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My Story - Finally Going to Try Rifaximin. How do I make the most of it?

rifaximin SIBO IBS-C

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#1 CanadianGuy

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Posted 11 August 2014 - 01:18 PM

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Where I'm Coming From:
 
Hi everyone, I'm from southern Ontario, Canada and I've been dealing with IBS-C for over 12 years. I have visited this forum many times over the years, but this is my first time signing up and posting. The IBS problems started for me when I was in high school and has altered the course of my life and is in part responsible for where I am today. I've had somewhat good months/years and really bad ones. Right now I'm having a bad year and I'm hoping that I will get some relief by trying rifaximin.
 
I'm posting this looking for some advice and to see if anyone can relate, but if nobody replies at least this will have helped me sort out my thoughts. 
 
The Protocol I'm Going to Try:
 
- 10-day course of Rifaximin (Zaxine brand in Canada) 550mg 2x a day
AND
- 10-day course of Ratio-Nystatin anti-fungal.
 
I believe that this is based on a version of the protocol used for IBS by Dr. Mark Hyman, an American medical doctor who practices functional medicine and recognizes SIBO as a contributor to IBS. He has been on the Dr. Oz show and has written several books, one of which was recommended to me a few years ago by the same MD who wrote me this rifaximin prescription here in Ontario.
 
When I talked with my doctor about this protocol last week, he wrote me a book recommendation note for "A New IBS Solution" by Dr. Mark Pimentel, which I can't believe I haven't read until now. I'm thankful I have a doctor who knows about Pimentel when here in Ontario no other doctor (and I've seen more than a few over the years) seems to know anything about rifaximin and IBS. I also asked for and I'm awaiting results from this doctor ALCAT food allergy testing and GI Effects Comprehensive Stool Analysis. Unfortunately I don't think anyone around here offers hydrogen-methane breath testing. The hospital does some kind of urea breath test for H. Pylori but I'm sure that's another thing entirely. 
 
Rifaximin is finally available in Canada!
 
For the longest time Rifaximin wasn't available in Canada so I often thought about looking into heading across the border. I first read some amazing case examples given by Dr. Hyman in his book "The UltraMind Solution" where he described patients who suffered for many years with bowel or neuro/psychological symptoms who experienced dramatic improvements after taking rifaximin as a part of his protocol. I found out that the drug is now available in Canada as Zaxine (Salix pharmaceuticals). It's extremely expensive but my symptoms flared up last October and it's been a painful rollercoaster ride ever since and I'm willing to try just about anything. It's either that or wait until late October for yet another upper GI scope, and November follow-up appointments with multiple doctors. I just can't sit on my hands for that long with how bad things have gotten recently.  My life really does seem to be on hold until I get through this. For 12 years my life has been limited by this and now it's making it impossible to go anywhere or do anything. 
 
 
Trying to get the most out of Rifaximin protocol:
 
Does anyone have any suggestions on what I can do to increase the effectiveness of the 10-day course of Rifaximin?
I understand that the course of Rifaximin is only 2x per day which seems to be much less than the often discussed Cedar-Siani protocol of 3x per day (plus Neomycin for IBS-C and/or methane positive lactulose breath test and which isn't available in Canada)
 
Here are some things I've read about that different sources suggest may help...
 
To Help with the Antibiotic
- Peppermint Oil
- Oil of Oregano
- Grapefruit Seed Extract
- Candibactin-BR and Candibactin-AR from Metagenics (I'd rather avoid these because some ingredients apparently lower seizure threshhold, and I had a few seizures several years ago)
- Diet - GAPS, SCD, Cedar-siani diet, or low FODMAP diet - Would this make a difference during the antibiotic course or just after?
 
Probiotics or No-Probiotics
- Probiotics - Dr Hyman recommends VSL3 after Rifaximin. Dr Pimentel does not recommend probiotics and the logic behind this makes sense. (Probiotics have been causing my symptoms to flare up recently, though I used to be able to tolerate them.) After reading his book I'm left wondering if there are probiotic suppositories which would seem to make more sense if the goal is to try to avoid an abundance of bacteria, good or not, in the small intestine.
- S. Boulardii - Beneficial pro-biotic yeast apparently helpful for preventing C.Diff when using antibiotics. I'm not sure if this can colonize the small intestine or sure if it's a good idea or not so good idea to take with Rifaximin. 
 
To Help Heal the Gut
- L-Glutamine
- Zinc-Carnosine
- DGL Licorice Root
- Boswellia
- Curcumin
- EPA Omega 3 Fatty Acid (fish oil)
 
To Promote what Dr Mark Pimentel  (Cedar-Siani) calls the "cleansing waves" of the Small Bowel
Tegaserod - No longer available in USA. Not available in Canada
Erythromycin - Not sure I want to ask about this or if it's even available in Canada.
MotilPro from Pure Encapsulations. I found this myself but not sure I want Acetyl-l-carnitine in it for the same reason I'm leery about Candibactin. 
Ginger Extract
Alpha-GPC (precursor to acetylcholine) - I've read that this can help improve the rest and digest parasympathetic activity, not sure if this is a good or bad idea.
- 5-HTP 50mg 3x per day between meals - I'm basing this on what Pure Encapsulations says about their rationale for the ingredients in MotilPro.
 
Other:
- A Good Multi-Enzyme: Enzymedica brand, perhaps Digest Spectrum as an example...
 
 
 
--The long story you may or may not be interested in--
 
Like many of you, I feel like I have been through nearly every medical test possible, only to receive negative or inconclusive results and experiences with many doctors who seem to assume you're anxiously imagining all of your symptoms.
 
In high school I started to get bloated every day. Painful crampy bloating that I'd have to unbuckle my belt and wear loose fitting pants because I would feel like I was growing a big round belly. I'd get sharp pains across the belt-line area of the lower stomach. I also started getting what I thought was heartburn. It took me several years of antacids that didnt help to realize that it was actually painful muscle spasms that last 1-5 hours.
 
For the 12+ years my abdomen has always felt crampy or knotted up. If I wear too tight of clothes like jeans or have any pressure on my stomach it's likely that I'll end up either flaring up with bloating or get a painful spasm attack usually felt at around the area of the bottom of the ribs on the left where I imagine the stomach, spleen, and last corner where the colon descends is. Many times I wondered if it was coming from my bowels or from my stomach. The pain I get when i have an attack is unimaginable. Tears to my eyes painful. Fight or flight fear of death rapid heart rate, rocking back and forth rubbing my back and front until my muscles and ribs ache 11/10 painful. When I get an attack, if I drink cold water I can feel it run past the part where the pain comes from. This always made me think that the spasm was either my stomach or lower esophageal sphincter, maybe even hiatal hernia (even though this has been ruled out by multiple different tests. Upper GI barium swallow, xray etc). It wasnt until my third scope in October 2013 that they found eosinophils in the esophagus biopsy that they told me that it was spasms in my esophagus. But for years I hadnt had the pain in my chest, but lower and to the left, which felt like my stomach or possibly the corner where the colon descends (splenic flexure syndrome type of spasm).
 
I read up on EoE (eosinophilic esophagitis) and read that they are white blood cells in the esophagus that shouldn't normally be there, and they're part of an immune response that can be caused by food allergies and by parasitic infections. The gastroenterologist didn't seem to have much interest in testing me for parasites (did the standard Ontario stool Ova&Parasite test since and it was negative). I asked him if it can also be caused by SIBO. He said no. I've never been checked for SIBO as far as I know the scope exams never included a biopsy for bacteria concentration heading into the small intestine. 

