Gut Bacteria As Possible Cause/contributor To Pots?

[yogini]

Not sure about whether there can be too much good bacteria (or not), but I do agree with Issie that gas, bloating, etc can be a sign that probiotics are working. My GI doc a few years ago told me to expect those symptomps. He also said there are different probiotics and sometimes you have to try a few to find the right one. The ones that are most studied are FloraStor and FloraQ.

I hope I'm not offending anyone by saying this, but at least for myself, I want to be careful to distinguish bacterial overgrowth from "leaky gut". I think "leaky gut" can be a generic, controversial diagnosis that isn't always recognized by the medical establishment. At least in my own case, I think whatever is going on is something that is medical and specific.

I am going to the store shortly to look for coconut oil - both in the oil and capsule form.

[cmruls]

I got my coconut oil from amazon.

[sue1234]

Here is the article from PubMed talking about the relation of insulin restistance/diabetes to bacteria:

http://www.ncbi.nlm.nih.gov/pubmed/18305141

When I say "leaky gut", I mean it in a medical sense that equates to "permeable membrane". In this mainstream medicine article above, they talk about how bacteria can alter the intestinal lining and make it permeable. If I remember from other places of reading, once the membrane is permeable, that's when the proteins can get through and that sets up allergy-type reactions to foods(or, I guess you would say intolerances). I used the word leaky gut in a medical sense, now that it is written about in mainstream medical.

I have read the Yeast Connection(probably 8 years ago) and many other "alternative" books. I am right now getting my information from PubMed and other scientific publications. That is why it is fascinating. Since 1999, when I was tired, I have read all about yeast, leaky gut, probiotics, etc. in all the alternative medicine areas. I did the Nystatin. And the stronger anti-fungals. I then replenished with probiotics. At first they didn't bother me, but in the last few years, they bloat me. I understand die-off and herxheimer, and all that stuff. Like I said before--the gas does not move! That is the issue I have with taking probiotics. I have days that I cannot sit still or stand, and end up only lying on my side because that is the only position I can breathe due to the bloating.

Last year, when I took the antibiotics and the anti-fungals, the bloating FINALLY went away. Then I started the probiotics, and within 4-5 days, the bloating started back up and lasted a good six weeks.

SIBO is complicated. I suspect I've had it for 10 years, and no g.i. doctor has addressed it effectively. I know that is one separate issue. And, then there is the ecology of the bacteria that presents the possible issue with POTS. I, for one, cannot simply be fixed by taking probiotics, or I will smother due to abdominal compression!

Yogini, it is my intent to discuss this with mainstream medical articles to back up the statements. I have provided a few, and Firewatcher provided a few. I don't intend to bring in "alternative" medicine into this thread. I have followed that info for years, and at this point, I want evidence-based information. That is fine if someone wants to start a new thread on alternative medicine theories, etc.

[bruc]

If your problem has the words “Small intestine” in it – then bacteria are not part of the equation because bacteria are not part of the digestive process in the small intestine. If your problem has the words “Bacterial Overgrowth” in it, then you have too much bacteria – adding more bacteria won’t help you. With your intestine’s ability to cleanse and protect itself diminished, good bacteria can overgrow just as much as bad.

My current GI motility specialist has said the same as well as another highly respected one on the west coast.

[Birdlady]

Let me throw out my theory for everyone to ponder. Why did our bodies allow these bacteria or yeast to overgrow in the first place? I think it is immune suppression. We have to figure out why our immune systems are not working properly and fix that underlying issue.

I do not think these bacteria or yeast can be starved out or killed with antibiotics, coconut oil or any other things like this. If you go on candida forums, no one gets better. They have to eat such a strict diet to feel ok and if they cheat at all with a piece of bread or even a piece of fruit, they are back to square one.

For me, when I take probiotics I might as well be taking nothing. I don't feel a thing from them. Diflucan didn't do anything for me either.

[sue1234]

Dana, I agree that the immune system and the bacteria are intertwined.

