# Flagyl & Xifaxan & Elemental Diet, Oh my!



## Keepongoing

Hi,

I have been dealing with small intestine bacterial overgrowth (SIBO) since July 2011. Of course, it took until around July 2012 to get a positive test.

Let's go to the beginning first. After a two-week vacation in July 2007 in Europe where I drank copious amounts of red wine, ate tons of pastas and splurged with crème brulee every day, I came home and within two weeks had the following symptoms:


intense tingling and numbness in arms/hands & feet/legs


Muscle swelling/tightness in forearms, shins



Weight loss



Hyperglycemia



Arthritis/joint pain



Fatigue



Anemia



Low Vitamin D



Stomach pain



Bloating



Diarrhea/constipation



Irregular periods began



Infertility


Several months and many doctors later (checking for lupus, ms, etc. & finding nothing), I end up at the GI doctor's office. Blood/stool tests reveal nothing but an endoscopy and colonoscopy reveal gastritis, GERD, terminal ileitis.

The doctor decides it is a "mysterious" bacteria and gives me Flagyl to kill it. (Now mind you, many of my symptoms had been reduced by an anti-inflammation diet (no gluten, no sugar, no eggs, no dairy, little processed foods) since I had read that inflammation is the root of all diseases. But the stomach pains, weight loss, bloating and diarrhea/constipation remained.

So, I take the Flagyl (with VSL #3 for a month) and felt amazing. After a few months, I slowly crept back into a more American diet. Felt great for three years.

Then, I took a two-week vacation to Boston where I drank copious amounts of red wine, ate tons of pastas and splurged with chocolate desserts every day.

I came home, and within weeks felt the strange arthritis coming back. Immediately I went on the diet and went to the doctor for Flagyl. Unfortunately for me, I had a reaction and couldn't finish it. But, staying within my diet, I became normal again within two months. Started eating a normal diet, and drinking wine, about a month later after recovery and bam, it was back.

I tried natural things, still not knowing what it was. It was only many months later, when my regular GI was on vacation, that another doctor said to try the breath test. It was positive.

From August - October 2012, I took three rounds of Xifaxan. Each time I got a bit better, but I am still far from good. At the end of my rope, I got a prescription for another round of Xifaxan with Neomycin. Just got home and read what Neomycin can do. In rare cases, it can cause deafness. So, I am not happy with those possible side effects and will now attempt the Elemental diet, even though I am down to 100 pounds and am 5'7. (I started this off at 135.)

First, I just wanted for anyone to see who is surfing the Internet and have only tried Xifaxan with it not working, please try Flagyl if you can. It worked for me, and I have seen studies where it has more efficacy than Xifaxan.

Second, I just wanted to remind everyone that even when they get rid of it, it is only a secondary cause. I have been negative for Celiac and Crohn's, but am still pursuing the cause.

Third, please read up on using prokinetics after using antibiotics to get rid of it. I will be doing that this time. It helps the migrating motor complex to work efficiently, which helps to clean the small intestine.

Fourth, eat a low-carb diet to keep it from returning (something I didn't do last time because I thought I had picked up some random bug in Europe).

I hope this helps anyone who is sad out there dealing with this, and if anyone has advice for me, I will gladly listen.

Hope to all of you! Never give up. If you are going through hell, keep on going. - Churchill


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## Moises

I am glad you found something to help you.


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## Brownish72

Have you started your elemental diet?


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## Keepongoing

Yes, I am on day 4 of the elemental diet. It is rough. The Vivonex tastes disgusting, but I am getting used to it. I am not so much tempted by food since I have had to be so restrictive on what I eat over the past year. As my husband and I tell each other, I vowed to do whatever it takes.

I am feeling my energy level slow down.

I am now working with my naturopath since she found an article on SIBO that clearly states effective protocol methods. It was posted on Jan. 9, 2013, on www.ndnr.com.

It pulls from Dr. Pimentel's work and naturopathic experts. It is a well-cited article.

My naturopath also gives me multivitamin infusions that help my energy and absorption since my stomach is not at full capacity.

I do have an appt. in March with a gut motility expert at Mayo in Arizona. I would like to find the cause to address it.

As far as my stomach goes, it feels fine. In my case, the Xifaxan killed off my hydrogen producing bacteria but not the methane producing. It has not been bubbly and hard, and my sides/intestines have not hurt as they can with food.

I will post updates to share.


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## AnnAtomy

Finally! For the first time in forty years, I am hearing reasonable thoughts. Those labeled with IBS in the past were always told to 'reduce stress.' If we're going to reduce anything, it needs to be carbs. Then once someone takes this seriously as the PHYSIOLOGICAL condition that it is, it can be treated.


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## Keepongoing

Day 11 on Vivonex. It actually has gotten easier to drink the Vivonex. What I could barely get down at first goes down quite smoothly now. I haven't been that tempted to cheat at all. I just notice that when I pass a restaurant, I inhale all the smells to get some culinary pleasure. Or I have my husband give me a kiss when he has eaten something yummy just to give me a taste. Oh, the simple pleasures.