He put me on Tecta saying that the stomach acid might be causing the spasms and EoE, but if the PPI didnt work I'd have to take an oral steroid sprayed into the mouth and swallowed. Well in December 2013 I got an infection in my lower lip. Huge swollen and painful and of unknown origin. My doctor put me on antibiotics for it. It went away. I didnt realize it until some time later but I actually felt a little better afterwards. The same GI Doc took me off of Tecta in January and I wasnt doing as bad as now. My family doc sent me to an allergist in April to check for food allergy causes of the EoE and that doc put me back on Tecta because he wanted to have a follow up scope done to see if the PPI reduced the eosinophils in the esophagus. Well within a week of beginning that Tecta in April things flared up to the worst they've ever been. GI cramping so bad that I ended up getting a ton of anxiety and several panic attacks over the following weeks. Worse yet the GI didnt want to do a follow up scope because he said it was not justifiable so I took the Tecta for nothing. 
 
Ended up in the ER again almost 3 weeks ago with an attack of pain and really bad nausea and was referred to yet another gastroenterologist who wants to do another scope in the end of October, and my family doc referred me to an internist who is apparently good with difficult to diagnose conditions. This doctor wants to send me for a small intestine MRI, which is the first time my small intestine has been imaged or looked at, other than the barium swallow follow-through which he said was out of date and could've missed something.
 
Meanwhile I've revisited a local MD who is known for being open to alternative therapies. This is the doc who I knew I could get the GI Effects and ALCAT testing from. He was the one who found out I had borderline gluten antibodies and told me about the fish oil, wobenzym and that protocol I did in 2012 that helped me so much that year and got rid of the bloating and brain fog. He also found out I had fatty liver at the time, was prediabetic and a bunch of other stuff which he helped me completely reverse. Unfortunately they didnt cure me. My theory is that the protocol he had me on was really helping manage inflammation and eliminating gluten which was hard for me to digest with the GI issues I've been dealing with. I also had a ton of brain fog that year and following his protocol wiped that out nearly completely. Even though I've currently got my family doctor, this "difficult case" internal medicine doc, and a new gastroenterologist, I value the perspective of the one MD who doesn't follow the narrow minded guidelines that other doctors in Ontario cling to which havent helped me a single bit in the last 10 years. 
 
I just wish that the hydrogen/methane breath test was available here but I'm too impatient to wait. At my wits end I just want to take the rifaximin protocol and make the best of it and hope for the best.
 
I forgot to mention that I began having auras in 2007, about 5 years after developing IBS-C. I had brain fog constantly which I thought was due to my bowels and a deja vu feeling type aura nearly every day and finally unfortunately had 2 grand-mal seizures in 2007. One in Sept and one in Nov 2007. During that year I had strong brain fog and anxiety that I've always believed developed out of the bowel symptoms I had for so long. All the epilepsy tests EEG MRI etc were all negative so doctors could only shrug when I asked what the cause of the seizures was. I was on Lamictal until 2012 when I was weaned off and was taking an anti-inflammatory supplement protocol. I haven't had an aura since. I still think my seizures were directly related to my gut, and my doctor theorized (lucky to have a doctor willing/capable of theorizing) that systemic inflammation may have contributed to conditions which increased the possibility of having a seizure.  
 
My Ongoing Symptoms:
- IBS-C - If I dont take 600mg of mag citrate, a laxative, or miralax daily then after 2-3 days I get hard rock-like stool which irritate the rectum, have mucus, sometimes need to be digitally removed extremely painfully in which case I've experienced multiple anal fissures. Laxatives and magnesium just feel like they stir up my stomach and cause looser bowels. There's rarely a happy middle ground for me. It's either loose with any laxative, or impaction worthy rocks without. Fiber without a laxative or magnesium makes it worse for me. Drink nothing but plenty of water. None of the standard constipation remedies have worked for me.
- Feeling like my abdomen is in crampy knots. The only time I ever felt relief was when trying buscopan, but it raised my heart rate to 155 bpm and causes anxiety and once it wears off I feel worse off than before. Cant wear tight clothing. Bloating gives really sharp strong cramps. I doubt I have a buscopan deficiency anyway...
- Excruciatingly Painful Upper-Left-GI spasm attacks  - I used to think this was heartburn over the first several years. I was on antacids, PPIs and all for nothing because they didn't help. The attack comes on suddenly usually hours after eating, most often in the afternoon or evening. Never woken me up from sleep but kept me up late many nights. Once the attack is over I feel worn out. This is a colicky pain that is so strong I think it would convince 95%+ of people who experience it to end up in the ER, where I have ended up with this multiple times, usually waiting so long that by the time I get checked it's gone, and this lasts 1-3 hours or more. After these attacks I usually feel on edge for days and sometimes weeks. I have to avoid sugar, simple carbs, and starchy foods among other things to avoid a flare up. 
- Weight Loss - At 5'9 I dropped from 160 LBS to 138 LBS since March because the symptoms flare up when I eat the wrong thing. 
- Nausea - Sometimes it can be severe. Prior to IBS I wasn't that motion sensitive. After developing IBS and over the years I've become more and more sensitive to motion. Airplanes, back seat of the car or just when my stomach is cramping. 
- Bloating and Sugar craving - Used to have this every day until I cut out gluten and did an anti-inflammatory omega 3, enzyme, etc protocol in 2012. If I drink a sugar drink or pop or have any fruit I will 100% for sure get bloated. I mostly avoid sugar these days.  
 
The Many Tests I've Been Through
- Multiple abdominal x-rays NEGATIVE
- Barium swallow with small bowel follow through NEGATIVE
- Barium enema NEGATIVE
- Colonoscopy NEGATIVE (Showed melanosis coli from using CleanseMore with Rhubarb from Renew Life for too many months before the test) and mild chronic inflammation.
- 3 Upper GI Endoscopy exams. First 2 negative. Third showed 60+ Eosinophils per slide or high powered field or whatever and mild chronic gastric and duodenal inflammation that apparently wasn't considered significant. Biopsy/pathology showed "Rare H-Pylori like organisms" which the gastroenterologist said is insignificant and another doctor said is confusing and could be something.
- H Pylori antibody blood test NEGATIVE
- Plenty of blood work by gastroenterologists / or ER visits have been NEGATIVE
- Food allergy scratch test NEGATIVE
- Food allergy 2-day patch test NEGATIVE except for garlic... which I've since eliminated completely to no avail.
- Gluten/gliadin Antibody Blood test - BORDERLINE - I eliminated gluten in 2012 because of this and for a while I felt better. I went from bloating every day to bloating 1-2 times a month. Bloating always made my GI cramping worse and GI spasm attacks more frequent so this was a huge relief, but obviously not the solution since I'm still having pain without gluten.
- Standard Ontario hospital stool Culture NEGATIVE (2 weeks ago)
- Stool Ova and Parasite NEGATIVE (2 weeks ago)
- Stool C.Diff NEGATIVE (2 weeks ago)
- Urine Culture NEGATIVE (2 weeks ago)
- Metametrix/Genova Diagnostics GI Effects Comprehensive Stool - At my wits-end I asked and paid for this and I'm awaiting results. 
- ALCAT food allergy test  - Again, at my wits end I asked for and did this too and I'm awaiting results. 
 
I've never had a motility study of either the esophagus for spasming or the other end for constipation. 
I've never had a hydrogen breath test and of the three gastroenterologists I've seen in the last 12 months none use or offer it. Even the doctor who offered the GI Effects and ALCAT doesn't seem to offer the hydrogen/methane breath test... Canada seems behind the times on this.  
 
The Drugs I've Been On:
- Losec PPI prescription for 3-4 years while in high school. Ended up with Osteopenia...
- Tecta PPI began in Oct 2013-Jan 2014 and April-June 2014. Made symptoms flare up even worse!
- Buscopan Smooth-Muscle Relaxant - Tried but it causes rapid heart rate and anxiety and symptoms worse off after the pill wears off.
- Every antacid imaginable to no avail - I used to think that the pain I got was heartburn but antacids, baking soda, Milk of Magnesia, tums, etc never touch it when it comes on. Pepto bismol seemed to be able to put a dent in the pain of the upper left GI attacks I've been getting for over 10 years but doctors never seem to think that's significant that pepto has an effect when no other antacid does. Recently pepto isnt working that well for me as it used to.
- Tylenol - I really wish I didnt have to take this but when I get a stomach spasm attack I take the full dose of extra strength.
- Gas-X - I occasionally take this as well since when Im getting the attack, if I feel bloated at the same time it's 100x worse.
- Miralax - took this daily between summer 2011 and summer 2014. Just recently trying to switch to magnesium citrate fearing that the miralax is making things worse lately.
 