[firewatcher]

Dana,

Actually the research is finding the opposite: the host's immune response is DEPENDENT on it's gut bacteria!

Gut Bacteria plays key role in immune response

Stress wrecks intestinal bacteria and immune balance

Our immune system may be weak because our gut flora is out of whack.

Edited May 8, 2011 by firewatcher

[HopeSprings]

Oh my, disappointed to hear probiotics make things worse for many of you. It made so much sense. Next...

[yogini]

I'm glad that we are all looking for a medical explanation to all of this.

Probiotics didn't make things worse for me - I'm not sure they really helped me ither, but they do help lots of people. If you haven't tried them, they are definitely worth a try. We are all so different.

On the immune system, I have to say that mine is OK. For the first few years that I had POTS, no illnesses at all. For the past couple of yrs, I've a cold or two a year at most, knock on wood!!! I think bacteria can also get off from diet, medical conditions, side effects from meds and other reasons, though many people with POTS do have immune system issues.

I tried coconut oil today. Made fried potatoes with it, not very creative, I know. They were good, but I can tell that I'm going to get tired of the flavor soon. I may have to look into getting the capsules. Or maybe find a way to mix it with chocolate, lol!

[issie]

Yogini, it is my intent to discuss this with mainstream medical articles to back up the statements. I have provided a few, and Firewatcher provided a few. I don't intend to bring in "alternative" medicine into this thread. I have followed that info for years, and at this point, I want evidence-based information. That is fine if someone wants to start a new thread on alternative medicine theories, etc.

Well, I guess that's the end of the discussion for me then. I tend to learn toward alternative solutions over chemical man made solutions any day. I think each person should be able to discuss their "opinions" without having to dictate which direction that opinion goes. Sorry Sue, don't really agree with your stance on this.

Issie

[Birdlady]

Yogini, it is my intent to discuss this with mainstream medical articles to back up the statements. I have provided a few, and Firewatcher provided a few. I don't intend to bring in "alternative" medicine into this thread. I have followed that info for years, and at this point, I want evidence-based information. That is fine if someone wants to start a new thread on alternative medicine theories, etc.

Well, I guess that's the end of the discussion for me then. I tend to learn toward alternative solutions over chemical man made solutions any day. I think each person should be able to discuss their "opinions" without having to dictate which direction that opinion goes. Sorry Sue, don't really agree with your stance on this.

Issie

I agree with Issie. Why does it matter where/what the opinion is based on? It is just good to get a dialogue going. I somehow missed this part of your post Sue and I'm going to check out of this thread as well. Nothing I talk about is being studied and it's mostly from trial and error from my husband and I. It is also based upon lab results as well. I find my husband and I are an interesting case because we both have POTS now. However he has a completely different type of POTS than I do! He did not have POTS when we married.

If I can vent for just 2 minutes here... The biggest gripe I have with this forum is that most are not willing to take a leap of faith here. Everything has to be in a study, proven by some big shot researcher or acknowledged by mainstream docs for it to be an OK topic of discussion. I see the negativity against "alternative medicine" all the time on here and it ticks me off at times. It took 10 years for the mainstream doctors to even acknowledge my illness, so why would I waste more time with them? To each their own I suppose.

I don't think POTS will ever be cured by mainstream doctors. It will be up to the individual sufferers to find out what the underlying issues are for their POTS. No doctor or researcher has time to test all of us individually, so we have to take responsibility for ourselves. I think I will be taking a break from the forums for the time being. Have a good summer everyone.

[firewatcher]

"I agree with Issie. Why does it matter where/what the opinion is based on?"

I think that so many of us have had our sanity and symptoms questioned for so long that we absolutely have to "medical proof" to be able to say: "SEE! I told you I was SICK!" There are also a LOT of snake oil out there that can get us hurt badly. Even healthy people without POTS have ruined their health with fad health-care.

