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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sibo Troubles
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Has anyone successfully treated SIBO (small intestinal bacterial overgrowth) and if so, how?

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Has anyone successfully treated SIBO (small intestinal bacterial overgrowth) and if so, how?

Like IBS, SIBO seems to be a generic label, which doesn't reveal the true cause of symptoms, but which doctors can use to prescribe whatever they want to treat the symptoms. However 'intestinal bacterial overgrowth's can range from deficiency of good bacteria to excess bad bacteria, which are usually kept in check by good bacteria, to excess of really dangerous bacteria which can cause lethal damage. During a 4 year period I had 8 different gastrointestinal infections. 5 of those could have been labeled 'SIBO' because those involved bad bacteria.

However I had a naturopath who actually gave me stool tests which identified the DNA of the bacteria (or parasites or yeast) in my intestines. The lab which analyzed the stool sample also tested the bacteria (or parasite or yeast) for 'sensitivities' to various treatment drugs. So they could recommend a treatment drug (or herbal) which could actually kill the gut bug (or SIBO) which caused my symptoms (usually bloating, nausea, cramps, constipation and/or diarrhea). Specifically I had Klebsiella, Enerbacter Cloaecae, Achromobacter, Clostridium difficile and Helicobacter Pylori (bacteria), Cryptosporidium, Dientamoeba fragilis (parasites) and Candida. My doc diagnosed and treated each of those according to my lab test results and recommendations for treatment. Each successive lab (stool) test was free of the 'bug' which caused my symptoms. However, for a 4 year period, other bugs replaced those bugs.

After my last treatment I started taking really high dose probiotics (50 billion live cells per capsule) twice daily. I haven't had any new gut bugs during the past 2 years. I also found a doc who considered why I was so vulnerable to infections. She tested me for stomach acid production (which was low), blood test differential (white blood cells were low) and thyroid (which was low). We resolved all those problems and my general immunity improved. Best of all, I haven't had any new gut bugs!

So I recommend you find a doc who will test you for the specific cause of your 'SIBO' symptoms and prescribe a treatment which is effective for your specific gut bug. I also hope you will take some really high dose probiotics for a while after that treatment. (I took 100 billion live cells daily for about 6 months after my last treatment for Dientamoeba fragilis.)

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Thanks for sharing. What a nightmare. First celiac, now this?! I may try the SCD diet and see how it goes.

Like IBS, SIBO seems to be a generic label, which doesn't reveal the true cause of symptoms, but which doctors can use to prescribe whatever they want to treat the symptoms. However 'intestinal bacterial overgrowth's can range from deficiency of good bacteria to excess bad bacteria, which are usually kept in check by good bacteria, to excess of really dangerous bacteria which can cause lethal damage. During a 4 year period I had 8 different gastrointestinal infections. 5 of those could have been labeled 'SIBO' because those involved bad bacteria.

However I had a naturopath who actually gave me stool tests which identified the DNA of the bacteria (or parasites or yeast) in my intestines. The lab which analyzed the stool sample also tested the bacteria (or parasite or yeast) for 'sensitivities' to various treatment drugs. So they could recommend a treatment drug (or herbal) which could actually kill the gut bug (or SIBO) which caused my symptoms (usually bloating, nausea, cramps, constipation and/or diarrhea). Specifically I had Klebsiella, Enerbacter Cloaecae, Achromobacter, Clostridium difficile and Helicobacter Pylori (bacteria), Cryptosporidium, Dientamoeba fragilis (parasites) and Candida. My doc diagnosed and treated each of those according to my lab test results and recommendations for treatment. Each successive lab (stool) test was free of the 'bug' which caused my symptoms. However, for a 4 year period, other bugs replaced those bugs.

After my last treatment I started taking really high dose probiotics (50 billion live cells per capsule) twice daily. I haven't had any new gut bugs during the past 2 years. I also found a doc who considered why I was so vulnerable to infections. She tested me for stomach acid production (which was low), blood test differential (white blood cells were low) and thyroid (which was low). We resolved all those problems and my general immunity improved. Best of all, I haven't had any new gut bugs!

