Esther’s Xifaxin Story
“It’s impossible to describe the awe I (and my husband) feel as I am able to do things I haven’t been able to do for so many years.”
Esther’s improvements using a drug to treat what she mostly considered to be a minor symptom astonished her and others
Here we recount Esther’s amazing experience with Xifaxin (Rifaxamin), an antibiotic often used to treat small intestinal bacterial overgrowth (SIBO). Esther had been ill for decades with severe Chronic Fatigue Syndrome (ME/CFS) but it wasn’t until she treated her gut symptoms (which she’d considered secondary to ME/CFS) before she experienced major improvement.
First we look at Esther’s history with ME/CFS and then her life-altering (if not completely curative) experiences with Xifaxin – a drug she continues to take today.
“Twenty-seven years ago I was taking care of three children, ages 8 months, 4 years and 13 years plus my 80-year old Dad who had Alzheimer’s disease. Towards the end of my pregnancy, perhaps two months before my third baby was born, in the summer of 1985, my husband and I visited Lake Tahoe for a week. I remember I was very big and had to push myself to get through the vacation.”
After the birth of her third child her time with ME/CFS began.
My third child was born November 20, 1985, and by the following summer we had new a family joke. I’d so often said I was sick and tired that we began abbreviating it to S&T. At the time I was preparing for my daughter’s and my double bat mitzvah. I would wake up in the mornings feeling fine, but by the afternoon I was S&T, only to feel well the next morning. That was until S&T became my full time occupation.
It started for Esther, as with many others, with an Epstein-Barr virus infection
Tests revealed she had a chronic EBV infection. As she worsened she became bedridden, very weak, and extremely cognitively impaired.
I was one of the lucky ones! My long-term internist asked me if I’d been in Tahoe in the previous year. He said to rest and I’d probably be better in six weeks. I wasn’t and when I went back, he began testing my EBV titers, discovered I had a chronic EBV infection, told me there was nothing that could be done (no anti-virals at that point) and that I should just go home and rest. So I did. I was completely bedridden for a year. I was unable to even follow a sitcom on TV.
My keenest memory is being so weak that I couldn’t turn my head in bed and would only move my eyes if necessary. We used to call this weakness “Raggedy Ann” in those days; it was like a faux paralysis.
I remember crawling to the bathroom and then laying on the floor after going until I had the strength to get back to bed.
Besides the fatigue she also experienced weakness, PEM, flu-like aching which was extremely severe as her infection resolved, persistent sore throat (tonsils removed), swollen lymph nodes, sound/light hypersensitivities, allergies, cognitive decline, memory and concentration problems, shrunken brain with lesions, sleep problems, sleep apnea, fibromyalgia, emotional lability, and neurally mediated hypotension.
When her EBV titers began to decline after a year, she marginally improved and was able to spend some time downstairs in her recliner with her family. After two years her very slow pace of recovery had left her depressed.
Somehow, I had unconsciously decided I would be well by the two year mark. When I hit that mark and didn’t, I became deeply depressed. It took me some time to figure out that I had set an internal deadline to be well by then, and I was angry that I was still sick after my worst-case deadline.
Her family life, of course, had taken a huge hit. Against her doctor’s orders she nursed her child, but contact with him and her other boy was limited as her weakness and cognitive issues made it difficult for her to communicate clearly.
I didn’t see him much and I remember his crawling up the stairs to my bedroom and knocking on my door and hearing the caretaker saying, “Mommy can’t take care of you now,” as she took him back downstairs. I’m saddened to this day that I really don’t remember him as a baby and toddler.
Neither of my sons have any memory of me as a well person. My husband and I can hardly remember what I was like when I was well. I got sick only five years into our marriage.
Over time, Esther tested positive for herpesviruses (EBV, HSV-1), and a brain MRI showed lesions and shrinkage. She was diagnosed with orthostatic intolerance (orthostatic hypotension), sleep apnea, and hypothyroidism.
Esther never dreamed her minor gut symptoms could hold an important key for her
She was on torvastatin, omeprazole, Reglan (for gastric reflux), Altace (Ramapril, for high blood pressure), Ambien, Amlodipine (for high blood pressure), Cymbalta, Levothyroid, and Trazadone (for sleep).
Throughout her ME/CFS and before, she’d had gut symptoms — noisy but painless gurgling sounds, and occasional diarrhea and nausea, and was diagnosed with gastric paresis.