"The biggest gripe I have with this forum is that most are not willing to take a leap of faith here. Everything has to be in a study, proven by some big shot researcher or acknowledged by mainstream docs for it to be an OK topic of discussion. I see the negativity against "alternative medicine" all the time on here and it ticks me off at times."

I'll confess that I am particularly bad about this. I am a nerd. I read medical journal articles. I also have seen the greatest improvement in my symptoms by seeing and following the direction of an alternative practitioner. I see M.D.s once a year now and go to my Chinese Medicine practitioner for everything else. I am slowly weaning myself off of Western pharmaceuticals and moving to Chinese herbals. Is there hard "medical science" to back this up? Nope. No studies on Chinese Medicine and POTS, ever. But it makes sense to me: a holistic theory used to treat a whole body condition.

I think sue1234 just wanted to target the discussion to get ideas to discuss with her docs.

Edited May 9, 2011 by firewatcher

[cmruls]

So when I went to the big university top specialist who was treating me for something else, He say 'in my study of 10,000 patients. .....this works' but I tell him that in me it didn't work or I had side effects from his med. He just tells me back 'in my study of 10,000patients......this works'. As individuals we are not part of a study and we do not always fit exactly in their study. They can not treat individuals differently because that will invalidate their study. I have not been impressed with studies and evidence based treatment. I will continue to question and look for other answers/ideas while all along accepting all with a grain of salt.

[sue1234]

First off, I made it clear that anyone that wants to talk alternative medicine can begin a new thread--that is fine.

I have done the alternative route for 10-12 years, so I have experience with that route extensively. If you knew the thousands of dollars I have spent on alternative medicine over those years, then you have no right to be sitting here saying I am "discriminating" against alternative medicine--REALLY! I think this qualifies me to have the "right" to have my opinion on which direction I want to discuss in this thread. When I read these articles, they were from mainstream medicine, and that's what was fascinating to me.

If I read on any of the alternative medicine boards, I forever see blanket statements to "take probiotics and balance out the bacteria". Thats fine--I do not argue at all that getting the bacteria in balance is wrong--I know it has to be done. I am trying to discuss deeper issues than that here. And, that's where I found all this research as to the different types of bacteria that do different things. And, even deeper, how all the various endotoxins affect different systems of the body.

If it was as simple as taking probiotics, we would all be healthy.

I don't discount alternative medicine, it's that I am at this point, looking at the medical research for this topic. I think it is too difficult to be talking "apples", and then trying to bring in "oranges" and make any sense out of it.

[sue1234]

I want to add another article of interest that infers that small bowel overgrowth triggers an immune reaction:

http://www.ncbi.nlm.nih.gov/pubmed/20479895

I sure wish I could get a subscription so I could read these articles in depth. The Journal of Clinical Endocrinology and Metabolism(JCEM) is the only journal that lets lay people read the full article.

[juliegee]

If your problem has the words “Small intestine” in it – then bacteria are not part of the equation because bacteria are not part of the digestive process in the small intestine. If your problem has the words “Bacterial Overgrowth” in it, then you have too much bacteria – adding more bacteria won’t help you. With your intestine’s ability to cleanse and protect itself diminished, good bacteria can overgrow just as much as bad.

My current GI motility specialist has said the same as well as another highly respected one on the west coast.

Bruc-

I've seen you post about this before. Back some of what you're saying up with medical research. I'm interested & curious, BUT everything I've learned opposes what you are saying. For instance, the majority of bacteria is found in the colon, BUT the small intestine also is colonized with bacteria:

http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

"The entire gastrointestinal tract, including the small intestine, normally contains bacteria. The number of bacteria is greatest in the colon (at least 1,000,000,000 bacteria per milliliter (ml) of fluid) and much lower in the small intestine (less than 10,000 bacteria per ml of fluid). Moreover, the types of bacteria within the small intestine are different than the types of bacteria within the colon."

Additionally, my son's docs at Hopkins swear by regular probiotic treatment to maintain small intestine health and prevent SIBO's.

