to, read a book by--and certainly any naturopath or doctor! They're called Dr. Ohhira's Probiotics 12-Plus. Has anyone else tried these? I have only a few days of experience, and chose not to do the "loading dose" of 5 in the am and 5 in the pm. I tried 1 per day and then tried 2 this am and my tummy made some noises, but nothing bad or painful. They do say to expect transient bloating, gas, etc. for a few days, but I know my system is more sensitive, so I'm not pushing it with taking more than 3-4/day.

    I have tried Align and a couple of other very good probiotics and did not really feel a difference, and felt no improvement.

    Also, I have been trying out Turtle Mountain's coconut milk kefir and I haven't been having problems with it, and it's a winner taste wise.

    I figure that kefir+probiotics can't really hurt to try! I really would recommend trying the Dr. Ohhira formula, it's somewhat pricey, but not overly so. Also, for those of us with messed up guts, it's best to chew them and swallow as they have an enteric coating. I don't love the taste of the capsule once it's split open, so I wash it down with some water.
  16. Karin

    Karin

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    After three years of very actively working on my autistic son's gut and my own, here is a quick summary of what was the most effective for us:

    1. Get an IgG food panel done, e.g. at Alletess, which is a blood draw and checks for IgG reactions to 200 common foods. This is not really accepted mainstream, but I can vouch that it was a miracle for me, my autistic son and my typical son to exclude food items from our diet that we are sensitive to (50 for my ASD son, 30 for myself, and 20 for my NT son).

    2. Get on a low starch + gluten-free / dairy-free / additive-free diet, minus the IgG reactive foods. Basically, vegetables, oils, meats, eggs, fruits, nuts, lentils, peas, lima beans. This is very effective at reducing overgrowths of bacteria in the gut, reducing inflamation.

    3. For us, courses of antibiotics to reduce anaerobic bacteria (flagyl) and antifungals (diflucan, ketoconazole), were also effective, but needed to be repeated a couple times a year. Those take care of reducing the load of all the bacteria and yeast that have been thriving after multiple courses of traditional antibiotics that we all have been subjected to due to repeat infections.

    4. Of course, probiotics. For us, what really works great is a combo of Threelac, Reuteri, Culturelle and SuperProBio 75 billions. But this is very personal, probiotics are trial and error and very personal. By the way, we all react to saccharomyces, a type of yeast in some probiotics, kefir, breads, beer, etc... so probiotics based on those are out for us.

    In summary, I would say that a plan of attack from different sides at the same time is good: probiotics, diet, antimicrobials. For my ASD son, we also added anti-inflamatory meds.
  17. cigana

    cigana Senior Member

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    Progurt has 1000million per made-up sachet, so I think it is the strongest. It is the only thing that has actually done something for my bloating.
  18. zoe.a.m.

    zoe.a.m. Senior Member

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    Have you tried the VSL 3 cigana? I'm thinking about requesting a script for it, but am still wary since it's not dairy free--though anecdotal evidence is some non-dairy people do just fine on it. I'm concerned I'll end up with too many dead bugs like I did with my Dr. Ohhira trial... back to the drawing board I guess. Karin, do you find the abx a few times a year control the die-off reactions? The only thing I've heard for this is cholestyramine, but it's $400 from a compounding pharmacy (the only place to get the pure form and not the aspartame-flavored one).

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