Intestinal dysbiosis

[PATMsufferer]

I just got the results from my first stool sample today, and they indicate some significant disturbances to my gut flora:

"The immunomodulatory microbiota is greatly reduced. Furthermore, the protective (luminal) microbiota and the mucosal microbiota are reduced: The protective barrier function and the supply of the intestinal mucosa are not sufficiently guaranteed. The proteolytic microbiota is within the normal range and yeasts are undetectable. Molds were not present. The pH of the stool sample was too high in the alkaline range (7.0)."

"The findings show a dramatic change of intestinal ecology that indicate significantly impaired immune and metabolic functions."

"The constellation of findings of mucosal microbiota suggests an inadequate nutrition of the intestinal epithelium and insufficient stimulation of mucus production. A risk for disorders of the mucosal interface and the development of inflammatory changes in the mucous membrane is noted."

The specific strains of affected bacteria are:
Escherichia coli 10x reduced
Enterococcus spp. 1,000x reduced
Bifidobacterium spp. 10x reduced
Lactobacillus spp. 1,000x reduced
H2O2-Lactobacillus 1,000x reduced
Faecalibacterium prausnitzii 10x reduced
Akkermansia muciniphila 1,000x reduced

Stool-pH: 7.0 (too high, it should be 5.8-6.5)

The following gut flora were normal:
E. coli Biovare
Proteus spp.
Klebsiella spp.
Pseudomonas spp.
Enterobacter spp.
Citrobacter spp.
Bacteroides spp.
Clostridium spp.

I was given the following dietary options to help increase Faecalibacterium and Akkermansia:
Bananas, not too ripe
Oats
Frozen Peas
White beans
Lentils
Pasta (cooled)*
White potatoes (cooled)*

*Not sure what "cooled" really means here, but I'm just translating from the German (as I currently live in Berlin): Nudeln, abgekühlt

I'm supposed to take probiotics (Pro-Symbioflor in combination with Symbioflor 1) for at least 2 months and then provide another stool sample. I'll let everyone know how my PATM responds to this course of action.

[PATMsufferer]

After over 3 months of trying probiotics and prebiotics, I'll report my findings thus far.

The short story is that my PATM reactions have not been reduced from the intervention; however, a follow-up stool sample test also revealed that my gut flora was (almost) not changed at all by the probiotics/prebiotics - the only change was that I got my Bifidobacterium species back to normal, but not any other species (i.e., Lactobacillus, Enterococcus, E. coli, etc.).

I took the probiotics religiously, and tried all three commonly available forms (i.e., capsule, powder, and liquid). I started with Custom Probiotics Adult Formula (capsules). I then moved on to their 11-strain powder. While taking these probiotics, I was also taking drops of Enterococcus and E. coli (ProSymbioflor). I also tried other probiotic products (e.g., SymbioLact sachets) during the course of the intervention, and I tried the liquid probiotic Symprove for a week as well. I found Symprove to be highly effective, and if I hadn't spent all my money on the Custom Probiotics stuff (which I did not find to be especially effective), I would have invested in a 12-week dose of Symprove.

I also took 5 grams of oligofructose powder per day (3 grams at breakfast, 2 at dinner), and 10 grams of inulin each day (5 for breakfast, 5 for dinner). I was also regularly consuming kefir and Greek yogurt.

I feel that this probiotic/prebiotic intervention significantly improved my digestion (it might have even returned it to pre-PATM levels), but I find it interesting that this improved behavioral outcome was not associated with an improved intestinal ecosystem. As stated before, it also did not improve my PATM.

For anybody considering probiotics, I would recommend taking liquid probiotics (e.g., Symprove) and also oligofructose and inulin powders (I'm not sure how effective capsule and powder probiotics are - at least for my condition).  

For my second stool test, I also found increased zonulin, lysozymes, and butyric acid and slightly increased nitrogen content. My water content was slightly low. Stool pH was still too alkaline. Calprotectin and lactoferrin were both fine. Pancreatic enzymes were fine, as was bile, and IgA, EPX, and beta-defensin were all fine (so I shouldn't have a gluten intolerance). There were also no detectable parasites, but H. pylori was at borderline levels (i.e., potentially inconclusive).