So I recommend you find a doc who will test you for the specific cause of your 'SIBO' symptoms and prescribe a treatment which is effective for your specific gut bug. I also hope you will take some really high dose probiotics for a while after that treatment. (I took 100 billion live cells daily for about 6 months after my last treatment for Dientamoeba fragilis.)

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Thanks for sharing. What a nightmare. First celiac, now this?! I may try the SCD diet and see how it goes.

Long undiagnosed celiac makes you vulnerable to other physical problems, especially gastro problems. I have 6 other delayed reaction (IgG and IgA antibody mediated) allergies, besides gluten intolerance. After experiencing those 8 gastro infections, I learned I had Hashimoto's. However, I'm lucky to have escaped all those other autoimmune diseases which are associated with gluten intolerance (rheumatoid arthritis, lupus, type 1 diabetes, MS, etc., etc.).

Were you diagnosed with SIBO? If so, what test(s) did the doc give you to reach that diagnosis? Or did you just suspect you have SIBO? What symptoms led you to that conclusion?

The SCD diet will only help if you react to the foods, which that diet restricts. Rather than trying a more restrictive diet, if you suspect you have SIBO, start taking a high dose (10-50 live cells per capsule) probiotic ASAP. That could help your body overcome whatever bacterial imbalance you have. (Yogurt doesn't contain enough live cells to help anything.) Good luck!

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I suspected that I had SIBO after reading about it in a book, "Real Life with Celiac Disease." (great book btw) I am very careful about staying gluten-free, so I know it was not gluten exposure, plus a lot of other bad symptoms that I was having resolved themselves with the diet. I was still however experiencing, diarrhea, lots of stomach noises, burping and bloating. I went to my gastro Dr. and he put me on a course of Rifaximin. I felt fantastic, like a normal person, for about a month and then it came back. What I didn't realize then and do now, after doing further research on SIBO, is that it is recommended to reduce carbs and sugar during & after treatment, which I did not do. I believe that is why it came back. So, I'm not sure if I should try another course of antibiotics and reduce my carbs and sugar or try a more natural route, which is what I would prefer. I was taking Align for awhile but didn't see that much improvement. (they're only 1 billion live cells per cap)

The whole probiotics thing is very overwhelming. There are so many different strains out there that do different things, so it's hard to know which one to take and for how long, before seeing results. Also, there is some conflicting info out there about probiotics and whether they can help or hurt in treating SIBO.

Thanks for the input. : )

Long undiagnosed celiac makes you vulnerable to other physical problems, especially gastro problems. I have 6 other delayed reaction (IgG and IgA antibody mediated) allergies, besides gluten intolerance. After experiencing those 8 gastro infections, I learned I had Hashimoto's. However, I'm lucky to have escaped all those other autoimmune diseases which are associated with gluten intolerance (rheumatoid arthritis, lupus, type 1 diabetes, MS, etc., etc.).

Were you diagnosed with SIBO? If so, what test(s) did the doc give you to reach that diagnosis? Or did you just suspect you have SIBO? What symptoms led you to that conclusion?

The SCD diet will only help if you react to the foods, which that diet restricts. Rather than trying a more restrictive diet, if you suspect you have SIBO, start taking a high dose (10-50 live cells per capsule) probiotic ASAP. That could help your body overcome whatever bacterial imbalance you have. (Yogurt doesn't contain enough live cells to help anything.) Good luck!