"The two most common treatments for SIBO among patients with irritable bowel syndrome are oral antibiotics and probiotics. Probiotics are live bacteria that, when ingested by an individual, result in a health benefit. The most common probiotic bacteria are lactobacilli (also used in the production of yogurt) and bifidobacteria. Both of these bacteria are found in the intestine of normal individuals. There are numerous explanations for how probiotic bacteria might benefit individuals. However, the beneficial action has not been identified clearly. It may be that the probiotic bacteria inhibit other bacteria in the intestine that may be causing symptoms, or it may be that the probiotic bacteria act on the host's intestinal immune system to suppress inflammation."

I can find alternative sites that espouse your theory, but no medical research to back it up. It's scary that you are stating it as factual. Patients may stop taking prescribed probiotics based upon what you are saying. I am open to changing my understanding of this, but I would appreciate a citation of medical research.

Thanks-

Julie

[juliegee]

Oh geez, i just read this thread more carefully. Sorry! I agree that we can learn from East, West, traditonal & non-traditional therapies. I wasn't trying to add fuel to that fire!

I just find this particular claim (Probiotics will worsen SIBO's) contrary to all that I know. I just want some evidence on this one before I jump on that bandwagon. It effects the way my son is treated.

Thanks-

Julie

[bruc]

Julie,

Factual.

IN my case, where a myopathy is responsible for my SIBO and the dysmotility of the small bowel, my GI motility specialist, University of Iowa, has stated twice to NOT use probiotics in my case.

To quote “A new IBS Solution” by Dr. Mark Pimentel

Page 93: Chapter 7: “Another problem with probiotic supplementation is that the cleansing waves in the small intestines of IBS patients are inadequate. It’s possible that a person with diminished cleansing wave capacity who takes probiotic supplements could find his or her situation worse, as the probiotics accumulate in the small intestine where they don’t belong”

Page 91) “When it comes to the gastrointestinal tract, the concept of “good” bacteria is a misnomer...very few of the 400 strains of bacteria are in fact “bad” or “good” rather they simply represent the various strains of bacteria that are normally found in the colon (or large intestines). It is when these strains of bacteria leave the areas of the gastro-intestinal tract in which they properly belong the problems occur."

Bio for Dr. Pimental

http://www.cedars-sinai.edu/Bios---Physician/P-Z/Mark-Pimentel-MD-FRCPC.aspx

http://docs.google.com/viewer?a=v&q=cache:M1BYlx2IJMYJ:www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/zaidelarticle.pdf+small+bowel+bacterial+overgrowth&hl=en&gl=us&pid=bl&srcid=ADGEESjyiZldFKVtHtfJ2SVcPHLpQsjLbQY8ACPlvr4nPnDhn5hTyk4dAdf84Eb2DGs_m54E6Ejumo0fhDoZaxQYnU3-RC-HXZl2Zy4zOcp6AddSRXGFMWie-IYNCaDCKyaeGXc9_JmT&sig=AHIEtbTfZOoftqNDdGSZ1PEKYlmh9VDHfw

"Normally, only small numbers of bacteria are found

in the small intestine when compared with that found in

the colon."

"The stomach and small intestine contain small numbers of

bacteria in healthy subjects. Jejunal cultures may not iden-

tify any bacteria in as many as 33% of healthy volunteers."

http://docs.google.com/viewer?a=v&q=cache:pyhiZVvenCkJ:www.med.upenn.edu/gastro/documents/Gastroenterologybacterialovergrowth.pdf+small+bowel+bacterial+overgrowth&hl=en&gl=us&pid=bl&srcid=ADGEESiAcTxSxRehGRpN3VdyLO_hWtgcOdO_Xl3-rlOZAijXCpWTN2w2o-DV8GFUQwct8Z6blOwO89RmunQG-g0D2Pen8g3FU8xaUOUPz1tVuC1N55h6X3juwsEoXhr_pgGhWEBmLeOA&sig=AHIEtbTK6VF61V2L2L61lfR4p_29E0VuaA

"Because of

peristalsis and the antimicrobial effects of gastric acid, the

stomach and proximal small intestine contain relatively

small numbers of bacteria in healthy patients; jejunal cul-

tures may not detect any bacteria in as many as 33%.