My stomach feels better, and I can tell it is healing somewhat from the leaky gut. I had not put it in my first post, but it was determined that I had leaky gut from the SIBO. It made total sense to me since all of a sudden I became allergic to so many foods. Prior to the Xifaxan, I was tested to be allergic to 15 foods. Right after the first dose, I was tested again and they were gone. But I could still tell that I was intolerant of certain foods, and sadly became intolerant of the ones I could eat because I ate them so often.

As I read in one article, you have to kill all the bacteria to get to the path of healing. I can attest to that because no matter how strict I was with my diet (Specific Carb and otherwise) my stomach would still hurt on occasion.

So, the only time it has hurt on the Vivonex so far is when I have gone for hours in between eating. I think it is the acid hitting the sore spots that I have from the toxins that the bacteria created.

I am going for, at minimum, 14 days of this. If I feel okay at 14, I might go longer. It is a really busy time at work so it is perfect to do it now since I don't have that much time to think about food.


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## Keepongoing

Oh, and I wanted to share this link about alcohol and SIBO. Since I think that my SIBO came from my gluttony of pasta, sugar or alcohol (or because of all three) on my vacations, I have stopped drinking alcohol since last March and will never drink again. (sounds drastic, but I am really sick of being sick. Also, I lived it up in my youth, so I am good.)

In fact, when I mostly got rid of it by last March after taking 3/4ths of my Flagyl and maintaining a good diet, it seemed like it really came back after a night of three glasses of red wine. (Usually I will have a glass per week). On both of my vacations, I had wine at lunch and dinner every day practically for two weeks. I haven't seen a lot of conversation about alcohol on this site yet, but it something to consider. The following link is about a study that looks at the link between SIBO and alcohol.

http://www.sciencedaily.com/releases/2011/10/111031114949.htm


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## Moises

Keepongoing,

I enjoyed the link. Thanks for posting it. I almost never drink any alcohol at all. I discovered long, long ago that even a small amount of drinking makes my gut worse.


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## Keepongoing

So true, Moises. When I become healed, I have to remind myself what alcohol can do. All I have been able to drink for the last year is water, so even mild tea would be a treat at some point.

Day 14: Technically this could be my last day on Vivonex if I wanted it to be. I am a bit paranoid since on Day 8 I did have a pain/gas bubble that morning. Nothing like on average, but still.

The day before I didn't stir the Vivonex properly at lunch, so in my mind perhaps I gave the bacteria something to eat since it wasn't smooth liquid. So, I will continue and put Day 21 as goal. We will see how it goes.

I will also write down the symptoms, etc. that have improved since I have begun this after I have completed this, and also write more fully about the Vivonex experience.

Early in the morning here, but I just wanted to say that if I can make it to Day 14, anyone can. I am incredibly motivated to get rid of SIBO, but do not consider myself a naturally disciplined person. But I have my eyes on the prize.

(Also, I have not lost weight, but gained two pounds. I was eating less calories before than now.)

Since I joined this group, I have had a chance to go through the other SIBO posts and did find a couple of comments about the prokinetic drugs that cause me to pause. Two people had been told by their doctors not to use one of the drugs due to the possibility of getting C-diff.

Hmm, I have had C-diff due to a reckless nurse who declared that I needed to take Levaquin for a UTI I had in 2005. It is basically aiming a cannon at a mosquito. Let me tell you, C-diff is 20x worse than a UTI. Horrific in fact.

I have often wondered if that might have caused my long term bacteria imbalance in the first place.

Anyway, I might not take the prokinetics right after the elemental diet. Back in 2008 when I got rid of SIBO with Flagyl, I had just supplemented with probiotics and was good to go for three years before my sugar and carb gluttony in 2011.

But then I do read the posts on different reactions to probiotics as well. My probiotics in 2008 seemed to work, but then when I took probiotics this time round prior to Vivonex it seemed that it make the D worse. There seems to be some controversy on that subject.

Has anyone seen any research/articles on this or the C-diff?


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## Keepongoing

I did it. Friday was my last day on Vivonex. I was on it for a total of 21 days. I felt like I had to do the whole time otherwise I would always wonder if it worked for me or not due to the length of time on it.

So, I took 6 packets a day: 2 at a time, one for breakfast, one for lunch, one for dinner. It totaled 1,800 calories per day. I gained two pounds on it, which I really needed. I felt full and fine throughout the day, and my stomach did not have problems during that time. I did experience diarrhea alternating with small pellets. They were always yellow. I didn't give much thought to it since I knew it would be unusual, whatever it was, considering I was drinking packets.

It was hard at first, and I missed chewing, but overall it came to be very easy.

Today is my second day off, and I must say, being off is harder than being on. Now I am back to worrying about what to eat, what bothers me, how am I every gain any weight and will this have worked.

I consulted my naturopath about my fears on the C-diff, and she said that it is so small of an amount that she wasn't worried about it. So, while I was supposed to start taking the prokinetics on Saturday, I will have to wait until Monday to get my order in. I couldn't get it filled at CVS or Walgreens since the antibiotics needed to be compounded, so I went to a place CVS recommended to get it filled. Onsite, she did say that lactose was the filler, and I requested malodextrin based on some posts I saw here. But, if that doesn't work, I will go with lactose filler.