She used various remedies (anti-reflux, anti-diarrhea, antacids, anti-gas pills) to control her gut issues. They were so minor compared to her other problems and so easily controlled that she felt they were of little consequence.
She was very wrong.
Xifaxan (Rifaxamin)
It was not until her GI symptoms became severe (frequent stomach pain, diarrhea, gas and ‘rotten egg’ burps) in 2011, that she got professional help for them. A colonoscopy was normal and a gastric emptying study revealed delayed emptying of both liquids and solids.
In 2011 under her gastroenterologist’s direction she began Xifaxan at 550 mg 3X day for about 10 days to treat Small Intestinal Bowel Overgrowth (SIBO).
Amazing and Rapid Transformation
Within a week, in what she called “an amazing transformation”, she felt better and had more energy than she’d had in years. We don’t usually connect gut problems with orthostatic intolerance, but for the first time in years she was able to stand without symptoms.
“What really knocked me and my family for a loop was that I could do more, stand longer, etc. They kept telling me to sit down and they’d do whatever and I said; amazed, I don’t need to sit down now.“
Cognition Greatly Improved
The brain is a long way from the gut but Esther’s cognition improved greatly when her intestinal bacteria improved
We don’t usually connect gut problems with the brain or cognitive functioning or depression, either, but her cognitive functioning increased greatly as well. She went off her antidepressants, cut out Xanax and Ambien, halved her dose of Trazodone, and said goodbye to her shrink.
Esther’s gut had clearly been affecting her brain.
A Different Kind of ‘Tired’
“You’d think that having had so much experience being ‘fatigued,’ I’d have no problem telling when I was tired from my new level of activities. Not so! Normal tired is so mild as to be almost undetectable! It is nothing like the ME/CFS exhaustion and malaise and weakness and sick feeling that was my common state for 25 years. No wonder saying we’re fatigued doesn’t register with well people!”
Sleep is Refreshing!
“After so many years of sleep problems and the constant use of multiple sleep medications every night, I can go to sleep relatively easily (though not as fast as I’d like some nights) without any sleep medication and wake up refreshed. I do notice that, even without any sleeping pills, it takes me a little while to feel ready for the day. I need some down time then, maybe because I’m a night person.
“I haven’t given up using a half dose of Trazadone before bed yet, because I’m just not willing to rock the boat at this time. On very rare occasion, especially if my bladder is waking me up too much or something is bothering me making it difficult to go back to sleep, I will take a Xanax to go back to sleep. Not getting a good night’s sleep for any reason definitely diminishes my energy; I need to sleep many hours a night to feel my best.”
Living Life!
“In May of this year, my husband and I took a 19-day, 4-city trip across the country and although I didn’t do everything I wanted, feeling the need to rest at times, my husband and I were both amazed at how much I could do including visiting with family and friends and even sight-seeing in multiple locations!”
Not Well Either!
Esther thought Xifaxan might be ‘it,’ but it wasn’t. She still has days where she’s limited to three for four hours of activity. She’s not well, but she is very, very much improved.
“My experience with Xifaxan has produced such a miraculous improvement, giving me a life again after so long. I hope research will be done to explore the connection between IBS, SIBO, ME/CFS, and Xifaxan to help many others.”
Ongoing Use
She went on and off Xifaxan three times, and each time saw her symptoms return within a couple of days. Her gastroparesis which feeds her small intestinal bowel overgrowth (SIBO) appears to require that she take Xifaxan regularly. Two years later she continues to take 600 mg of Xifaxan three times a day. Her insurance is continuing to pay.
In the beginning Esther was told her recovery probably wouldn’t last and that people with gastric problems were most likely to benefit. She knows several people who’ve been helped by Xifaxan who’ve gotten worse when taken off of it.
(I know of someone who recovered while on Xifaxan who no longer needs to be on it, so maybe there’s hope.) Her ME/CFS doctor, Dr. Andreas Kogelnik in Mountain View, CA, is continuing to follow her progress.