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I suspected that I had SIBO after reading about it in a book, "Real Life with Celiac Disease." (great book btw) I am very careful about staying gluten-free, so I know it was not gluten exposure, plus a lot of other bad symptoms that I was having resolved themselves with the diet. I was still however experiencing, diarrhea, lots of stomach noises, burping and bloating. I went to my gastro Dr. and he put me on a course of Rifaximin. I felt fantastic, like a normal person, for about a month and then it came back. What I didn't realize then and do now, after doing further research on SIBO, is that it is recommended to reduce carbs and sugar during & after treatment, which I did not do. I believe that is why it came back. So, I'm not sure if I should try another course of antibiotics and reduce my carbs and sugar or try a more natural route, which is what I would prefer. I was taking Align for awhile but didn't see that much improvement. (they're only 1 billion live cells per cap)

The whole probiotics thing is very overwhelming. There are so many different strains out there that do different things, so it's hard to know which one to take and for how long, before seeing results. Also, there is some conflicting info out there about probiotics and whether they can help or hurt in treating SIBO.

Thanks for the input. : )

I'm on month 3 of fighting suspected SIBO. My GI team has me taking Rifaximin (Xifaxan), two weeks on, two weeks off (with probiotics), two weeks on. I feel fantastic while I'm on the antibiotic, and for about a week afterward. But toward the end of the two "off" weeks, I start getting gut trouble, joint pain, etc. My dr. said that for some people, a few months of this therapy will cure the SIBO. But for a lot of people, it's an ongoing problem. Some people can get by with doing this a few times a year; some people need to stay on the cycle. Ughhh... I'm praying I'll be a lucky one and kick this junk. My gut needs to heal so I can get some more foods back into my diet!

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I know, this totally sucks! What type of probiotic are you taking? Have you been reducing your carbs & sugar as well?

I'm on month 3 of fighting suspected SIBO. My GI team has me taking Rifaximin (Xifaxan), two weeks on, two weeks off (with probiotics), two weeks on. I feel fantastic while I'm on the antibiotic, and for about a week afterward. But toward the end of the two "off" weeks, I start getting gut trouble, joint pain, etc. My dr. said that for some people, a few months of this therapy will cure the SIBO. But for a lot of people, it's an ongoing problem. Some people can get by with doing this a few times a year; some people need to stay on the cycle. Ughhh... I'm praying I'll be a lucky one and kick this junk. My gut needs to heal so I can get some more foods back into my diet!

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Rifaximin will only work with bacteria which are sensitive to that drug. If your doc did not test (usually stool sample) which gut bug (bacteria, parasite or yeast) actually caused your symptoms, Rifaximin may be the wrong treatment for your infection. Taking the wrong drug can kill off your good bacteria, while allowing the cause of your symptoms (a bad bacteria, parasite or yeast) to flourish. So you can actually feel worse after treatment with Rifaximin. Many docs use that drug as an 'all purpose' antibiotic. Perhaps the drug reps labeled that product as 'all purpose'. However, specific drugs kill specific gut bugs. All purpose drugs can do more harm than good. Docs cannot know which bacteria (or parasite or yeast) causes your symptoms, unless they test you.

Reducing sugar and carbs during and after treatment is recommended for treating CANDIDA (a yeast), but may not work on bacterial or parasitic causes of SIBO. Gut bacteria feed on prebiotics (usually contained in high fiber, but not necessarily high carb vegies). However, taking a good probiotic (live cells, 10-50 billion per capsule) can help protect against any gut imbalance (from bacteria, parasite or yeasts). However, you may need to first kill off the bad bacteria (parasite or yeast), before good bacteria can repopulate your gut. So you may need to take an antibiotic (or antifungal or antiparasitic) drug BEFORE probiotics can really help. That's why eating the low sugar/carb diet for candida doesn't necessarily eliminate candida (and its symptoms). Unless you only have a tiny amount of candida, it's difficult to 'starve' the yeast to death. Antifungals plus a low carb/sugar diet would be more effective.

Brooke: If you've never been tested for and diagnosed with a specific bug (bacteria, parasite or yeast) which causes SIBO, you may actually have a delayed reaction food allergy which causes your symptoms. Look for a naturopath who actually tests you for gut bacteria, yeast, parasites, as well as delayed reaction food allergies (blood test NOT skin test).