Reading through so many posts where people tried rifaximin to no avail, I wanted to make sure that I do everything I can to ensure that it works. This is all based on the theory that I have SIBO. It's a shot in the dark but I'm hoping for the best.
 
I am happy that the Canadian Health Care system has ruled out heart problems, obvious and serious diseases, and whatever else, but just because the standard tests come back negative doesn't mean you can send the patient out the door with no answers, no guidelines, and a far off in time  test or non-urgent follow-up. I understand the importance of triage in a medical setting, but after more than a decade I feel like the way that I've been dealt with has wasted not only my time and money but the time and money of this health care system as well. Sometimes I look at people who obviously neglect their health and I ask myself why they can get away with it and live that way for most of their life while I've tried to be healthy and still I can't seem to escape this. 
 
 I just want to get on with my life and leave whatever this is behind.  

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#2 Nojokeibs

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Posted 11 August 2014 - 02:18 PM

I think some of the best doctors are the ones who suggest you read a book.  I have a neurologist who recommended "Grain Brain" to me, among other books.  This is one way for a doctor to give non-standard advice without opening themselves up to prosecution or harm to reputation.  I smell a change in the air, and it's fresh air.  

 

The war of ideas is very heated right now.  One symptom of that is the embrace of veganism by the "mainstream" in an attempt to exonerate grains  as the villains they probably are.  Or more correctly... the villains we have bred them to be.  I think Mark Hyman is one of the good eggs, and his books didn't gain instant popularity only because his process is not a simple bullet point "do this" process.  It's more of a long term path of self discovery.  He has become popular lately partly because President Bill Clinton has adopted some of his principles for his health.  I don't consider Dr. Oz to be a credential, more of a commercial.  But I hardly think the ex-President has any need for a stipend from Mark Hyman for a plug of his ideas and books, so I trust that piece of news as unlikely to be venal. 

 

The truth sometimes hides in plain sight and is often offered by people with no credentials at all.  The only way to be sure is to be sure of yourself. If this is your path, then embrace it.  If there were things that killed the germs you're after, you wouldn't need the antibiotics/fungicides.  The only supportive things you should do are those you feel are right for you.  I can suggest what I think would be right for me, but it's your body.  

 

My suggestion would be to follow the plan exactly, and even to lower your intake of FODMAPS and even food in general while you're on the antibiotics.  Take any anti-nausea you need to take  as well, and do not stray from the course.  It's the food that's feeding them, don't feed them so much while you're taking drugs to kill them.  

 

The second suggestion is based on my research on pubmed.  When you take antibiotics, it's the viruses that help the bacterias to survive the assault.  They preserve the genetics, and pass them on to other bacterias.  I'm not sure if I have the references anymore, but if you care to look this up you can search pubmed for antibiotic resistance and viruses.  One thing that limits viruses is l-lysine supplements, given at 1g/day or higher doses.  Stick to a meat based diet and take some lysine is my suggestion.  

 

After the destruction, I would rebuild with sauerkraut and kefir.  Or maybe skyr instead of kefir (skyr has no bifidus, which I believe can overgow if you're in a sensitive state, I first read about that in the SCD diet).  

 

Good luck and I hope you get well!


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Ever been to the Museum of Medical Oddities in Philadelphia, PA?  My picture is from there.  That's the guy with the megacolon.  I suppose he lived before surgery could help him.  His actual colon is there too, thick as my leg.  

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#3 Nicole Wahab

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Posted 11 August 2014 - 02:54 PM

I'M ALSO GETTING THE SAME DRUG TODAY I WAS JUST WATCHING HIS VIDEO AND I PLAN ON DOING EXACTLY WHAT YOU ARE DOING, PLEASE KEEP US UPDATED. 


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#4 Nojokeibs

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Posted 11 August 2014 - 03:12 PM

I'm not sure if this is the same reference I was reading before... but this is why I was suggesting l-lysine...  because one suspicion is that the viruses in the gut (phage = virus) are the reason that bacterias develop multi-drug resistance:

http://www.ncbi.nlm....pubmed/23748443

 

I admit though that I have no proof that lysine does anything to stop this process or even slow it down.  There aren't many tools in this field.  Cinnamon?  Cloves?  Seems even less likely to help.  At least lysine works on one known virus.  


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Ever been to the Museum of Medical Oddities in Philadelphia, PA?  My picture is from there.  That's the guy with the megacolon.  I suppose he lived before surgery could help him.  His actual colon is there too, thick as my leg.  

----

My History in Brief


#5 CanadianGuy

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Posted 11 August 2014 - 03:14 PM

Nojokeibs, thank you very much for the reply. Thanks especially for the L-Lysine suggestion. I had read a lot about Linus Pauling's Vitamin C and Lysine combination that's now marketed heavily in Canada under the Gifford Jones Medi-C Plus brand. I'll have to look into L-Lysine alone. Thank you.

 

You're right, the doctors who make those book recommendations probably are some of the best doctors around. Firstly because they acknowledge that you are capable of learning about your condition even though you don't have their medical background. Most doctors don't seem to like when you've walked in and read a study online that they haven't heard about. After having a life altering condition for over a decade of course it has made me proactive and forced me to be open to learning as much as I can. I have to keep up to date with current theories and research that standard medical practice and dinosaur doctors will probably be retired long before the new knowledge becomes adopted into the mainstream.  

 

I am very grateful to have found this forward-thinking doctor in the seemingly least likely of places as SW Ontario. If it wasn't for this doctor I'd probably still have brain fog thick enough that I almost feel drunk and my liver would probably still be fatty, closer to diabetes. I actually went vegetarian for almost 3 years before I met this doctor, and that was when I developed epileptic seizures. Of course I was doing vegetarian completely wrong and eating much more wheat than I had ever eaten before. At the time it seemed like meat was harder to digest and I bought into all of the pro-vegetarian propaganda. Vegetarian probably can be very healthy but it needs to come with a big warning label because eliminating meat alone isn't a path to health in and of itself. I stopped with the vegetarian diet because this doctor recommended fish oil. I'm glad I followed his advice. 

 

In 2011 this forward-thinking Canadian doctor recommended:

The Second Brain: A Groundbreaking New Understanding of Nervous Disorders of the Stomach and Intestine - By Dr. Michael Gershon M.D.

The UltraMind Solution by Dr. Mark Hyman M.D.

 

Just this year:

 A New IBS Solution by Dr. Mark Pimentel M.D. Gastroenterologist. 

 

The Second Brain was a bit too in depth on the scientific side of things. It really wasn't written for the mainstream. It was more or less just that doctors journey in trying to prove that the gut has a mind of its own and that serotonin is a neurotransmitter that plays a role in gut function. I think my doctor was implying that my gut health and my brain fog that led to the seizures could be connected. 

 

The UltraMind Solution in retrospect was probably one of the greatest recommendations. It's a great overview. I wish Dr. Hyman wrote more books beyond just the topic of diabetes/obesity that he seems to have focused mostly on in the last few years. I'm surprised he doesn't have a book with IBS directly in the title. 
Either way the UltraMind Solution specifically discussed rifaximin and IBS and how they can contribute to anxiety, brain fog, memory problems etc. 

 

A New IBS Solution felt like it was written just for me though. I can only imagine how many people read that book in one sitting and can relate to all of the patient stories in the book and I like how the author compares how . It's hard to have IBS and not want to try the Cedar-Siani protocol after reading his book. 