On crossing into the colon, the concentration and

variety of enteric flora changes dramatically.

Guidelines for the routine clinical use of probiotics are confounded

by insufficient data to guide optimum strain selection,

dose, mode of delivery, and methods for monitoring

efficacy."

IN MY CASE, probiotics are not recommended because of myopathic small bowel dysmotility.

The normal small bowel peristaltic waves are not normal. Thus, when introducing good or bad bacteria it will just sit and populate the small intestine to the point of overpopulation where it shouldnt be in the first place.

The use of probiotics should be a case by case basis dependent upon what is causing the dysmotility.

To suggest a blanket use of probiotics for anyone is scary.

There is no bandwagon to jump on. If there working for you then go with what works.

As always consult with your doctor.

Side note.

Good article on autonomics dysfunction and GI motility disorders

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1374149/pdf/gut00554-0133.pdf

Would it be possible for you to cite a literature reference expanding upon the benefits of probiotics for SIBO?

Not referring to a googled website.

[juliegee]

Bruc,

Thanks for that info; very interesting. It's always eye-opening to see a new perspective and it helps to know where it's coming from. I think it's safe to say that Dr. Pimental's advice re. probiotics is new (unorthodox)- hence my questions. There's lots of medical literature that touts the advantages of probiotics for SIBO's. I think it's a commonly held belief.... which doesn't necessarily make it right. BTW, the article I cited earlier was written/edited by a couple of gastroenterologists who also had ties to Cedar Sinai.

Dr. Pimental agrees that there ARE bacteria in the small bowel, just fewer numbers. The Zaidel & Lin article is the first I've ever seen that state that 33% of biopsies (in healthy patients) show NO bacteria in the small bowel. Interesting, but most likely not representative of the truth. The small bowel is over 20 feet in length- a single biopsy probably isn't representative of the whole. I'm only basing this on the difficulty doctors have when looking for mast cells in the GI tract. Often many biopsies have to be taken to find a fair representation.

I'm guessing that Dr. Pimental is surmising that in your case, due to your myopathy, ingested probiotics could become entrapped in your small bowel and wreak havoc. Out of curiosity, how do you know that your dysmotility is due to myopathy and not a neuropathy? I think it's safe to say that most here have neuropathies secondary to autonomic dysfunction. My son had his confirmed via an antroduodenal manometry at Johns Hopkins. His motility doc there, Dr. Anil Darbari, is one of many who has recommended the probiotics to combat recurrent SIBO's due to his neuropathy. It seems to be working. Since taking Culturelle (2 daily) he's only had one additional SIBO in 6 years. He also takes a GI prokinetic that helps to normalize the contractions throughout his GI tract. I wonder if there is a difference in recommendations based upon whether the dysmotility is due to a neuropathy or a myopathy...

You ask for additional articles touting the benefits of probiotics in SIBO's? Interesting the Quigley & Quera article you cited is one. Read page 85- it's replete with the benefits of probiotic therapy. I think what the authors are questioning is the difficulty of determining WHICH probiotic, how to best deliver it, how to determine it's efficacy, etc- NOT whether or not probiotics can be helpful.

I have to ask, WHAT is Dr. Pimental's solution to IBS? Does it work for you? I'd like to read his book- wonder if it's on Amazon? Thanks for taking the time to share the source of your info.

Julie

[cmruls]

Bruc,

...I think it's a commonly held belief.... which doesn't necessarily make it right.

Out of curiosity, how do you know that your dysmotility is due to myopathy and not a neuropathy? I think it's safe to say that most here have neuropathies secondary to autonomic dysfunction. My son had his confirmed via an antroduodenal manometry at Johns Hopkins.