Yesterday, the first day back of real food, was hard on my stomach and it hurt, but it didn't SIBO hurt in patches of pain, but was a regular upset stomach. I did eat a lot of protein, multiple vegetables and applesauce. I woke up and there was a small bubble by the ileocecal valve. And my small back hurts and there was a bit of arthritis in my hands again.

So, that is a little worrisome and upsetting.

I had diarrhea this morning, but that could be my stomach adjusting. Before the 21-day fast on Vivonex, I was mostly having constipation. I had had diarrhea for almost a year before taking Xifaxan, then it got better each time I took the drug. But I was still stuck with constipation. And heartburn every time I had the smallest bit of carbs. And there continues to be my stick-like figure.

Next week is Mayo. I have been putting it off since it isn't covered by my insurance, and will surely be an arm and a leg in cost. But since the regular GIs pretty much gave up quickly on helping me, I will try it since Mayo has the experts. In Phoenix, Arizona Digestive Health is a corporation that contains 57 GI doctors in the Valley. So, I couldn't get a second opinion, according to them, I had to transfer doctors. Most of the good doctors are tied up in this corporation.

Foodwise, I want to do the specific carb diet for a month or two and follow up with the Cedars-Sinai diet for a lifetime after that. However, I find I am already starved on the SCD since I adjusted it to take out dairy and beans, two obvious types of food hard on the stomach. In some ways, I find the SCD confusing on what is okay to eat. Prior to the Vivonex, I tried the lentils (okay on the SCD) and was in so much pain and my stomach was hard and bloated.

To me, the Cedars-Sinai diet makes more sense. Avoiding beans, peas, lentils, dairy and soy products seems like common sense, along with the eating of carbs in small amounts per meal to allow for early absorption in the small intestine.

Even so, I am scared to death to eat a grain carb. Reading all the paleo websites and the people who have been healing by not eating grains (www.againstallgrain.com) makes me think that makes sense too.

It is confusing to know what to do when it comes to food.

Sigh. Having a hard morning because I am back worrying how to eat, something most people can do without thought. I am jealous. But I have to be happy that at least we have this group to see how others do it, and at least we have options to try. Many people do not even have that.


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## Brownish72

I wish I would have stumbled across this blog a little earlier, I would have been there to encourage you on the diet, as well as post fast.

I have an article I would like to send you, would you mind sending me an email, my email is : [email protected]

The article talks about treating SIBO, from getting rid of it (the first step), to prevention (the REAL big step). The article was published earlier this month, and I wish I would have had it back in November when I fasted on Vivonex. I am now fasting again, for a 3rd time on Vivonex; namely because prevention is a very tricky part.

Also, the confusing part about SCD that took me about a year to truly figure out is that even though something is SCD legal DOES NOT MEAN you will tolerate it. In fact, no diet can tell you that. Each case is unique, and you may tolerate nuts really well, where others really need to stay away from them. One of the most important things I gathered from the article I would like to send you is that once SIBO is gone, studies have shown that it takes up to 30 days for the intestine to completely heal from the dammages of SIBO. This doctor believes its more of a 90 days process, and a combination of supplements can help you achieve success. In fact, in her opinion (and my personal experience) , the biggest reason for relapse is not following a careful diet + supplements immediately following the eradication of SIBO.

I talk about Dr. Allison Siebecker a lot, and recommend her site www.siboinfo.com as a great source for SIBO info. I say this because she has been studying the infection for 10+ years, dedicating her life to figuring out the mechanisms behind SIBO and how to go about treating it. She is the one who wrote the article I mentioned above.

How are you feeling post fast?? My first experience; I had 'great' results, but ate to many carbs thinking that it would be okay. I lasted roughly 40-60 days before relapse. My second fast I was much more limiting in my foods, and made it to 90 days, with about 80+ days symptom free, I still ate complex carbs on occasion. This time; I am going to follow the strict guidelines in the article, and hope for the best. I do not want to get my hopes up; but, Dr Siebecker is a genuine person, and I've talked to her a few times. She reassured me that she has had patients put SIBO away for several years, ( I do not want to say 'for good' because several years would be awesome; but maybe these patients will relapse someday...) However, her results are promising, and based off of a lot of experience, study, and dedication.


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## Keepongoing

Hi Andy,

Just saw this article. I have been out on a carb splurge, to be honest. I will email you. I would love to see that article, thank you.

Yes, I noticed that with the SCD. It says lentils are okay, but they killed me. Also, some of its food choices clashes with Dr. Pimental's recommendations. He says no beans or dairy, but the SCD says they are fine. That is what can be so confusing.

The fast definitely made me feel better, both mentally and physically. It was afterwards that was so hard. I was just so hungry, and had not planned what to do post fast in an efficient manner. I thought I would do SCD, then follow Dr. Pimental's recommendation. But all discipline went out the window after the fast. And since the carbs didn't really bother me at first, it seemed fine. But the more carbs came with more problems.

I did find when I took oregano oil for a week that that helped with everything. But, as many of you know, a person shouldn't take that long term.