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I agree with Burdee that you need to find out what specifically is overgrowing in your small intestine, which makes all the difference in how you treat it. In my case it was both candida and c. difficile. I found the regular alleopathic medical doctors to be not very helpful (this is the kindest thing I can say); I was treated by an alternative medical doctor who was open to supplements or presciption meds - whatever worked. I was treated with a gentian formula for my c.diff. because I got to that point because of taking antibiotics and wanted no more of them. He also treated me with lots of other supplements, none of them prescription. Diagnosis was by stool sample through Genova Laboratories. A good naturopath should be able to handle this for you and I would certainly recommend it.

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What specific probiotics do you recommend? There are so many different strains and different brands. Some are not effective, as they are not live past the date of manufacture. It's difficult to know which one would be beneficial.

You stated that reducing carbs & sugar may not work on a bacterial overgrowth. This is a quote from Elaine Gottschall's book, Breaking the Vicious Cycle: "Complex carbohydrates that are not easily digested feed harmful bacteria in our intestines causing them to overgrow producing by products and inflaming the intestine wall. The diet works by starving out these bacteria and restoring the balance of bacteria in our gut." So, it makes sense to me that restricting these complex carbs and incorporating some good bacteria, could improve things if it is indeed an overgrowth that I have.

Just curious, you said to get allergy tested via blood, not skin. Why no skin testing?

Rifaximin will only work with bacteria which are sensitive to that drug. If your doc did not test (usually stool sample) which gut bug (bacteria, parasite or yeast) actually caused your symptoms, Rifaximin may be the wrong treatment for your infection. Taking the wrong drug can kill off your good bacteria, while allowing the cause of your symptoms (a bad bacteria, parasite or yeast) to flourish. So you can actually feel worse after treatment with Rifaximin. Many docs use that drug as an 'all purpose' antibiotic. Perhaps the drug reps labeled that product as 'all purpose'. However, specific drugs kill specific gut bugs. All purpose drugs can do more harm than good. Docs cannot know which bacteria (or parasite or yeast) causes your symptoms, unless they test you.

Reducing sugar and carbs during and after treatment is recommended for treating CANDIDA (a yeast), but may not work on bacterial or parasitic causes of SIBO. Gut bacteria feed on prebiotics (usually contained in high fiber, but not necessarily high carb vegies). However, taking a good probiotic (live cells, 10-50 billion per capsule) can help protect against any gut imbalance (from bacteria, parasite or yeasts). However, you may need to first kill off the bad bacteria (parasite or yeast), before good bacteria can repopulate your gut. So you may need to take an antibiotic (or antifungal or antiparasitic) drug BEFORE probiotics can really help. That's why eating the low sugar/carb diet for candida doesn't necessarily eliminate candida (and its symptoms). Unless you only have a tiny amount of candida, it's difficult to 'starve' the yeast to death. Antifungals plus a low carb/sugar diet would be more effective.

Brooke: If you've never been tested for and diagnosed with a specific bug (bacteria, parasite or yeast) which causes SIBO, you may actually have a delayed reaction food allergy which causes your symptoms. Look for a naturopath who actually tests you for gut bacteria, yeast, parasites, as well as delayed reaction food allergies (blood test NOT skin test).

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What specific probiotics do you recommend? There are so many different strains and different brands. Some are not effective, as they are not live past the date of manufacture. It's difficult to know which one would be beneficial.

You stated that reducing carbs & sugar may not work on a bacterial overgrowth. This is a quote from Elaine Gottschall's book, Breaking the Vicious Cycle: "Complex carbohydrates that are not easily digested feed harmful bacteria in our intestines causing them to overgrow producing by products and inflaming the intestine wall. The diet works by starving out these bacteria and restoring the balance of bacteria in our gut." So, it makes sense to me that restricting these complex carbs and incorporating some good bacteria, could improve things if it is indeed an overgrowth that I have.

Just curious, you said to get allergy tested via blood, not skin. Why no skin testing?

Simple answer: We don't put food under our skin when we eat. Food goes through our digestive tract and into our blood, where antibodies can react.

