bruc

Has anyone scratched themselves? See if a welt forms?

Have the same pain in the back of my calves. Its terrible.

If you dont have a blood pressure problem will midodrine still help with dysautonomia symptoms?

Thx!

What are the clinical symptoms associated with MACD?

Mutat Res. 2007 Sep 1;622(1-2):58-69. Epub 2007 Apr 6. Importance of microbial colonization of the gut in early life to the development of immunity. Kelly D, King T, Aminov R. Source Rowett Research Institute, Aberdeen, Scotland. Abstract The mammalian gastrointestinal tract harbors a complex microbiota consisting of between 500 and 1000 distinct microbial species. Comparative studies based on the germ-free gut have provided clear evidence that the gut microbiota is instrumental in promoting the development of both the gut and systemic immune systems. Early microbial exposure of the gut is thought to dramatically reduce the incidence of inflammatory, autoimmune and atopic diseases further fuelling the scientific viewpoint, that microbial colonization plays an important role in regulating and fine-tuning the immune system throughout life. Recent molecular diversity studies have provided additional evidence that the human gut microbiota is compositionally altered in individuals suffering from inflammatory bowel disorders, suggesting that specific bacterial species are important to maintaining immunological balance and health. New and exciting insights into how gut bacteria modulate the mammalian immune system are emerging. However, much remains to be elucidated about how commensal bacteria influence the function of cells of both the innate and adaptive immune systems in health and disease. PMID: 17612575 [PubMed - indexed for MEDLINE] Publication Types, MeSH Terms

Ann Neurol. 2011 Feb;69(2):240-7. doi: 10.1002/ana.22344. Gut, bugs, and brain: role of commensal bacteria in the control of central nervous system disease. Ochoa-Repáraz J, Mielcarz DW, Begum-Haque S, Kasper LH. Source Department of Neurology, Dartmouth Medical School, Lebanon, NH, USA. Abstract The mammalian gastrointestinal track harbors a highly heterogeneous population of microbial organisms that are essential for the complete development of the immune system. The gut microbes or "microbiota," coupled with host genetics, determine the development of both local microbial populations and the immune system to create a complex balance recently termed the "microbiome." Alterations of the gut microbiome may lead to dysregulation of immune responses both in the gut and in distal effector immune sites such as the central nervous system (CNS). Recent findings in experimental autoimmune encephalomyelitis, an animal model of human multiple sclerosis, suggest that altering certain bacterial populations present in the gut can lead to a proinflammatory condition that may result in the development of autoimmune diseases, in particular human multiple sclerosis. In contrast, other commensal bacteria and their antigenic products, when presented in the correct context, can protect against inflammation within the CNS. Copyright © 2011 American Neurological Association. PMID: 21387369 [PubMed - in process]

I cant imagine doing the TTT with an ADM at the same time. Must been awful. Is Hopkins only place to offer this combo? Havent come across any other.

My neurologist is the one who has stated that a biopsy would be only way for definitive neuropathy or myopathy but there are limitations. From all my readings its beyond me to understand how an autonomic neuropathy could cause a suggestive myopathy; a startling find. My neurologist did point me to an article where a Myotonic Dystrophy patient with GI dysmotilites was thought to result from a myopathy. However, upon full thickness biopsy the pathology results yielded neuropathic finds no sign of myopathy.

"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." His advice isnt new or unorthodox. In my case, think about the function of the small bowel. It makes perfect sense. If the peristaltic waves are not functioning right the bacteria has no place to go but accumulate in the small bowel. What is new is the mass promotion of probiotics marketing by many. Im not saying probiotics are wrong for everyone just please evaluate your condition are they appropriate? "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." Did you overlook or miss the conclusion(s) on pgs85 of the article I posted? "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." The article references several experimental studies. "Probiotics appear, therefore, to possess a number of properties that could be of benefit in bacterial over-growth and intestinal failure; their introduction into the therapeutic armamentarium, however, must await the results of well-conducted clinical trials as are performed for poorly absorbed antibiotics" In other words, nothing is definitive. Medicine is an inexact science. "BTW, the article I cited earlier was written/edited by a couple of gastroenterologists who also had ties to Cedar Sinai." Could you post literature references instead of websites? "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." What's your basis for that conclusion? Yes, they are there but if the small bowel and its waves working optimally, bacteria shouldnt be there. "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?" My current GI motility specialist is at the University of Iowa. Antroduodenal manometry revealed patterns suggestive of myopathy. A second manometry indicated myopathy in the esophagus. Myopathy secondary to autonomic dysfunction, although not very common. "He also takes a GI prokinetic that helps to normalize the contractions throughout his GI tract." I would suggest the prokinetic is just as important to no SIBO as the probiotics. If you can somehow normalize the waves in the small bowel and clear it out then chances for it to repeat lessen. Im not sure what the difference is in the waves when comparing the dysmotility to a myopathy or neuropathy. "NOT whether or not probiotics can be helpful." Since the studies are lacking, and those they cite are experimental, the question on there helpfullness is remains unresolved. Being proactive, getting the word out, educating yourself and anyone else willing to learn is the only way to solve our conditions.

"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

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.

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.

It depends on where the bacteria is growing. Good or bad in the small bowel means trouble. Good bacteria can overgrow in the small bowel just like bad and create major problems. If you have SIBO it's very important to determine the cause. In my case a myopathy is the cause. Adding probiotics will just make the problem worse because the good will just sit and grow just like the bad.

Depending on whats causing the permeability, probiotics could make this worse instead of better.

Dr.s studying potential connection between gut bacteria and many diseases another example is parkinsons

Have terrible SIBO right now being treated with antibiotics. Also have leaky gut syndrome which means the toxins are leaking out of the intestines and spreading throughout my system. Definitely a connection.

Lovebug, I too have chronic constant disabling severe abdominal pain.

Will mestinon help with myopathies of the colon, small bowel, and esophagus?

I too have GI dysautonomia. Cant take any pain medications because they all slow the tract down and its bad enough the way it is; they will only make it worse; in my case. The pain is unbearable at times. Not much I can do about ti but just try and get through each day. Been this way for 20 plus years.

Anyone have the normal test result values in autonomic function testing for sudomotor, cardiovagal, vasomotor? Im trying to compare my results to normal values.

Start here: On the DINET homepage there is a physician list or http://www.americanautonomicsociety.org/ Physician referral Listing on left side.

Im already on Nulytely which is Miralax plus electrolytes. No other pro-kinetic works other than antibiotics. From my readings; bacteria, good or bad, are not part of the digestive process in the small bowel. The small bowel operates in an acidic environment. As bacteria accumulates, the alkaline nature of the bacteria disrupts this environment. As toxins are produced the bowels ability to cleanse and protect itself is reduced allowing for further bacterial overgrowth. Eradication of this overgrowth is key to regaining this function. In dysmotility the cleansing waves are inadequate. Due to this inadequacy, good bacteria can accumulate and overgrow just like the bad. Balancing the good with the bad does tend to reduce the amount of toxins being produced so there will be improvement but the bacteria still produce gas, bloating. Some relief but not solving the problem. Small intestine isnt designed to work this way. You need too eradicate all bacteria. My GI specialist has advised me not to take probiotics, wont help. But my philosophy is; if it working for you then go with it.

Very important to not feed the SIBO bacteria when on antibiotics; dont take sugar or any other food that the bacteria thrive on.