Long-term Use
Esther needs to be on Xifaxin full time but better studies are needed to determine it’s safety and effectiveness in long term use
The possible development of treatment-resistant strains has made long-term antibiotic use a no-no for most doctors. Rifaximin was judged safe, however, for long term use (>24 months) in hepatic encephalopathy (HE) patients, a group that shares some interesting symptoms (sleep problems – days/nights reversed, cognitive issues) with ME/CFS. (HE is believed caused by high ammonia production from gut bacteria. It induces encephalopathy by altering the blood/brain barrier, decreasing blood flow, or promoting cerebral edema.)
They stated that the risk of development of resistant bacteria appears to be low, but acknowledged that better quality trials are needed to fully assess Rifaximin’s long term safety.
Rifaximin is a broad-spectrum antibiotic that is believed to have little effect on normal gut bacteria. It was FDA approved for travelers’ diarrhea in 2004 and for HE in 2010. One study suggested higher doses (1200 mg/day) were more effective in the treatment of small intestine bacterial overgrowth (SIBO). A recent study suggested that a herbal preparation may be as effective as Rifaxamin in the treatment of SIBO. We’ll be covering more about SIBO rifaxamin (Xifaxin) and herbs in a future blog.
Xifaxan 550 mg is very expensive, about $2200 a month out of pocket for a 3X a day dose. So far the FDA has not approved it for use with IBS and SIBO.
I think that the microbiome is going to be where the action is [in ME/CFS]. Dr. Ian Lipkin – Leader of the Gut Microbiome Project for ME/CFS
- From cognition problems to fatigue to orthostatic intolerance to her mood, bad gut bacteria affected Esther in many ways. Please help fund the Lipkin microbiome project to understand the gut bacteria’s role in ME/CFS
- Coming up soon: A person with ME/CFS resolves her decades-long gut problems using home-based treatments.
Update: Check out two ME/CFS patients’ attempts to reset their gut and return to health.
Any idea what the herbal formula was in the study mentioned?
No – but I’ll get to that study in a future blog.
Hi—do you know what the herbs are in the “herbal preparation” of your PubMed reference? I don’t have a PubMed account, and the details aren’t listed in the article precis. Is this something you will be covering in the upcoming blog you mention?
A piece of synchronicity: paleo diet proponent Chris Kesser also mentions SIBO and fibromyalgia in his latest blog entry:
http://chriskresser.com/is-fibromyalgia-caused-by-sibo-and-leaky-gut
Here’s the link – http://www.ncbi.nlm.nih.gov/pubmed/24891990 – they don’t say in the abstract but I will do a blog on it when I get the study. Thanks for the link to Chris’s blog.
Full text https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ It is written Herbs that have antimicrobal properties…
What about activated charcoal? It wipes everything from your digestive tract – also medication so be carefull. It is said that it is better to do it by yourself that buy in the shop – becauese it will not contain artifical additives . Personally i felt worse after charcoal from pharmact, i feel more tired and unwell – and I do not know why? Maybe it iritates my bowels? Hmmm. I felt worse even after taking Nifuroxazidum …
This is so interesting, thanks for sharing.
I’ve been ill for 18 years and have observed people recovering and improving through so many different treatments, as well as spontaneous recoveries.
I’m starting to lean toward the hypothesis that this illness is just a collection of symptoms that is an endpoint of many different processes, much like POTS and other syndromes.
It seems incumbent on patients to keep pursuing tests and treatments until they happen to stumble on something that works, a physically and emotionally exhausting process. (And, one that excludes the sickest.)
I’m very happy for this patient and hope it’s something that helps others.
It’s so much more difficult for the gut because symptoms often are not very illustrative of gut problems; i.e. you can have a lot of distress without having major gut problems and much less distress when you have major gut problems. If the gut connection is really important in ME/CFS in general it’s probably been mostly hidden by the other symptoms. I really hope the Lipkin Microbiome study gets funded!
I’ve come to that conclusion also, Robin. I’ve had fibro for 25 years, no GI problems (knock on wood), the usual other suspects, though.
Great article! I had a similar miraculous recovery from Xifaxan ~3 years ago. After about 2 months straight of diarrhea, my doctor put me on 10 days of high dose Xifaxin. It was amazing! My doctor was luckily willing to continue prescribing, but we soon learned my insurance wouldn’t allow more than 10 day supplies and one per month. I was given a connection through Canada and was eventually ordering it via India at closer to $250/mo.
Unfortunately for me, as many others with ME report, it only lasted 3 months. After, the effect of the pill was nonexistent. I went off of it for 3 months, started back up, nothing. About a year later tried again, but still never with a similar result as the first.