The increased zonulin and lysozymes suggests that I have increased intestinal permeability (i.e., leaky gut) and mild inflammation. I wonder if increased levels of butyric acid could be causing my body odor issues since butyric acid is famously pungent and it might be able to leech into my bloodstream given my increased intestinal permeability.

I'll try to get a referral to a gastroenterologist and get tested for SIBO. I wonder if my lactobacillus spp. are low because they're competing with harmful bacteria for space in my small intestines. In the meantime, I've been recommended to continue the probiotic treatment and to add supplements like zinc, selenium, vitamins A+C+E, as well as the B vitamins (although I recently got my B12 levels assessed and they're way too high - so I'll find a way to avoid that vitamin). I think I'll also go back to protein powder, if I can work it into my budget. I might also try "Luvos-Heilerde", which is an ingestable clay product made in Germany. Since Grateful had success with diatomaceous earth, and since there's some research on clay being a good source of minerals, I might give it a shot as well.

[Betterdays7]

Thank you so much PATMsufferer for posting this information!! I always knew this problem was gut related. The beneficial strains you lack may very well be what others in this forum have depleted. I have taken very expensive probiotics in the past and didn't notice significant benefits. But in reality it is very difficult to change the ecology in your gut.

You may have read in various places that your body needs to be more alkaline or acidic, but the fact is that this is over-simplifying a very complicated topic. Your body’s average blood pH is generally between 7.35 and 7.45, which is slightly alkaline. However, the various organs in your body require very different pH levels to work efficiently. Your stomach, for example, needs an acidic environment to work properly, so this has the highest acidity in your body (a pH of somewhere between 2 and 4). Your colon requires a slightly acidic environment, i.e. a pH between 5.5 and 7. Even within your blood supply there is variation – blood that has circulated around your stomach has a lower pH than blood in other parts of your body.

This is why taking raw unfiltered Apple cider vinegar and HCL supplements 15-20 min before a meal will greatly help digestion in our case. We lack acidity.

As for probiotics taking a few or lots of capsules will not make much of a difference. You have to make it a life style and eat more probiotic rich foods as well. Prebiotcs are also very important like the one you mentioned above.

Again thanks for your post hoping to take the test soon.

[PATMsufferer]

Thanks for the information! I've read that changing the intestinal ecosystem is something that no probiotic could ever hope to do by itself - it's like planting a small group of trees in a rainforest and hoping the entire rainforest takes on the properties of those trees.

So I won't be pinning all of my hopes on the probiotics (although Pro-symbioflor contains species that I've never tried before - Escherichia coli and Enterococcus spp - so it'll be nice to see if that makes any difference). I will definitely also modify my diet based on these results.

I think I'll also try apple cider vinegar. I asked my doctor what the elevated pH of my stools might mean, and she said it doesn't necessarily mean any one thing in particular - diagnostically, it just means that there's an imbalance somewhere in the digestive tract, but it's hard to know where.

The alkaline stool is interesting because I once briefly flirted with the "overly acidic body" hypothesis by drinking very alkaline water (expensive mineral water - not exactly kangen water, but close) for 2 weeks, and my PATM was horribly worse. It's interesting to wonder if the interaction of alkaline water with an overly alkaline intestinal environment played some kind of role in this.

[da16424]

I had blood work done last week and they found nothing out of the ordinary. I'll post my results as well when they all are sent to me. Thank you for posting this though and let us know if the diet + probiotics works.

[PATMsufferer]

I got to see a gastroenterologist, and he had me do (yet) another stool test and blood test. All of the tests for parasites, viruses, and unusual bacteria came back negative (i.e., no h. pylori, no worms, no c. difficile, etc.).

My DAO levels (in the blood test), however, were low and within the range of having a histamine intolerance. I found this interesting since my reactions always increase when I drink red wine, which has high levels of histamine. I'm trying to limit histamine-rich foods to see how PATM responds.

I also made a new video of my reactions. It's the clearest video I've been able to make so far. Search for "PATM, coughing, TMAU, trimethylaminuria" on Youtube.

[patmhalp]

Patmsufferer thank you for sharing your recent info and also for making this video.  Did you get to show this video to the doctor yet?  What does he think about your PATM theory?  I believe if we can supply enough evidence to 1 doctor who will finally believe us this will start a chain reaction in the medical community to reexamine our theory.  I went to 3 doctors and they all rejected PATM, one was an allergist specialist who said there is no such thing as being allergic to people.