I did go to Mayo for my first appt. After his assessment, the doctor's guess at this time is that I have post infectious problem based on my C-diff infection years ago. I am doing blood work, did a gastric emptying test, will do a hydrogen breath test next week, followed by a fructose test, then lactose test, possibly a MREnterology test, then appt. with a dietician ending with a follow up with the doctor. Oh, my pocketbook hurts since it is Mayo and they are out of network.

30 days to heal from SIBO sounds about right. That is exactly how long it took for me back in 2008 when I took the Flagyl with the VSL#3. I started to feel fantastic and gain weight after a month.

With the Vivonex, I think I expected it to work like the Flagyl. That it would kill it dead. But I agree adherence to a very low carb diet is needed following the fast. And, I haven't taken any probiotic supplements based on the controversy. Wasn't sure what to do.

So, in your statement, do you mean a person should take probiotics or are you referring to other supplements?

Thanks for the info!


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## Brownish72

I'm referring to a list of other supplements, although probiotics could be included if you tolerate them. The trick is finding the right one , if not; just making your own via fermented foods.

I'll wait for your email so I can send you the article


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## Keepongoing

Been off for awhile due to the fact that April is my busiest month at work, and then I was so exhausted from not being well that it took all my energy to just work.

Got my results from Mayo. The doctor said I had a bit of a quick gastric emptying and a mild fructose malabsorption. Being fructose intolerant was the last thing I thought I would be. In fact, I almost didn't take the test because I didn't want to pay for it and didn't think I would have it.

Now it seems really clear. I have been on the low FODMAP diet for only a week now, but see much improvement. My upper GI doesn't bubble now, I am in less pain, I have more energy (I could barely make it through some days), my head is more clear (a lot of brain fog before), I am not falling asleep on the couch. The week before I found out that I had these things, I was barely hanging on by a thread. I chugged on with my daily applesauce, avocados, asparagus, etc. knowing that food was killing me, but not knowing what. I had never tried the elimination diet. Had no patience for it. Now I wish I had. Looking back it makes sense when I was in so much pain eating sweet potatoes three days in a row or when I went on a fruit binge to gain weight.

At Mayo, what also was interesting was that the hydrogen breath test was negative, and the numbers were practically nonexistent. Very different from last summer when the numbers were much higher. Either the 3 rounds of Xifaxan or Vivonex cleared it up. Or both.

So, here is my theory based on my history and comparisons to others' stories. I get C-Diff, which causes a problem (fructose malabsorption), which is not too bad or too noticeable until I go on a two-week vacation eating/drinking copious amounts of fructose foods. I get SIBO. Creates other problems. I clear the SIBO, but continue to keep my GI in distress with the consumption of fructose.

So, here I am. Thinking that the last time around when I was better but not whole I took Flagyl and probiotics. Flagyl is both anti-bacterial and anti-parasitic. So, just to be safe, on top of the low FODMAP diet, I am doing a parasite cleanse (1/4 c. papaya seeds on empty stomach in morning for 7 days). Then I will do an herbal anti-bacterial regiment followed by probiotics or some type of food to increase my good bacteria without adding fructose to my GI.

I will update how that goes, but I have to say that it has only been one week and getting better. I would have never pinned it down to fructose malabsorption. Seemed far reaching. But just wanted to put that out there for all who are still searching.


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## Dontstopbelieving

Thanks for sharing your story. Keep us updated.


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## kenbkb

keepitgoing,

I read with stunned silence your initial post where you describe a two week binge of wine, pasta, bread and desserts while on vacation. My symptoms too were initially developed on a two week binge of wine, pasta, bread and desserts on the Amalfi Coast in October 2010. I have never been the same since. Wine has never fully agreed with me but my wife and I each drank a bottle of it for two weeks in Italy. As you know, who can argue the taste and they serve it like water in Italy, plus it is half the price over there!!

Nonetheless, I have never recovered.

The only treatment that has worked for me has been a nominal treatment of Augmentin. I say nominal as it caused me diarrhea after 10 days and I was never able to get back on full dosage.

I do the low carb diet and am quite familiar with Dr Pimentel and his protocol. I can point to Brownish/Andy as a near authority on all things SIBO and he is both a gentleman and a scholar and has been of great benefit to me in battling my SIBO-like symptoms.

Currently, per an article a Dr Siebecker wrote with a Dr Lewis, I am fighting my Constipation-predominant SIBO with a cocktail of Xifaxin and Flagyl. I am only on day 4 presently. But I have used Xifaxin twice over the past two years, by itself, and there was no benefit. Siebecker and Lewis postulate you must add the Flagyl (or Neomycin) if you are a constipation dominated sufferer. My doctor also has told me the side effects of Neomycin are daunting.