 

As far as fermented foods go, I'm not sure. Up until 2013 I could tolerate probiotics and prebiotic foods. They never resolved my IBS-C constipation. They really didn't have much of an effect for me at all. I've mostly used 50 billion Renew Life, or Udi's Choice, Metagenics. In 2013 every time I tried probiotics within 3 or 4 days I would start getting stomach cramps and a flare up of my symptoms. I've tried prebiotics since like Benefibre (inulin in canada) and D-Mannose and both really made me bloated and gave me a ton of anxiety with more cramping and a churning stomach. I've tried sticking it out and managed to take probiotics for months hoping that it was some sort of 'die-off' but it wouldn't get better. Cutting the probiotic out brought relief within the next few days. I even tried prescript assist, an often mentioned soil-based probiotic mentioned in many health blogs and that had the same less than desirable effect after a few days. 

 

If there were rectal suppository probiotics I'd be much more interested in trying those out, after all the large intestine balance of bacteria types is what counts right? The small intestine isn't supposed to have much at all if anything in the first place. It seems like the balance of the supposed 400-500 types of bacteria in the gut is still a new frontier for medical science. Maybe they've got them all named but that doesn't mean they know much about the ideal balance. Right now people seem to think some are good and others bad, but I doubt it's that simple. 

Unfortunately with modern food industry practices, antibiotics in foods, pesticides and who knows what else, who knows what we're doing to our gut ecology. 

 

At first I suspected that hydrogen breath tests weren't common in Canada, nor antibiotics like rifaximin, because perhaps the people in power would rather limit the use of antibiotics for non-life threatening conditions in order to prevent antibiotic resistance of bacteria, only to save it for people with hepatic encephalopathy. But we can probably guarantee that if any gastroenterologist gets to the point where they're enduring what we endure, in some cases for many years, that they'd probably end up stepping out of the inadequate guidelines to seek out similar treatments.


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#6 CanadianGuy

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Posted 11 August 2014 - 03:21 PM

I'M ALSO GETTING THE SAME DRUG TODAY I WAS JUST WATCHING HIS VIDEO AND I PLAN ON DOING EXACTLY WHAT YOU ARE DOING, PLEASE KEEP US UPDATED. 

 

Great. Please share your experience too. I won't be getting the rifaximin/nystatin until tomorrow afternoon so I'm not sure if I should until Wednesday morning to start it. 

 

Have you read about any of those other additional items that might help the process? (Glutamine, ginger, lysine, zinc-carnosine, oregano etc) Will you be taking probiotics or not?

 

Were you able to do the Hydrogen/Methane breath test prior to getting the prescription?

 

Some part of me regrets not going to the moon to have that test done and finally see something come back positive when so many other tests were negative over the years. I've sent off the Metametrix GI Effects Comprehensive last week though, so that might show something, even though it's not a SIBO test. 



#7 lookingforanswers2014

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Posted 12 August 2014 - 01:04 AM

hey canadian guy, i used to have ibs too.  in my case, i tried vsl#3 alone n seen big improvements. so i dunno about rifaximin.

 

when i had ibs, i could n't eat alot of the high fodmap on the chart. n now so far all the nonos on the chart i tried so far hve been ok after vsl#3.

 

so that good i have able to get more food, i felt like i been missing out on a lot of important nutirents. 

 

but i still get mild maliase from gmos but much bbetter reaction than with ibs.

 

 

 

any theories on what caused your ibs?  i like to gather as much info on this as i can casually. i suspect i got mine from stomach infection that i didnlt know how to handled before.

 

 

 

 

 


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#8 CanadianGuy

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Posted 12 August 2014 - 12:19 PM

hey canadian guy, i used to have ibs too.  in my case, i tried vsl#3 alone n seen big improvements. so i dunno about rifaximin.

 

when i had ibs, i could n't eat alot of the high fodmap on the chart. n now so far all the nonos on the chart i tried so far hve been ok after vsl#3.

 

so that good i have able to get more food, i felt like i been missing out on a lot of important nutirents. 

 

but i still get mild maliase from gmos but much bbetter reaction than with ibs.

 

 

 

any theories on what caused your ibs?  i like to gather as much info on this as i can casually. i suspect i got mine from stomach infection that i didnlt know how to handled before.

 

 

 

 

 

Not sure what caused it. It was over 10 years ago. I really don't know what the original cause was. I might've had a mild case of food poisioning while I was in high school. I remember a few times I really felt like I had the chills and I was vomiting from what I remember, but it's been so long. 

 

Now that I'm about to begin rifaximin I'm unsure about VSL3. I've taken many 100 billion multi-strain probiotics over the last few years and nothing has given me any relief. Neither have the low bacterial count probiotics nor the prescript assist soil based probiotics. 

 

Since I'm going to be taking Nystatin anti-fungal with rifaximin, I've thought about taking S. Boulardii since it's apparently a non-colonizing form of yeast that helps prevent C.Diff when taken with antibiotics. I've already tested negative for C.Diff in the last few weeks and I'm not sure if it's a great idea to take the  Boulardii with the Nystatin so I'll probably wait and take that on the last day of my 10-day course of rifaximin.

 

I am considering taking oil of oregano drops with the medications though, and perhaps enteric coated peppermint with oregano oil capsules from Natural Factors (a canadian supplement company) as well. 

 

I've since also come across a blog and the author of it attended a SIBO conference in Oregon attended by Dr Pimentel who suggested that it's better to not avoid fermentable foods, carbs, or use a GAPS diet until after the antibiotic protocol in order for the medications to be the most effective. I can find the source for this later but I saw another post in this forum referencing the same blog. 

 

I really hope I can practically get rid of IBS to the extent that I can live life without feeling chained down and burdened by it every day. 

 

I'm also considering taking L-Glutamine, which I know I can find locally. I dont want to take so many things that I end up messing everything up though. 


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#9 lookingforanswers2014

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Posted 13 August 2014 - 12:19 AM

Not sure what caused it. It was over 10 years ago. I really don't know what the original cause was. I might've had a mild case of food poisioning while I was in high school. I remember a few times I really felt like I had the chills and I was vomiting from what I remember, but it's been so long. 

 

Now that I'm about to begin rifaximin I'm unsure about VSL3. I've taken many 100 billion multi-strain probiotics over the last few years and nothing has given me any relief. Neither have the low bacterial count probiotics nor the prescript assist soil based probiotics. 

 

Since I'm going to be taking Nystatin anti-fungal with rifaximin, I've thought about taking S. Boulardii since it's apparently a non-colonizing form of yeast that helps prevent C.Diff when taken with antibiotics. I've already tested negative for C.Diff in the last few weeks and I'm not sure if it's a great idea to take the  Boulardii with the Nystatin so I'll probably wait and take that on the last day of my 10-day course of rifaximin.

 

I am considering taking oil of oregano drops with the medications though, and perhaps enteric coated peppermint with oregano oil capsules from Natural Factors (a canadian supplement company) as well. 

 

I've since also come across a blog and the author of it attended a SIBO conference in Oregon attended by Dr Pimentel who suggested that it's better to not avoid fermentable foods, carbs, or use a GAPS diet until after the antibiotic protocol in order for the medications to be the most effective. I can find the source for this later but I saw another post in this forum referencing the same blog. 

 

I really hope I can practically get rid of IBS to the extent that I can live life without feeling chained down and burdened by it every day. 

 

I'm also considering taking L-Glutamine, which I know I can find locally. I dont want to take so many things that I end up messing everything up though. 

 

 

oh i see....your problem may be of different nature than mine. mmm... well best of luck with recovery.cool.png


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#10 CanadianGuy

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Posted 13 August 2014 - 09:26 AM

lookingforanswers2014: No worries and thank you for your input!