I am SO happy for Ester. And still would recommend Xifaxin to anyone! I lucked out taking Xifaxin just as I had moved to a new city. That boost gave me the opportunity to explore my new surroundings and make friends quickly. Congrats to Ester!
Interesting. I’ll report on the herbs that were tried out in one study and someone who cured their gut problems and increased her energy by fermenting a range of foods.
I have had fibromyalgia for 20 years and recently I had the bariatric Roux-en-Y surgery. I’m pretty sure that I have had sidbo for 20 years and this April when I had my surgery when they relocate your small intestine and mess with a lot of things in there I think that it set my Sid bow off the chain. I went to my doctor and told him to check a couple things and I told him that I either have something wrong with my pancreas, some type of gastritis and or even alone a gut infection. So he checked out all of them and everything came back fine except he gave me xifaxan. It was a gift that I have not had in 20 years. I got my life back for 3 months where I was on the xifaxin. I had more energy than I had ever had, was barely in any pain and no problem sleeping. My memory was better than ever and I felt really smart for once in my life since I’ve had fibromyalgia. I knew in my gut that as soon as I went off the xifaxan that it would come back. And it did. It didn’t even give me a day without coming back. I feel like my life has been ripped away from me again and I actually feel worse. It was the greatest thing ever to have my life back for 3 months. But yet only to have it ripped away after 3 months of paradise. I’m trying to figure out what to do next because it is torture knowing that a medicine can change your life and give you it back and you have time for your child when you’re a single parent and you can go back to work and not be bedridden and have migraines and tired and just really beat yourself up and your child suffers because you can’t do anything or you’re too tired. And you don’t feel good enough to get a job that you know you’re good enough for because of your state of your fibro fog and your memory cutting in and out due to anxiety. I don’t know what was worse having fibromyalgia for 20 years and just suffering or having it back for 3 months knowing it was in my grasp and now it’s taking away again. Where do I go from here! I don’t want to be here just wasting away life and dragging my family down and my 11-year-old son that has ADHD and doesn’t understand why he can’t go do fun things with his mom and why his time here on earth gets ruined and he’s getting punished because of me because I can’t do things because I don’t have energy and I am in pain all the time. I want my life back. Actually I was better than I ever was before the fibromyalgia! I keep praying on it that was my miracle I just didn’t get to keep!
Keep tuned! Fecal transplants might do the trick. Check out the butyrate blogs and we have some fermentation blogs coming up plus we will keep an eye on the gut field.
Dr. Allison Siebecker, a naturopathic physician in Portland, Oregon has developed a specialty in Small Intestinal Bacterial Overgrowth and founded the SIBO Center of Digestive Health in Portland, Oregon located at the National College of Naturopathic Medicine. There is excellent information at her website http://www.siboinfo.com with information on breath testing, treatment, diets, etc. You can also download lectures given by the leading gastroenterologists and naturopaths researching and treating this condition from the recent SIBO Symposium held in Portland last January. In addition to treatment with Rifaximin Dr. Siebecker and her colleagues have success treating SIBO with Allimed, an extracted, concentrated and stabilized form of allicin found in garlic. The results of the breath test are important to determine the course of treatment. If a patient has high levels of methane gas, Rifaximin needs to be combined with the antibiotic Neomycin or Metronidazole to effectively kill the bacteria. For those with high levels of hydrogen gas, Rifaximin alone is sufficient. Following antibiotic treatment it is critical to take a prokinetic drug to prevent relapse – either Low Dose Naltrexone or Low Dose Erythromycin. It is also important to consume a diet low in carbohydrates that feed the bacteria in the small intestine.
SIBO is common in persons with CFS and FMS and is the cause in my opinion of the gastrointestinal problems in these conditions. Due to low levels of endorphins that stimulate the migrating motor complex and a body that is generally functioning in low gear persons with CFS and FMS are particularly susceptible to developing SIBO. I do not think that SIBO is the root cause of these syndromes however it is a serious complication that should be treated. It turns out that it is not the specific kind of bacteria that a person harbors rather it is the location of the bacteria. In a healthy person bacteria moves down into the large intestine between meals but in SIBO the bacteria sets up camp in the small intestine causing all kinds of problems including the production of bacterial toxins and malabsorption of nutrients. This leads to low levels of amino acids and a state of toxemia. Dr. Mark Pimentel, a pioneer in discovering SIBO as the cause of Irritable Bowel Syndrome found that fibromyalgia patients had hydrogen levels significantly higher than non-fibromyalgia IBS patients and he found a correlation between body pain severity and the level of hydrogen on breath tests.