I so agree with this statement. Just because it is a commonly held belief, doesn't make it right. So many times fallacies are perpetuated to the point that they somehow become/turn into true fact.

I don't understand how an antroduodenal manometry can distinguish between myopathy and neuropathy. I understand how it shows dysmotility but nothing more.

[juliegee]

The antroduodenal manometry at Hopkins was a 24 hour test that resulted in a huge pile of paper with wave-like patterns of contractions on them. They were analyzed by a tech, trained to recognize patterns that were indicative of either myopathic or neuropathic dysmotility. (Apparently, each has a distinctive pattern.) During the test, my son was asked to eat meals and then careful attention was paid to HOW the contractions changed during the digestion process. He had to keep a journal of what he was doing the entire time so the tech knew what to look for each hour. To definitively tie the dysmotility to his autonomic dysfunction, he was given a TTT during the antroduodenal manometry. When he fainted, he also vomited, which indicated retrograde movement of his GI tract- the opposite of normal. At the time, he was so sick he weighed a mere 100lbs at 5' 8". Every time he tried to eat he would become nauseous and vomit. This explained why. By aggressively treating BOTH the autonomic dysfunction AND the small bowel dymotility, he has had tremendous symptom relief.

[cmruls]

...analyzed by a tech, trained to recognize patterns that were indicative of either myopathic or neuropathic dysmotility. (Apparently, each has a distinctive pattern.)

So no definitive biopsy that showed myopathy or neuropathy. Wouldn't that be the definitive test? To what level of certainty can they correlate manometric patterns with myopathy or neuropathy?

How did they treat your son's dysautonomia and his motility problems?

Sorry for the questions, but it helps me understand.

[sue1234]

I read last year about Dr. Mark Pimentel and his work with SIBO. When I had my one and only breath test, roughly 7-8 years ago, my first reading was "off the chart", the lady told me. It was a 3 hour test, and they were to measure every 15 minutes. So, with that "off the chart" first-15 minute measurement, they told me I was through. They just told me I was lactose intolerant. From what I've read since then, it's not normal to have a peak right away! I've read in different places that that outcome means there is likely bacterial overgrowth. How come all the good doctors are anywhere but the South??!

[bruc]

"So no definitive biopsy that showed myopathy or neuropathy. Wouldn't that be the definitive test? To what level of certainty can they correlate manometric patterns with myopathy or neuropathy?"

The antroduodenal manometry is a tool which yields distinctive patterns suggestive of myopathy or neuropathy, like she said. It's not definitive.

The distinctive pattern and experience of the examiner combined yield the degree of its "suggestiveness".

Yes, a full thickness biopsy of the suspect area is the only definitive way to prove? neuropathic or myopathic findings. However, a biopsy does have its limitations:

1. It must be taken from the suspect area. How do you know for sure where this area is?

2. The ability of the examiner is crucial as in any test

3. There are not that many labs with years of experience in reading this type of biopsy

4. It results may be inconclusive

[juliegee]

Mack's had many biopsies of his small bowel- for different reasons. None to rule a neuropathy in or out... to my knowledge. None of his gastroenterologists or motility specialists ever recommended that. A small bowel dysmotility is a functional disorder. We were told that the antroduodenal manometry was the gold standard for DXing a motility issue. According to Hopkins it CLEARLY showed a neuropathic pattern which was further corroborated by the extremely abnormal contractions during a drop in BP on the TTT. Mack's response to treatment is further corroboration of a correct DX.

Bruc, if you feel comfortable, tell us how your myopathy was DXed. You really won the lottery with both a nerve and muscle dysfunction- sorry

CMRuls- Mack is currently on florinef, thermotabs, lexapro, minocycline, and concerta for his NMH. He takes nexium, Ery-Ped, and culturelle for his small bowel dymotility. He is 6' 2" and weighs almost 160lbs. He's gone from bedridden to attending school full-time. He is not cured, but his symptoms are well controlled. He graduates this Saturday .