More answers: Skin tests only rule out IgE (immediate reaction, anaphylactic) allergies. Most food allergies (including gluten intolerance) are delayed reaction allergies (IgG or IgA antibody mediated). Skin allergies don't address IgG or IgA mediated food allergies.

"Complex carbs" are difficult to digest if someone has allergic reactions to specific complex carb foods, like gluten, barley, rye and even rice for some people. If someone has deficient stomach acid, they may have difficulties digesting entire meals which contain complex carb (as well as proteins and fats). Rather than just rule out whole categories of foods, because some people have difficulty digesting them, I prefer to get tested for food allergies, bacterial, parasitic or candida infections and stomach acid production. However, that's just my preference. Some people prefer to restrict whole categories of foods, because they've read those foods are bad. I have 6 diagnosed food allergies as well as celiac (gluten intolerance). For me restricting 7 major categories of foods is enough. I also must abstain from sorbitol types of sweeteners to prevent leaky gut reactions and anything which causes reflux (alcohol, caffeine, chocolate, peppermint, etc.) because I already have stomach acid deficiency. You can certain restrict as many foods as you like. However, that may not eliminate unpleasant gastro symptoms, unless those food actually cause your symptoms.

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Thanks for the info. What about the probiotics? Which brand/type do you take?

Simple answer: We don't put food under our skin when we eat. Food goes through our digestive tract and into our blood, where antibodies can react.

More answers: Skin tests only rule out IgE (immediate reaction, anaphylactic) allergies. Most food allergies (including gluten intolerance) are delayed reaction allergies (IgG or IgA antibody mediated). Skin allergies don't address IgG or IgA mediated food allergies.

"Complex carbs" are difficult to digest if someone has allergic reactions to specific complex carb foods, like gluten, barley, rye and even rice for some people. If someone has deficient stomach acid, they may have difficulties digesting entire meals which contain complex carb (as well as proteins and fats). Rather than just rule out whole categories of foods, because some people have difficulty digesting them, I prefer to get tested for food allergies, bacterial, parasitic or candida infections and stomach acid production. However, that's just my preference. Some people prefer to restrict whole categories of foods, because they've read those foods are bad. I have 6 diagnosed food allergies as well as celiac (gluten intolerance). For me restricting 7 major categories of foods is enough. I also must abstain from sorbitol types of sweeteners to prevent leaky gut reactions and anything which causes reflux (alcohol, caffeine, chocolate, peppermint, etc.) because I already have stomach acid deficiency. You can certain restrict as many foods as you like. However, that may not eliminate unpleasant gastro symptoms, unless those food actually cause your symptoms.

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Thanks for the info. What about the probiotics? Which brand/type do you take?

I don't know whwther this website will let me type a brand name, but here goes: I use Custom Probiotics, Adult CP-1 forumula with 50 billion live cells per capsule. Taking 2 capsules daily for 6 months after my last (8th) gastro infection kept me from getting new infections. I now just take 1 capsule daily and haven't had any new infections for the past year (after 4 years of one infection after another).

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Glad that it's working for you and you're doing better.

I don't know whwther this website will let me type a brand name, but here goes: I use Custom Probiotics, Adult CP-1 forumula with 50 billion live cells per capsule. Taking 2 capsules daily for 6 months after my last (8th) gastro infection kept me from getting new infections. I now just take 1 capsule daily and haven't had any new infections for the past year (after 4 years of one infection after another).

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I second the recommendation to find a good health care practitioner who will help you figure out exactly which bacteria are causing you problems, and what course of action might be best.

As for dietary treatment options... Have you considered trying GAPS? The whole idea behind it is to restore a good balance of gut flora, and many people use it to help with SIBO. The diet itself is based in the SCD, but there is also a lot about using probiotic foods, and the introduction is slower. I have a GAPS Resources post on the blog linked from my profile where you can find more information.

As for probiotic brands, we use GutPro powder. We rely more heavily on homemade probiotic foods, including yogurt (from raw milk), sauerkraut, fermented veggies, kombucha, water kefir, and dairy kefir.