It personally took me a long time to find out about SIBO. Although I recovered from over 30 years of Chronic Fatigue Syndrome with Oral Systemic Balance (corrected air passage problem and improved cardiovascular fucntion) and LENS neurofeedback ( treated post traumatic brain issues and adrenal fatigue), my digestion was still impaired (bloating, gas, irregular stools and difficulty digesting whole grains, nuts and beans); and I had fibromyalgia muscle pain following exertion. This past winter I found out about SIBO from a naturopathic physician and immediately knew that this was the the missing piece of the puzzle for me in my healing. I went to see a doctor at the SIBO Center in Portland and started antibiotic treatment two months ago (one month of Allimed and 2 weeks of Rifaximin). So far the results have been good. No more gas or bloating and much less muscle pain so that I have been able to resume gardening and practicing the piano on a regular basis. I have not written about SIBO on my blog (www.fibrofriends.typepad.com) yet as I am still in treatment and want to see how my health plays out in the next month or so with prokentic therapy and breath testing. As with the other therapies that contributed to my recovery, treating SIBO is not a quick fix and takes time to completely heal.
That’s great, Darden! The authority on SIBO, Dr. Mark Pimentel of Cedars Sinai UCLA in LA spoke at the conference in Portland and my gastroenterologist attended at my suggestion.
For people in Northern California, my gastroenterologist is willing to see ME/CFS patients if they have gastroenterology symptoms. He doesn’t want his name made public but has told me I can give it out to individuals. I know of one person who went but got no improvement from the Xifaxan. He suggested the Xifaxan originally and is by some fluke able to get my on-going scripts filled. He thinks the insurance company may have made a mistake but we’re not rocking the boat.
Best wishes for continued improvement and full acceptance of what you can’t change to all.
Hi Esther,
I am a Northern CA person with ME/CFS who would love the name of your gastroenterologist. I think I might benefit from Xiaxan.
How do I get his name? Can you email it to me? That’s so fantastic you got so much improvement. I have always believed my gut is what’s causing the bulk of my difficulties.
Thanks,
Sandra
Hi Sandy,
I’m out of the US right now and don’t have use of a phone. You can reach me at siebertesther@gmail.com. Please send me your phone number and I’ll call you when I get back. I hope it works for you too! Best, Esther
Great website – thanks for the link and all the info. I love the less muscle pain – that’s a biggie for me.
It’s Xifaxan, not Xafaxan or Xifaxin. Just saying .. 🙂
sigh…- thanks. It’s cleared up on the website…
I’m not surprise that ME/CFS patients has SIBO like a secondary problem. If we consider that our neurologic system is on an adrenergic( sympathic pathway) boost all the time, it’s a bit normal to have a slow gut transit, bloating, diarrhea….since our digestive organ is working with the other part of the autonomic nervous system: the parasympatic. I think the gastro-intestinal problems that ME and fibro patients have come from this irregularity of the autonomic nervous system: too much sympatic and not enough parasympatic.
Slow bowel transit will lead to surpopulation of bacteria, toxins and arousal to the brain but I think it’s a secondary problem and not the primary cause.
Great article and it can show us that some simple treatments can improve ourselves enough to increase our daily activity level until we can find a way to stop having this irregularity with our autonomic nervous system.
My guess is that you’re probably right Claudine and thanks for pointing out the effects of the ANS on the gut as well. My only question is if the gut can knock out the ANS. My guess is that it probably can but we’ll see.
I believe a certain strain of Candida is a culprit here as well. That may explain why antibiotics aren’t always the whole answer. Perhaps including antifungals with antibiotics is the missing link. Although, the Herx could be hell. RP
Rich,
When you say Herx are you referring to antifungals? I have a fungus in two of my toes. I was on an antifungal for three months and now 8/9 months later I am taking it again. It’s probably not going to be effective but I am trying to avoid having the nails surgically removed. Anyways, I do feel worse on the antifungal and had not considered that I may be herxing. I have been following the gut series but am financially limited. Insurance pays for my antifungal medication. I pay $1.30 for it.