Again, I was SHOCKED to learn that your symptoms were precipitated in Italy from your wine-pasta binge. I about fell off my chair. Unbelievable. In many ways, I feel some sense of vindication/proof now that this indeed was the "tipping point" for me. Best regards, Ken


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## PoopiePalace

To Keepitgoing, I have also taken Xifaxan and Flagyl for SIBO and my doc. is Dr. Pimentel up at Cedar's so I know firsthand the effects of that treatment. I actually have been on 3 treatments of the antibotics. First was Xifaxan with neomyicn, second was Xifaxan and flagyl and last time was Xifaxan and neo again. I have IBS-C but also have had major bowel reconstruction surgery back in August. The antibotics have eradicated the methane and the last breath test was normal. I do stick very closely to Dr. Pimentel's diet. No dairy, beans, soy, legumes, little to no wheat, corn syrup or high fructose corn syrup, no artifical sweetners, etc. Can't remember the last time I had pasta and I am 100% Italian. Also if I allow myself bread it is sourdough only, also dr. Pimentel's suggestion. I do take a probiotic specifically for people with constipation and miralax every night. My biggest change to my diet is lots of fresh fruit in the morning with a bowl of rice krispies and coffee for breakfast. I have to say the fruit is my friend. I also do healthy fats, avocado, olive oil, etc. I too am tiny, but not as tiny as you. I little to no red meat and very little carbs. But I do have to say red wine is my friend too. It actually helps me to have a BM. Have you read Dr. Pimentel's book? It really explains it well. He does not believe in high fiber, hence the rice krispies for breakfast, they a were actually his recommendation. I have found high fiber constipates me terribly so. It is interesting how each person's body is so different and what works for one person could be the devil for someone else.


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## Keepongoing

Hi Ken & PP,

Yes, there definitely seems to be a tipping point - for anything, right? I do follow Pimentel's protocol of what not to eat, and when I do eat carbs (potatoes, brown rice, white rice), I space them out and also don't over-indulge at one meal. Following the FODMAP has helped decrease the random, strange bloating.

(I was that person eating tons of fiber wondering why it was killing me. Ha!)

For an update, I had been going to a new naturopath recommended by a friend at the same time I was going for testing at Mayo. I had some tests come back that might indicate Lyme Disease. Oh joy. I am waiting on my Western Blot test & a co-infection test to see.

I had been tested for this back in 2007, but it was from my general practitioner and wasn't the most sensitive test. So, this might be the cause of all my random symptoms, including my fructose malabsorption creating SIBO.

Right now, I am just on this seemingly strange protocol -- Himalayan sea salt and Vit. C. That's it. I take 10 sea salt pills, and about 2-3 doses of high levels of the C. This is the stranger part, I have had increased symptoms as the naturopath predicted, but in between, I have more energy than I have had in ages. Early days, and, as I said, haven't gotten the test yet, but will know in a couple of weeks.


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## Keepongoing

Just thought I would add some posts about Lyme and SIBO since Lyme may be the cause for SIBO and other GI issues for some people.

http://www.healingwell.com/community/default.aspx?f=30&m=2689926

http://thehumansideoflyme.net/viewarticle.php?aid=62

http://www.dailystrength.org/c/Diverticulitis/forum/12383049-xifaxan-drug-therapy

http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=245


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## robertirwing

Returned from a trip to Kenya, Africa and brought back an unexpected guest which caused my diarrhea for two weeks. Tried the usual antibiotic regimen along with Questran, neither of which worked with total success. Tried Xifaxan 200mg in combination with Probiotics and the cure was virtually overnight. I will definitely remember this and refer to anyone I know with similar problem.


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## Bet Sobon

Hi Keep

If you ask me, I'd say that your carb binges were the issue. You do know that pasta has gluten in it, right? You also could have picked up a parasite when travelling.

I was in the hospital last year, they thought I had cdiff and I was on flagyl while I was there. I do now believe it was a SIBO flare. I did do SCD when I got out (I am not sure that lentils are legal on SCD, they are a legume, which are not legal).

I'm glad you found out about FODMAPS and are avoiding them. I just found that out a few months ago and now realize that I can't tolerate foods like broccoli, onions, garlic, etc. Also gluten/grains are all FODMAPS, so you should avoid all grains (I found that white rice occasionally is ok). I would also cut out the brown rice in total (too much insoluable fiber) and limit the white potatoes. Sweet potatoes are ok.


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## kenbkb

keepitgoing,

I had wondered why you had not replied as I had not received any notice of your follow up. I somehow must have not had the REPLY NOTIFICATION feature on. Anyway, because our storyline of where I malady had started were so similar I was more than interested in the direction you had taken to help heal yourself. Is the Naturopath you are seeing now the one you had sited earlier? And did the Vivonex not fully do the trick for you?

I was also curious, do you generally feel a touch better in the morning and feel a bit worse generally-speaking as the day moves on and as you are eating more?


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## Keepongoing

Hi,

Sorry I haven't been on for awhile, but that is what happens when you start feeling better, right?

So, yeah, Bet Sobon, I knew about the gluten deal, and have avoided for years, but it did not heal me at all. I was actually rigidly convinced I must be celiac or gluten sensitive, and that was my main problem. Esp. since it is so tied to SIBO.