[PATMsufferer]

I haven't shown the video to a doctor yet. I came across a TV program in England called "Medical Mysteries" on Channel 5, and I wonder if they might be responsive to a video like this.

I've also been looking around for researchers (e.g., James F. Meadow at the University of Oregon) who publish on people's "bacterial clouds", but I'm not sure how responsive they would be to me contacting them out-of-the-blue and saying :"Hey, you think a lot about people's bacterial clouds. Do you think this cloud could contain chemicals or bacteria so offensive that they make people cough from 20 feet away?" I'd probably come across as some weirdo, especially if I come ready with some homemade videos to prove my point (sorry, I've become such a cynic...)

I realize that this video probably still wouldn't convince a lot of skeptical doctors out there (i.e., they could still ask: "Did you forget to shower for, like, a week or something? Did you have a severe lapse in hygiene? Maybe you stepped in dog poop on the way to the appointment? How do you know it's not mold/fungus on your clothes, coat, shoes, etc.? Did you stage this in some way? Why should I think it's a metabolic problem as you seem to think it is?"

All I can say is: Please, look at the staring, listen to the frequency and intensity of the coughs (who coughs like that because of body odor or dog poop?), look at the woman having to drink water. And it's not just one person coughing - multiple people were coughing in the same way. These are highly unusual and distressing behaviors (for everyone involved).

And what the video shows is my daily experience. I was not having an exceptionally bad day that day - that is what I have come to expect whenever I occupy a room with people for any amount of time.

[patmhalp]

That cough is the same for me,  I hear it all the time, recently it has been more sneezing though, but when I stay in a room and people start sneezing then they start giggling, people i'm around are not dumb I'm sure they attribute it to me.

[grateful2011]

Yes, patmsufferer , I do highly recommend Diatomaceous Earth food grade - thanks to someone else who graciously told our forum about this excellent supplement.

Check out youtube videos about it, for the many health benefits in addition to keeping me patm free.

I take it twice a day, in the morning and before bedtime- about 1 tablespoon each time.

Thank you, thank you for sharing your valuable information and results with the forum.

God Bless you always -

I get mine from amazon

[isuffertoo]

Please everyone - only a pcr test for fungus -- candida fungus yeast -- all relevant -- just get Suzanne summers- Toxsick book -- do what it says exactly and u will decrease all reactions after a few months -- also do the d-earth and stay away from all chemicals

[uriDm]

why pcr test?

[isuffertoo]

Pcr is only concrete test will show a fungus in blood. Don't bother testing stool. Stool is inconsistent. This is my advice it worked for me last year and then I fell victim to Starbucks and so on and it didn't take much for it to return but I did go extreme on eating bad after it was gone - I know what works and what doesn't and who's a whack job on here and who's not. I keep it real I work in the medical field as others here also.

[PATMsufferer]

How do we get a PCR test for candida? Is it different from testing for IgG, IgA, and IgM antibodies?

Compared with other medical tests, stool samples can be unreliable (i.e., highly contingent on things you've just eaten and on proper collection methods, etc.), but if there's a significant "fire" raging somewhere in your body, even an unreliable stool test should be able to reveal at least some of the "smoke", I would think.

Of course, a stool test for candida is not an "either-or" test: Everybody has candida in their bodies, and a stool test only suggests whether there might be excessive amounts of it in your stools.

At the lab I used, normal levels of candida/yeast are given at <1000 CFU/g, and both of my tests came back <500 CFU/g (i.e., resoundingly negative for candida/yeast overgrowth).

I've never had a serum test for candida, but I'm willing to ask for that test if it is definitely better.

[soiledsystem]

I had PCR stool testing through Metametrix (lab is called something else now, I think Genova).  It showed +4 for Yeast/Fungi, the highest rating, but it wasn't Candida.  It said "taxonomy unavailable".  I'm one of the PATMers with the electrical type.