Thanks so much, Cort, for putting this out there and for all you do!
I’d just like to add that I have had no side effects from taking Xifaxan probably because it only works in the gastro system and doesn’t enter the blood stream. I haven’t tried anti-fungals for many years since that was the latest thing. They had no effect on me at that time. But I imagine some of us could have an overgrowth of fungi in the body or gut that would benefit from treatment.
You don’t need to have gastroparesis to have SIBO. You can have it alone. The overgrown bacteria send toxins to the brain that can cause cognitive problems and maybe others. Perhaps it is the gastroparesis that requires my on-going use of Xifaxan and others will be able just use it once or periodically.
This is only one piece of the puzzle but may be the whole answer for some of us. I recently have had a Herpes Virus 1 infection in my eye which was preceded by a couple of months of not feeling very well. It may have been a systemic infection that finally showed itself if my eye where I carry it. I’m on Valtrex now and am feeling very well now which is great cause we’re going to Puerta Vallarta for a destination wedding tomorrow!
This week I complained that my NMH or OI or POTS (whichever it is) getting worse and Dr.
Ravin Agah of Mountain View took my blood pressure first laying down and then immediately after I stood up and said it dropped 20 points. So he referred me to Dr. Karen Friday at Stanford, increased my Florinef or fludrocortisone to 2X a day, added salt pills to my regimen (3-4 grams) and told me to get compression stockings. And he told me to monitor my blood pressure to make sure it doesn’t go too high since I also have high blood pressure. Multiple doctors in the past have taken similar BP readings but now they show something. In the past, many of the doctors I’ve seen have questioned how I could be on high blood pressure meds and florinef which increased water retention and raises BP. Now I’ve learned that you can have both high BP and low BP when standing.
I’ve wanted to get the news out about Xifaxan for more than two years in the hope that it will help more people. As they say in 12 Step programs, don’t give up before the miracle!
Interesting that the herpes virus infection coincided with the orthostatic problems again. I wonder if it’s hitting your autonomic nervous system?
Forgive me for the ignorant question, but is the herpes virus the same thing as HPV ? thanks for your help.
There is a family of Herpes viruses including Herpes Simplex 1 and Epstein-Barr which I have. I’m don’t know if HPV is a herpes virus or not. If you google it, you should be able to find out. Also check out herpes viruses to find a complete list. Good question!
Hi Cort,
I’ve had the orthostatic problems for years and have used florinef for almost 20 years since the study out of Johns Hopkins. It seems to get worse in the last 5 months. I hadn’t thought it was connected to to the Herpes outbreak but you may be right.feeling sick
My understanding of the EB virus was after you have been ill with Infectious Mononucleosis this titre will show in your blood, in varying levels. I did not know it disappeared?? Are there documented medical studies to support this and if so can you tell me which magazine to check for them? I would like to investigate my options with my GP who took over for my specialist.
My sincere appreciation in advance.
B.J.Moore
I really don’t know about this. I just know that while my titers showed an infection my mono spot test was negative. Hope this helps.
I took Xifaxan for SIBO and I hadn’t felt that good in 28 years, however the cost of it was too high to continue it so back to all the issues and I am getting worse with age.
Hang on for more blogs on ways to fix SIBO. (I wonder when Xifaxan is going generic?)
I’m sorry to hear that. We need to get it declared for use for ME/CFS in time if research indicates its efficacy.
Manufacturer: SALIX PHARMS
Approval date: May 25, 2004
Strength(s): 200MG [RLD]
Manufacturer: SALIX PHARMS
Approval date: March 24, 2010
Strength(s): 550MG [RLD]
These dates are when the drugs were approved. Does anyone know how long it takes before drugs are off patent? I use 3 of the 200 mg pills 3X day. It’s 10 years since the 200mg pills were first approved.
Drug patent usually good for 17 years. But the FDA approval and the patent don’t have the same start date. And there are tricks to avoid competition despite the end of patent.