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This is my first post and I'm confused about why the post I was responding to got "lost" when I clicked the Add Reply button and now I'm on a page that is showing a different poster who I am not interested in replying to? I was trying to send a reply to burdee's post about SIBO and getting tested for specific gut bugs before choosing any treatments in order to avoid making things worse, or just not getting at the problem. I'd like to know what lab her ND used to do all the specific gut bug tests?

I heard there is a recent article in an ND journal, don't know which one yet, where the ND author talks about the "common" occurrence of bugs like Klebsiella and Yersinia in post-Cdiff patients. I have had 2 bouts of Cdiff and both times, anti'b's lead to it and are not helpful in getting rid of it. Most recent was this past summer. Now I have SIBO, aggravated by diagnosed Fructose Malabsorption. I'm on a very restricted diet, trying to hold on while seeking tx for the SIBO. Already tried Rifaxamin/Xifaxin and it made me feel worse, not better, but that was while I had Cdiff. I'm Cdiff free now but the SIBO is hampering recovery of ability to eat FM-safe carbos and I'm just starving and losing weight. I see a new ND next week and am hoping he'll look for specific bugs, not just recommend Xifaxin. Any info on good labs for yeast, parasite and bacterial bugs appreciated, especially from Burdee. thanks much, B Hebert

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This is my first post and I'm confused about why the post I was responding to got "lost" when I clicked the Add Reply button and now I'm on a page that is showing a different poster who I am not interested in replying to? I was trying to send a reply to burdee's post about SIBO and

Hit Reply under the post. But then you have to type something after the post. Then hit the " Add Reply". If you hit the " add reply" without typing anything, all you get is that persons post again. We then delete the duplicates.

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This is my first post and I'm confused about why the post I was responding to got "lost" when I clicked the Add Reply button and now I'm on a page that is showing a different poster who I am not interested in replying to? I was trying to send a reply to burdee's post about SIBO and getting tested for specific gut bugs before choosing any treatments in order to avoid making things worse, or just not getting at the problem. I'd like to know what lab her ND used to do all the specific gut bug tests?

I heard there is a recent article in an ND journal, don't know which one yet, where the ND author talks about the "common" occurrence of bugs like Klebsiella and Yersinia in post-Cdiff patients. I have had 2 bouts of Cdiff and both times, anti'b's lead to it and are not helpful in getting rid of it. Most recent was this past summer. Now I have SIBO, aggravated by diagnosed Fructose Malabsorption. I'm on a very restricted diet, trying to hold on while seeking tx for the SIBO. Already tried Rifaxamin/Xifaxin and it made me feel worse, not better, but that was while I had Cdiff. I'm Cdiff free now but the SIBO is hampering recovery of ability to eat FM-safe carbos and I'm just starving and losing weight. I see a new ND next week and am hoping he'll look for specific bugs, not just recommend Xifaxin. Any info on good labs for yeast, parasite and bacterial bugs appreciated, especially from Burdee. thanks much, B Hebert

If your specific gut bug (bacteria or parasite) was not sensitive to (killed by) Rifaxamin, you just get the side effects of that drug w/o killing your gut bug. As much as drug co's want doctors to believe their antibiotic (esp. Rifaxamin) is 'all-purpose', you really need a stool test which identifies your bug (hopefully by DNA) and recommends which drugs or herbals will kill that bug. I don't know whether I can name the specific test my ND used for my gut bugs, because this website won't allow that. However you can email me or pm me your email address and I can give you that specific lab test name.

You're right about C-diff. Any antibiotic which kills off lots of our good bacteria, can make us vulnerable to C-diff. I recall that I had about 5 recurrences of C-diff, before I learned about tapered/pulse dose treatment with Vancomycin. (I discovered that treatment through online research and described it to my ND, who prescribed more Vanco and ok'd my plan.) After C-diff I got 3 more gut bugs (2 bacteria and one more parasite) before I learned why I was vulnerable to so many infections (respiratory, too) and started taking those super high dose probiotics.

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