Eating FODMAP foods helps since I am fructose intolerant, and will get sick if I eat too much fructose. Once again though, that has been one symptom out of many: tingling in extremities, early menopause, low adrenal function, extremely low blood pressure, dizziness, vertigo, brain fog, arthritis, etc.

kenbkb, I feel that Vivonex got rid of the SIBO for me. (aided by the three rounds of Xifaxan prior to it, which helped somewhat). Of course, that is helped by being very strict with diet, no sugar, no alcohol, etc.

The new naturopath believes it is an infectious disease, and more than not, very likely Lyme Disease (which can cause SIBO). If you check out my early symptoms, you will see that I got them after a vacation. Well, I was in Wisconsin first, then Europe, and within two weeks had all those major symptoms as mentioned. GI issues was just one of many.

It has been two months now, and I have gained 10 pounds just by taking the Salt/Vitamin C protocol. My stomach feels much better. My energy is better. I don't feel suicidal. Which is a plus.  I am now in the process of trying to figure out what to do next for the Lyme. It turns out that Lyme treatment is very controversial (great, she said sarcastically). More so for someone who has had it for a while.

But I feel better than I have in two years. Turns out when I first took that Flagyl in 2008 for the "mysterious bacteria" that it put the Lyme in remission, but Lyme does come back out in times of stress.

Generally, I don't do so hot if I eat too much, esp. if it is bad foods. If I eat good foods and eat too much, I am actually not too affected, but if I cheat and eat bad chips or have something with fructose or inflammatory, my stomach will hurt. That said, I know that the last time when I put Lyme in remission without knowing what I was doing, I had absolutely no symptoms for three years. NOTHING. No GERD, no GI issues, no tingling, dropping of weight, arthritis, etc. It ALL went away with the antibiotics. So, that may be my next move to get rid of this lingering stomach issue.

Hope that helps someone out there.


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## Keepongoing

oh, and kenbk

did you ever look into that you possibly picked up a parasite or infectious disease? I was just wondering since you mentioned you felt like that after traveling. So it might be similar to mine in that I most likely got Lyme in Wisconsin or Europe while traveling (and all the drinking, etc. lowered my immune system to be open to becoming sick).

Just a thought. a post in this thread mentions it as well.


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## kenbkb

keepitgoing,

Thanks for your input and glad to hear you are progressing so well. In addition to the wine and pasta trip to Italy, yes, I did other traveling soon after that, in WI and NV as well. But my deterioration started in Italy, although when I recollect I was not doing too badly a month or two later which is when I took the other two trips. But at the end of that third trip I was a mess.

.......I believe I have been tested for parasites but I can check again.

.......Is the Lyme test a whole separate matter from a parasite test?

.......I am seeing a chiropractor who works with a NAPROPATH so I will mention this Himalayan sea salt and the high dose of Vitamin C.

I still have not committed to Vivonex, my weight loss is so extreme and it scares me to think that I would lose more. Right now, as suggested by the Pimentel protocol, I am doing the low dose Erythromycin as a prokinetic. After one week, the results are not favorable.

Thanks for taking the time to share. I know the origin of our malady was so similar it is great to hear from you.


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## kenbkb

keepitgoing, wanted to share one more tidbit on my symptoms to see if you had the same.

The gas I can generate is astounding. It is of tne non smelly variety, merely seems to me to be my inability to break down my food, or the presence of bacteria, which MULTIPLE ROUNDS OF ALL TYPES OF ANTIBIOTICS have been unable to eradicate. They help, but cannot stop the gas. Anyway, I can have this passing of gas for many hours, generally from mid afternoon all the way through to the following morning.

Sometimes, incredibly, 12-14 hours after my last meal even. Wondering if you can empathize with that?


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## Keepongoing

The Vivonex scared me too since I was 100 pounds and 5 feet and 7 inches tall. I did not want to lose one more ounce. I felt like a concentration camp survivor.

But I did it, and actually gained two pounds while on it. I was getting regular calories that I could actually absorb. And my stomach didn't hurt, and I had more energy. I really think that did the trick for me, since the SIBO test then came up negative and I no longer had diarrhea.

Any time anything gives me gas, it is like a flashing neon red sign to me that I cannot digest whatever I just ate.

For me, it could be something with too much fructose. (due to the Lyme, I believe). So I stay on the FODMAP diet.

With SIBO, it was horrible. I don't have the amount of gas I had when I had SIBO. With the Vivonex, the gas went away. It was wonderful. I know it is expensive, but for me it was worth it.

Now, one late night on the Internet trying to find out what the hell was wrong (even after the SIBO was gone, because it didn't get rid all my problems), I saw this website where the guy said stop chasing symptoms, get diagnoses. Well, I had been trying to do that for years, but after reading that, I got very serious about it. I had been working with a naturopath who just charged me a lot of money, but never tested me for anything. I was going to go to every doctor until someone would tell me what they thought was going on instead of telling me I have these symptoms but they don't know why.

While these board outlets are great, I think one of the most important thing is to stop chasing symptoms, go to different doctors if you need to, read stories on here for more direction, go back to different doctors and don't give up.

I am still in that process.