I was lucky enough to be able to afford Xifaxan, however even with many doses, my gut issues were still severe and no relief in sight. That led me to research and I found website http://www.culturedfoodlife.com. Learning that by eating/drinking homemade Kefir, Kombucha and cultured vegetables daily, the gut can heal. So after trying regime, my gut is totally healed. I recently had colonoscopy and cat scan (I was cramping and needed stomach cancer ruled out since my mom died from it). Doctor was blown away with how clean tests were. Not even a polyp showed up). Found out cramping was from scar tissue from previous hysterectomy and with deep tissue massage, cramps disappeared. Anyway, getting back to gut- making kefir, kombucha and fermented veges is not hard and certainly affordable. I haven’t had this much energy in 30 yrs.
Wow Audrey so cool. Did you have CFS/Fibro symptoms as well that were cured by cultured food? Or just your gut issues?
I know what Keifer is, but what is kombucha and where can I find it?
thanks for your help.
Several years ago I was a patient of Dr. Bell’s who had me take doxycycline for several months, to no avail. Maybe this antibiotic is killing the right germ. I’ve had some gut issues but nothing as major as this. We’ll see in time what happens. Good luck.
What SIBO test did she use?
Hi Joy,
I had a complete gastro work up and at first nothing showed. Only later was the gastroparesis diagnosed. I had been having disgusting sulfur burps however. My doctor, bless him, decided to try Xifaxan on me since it was safe and had virtually no side effects. And that’s how we happened upon this.
Meanwhile, Dr. Andreas Kogelnik at Open Medicine Clinic in Mountain View, CA, ME/CFS doctor had me email him regularly with reports on my progress. He is currently researching ME/CFS and SIBO using breath testing that I believe checks for gases that is used to diagnose SIBO.
Hope this helps, Esther
Great post Cort and Esther:
I attended the sibo conference at the NCNM via the web, and it was AMAZING. It is my understanding that the videos will be available for some time still. Dr. Weinstock was one of the speakers as well as Dr. Pimentel, Dr. Siebecker and Dr. Lewis. Dr. Weinstock did a small self funded study with Rosacea patients (and RLS), and has been seeing a cure with the sibo treatment. He showed before and after pictures that were impressive. Dr. Weinstock talked about one lady who he could not seem to help, and sent her to Dr. Pimentel. He found out she had EDS (I was diagnosed with this), and he was able to help her. By the way EDS sounds a whole lot like cfs/adrenal issues. Dr. Weinstock’s web site (he may have videos) http://www.gidoctor.net/
I did not go to the NCNM clinic in Portland, but did Skype appointments. I did the Allicin for 2 months and the Neem. I had some strange burning of my skin about a week after starting the allicin, but I thought it was Candida (may still be), but my bowels were really great all of the time. I also had some wicked die off in the beginning, but also have a Lyme dx. Unfortunately for me the burning did not stop, but has continued to escalate, and may be a sulfur sensitivity. I just stopped the Allicin about a week and half ago, and think I may give the Xifaxan a try. The overall improvements I’ve seen are malabsorption is much better, and insulin resistance has improved. I’m doing a low histamine diet right now and have added DAO supplements (something is helping). I wonder with cf/me patients taking cocktails of drugs, how much damage this does to the gut? There is a new book out on autoimmune disease by the Paleomom.com, and she has a great deal of studies on the damage antidepressants and acid blockers have on the brush borders in the gut.
During the course of taking the above protocol, I had only a few days where I experienced any diarrhea (Yeah), but I have not started on a LDN as a prokinetic yet, as I struggle with sleep. However, the doctors are using other prokinetics as well. They are using low doses of antibiotics, I think erythromycin was was mentioned by Dr. Pimentel. Dr. Lewis is using different nutraceuticals (berberine, Allicin, Neem and peppermint oil). With some patients he even rotates these to keep sibo at bay.
I would also like to add one more thing. I had become suspicious of sibo and had arranged to have the testing done in my home city. I spent several thousand dollars, and a great deal of energy, to later find out from the NCNM that you can get the test from them for under $200.00, or buy it online from several sources. I also don’t know if I would do the test again, apart from knowing whether you have methane dominant or hydrogen dominant sibo. This will determine the therapy, but if you have doctor who will prescribe the medications, then I probably might forgo the testing.
http://www.ncnm.edu/alumni-ce/continuing-education/_ce-archives/sibo-conference/sibo-conference-bios-2013.php.
Hi Debbie,
One word literally “jumped off the screen” in your post — Rosacea. Does Doctor Weinstock link rosacea with sibo? Just wondering, because I was diagnosed with rosacea at least 20 years ago. It has been quite stable until fairly recently. But the redness in my face has definitely increased at the same time as my gut issues have worsened. Coincidence? Based on your post, I wonder.