 

Started the protocol

 

I started the rifaximin and nystatin this morning. I took rifaximin at 7:30 am and then waited until 8:30 am to take my first dose of Nystatin liquid (5 mL 4x a day). I have to say that when I took the nystatin I felt my stomach churning a little bit for at least 15 minutes after swallowing it the first time and I didn't notice anything immediately after the rifaximin. Maybe the antibiotic and anti-fungal is a smart combination when so many people don't get the results they want on just the antibiotic. I guess I'll soon find out. So as of now I am taking rifaximin, nystatin, and magnesium citrate (I need 600mg a day enough to cause looser stools otherwise I get type 1 stools that get nearly impacted, are extremely hard and painful to pass and cause mucous and bleeding). I'm going to hold off on the peppermint and oregano oil combo capsules (Natural Factors brand) and the standardized oregano oil tincture (also Natural Factors) for today. I also haven't purchased any L-glutamine (not sure if I should get the fermented L-Glutamine or the standard stuff) yet, which I plan on taking at some point during and/or after the medications. I'm not sure about the zinc-carnosine, or anything else either yet. I am still considering whether or not to take S. Boulardii after I'm done with the 10 day antibiotic and anti-fungal. 

 

I was going to wait to start the medications until after tomorrow, because I have an abdominal ultrasound tomorrow morning, but last night I had lower belly cramping that triggered the excruciating upper left abdomen cramping/spasming and I decided I didn't want to wait.

 

 

Can you relate to the spasm/cramp pain attacks that I get?

 

About these spasm pains I get. I could best describe them as a charlie horse in the stomach/bowels, or whatever part of the gut resides in the upper left area (such as splenic flexure syndrome area of the colon). These attacks usually happen in one of two general areas. It has never happened in both areas at the same time.They're almost always located in the upper left abdomen, where they're also the most painful, but much less often I can get a cramp that feels like it's either in the lower belly at the belt line and/or pelvic cramp that almost feels like what I imagine prostate pain would feel like. (I know it's not from the prostate because I've had this checked many times and believe that this is the sensitivity to pain and cramping that IBS research often outlines). Cramping in the lower bowel or the rest of the gastrointestinal tract sometimes feels like it's putting pressure somehow on this upper area and leads to this charlie horse cramp. Gas and bloating can really aggravate this too. Thankfully when I cut out gluten years ago I went from bloating like a balloon every day to minimal bloating every day. That helps but even the smallest amount of gas anywhere during this cramping can trigger an attack. This can also be exacerbated by pressure on my tight knotted abdomen, such as tight clothing or putting something such as a computer on my stomach if I'm lying down. Being in public while bloated and wearing jeans or something that doesn't expand with my belly is a nightmare scenario I've endured many times.  The pain is strong enough that it has made me seek out the ER in the past, as I think that at least 95% of people experiencing this amount of pain for the first time would think they're dying or go to the ER. 

 

If you've ever had a charlie horse in your leg from stretching it too much when your leg was already tight/cramped, and it zaps you back to a position that doesn't strain the muscle, or if you're unlucky you pushed it too long and you're kicking yourself with the charlie horse pain for the next short while, this is how it feels. The main difference is this is in the GI system where it can last anywhere from 1-3 hours (sometimes several) and you cant reach the muscle to rub the cramp like you can in your leg. I sometimes end up rubbing my lower left ribs and back around the same area on the other side but it feels like it's not getting anywhere near the painful cramp/spasm. Sometimes it lasts several hours (it always feels like forever regardless because it hurts so much). When the pain happens it sometimes is nearly constant but there can be moments of increased intensity. 

 

 

Diet while on the medications

 

I'm not looking forward to the fat-free diet today for the ultrasound prep. Usually sugars, soluble fibres, carbs, gums, starches, and especially gluten which I eliminated years ago, are the things that upset me most. Those are what fat free products are based around. So I'll just try brown rice, vegetables and potatoes today. I guess the medications, according to what I've read about Pimentel, don't work as well when you're on a low fermentable diet anyway so that's how I'm starting off. I think that might be a mistake many people make. I myself made the assumption that following either SCD, GAPS or low FODMAP diet while on the medications would actually increase the chance of the course being effective, but apparently it might make it less effective. I'm glad I found this information or I would've been avoiding anything fermentable all week and possibly decreasing my chance of getting the result I'm hoping for from the medication. 

 

  • "Dr. Pimentel’s theory in regard to diet during antibiotic treatment is to NOT be on a low fermentable carb diet while using antibiotics as the microbes go in a hibernation phase and are less likely to be eradicated….I  tell my clients that fermentable carbs are somewhat like cheese to a mouse–let those microbes come out to eat so you can get ‘em with the antibiotic" (Source: Kate Scarlata RD blog. Post from January 22 2014 "Small Intestinal Bacterial Overgrowth (SIBO)")

 

Does anyone else get cramping that antacids dont touch but pepto bismol does?

 

Something I forgot to add to my story that I'm wondering if anyone can relate to. When I get the upper GI cramping nothing works medication-wise. Tylenol extra strength can turn the volume down a little bit on the pain but its so extremely painful that it usually doesn't end up feeling like it does anything at all. Standard antacids don't work at all either, either PPIs which I've taken long-term in the past or baking soda in water, tums, magnesium, calcium, etc. DGL doesn't seem to touch it much either if I take it after I'm already in pain. One thing that has always had an effect for me though is Pepto Bismol... Can anyone else relate to this? I think when I've told doctors this they assume it's GERD and throw me on a PPI which only ends up making everything worse and ends up making these attacks more frequent. I've also noticed that these attacks happen when my lower abdomen feels more knotted up and tightly cramped throughout the day beforehand. This can be triggered by wearing too tight of pants or getting bloated which seems to tip the balance over between crampy knot and painful spasm.

 

I've mentioned this to a few different doctors when I've told them about these painful attacks and that neither antacids nor PPIs help or prevent the spasm attacks. I never feel a warm burning sensation rising up my throat. I know what mild indigestion or that burping up acid feeling feels like and I almost never have that. I experience that once every few months and usually just for a split second. So for years I thought that my pain attacks were gastritis or heartburn only to have scopes and see no evidence or GERD except for eosinophilic esophagitis (white blood cell immune response in esophagus) and mild inflammation in the stomach and duodenum which GIs have told me in the past was normal, but other doctors more recently say this could be further evidence of the symptoms I've had. Meanwhile they've never done a biopsy to test for bacterial overgrowth between the stomach and small intestine.

 

So anyways my theory for a while was that I've read that pepto might have anti-microbial action. I've read more than a few posts by people who, under instruction of their doctor, have taken pepto at its highest OTC label dosage for multiple days in a row in order to kill bacteria. This made me wonder how pepto works and when I looked it up It really seems like science doesn't have a clear idea of exactly how it works (go figure) other than to say that it has anti-microbial action, somehow calms the bowels in a way that usually relieves diarrhea, and that it is also considered an antacid. So for me antacids don't work when I'm experiencing this cramp coming from what feels like the stomach. Drinking baking soda in warm water or a quick antacid like that can actually make it feel a whole lot worse, which makes sense if it's a spasm and the baking soda causes a reaction with stomach acid and causes gas to form.

 

Maybe pepto bismol has been a signal to me that this might be a microbe overgrowth or dysbiosis all along. Whenever I take pepto I also always get the dark brown tongue within 30 minutes of taking Pepto. I've read it is due to the pepto reacting with sulfur that can be present in the body/mouth/esophagus. I wonder if this has any relation to hydrogen sulfide, which is something Pimentel is apparently looking for now in addition to methane and hydrogen as a signal for SIBO. (I'm no chemist so I'm just grasping at straws with this and maybe someone clarify this).