[PATMsufferer]

          Since my stool sample came back with abnormal results, my doctor had me do a follow-up (which was covered by insurance). This sample tested for the following:

Rota-virus
Adeno-virus
Astro-virus
Noro-virus

Salmonella
Shigella
Campylobacter
Yersinia    

Calprotectin

          All of the viral/bacterial tests came back negative, and my calprotectin levels fell within the normal range, indicating that there isn't significant inflammation of my intestines. A colonoscopy last year ruled out H. pylori as well as Crohn's and colitis, so in my case, it seems that intestinal dysbiosis is the primary problem with my digestive tract.    
          I decided to try some expensive probiotics to see how my intestinal dysbiosis responds to them. I tried probiotics off-and-on before, but never anything more than 25 billion CFUs (and most were just 1-5 billion CFUs), so I'm trying Custom Probiotics CP-1 formula, which has 50 billion CFUs. If this intervention doesn't alleviate anything, then my next step will be SIBO and TMAU testing, since intestinal dysbiosis (as well as kidney/liver damage) can sometimes cause secondary, non-genetic TMAU.

[PATMsufferer]

Has anybody tried zinc-carnosine? (Paper: "Zinc carnosine, a health food supplement that stabilises small bowel integrity and stimulates gut repair processes")

[withdrawnupnorth]

I had my breath test n tool test back positive for a serious stomache infection called h pyloti. Infection and active duodenal ulver disease. Treated with helicobactr pylori. I can eat again but small portions. I completed my candigone n saccharomyces boulard just before I start my antibotics. My sinus infections n migranes are gone. I stop sweating so im off estrogren pills n sleeping pills. I am stress free n sleeping again. I dont have reactions like before but thats only outdoors, see how everyone reacts around me at work tokorrow. My bad breath stopped too n no longer sick. I was sick 3 months

[PATMsufferer]

Did your stool tests also assess your gut flora and fungi/mold levels? It looks like Candigone is a good product, but if you don't actually have a candida infection, it might not be doing very much for you (although it might be preventing a candida infection, I suppose). It might be worthwhile to look into some good probiotics, especially if you're also taking antibiotics.

[withdrawnupnorth]

Doing my stool test tomorrow. Still getting reactions but reduced by 75%.
Restarting my candigone, sac boulardi, n brown rice protein owder. Hopefullynif its candida it will kill it. I complete my antibotics but my side is still hurting. Pushing for a scope next.

[grateful2011]

Excellent info ! You inspired me to be a part of the American gut project - to get an analysis.

Cooled potatoes ( eat cooked boiled/baked potatoes after refrigeration of a few hours ) to me is so we can get the benefits of - Resistant Starch - which I talked about in an older post of mine .

Thanks again and God Bless always and keep us updated please !

[PATMsufferer]

Thanks for clarifying the 'cooled' bit!

[mola123]

Is not clear to me. Do we have to boil it first, then allow it to cool?

[PATMsufferer]

The potatoes should be cooked somehow first (boiled, baked, etc.) and then cooled. Potatoes and pasta should always be cooked first to kill any bacteria they might have, then it's possible to refrigerate them and eat them later.

[grateful2011]

Only baked or boiled potatoes (not fried) that are then allowed to cool in the refrigerator for a few hours - before eaten
will give you the benefits of
the healthy Redistant Starch

[grateful2011]

Correction: Resistant Starch

[drewallergic]

Good info.  So what was the test called?

[PATMsufferer]

The specific test was called KyberKompakt Pro (it's a German test). It tests for five things:

1) Luminal flora (e.g. Lactobacillus, Bifidobacterium)

2) Immunomodulatory flora (e.g., Enterococcus spp.)

3) Mucosal flora (e.g., Faecalibacterium prausnitzii)

4) Proteolytic flora (e.g., E. coli Biovare)

5) Fungi/mold

So you can probably ask your doctor for a stool sample test and just make sure it tests for these 5 things (at least).

The only downside is that stool tests generally aren't covered by insurance (except maybe if a doctor thinks you absolutely need it). The bill for this test was around 70 euro for me ($80), but a stool test could cost more or less depending on where you live.

[Lifeisgoodbut]

Thanks so much for this info, very helpful!

[hopeful12345]

Thanks for sharing this.  Useful information indeed.  Seems like you definitely might have leaky gut.

I provided some suggestions on your other thread before seeing this one.  It sounds like you already have another plan for the next few months, though.  Good luck!