With the Lyme tests, they are known to be very inaccurate, and mostly false negative. For anyone out there, don't do the Elisa test. Waste of time and not accurate. The Western Blot by IGeneX is the best one to do. Still, once a person has Lyme for a while that can even come out negative. So, doctors also test your CD-57 to see where your immune system is at. Lyme suppresses the immune system. They can also do other tests to see if you have other co-infections. Lastly, they also look at the big picture, your clinical symptoms, and how you are responding to treatment.

Lyme often comes with parasites and other bacteria. The tick can carry multiple viruses.

You can do simple parasite cleansing remedies just to be sure if you think you might have a parasite, as I did, that are in this thread. This is before I knew about the Lyme. I was just trying to be methodical about it since I knew Flagyl had helped me before. Flagyl kills both parasites and bacteria. So, without knowing what I had, I started the parasite removal regiment.

So, yes, a parasite test is different from a Lyme test.

The salt/vitamin c, if you have Lyme, will produce worse effects for a bit, as it did for me. So, I knew it was working. I was herxing. But I just said all that about testing since I don't want to push the Lyme idea on you, but just the whole idea it could be something you picked up.

I know a woman whose son visited from Poland, camped out with her in Arizona, went back and started to have some very serious symptoms. They tested and tested and couldn't figure it out. I mentioned to my friend, who was close to the woman, that perhaps it was something he picked up here (I had just saw a case where a man caught a bacteria as a gardener). She mentioned it to the woman, and it turned out he had Valley Fever (very well-known and common in Arizona, but not known outside of this region very much).

He almost died, but he did get treatment for it once they discovered what it was. I feel the same thing happened to me in that I got the Lyme, came back to Arizona where doctors wouldn't think or look for Lyme since we really don't have it out here.

You never know what you might have picked up.


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## kenbkb

keepitgoing,

Thanks for the well thought out post. Since you and I had similar origins to our problem (Italy, wine, bread, pasta), you have sold me on trying the Vivonex. I am going to order some and hopefully start within 2-3 weeks.

I also am seeing a Napropath this week. What it is they do I have little idea but one works with my Chiropractor as I am trying chiropractic also. Also see a Digestive Physical Therapist, rather a PT who focuses on elimination issues. Man, this hyperdefecation, fecal urge or whatever you call it is a total nightmare.

Unbelievable that you gained weight on the Vivonex. I guess it makes sense though, I am withering away like a reed in the wind.

Good point on the gas too. When you say it is an effect of not digesting something I guess another way of saying what is happening is that the bacteria is feasting on all your nutrients. This gas is maddening also, I can have it for 10-14 hours straight. And I know it is from the small intestine as there is no smell, just gas. Horrible experiences with this.

I will post back after I start the Vivonex.


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## rmiller1985

Hi Keepongoing,

I just started following this thread. I hope you're continuing to improve.

I'd like to echo (or paraphrase, at least) one thing that was mentioned about the Specific Carbohydrate Diet: it needs to be customized for each person. It's not just about what's legal and what's not, it's about understanding what makes different foods illegal, and then eating only the legal foods that work for you. In addition, legal foods are sort of informally classified as beginner, intermediate, and advanced; I'm not positive, but I'm pretty sure that lentils would be in the advanced category. Since you've learned that you have some degree of fructose malabsorption, I'm sure that quite a few fruits that are SCD-legal would be poor choices for you.

I've been on the SCD for about two and a half months now, and it has made a remarkable difference for me. I'm blogging about my experience to help me clarify my thoughts, and to help anyone else who might be considering the diet. It has not been easy, but it has been a learning experience that has definitely paid off -- so far.

I think you are 100% right when you say, "Any time anything gives me gas, it is like a flashing neon red sign to me that I cannot digest whatever I just ate." I think one of the main goals of the SCD is to minimize this.

I'll be following along now, keep us posted!

Cheers,

Rich

Lifetime wonky gut

2 months SCD

http://omnivoreoncemore.blogspot.com


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## Keepongoing

kenbkb,

Good luck with the Vivonex! Hope it works for you. 

& rmiller,

you are so right, it really is about customizing what works for you. That is probably why it can be so frustrating at first, but ultimately helpful when you figure it out. Thanks for your post!


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## Jenkay

Just joined the group but have strangely the same story as two others in this post, just got back from Europe and over indulging for two weeks on August 10th, 2013 and was struck with the most debilitating symptoms in late August early September and been living a nightmare ever since! 24 hr bloating, unable to eat, weight loss and nausea, bad brain fog, blurred vision. Every GI test under the sun, mostly ok, Gi thinks it could possible be scleroderma related and motility issue because I have Lupus and Mixed Connective Tissue Disease but tests are not really verifying that so another test and going to see a super GI Specialist at Dartmouth for special motility testing. But it just seems strange to me that is all came up after our trip (I have had other periods of bloating in the past two years but nothing that impacted my life or eating). I just started xifaxan two days ago, had 50% relief after first two doses but today after 4th dose not any further improvement, think I got my hopes up that there would be more quick improvement on day two but no such luck, doing low fodmap and probiotics twice a day. Started exercising daily for first time in years and is helping my overall strength. Having regular bm for the most part every morning but bloating continues (. Sugar carbs are worst for tummy. Have thought of going to nautropath but so much going on right now, I know they'll say lyme, it's all so confusing. Also, see acupuncturist at the moment. Just thought I'd share my story that sounds in some ways so familiar. I'm not familiar with Flagyl, I'm taking 550 of xifaxan twice a day for 30 days. God I pray it helps.