 

I fortunately have discovered this medication protocol but unfortunately am not able to find a hydrogen breath test available anywhere before or after trying it, but considering I have IBS-C predominant and need at least magnesium to painfully get by, I am making the assumption that I have methane. This makes me wonder if this antibiotic regimen will work without the added neomycin antibiotic. This is why I'm hoping to take the oregano oil either tomorrow or at some point. The article I cited above mentions allicin garlic extract as a herbal alternative for methane+ people, but I did a delayed allergy 2-day patch on the back test in June and GARLIC was the only thing that gave me a reaction! Either I have a delayed allergy to consuming garlic, I have a skin reaction to garlic that is unrelated to eating it, OR perhaps the garlic reaction was somehow indicative of a reaction caused by the bacteria in my gut that are sensitive to it (obviously that's a stretch and I doubt it). Apparently Pimentel has also said that flatline breath test result for hydrogen or methane could also suggest a hydrogen sulfide excess which apparently is not yet visible on the hydrogen breath tests he uses. 

 

I know I have a lot to say, more than I'm sure most people care to read, but if there is someone out there who can relate I hope they benefit from reading this. I'm left unable to do much more than sit around and obsess over something that has gradually taken over my life. How could anyone who experiences what I do not try to learn and do as much as possible? I feel like I have no choice. 



#11 Nojokeibs

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Posted 13 August 2014 - 01:27 PM

I think bismouth is an old old remedy for h pylorii, they used to use it on horses that had stomach ulcers.  So peoto bismol might be a low level antibiotic in itself.  I don't think it eradicates the infection though, just beats it back to a dull roar. There is a protocol in the official pharmacopia for how to kill h pylorii, I've been on it.  It took two antibiotics for 14 days and an antinausea to do it, but it helped a lot.  

 

The problem with h pylorii is that to really recover from it you'll have to be vigilant never to eat anything washed in dirty water, never to drink any tap water, not even "bottled spring water."  And buy yourself a distiller for the cheapest method of protecting yourself from it.  It's literally in almost all water.  And almost nobody tests for it, even if you get a "water test" it's like they intentionally ignore it. Or maybe it's hard to culture.  The water test people I use just culture the water and tell me what grows. 


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Ever been to the Museum of Medical Oddities in Philadelphia, PA?  My picture is from there.  That's the guy with the megacolon.  I suppose he lived before surgery could help him.  His actual colon is there too, thick as my leg.  

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#12 CanadianGuy

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Posted 14 August 2014 - 09:51 AM

Day 2 of 10 of the medications.

I think I might start taking the oil of oregano today, maybe just a single 4-drop dose of the Natural Factors oil of oregano in the afternoon spaced evenly between the Rifaximin doses. I didn't have a spasm attack yesterday like I did the day before I began the medications, but I can't say that the medications are the reason for this. The knotted cramping I'm used to feeling in my gut has also been a bit different over the last 24 hours and I'm dealing with more bloating than usual, though not as much as the past when I'd blow up like a balloon.

 

Ultimately if this doesn't work I'm willing to try the Vivonex elemental diet even though I don't have weight to lose eating that way and even if it's expensive. I've spent too many years doing half-measures. I've been on a gluten free diet for years, tried dairy free, vegetarian and other diets for long periods of time and ultimately still haven't gotten past this. 

 

The problem is that IBS can have so many causes and science hasn't got a good grasp on all of them that you might end up with a doctor who follows or researches serotonin and/or neurotransmitter type causes as their area of focus, or you might go to a doctor who follows the SIBO/Dysbiosis type causes and the research supporting that, or you might end up seeing doctors who still believe it's all in your head and that you just need to relax.

Because it's so complicated and individualized of a disease with low mortality rates we end up suffering with widely varying but somehow related symptoms for years mostly because what's going on is so poorly understood. If IBS was identical for everyone and actually killed people it would be a priority for research and treatment then science probably would've discovered what is going on by now.

 

I remember once in a health food store I met a microbiologist who's field of study was focused specifically on the bacteria that exist in our gut. I remember saying something like "Wow that's exciting. It seems like a scientific frontier since so little is known about these bacteria that exist in our digestive tracts and how everyone has different bacteria" and she got upset, as if I was insulting her intelligence or woefully uniformed. She said something like No, that's a myth. We know all of the bacteria that exist in the human body. I remember thinking - Wow, ok... whoops... She must be right, after all she's studied gut bugs, I'm just someone who's read one too many brochures for probiotics. Even my gastroenterologist's resident, when I told him that probiotics just like the Align he handed me a flyer for, that these exact probiotics flare up my symptoms, he acted surprised as if it was impossible. He replied with something like Oh, really? But those are the GOOD bacteria, not the bad ones. Then there are doctors like Dr. Pimentel who say that the whole good vs bad bacteria thing isn't that clear cut or as simple as the probiotic companies would like you to believe.  

 

I guess what she meant is true in that most people carry the same 400-500 different types of bacteria. I've looked into what she said since and I guess the consensus among most SIBO and dysbiosis specialists is that while we all carry similar or even the same bacteria types, but it's the balance of the different types is what widely differs between individuals. From vegetarians to meat eaters, people given antibiotics as infants and people whose immune systems developed tolerances to a certain balance of bugs while they were still infants, THAT is the difference. Yes some people do contract infections of pathogenic micro-organisms, but even non-pathogenic bugs can end up out of balance or built up in the wrong place like the small intestine. But if you bring this up to 9/10 gastroenterologists they will act as if you're talking about nonsense, unproven and not recognized by their medical guidelines and they'll just generally be annoyed that you think you know anything at all, especially if it doesn't fit in line with their course of thinking about your condition. They're mostly unwilling to make theories. I get that, but I need theories because the guidelines haven't helped me. Telling me I don't have anything clearly wrong and sending me out the door isn't the type of medical care I'm looking for. I'm looking for relief so I can actually live a normal life.

 

This is something science is learning about in animals as well. Just like the whole e-coli scare in cow meat type of thing. From what I've gathered, even in cows e. coli is a typical gut bug but it grows out of proportion when cows are fed corn-based diets resulting in high levels of e. coli. Maybe e.coli scares are all from cows with cow-IBS. Apparently the grass fed cows have less of these types of bacteria in their bodies so when it comes time for slaughter there's less chance that this will end up accidentally getting into the meat. Maybe we're like these corn-fed cows that end up culturing a gut ecosystem that has a negative impact on our overall health.

 

 also remember reading a study that said they know why red meat causes an increase in heart disease now. Dr Oz trumpeted that it's because of the CARNITINE amino acid in meat! They said that apparently meat eaters have a larger amount of a certain type of bacteria which is cultured or thrives on carnitine and they produce a waste product that leads to an increase in TMAO in the blood stream that somehow ends up contributing to heart disease. They kept talking about how bad carnitine was, but they seemed completely uninterested in this gut-bug connection. With all of the processed foods with carageenan and gums and fat-free fillers, sugar alcohols and starches, who knows what type of gut ecology we're culturing. Who knows if any of these toxins produced by these gut bugs are having a wider impact on our health as a whole. Infectious disease might not be the big killer that it once was, replaced by heart disease and cancer, but it doesn't mean that microorganisms aren't playing a big role.

 

It's like a lottery ticket, except instead of 6 two-digit numbers between 1-49, it's 400-500 bacteria types that can vary in their presence between minimal and overgrowth and also by location. If you've ever read the odds of winning the lottery, imagine the uniqueness of the imprint of your own gut ecosystem. These are all bacteria that are fighting to survive, survival of the fittest. We may have evolved with them and require them to be there in a state of peaceful symbiotic co-existence, but maybe those of us with IBS have messed this balance up somehow without even knowing how or why. If IBS is truly, or at least partially caused by certain balances or positions of these bugs, then it's no wonder that science doesn't have a definitive answer. There wouldn't be a test that specifically shows whether you're positive or negative for all types of IBS, it would end up being a probability based on comparing health and symptoms of large amounts of people who have had their gut ecology mapped out..

 

It bugs me that some lady who's a microbiologist told me that it's just a myth that the bacteria everyone carries around are different. Scientists like simple science or science clear enough that they can measure the economic return on investment of their time. 

 

Hopefully some day widespread preventative medicine type diagnostics coupled with supercomputers will be able to recognize patterns that are beyond what current narrow minded scientists are capable of recognizing. Science doesn't have all the answers, it only has some of the answers because science is about investigating and developing hypotheses. It's not about sitting back and saying 'no, this doesn't exist because the existing science hasn't proven it!. Science is about making smart guesses and trying to prove it. 

 

Until then, we're stuck going in circles trying it all and then trying it all over again because we have no choice. 



#13 Brad Soltani Arabshahi

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Posted 15 August 2014 - 02:32 AM

Have you seen this? Apparently, our body can take care of itself, eliminating toxins and bad bacteria, just by not eating: http://www.ncbi.nlm....pubmed/17078771

 

As much as I HATE Joel Fuhrman, I'm beginning to think his suggestions about long term fasts might not be a bad idea.


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#14 CanadianGuy

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Posted 15 August 2014 - 08:54 AM

Brad Soltani Arabshahi: The fasting therapy makes sense. Thank you for sending me that information. The elemental diet that starve out the bacteria makes sense too, but unfortunately I don't have weight to lose at the moment. I'm 5'9 and 139 Lbs. This is the thinnest I've ever been. For most of the last few years I've been 155-160 Lbs and for most of the last 10 years when I've had IBS-C I was 185-190 Lbs.  

 

In the last 3-4 months whatever I eat I feel full quickly and if i eat too much or foods I cant tolerate when I'm flared up it increases cramping of the stomach and bowels. If not for the magnesium citrate I take daily these reactions to food would each lead me to more constipation. On top of that I have lost my appetite entirely. During most of the last 12 years that I've had IBS-C I had a huge appetite, mostly a sweet tooth. But lately I've been doing so badly that I can miss out on eating for several hours and then suddenly realize that I haven't eaten without feeling the slightest bit hungry. My only reminder to eat is if I begin to feel weak or light headed and then that usually goes away after eating. It's messed up I know. 

 

Day 3 of 10 of the medications has begun though. I haven't had one of those excruciating upper GI pain attacks since the night before I began the medications. My bowels still feel knotted up but the knotted feelings seem to be more mobile than usual. Usually, lately, the knot is just stuck higher up where it feels like it's sensitive to deep breaths and my diaphragm pushing on it. Now the knot feels lower in my belly at the moment. 

 

Yesterday I began the oil of oregano and an hour after eating it I ate some food and wow it made me feel nauseous. I took a ginger chew and within 15 minutes I felt fine, but that was weird.


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#15 Nojokeibs

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Posted 15 August 2014 - 02:56 PM

Have you seen this? Apparently, our body can take care of itself, eliminating toxins and bad bacteria, just by not eating: http://www.ncbi.nlm....pubmed/17078771

 

As much as I HATE Joel Fuhrman, I'm beginning to think his suggestions about long term fasts might not be a bad idea.

 

I've done fasting for SIBO-like symptoms, and Dr. Fuhrman's book on fasting is mostly excellent.  He hasn't quite connected ketosis and fasting with the next logical step though:  coming off the fast with something other than fruit.  He is a product of the Natural Hygeine theory of fasting, which is a very old line of thought that includes raw foodism and veganism.  He himself probably isn't a vegan though, more likely a pescatarian if you read his books carefully enough.  Lately he has increased his recommendation for fat percentage in his diet to 30% and now includes a warning not to eat "too little fat" which I approve of highly.  Not that it matters what I approve of, it's just that, I think it's a sign that more and more of the old guard are "getting the message" that low fat doesn't work, and not just because people get fat on low fat diets.  

 

In my lifetime I've seen this contingent of the old guard go from being considered "dangerous mavericks" to "the best new idea in how to get thin and healthy."  It's a bit bewildering to see vegans going from a hidden underground of whispering recipe swappers in the 1980s to nearly the mainstream.  Especially the natural hygienists.  However the ideas date back longer than the 1980s.  Many of the ideas of this older movement have been picked and chosen by modern health gurus from both the vegan and paleo circles, as well as just about everyone who falls anywhere on the spectrum between them.  It's no accident that one thing both "movements" have in common is an emphasis on raw vegetables, despite them making it sound like they're basing their suggestions on "research" (more likely it was reading old books). 

 

There's still nothing new under the sun, but since most of this is outside the realm of most education systems, people get blindsided by it.  When science abandons of dismisses or even discredits something, they tend to sweep it under a rug and never teach it again.  Then it ends up in commercial books.  Jethro Kloss was considered to be a scientist in his time, and may have been the first or one of the first to make soy milk in the USA. Now he's just an interesting book author or at best, herbalist. 


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Ever been to the Museum of Medical Oddities in Philadelphia, PA?  My picture is from there.  That's the guy with the megacolon.  I suppose he lived before surgery could help him.  His actual colon is there too, thick as my leg.  

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#16 Brad Soltani Arabshahi

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Posted 20 August 2014 - 02:20 AM

I have an interesting update:

3 days ago, I came to Disney World, Orlando.

 

I drink coffee at 7:00 am, go to parks - eat nothing, drink lots of water AND "WALK", "WALK", "WALK" over 8 hours per day.

 

I come back hungry to a Chinese all you can eat buffet, I eat EVERYTHING except cheese and bread. (Fish, rice, broccoli, pork, shrimp, chicken, ...)

 

[Sorry for this:] my stool is a bit hard, but "S" shape and long [and much thicker than 4 days ago], much less smell [I relieve gas big time during my walks in the park - not during the games though lol]

 

Absolutely no cramping or pain. Some bloating, very minor.

 

So, I think in my case:

- Cheese is a big no-no

-Walking long hours will help the bacteria to go down, not back to the small intestine

-Long hours of hydrating + intermittent fasting helps eliminating the waste

 

But I don't know how much I have to walk per day, when the vacation ends. [believe me it has nothing to do with stress. I'm dead scared of the rides] 


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#17 CanadianGuy

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Posted 20 August 2014 - 12:02 PM

Well I'm starting day 8 of 10 of the medications. It's been an interesting journey and I'm not sure yet about what to think of it. 

 

Thanks for the replies Nojokeibs and Brad Soltani Arabshahi.

 

Nojokeibs:

I remember seeing a show that originally appeared on american PBS featuring  Dr. Fuhrman a few years ago. I remember it was right around the time I stopped with the poorly executed vegetarian diet that I had been on for almost a few years straight. Anyways have you ever tried vegetable juicing with a masticating juicer? I have a friend who has battled with IBS-A and she claims that juicing vegetables really helped her get back on track. If I remember correctly, isn't this something Dr. Fuhrman advocates?

I know that Dr. Pimentel's SIBO medication/diet protocol advises against consuming most fermentable carbs for a period of time after the medications as well as the avoidance of probiotics, but I haven't heard anything specific about vegetable juicing. I understand that masticating juicers remove most of the pulp and insoluble fiber and leave you with wet/juice soaked soluble fiber and the juices with all of the nutrients and enzymes which haven't been destroyed by oxidization and/or heat. I have never tried fresh vegetable juice in my life. I have even eaten less veggies in the last 3-4 months having felt so ill and in pain due to their ability to trigger symptoms which I always attributed to the extra fiber. Also certain things seem to trigger the pain for me such as tomatoes especially sauces and canned/prepackaged, onions, etc (I always suspected the acidity and or citric acid or preservatives in these). Have you tried this type of juicing?

 

It was always my understanding that fruit juice was best avoided because by removing the fiber and concentrating the juice you end up with a huge dose of inflammatory sugar without fiber to balance it out. I'm not sure if this is faulty logic or not, but I've always tried to stick to water and avoid drinking calories. Now that I am closer to being underweight and no longer overweight and pre-diabetic as I was years ago, I still think this way, but I'm now wondering specifically about vegetable juice. 