Jen


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## StephanieClairmontRD

I was diagnosed in 2007 with IBS after a 4 month trip to Australia. Everyone I meet has a story about something triggering their digestive symptoms. It's very interesting. I now help people everyday reduce symptoms and love to share what I have learned to help others.

There are so many people and pills out there that say they can help with IBS - if you need more info about diet, eating for healthy digestion or Up-To-Date low FODMAP handouts and information, please visit my website at www.StephanieClairmont.com. I post on my blog weekly - sharing expert advice, product reviews when eating gluten free and low FODMAP, recipes, and resources.

Please let me know if you have any questions, any time!

Sincerely,

Stephanie Clairmont, RD


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## Soho601

Hi,

I'm a new member here and this is one of the best threads I've found about the advanced treatment of SIBO.

I was recently diagnosed with SIBO after a hydrogen breath test. For the last 12 months, I've had the following symptoms:

* Constant lower abdominal bloating (I look 2 months pregnant when I wake up in the morning, and 6 months pregnant by bed-time!)

* High-volume gas in late afternoon/ evening

* Frequent urination - every 45 minutes

* Rock-hard tight muscles in lower abdomen (this symptom vanishes when I lie down or bend over, I suspect it is an automatic reaction by my body trying to hold in my bloated intestines)

* Swollen colon from gas (I can feel the whole shape of my GI tract through my skin, it is hard like a hosepipe filled with water)

I have tried Xifaxan @ 1650mg/ day with ZERO improvement. If anything, it made my bloating about 20% worse!

I've also tried the following home remedies with no results:

- Enteric coated peppermint

- Digestive enzymes

- Peppermint oil drops

- GSE drops

- Manuka Honey Active 12+

- Oregano Oil

- Garlic Oil capsules

- Collodial Silver

- Fresh Ginger & Turmerica Tea

The only thing that seems to help is the following:

- Coconut oil - 2tbsp a day - reduces bloating by 20%.

- Fennel Tea - 2 cups daily - reduces bloating and relaxes intestines. I like Heather's Tummy Tea.

- Cut out ALL bread, pasta, chewing gum, sorbital, soda, fruit and sugar - these all cause crazy extreme gas

- Crushed raw organic garlic (taken as a shot in pineapple juice to hide the taste) - take before bed to get the bowels moving in a big way! LOL.

- Abdominal massage - I lie down twice daily and massage my stomach clockwise following the shape of the GI tract. a 20-minute massage completely relaxes the tension in my abdomen and allows me to pass lots of gas about 20 minutes later.

Now the Xifaxan has failed, the doctor has given me Neomycin. I read the warning label and promptly threw it out upon reading it can cause permanent hearing loss & kidney disorders. I am a musician, and even a small chance of damaging my hearing is unacceptable to me. I'd rather live with the bloating.

I agree that SIBO is a symptom rather than the ailment in itself, and am interested in hearing from anyone who succeeded in uncovering the roots of their illness.

Thanks for reading this long post, I hope this helps someone. I'd love to hear back from anyone who has succeeded in eliminating SIBO for a decent amount of time. I have had these uncomfortable symptoms 24/7 for a year now and even a day of relief sounds like heaven to me.

I will be trying Flagyl next and will post my results.


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## hectorgarcia

Hello Soho601

the ones that don't work for you also didn't work for me.

I'm also trying "Crushed raw organic garlic" and it seems to work. I do it after every time I eat.

I will try the abdominal massage and coconut oil.

I'm also taking fresh ginger just before my garlic brew.

Take care


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## chandleraz

Hi keepongoing

I am so happy that I saw your thread. I live in Chandler Az. I went to several GI doctor in az and did numerous of test for the last 9 months. They all told me that I have gastritis and acid reflux. Took ppi for 9 months with no improvement. Last week I changed doctor again. The PA in the office told me that she sure that I have sibo and schedule for me to do the breath test next week. Searching around the web now and saw that I have all sibo symtom. I also have uncontrollable weight lost (5'2", 79 lbs). I am scared and don't know what to do now. Could someone please advise me what to do to gain back some weight. Thanks!


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## chandleraz

Hi keepongoing

I am so happy that I saw your thread. I live in Chandler Az. I went to several GI doctor in az and did numerous of test for the last 9 months. They all told me that I have gastritis and acid reflux. Took ppi for 9 months with no improvement. Last week I changed doctor again. The PA in the office told me that she sure that I have sibo and schedule for me to do the breath test next week. Searching around the web now and saw that I have all sibo symtom. I also have uncontrollable weight lost (5'2", 79 lbs). I am scared and don't know what to do now. Could someone please advise me what to do to gain back some weight. Thanks!


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## kenbkb

Re-read the whole thread again. Still struggling. Have yet to find a solution. Has anyone tried a long term, low dose steroid by chance?


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