 

Vegetable juices on the other hand seem like they'd be the opposite. That getting rid of the fiber and concentrating the nutrients might be a good thing. Unlike fruit they don't have as much sugar and perhaps the dietary fiber is "great" for some people but in the case of those who don't get adequate nutrition due to their symptoms, maybe this is ideal. I've never tried it though. The closest thing I've ever had is V8 canned juice which I haven't tried for a few years because the last time it triggered stomach cramps. I also doubt V8 is anywhere near as comparable to just pressed juice that hasn't been preserved, hasn't oxidized, been heat treated, hasn't had salt added, and still contains the enzymes in the plants.

 

What's your perspective on fresh vegetable juicing? 

 

 

Brad Soltani Arabshahi

Hey Brad thanks for the update. Personally I feel that physical activity has a role to play in the process. I mean sure sitting around doesn't seem like it would logically help when our bodies are clearly designed to be in motion. The problem is that once we start feeling bad we hunker down and roll up in a ball and avoid anything that might trigger symptoms. Then the lack of activity most likely has a negative impact on the gut and makes IBS even worse. It becomes some sort of vicious cycle that would seem to need to be broken, however I don't think that lack of physical activity alone is the cause of IBS so for most people so getting out and moving around might be good. Maybe for some people it gets motility going normally and naturally helps cleanse out the bowels in some way that nothing else can come close to, but for others maybe it isn't enough . I also agree that certain things are best avoided on vacations. Avoiding cheese and or dairy while travelling with IBS-C sounds very smart.  

 

2012 was my best year. I was exercising 4x a week using HIIT cardio and weight training. Later in the summer of that year I started getting stomach cramps again though and bending around and twisting to lift weights eventually seemed to cause me to feel worse overall. I suspect that something was going off the rails in my gut for a period of time regardless of the physical activity. 

Disney World itself is something that has been ruined in the past for me by IBS. I remember going there in 2009 with family and having to leave the park and take the monorail or bus back from the park alone multiple times to sit in the hotel room. It's just one of those experiences that tells me that it couldn't possibly be stress at the cause of all of my IBS problems because Disney World was always one of my favourite places in the world to be and the least stressful possible. Looking forward to going to DW again though and hopefully not having to worry about how I feel.

 

Hope you're having fun! 

 

How the last 5 days on the medication has been

In the last several years I always seem to be sensitive to the effects of most drugs and even natural herbal and nutrition therapies, so I shouldn't really be surprised.

 

Day 3, Friday was a pretty uneventful day. Stomach still felt like it was in knots, but I knew it was still too soon to tell. 

 

By on Day 4 of 10, Saturday, I felt especially crampy in the mid and lower abdomen all day and by 9:30pm it  triggered a full blown attack of pain in the upper left abdomen area that radiated through my back and lasted a few hours. Not the worst I've ever had but still horrible. With the cramping pain I also feel what seems to be a trapped gas bubble. (I've suspected these attacks are splenic flexure syndrome of the large bowel, but I think they might also be in my actual stomach itself) This was really discouraging for me because I felt like the medication couldn't possibly be doing anything. I stuck it out, took pepto, DGL licorice, peppermint tea, ginger tea, tylenol and whatever else I could think of to counter it and the next day I felt much better.

 

So Day 5, Sunday I felt crampy all day but to a much lesser extent than the day before and it didn't trigger an attack of pain at all. Sunday morning I also started taking IntestiNEW by Renew Life, which is a L-Glutamine based poweder which also contains glucosamine, marshmallow root, ginger, galangal and some things that are supposed to help soothe and heal the lining of the gut. So perhaps this is why I felt better on Sunday. 

 

Monday, Day 6 even less cramping.  Continued the IntestiNEW and added a single softgel of 600mg EPA/300mg DHA fish oil. Today I was starting to feel a lump/frog in my throat type of feeling. Felt like it was around or above the adam's apple, but had no effect on breathing. It would go away if I took a sip of water and then the feeling would return. I looked up side effects of Nystatin and Rifaximin and noticed that less common side effects include larynx and or upper eosophagus pain and or lump in the throat feeling, so I'm pretty convinced that this is what it is. Very uncomfortable and strange feeling but not painful. At first I was worried my throat was closing up but I haven't had any difficulty swallowing food and haven't burped up any stomach acid or had any difficulty breathing. I suspect that the feeling might be coming from where the sinuses connect to the throat (I know very little about the anatomy of this area so this is just a guess). I would like to try using a Neti Pot but I left it at my parents house a half hour drive away and haven't made it out there yet this week. 

 

Tuesday and Wednesday Day 7 and today Day 8

Honestly my bowels still feel knotted up. If I press on by belly slightly it feels just as knotted and sensitive to pressure, but I haven't experienced any crampy pain either yesterday or today. Yesterday I got some Zinc Carnosine capsules in from Amazon so I started taking those, just 2 capsules per day, also supposed to help heal the gut. 

 

I also found out that my ALCAT IgG Allergy Test results are in and I'm going to get the full report and list of safe, moderate, reactive and hightly reactive foods on Satuday, which is when my follow up is booked with the doctor. Good timing too because this is the day after my 10-day antibiotic course ends.

 

At this point it seems like the antibiotics may have helped, but given my chronic IBS-C, and the fact that I wasnt breath tested for methane or given neomycin with the rifaximin (the standard protocol for those with methane present), I'm thinking that the antibiotics might not end up being the amazing cure that they seem to have been for other people. This is either because the underlying problem for me might not be SIBO even if SIBO came out of it and made it worse, OR maybe the medications I was on were only 2x a day for 10 days without neomycin (compared to rifaximin 550mg 3x a day x 14-days WITH neomycin for IBS-C and methane positive results).

 

Either way I'm still glad I tried and maybe I'm jumping the gun with this. My BMs have become more regular  (though I've still been taking 300mg magnesium citrate 2x a day) and most importantly I haven't had pain either before or after having a BM which has been happening regularly in the last several months. Come Saturday I'll be done with this course of antibiotics and with a SAFE FOODS ALCAT-test result list that I can base my diet around and hopefully keep moving everything in the right direction.


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#18 CanadianGuy

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Posted 24 August 2014 - 08:37 PM

Day 9 and 10 were pretty uneventful. I can't say that I feel cured but it's been more than a week since I've had an attack of spasming pain as of today, which is better than I've been for a few months. I'm thankful for that. Yesterday was my first day off of the rifaximin and I felt a little queasy after eating later on in the day, which at the time I thought might be the bacteria in the colon repopulating or something along those lines. I also got my ALCAT food intolerance test results back which have highlighted that I'm fairly sensitive to more than a few things that I consume on a regular basis. 

 

I'm not really into the idea of following a SCD, GAPS, or other similar diet for months as recommended by Dr Pimentel. Also, I just don't have weight to lose by going on a restrictive diet. Instead I'm going to try to stick to the non-reactive foods list from my ALCAT test results for the foreseeable future. 

 

I'm continuing taking 300mg of magnesium citrate in the morning and then again at night. My ALCAT results show that I'm mildly intolerant of Oregano, so I'm going to stop with the oil of oregano or now.  I don't think I'll be taking probiotics for now (I don't want to mess up how I'm feeling now that I'm feeling better at the moment). I've also started taking zinc carnosine daily as well as IntestiNEW (L-Glutamine based) powder from Renew Life with the hope of healing the gut. I'm also getting into the habit of drinking peppermint tea once per day and taking 50mg of 5-HTP once per day. 

 

I'm hoping things keep moving in the right direction.



#19 Brad Soltani Arabshahi

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Posted 28 August 2014 - 04:43 AM

Updates? :)



#20 Nicole Wahab

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Posted 28 August 2014 - 06:29 PM

Well turns out my docotor wanted one more colonscopy before anything, i'm going back Friday. Please keep us updated with you however!







Also tagged with one or more of these keywords: rifaximin, SIBO, IBS-C


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