Sounds like Cort will be covering it later, but for those asking about which herbal preparations they used, here it is, copied from the article:
“Treatment:
Subjects with newly diagnosed SIBO by LBT were given two open-label treatment choices based upon individualized treatment preference; either two 200 mg rifaximin tablets three times daily (TID) or 2 capsules twice daily of the following commercial herbal preparations; Dysbiocide and FC Cidal (Biotics Research Laboratories, Rosenberg, Texas) or Candibactin-AR and Candibactin-BR (Metagenics, Inc, Aliso Viejo, California) for 4 consecutive weeks immediately followed by a repeat LBT.”
From my quick overview, it looks like they gave two different herbal protocols (either from Biotics Research or Metagenics) but do not differentiate those in the results? That is unfortunate.
Thanks MDME 🙂
It is important to note that Dr. Allison Siebecker is not an MD but I think a nurtitionist traineded at the NCNM. In the open session at the conference, a number of students there spoke and I felt this school might not be a scientific one but rather one that attempts to apply anecdotal information in an effort to help. I’m not sure but I had an uneasy feeling. My MD went to hear Dr. Pimentel and also was unsure about what they do there. Having communicated with Dr. Siebecker, I do feel that whatever methods and training offered there, their intentions are to help people get well.
Could SIBO be the root cause of my chronic dry eye disease?
My cfs started 25 years ago with gut problems and after exposure to photography chemicals and working at a sign shop. I also had measle vaccination a year before. Before this time i had 2 cases of gastritis with erosions successfully treated with meds but this time it didn’t. 3 years ago i had a severe case of candida in esophagus. Since it started 25 years ago my spine and neck have slowly gotten worse. Neck with arthritis and bone spurs. Spine i am not sure. I am on strict anti-fungal diet. I wonder if this antibiotic would made candida worse?
What a great question. I don’t know…I hope somebody does. I don’t know if Xafaxin would effect the esophagous or not.
I had Esophagitis after getting first vertigo then got the horrible sore throat. Took fluconozole for 30 days 10 days ?. Never helped. That was feb 2014.
Finally it got better on its on after few months.
I’ve had facial numbness ever since after getting facial spasms. I’m thinking it was a viral esophagitis. Not Candida. !!
The EBV. HERPES VIRUS. Had second April 2014? scope when I still had the bad sore throat there was no Candida ??♀️
No lesions but yet horrible sore throat
Only the left side. Been ill ever since
That was 6 years ago. Chronic pain etc
So just recently dr it prescribed rifaximin and neomycin. Hope it helps my pain. Ins will not cover it since it’s for SIBO C. So dr sent script to pharmacy in Canada. They sent it to India. And it going to cost $75 instead of $2100. ? it helps my pain. My bones are also in bad shape because of this
Also a dr Leonard Weinstock used this protocol I just read. For POTS. SIBO ETC.
I am pursuing the SIBO connection as far as it relates to my Gulf War Illness that affects almost half of the troops sent to the Persian Gulf in 1990-92 I have been chronically ill from fatigue among other symptoms for 5 years. I am hoping to try Xifaxin soon to gain insight to my theory that GWI is gut related. During those years in anticipating the effects of chemical and biological agents a number of experimental vaccines were given to us like lab animals, and a lot of antibiotics as well. Not sure if anyone else reading this is a past service member and maybe hadn’t thought of the connection yet.
After years of being sick and tired I have been diagnosed with SIBO after the breath test came back positive. I start antibiotics tomorrow. Hoping to feel like me again and I’m glad I’m able to say I’m not lazy to certain people. I really truly had zero energy and it’s been a struggle just to try and do normal things like grocery shopping or driving anywhere.
Good luck Kami!
I kn this is an old post but my question is if treating sibo helped your reactivated ebv?
Thank U
Lori
Rifaximin is NOT a “broad spectrum” antibiotic!!!
It’s more targeted.
Right, specifically targeted with a broad spectrum of activity
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4737517/
In 2000 I contracted Ross River Fever and lost two years. After one year I researched and self diagnosed CFS. Also found mention of Kombucha and eventually obtained a culture, brewed and drank. At the end of the two lost years the RRF/CFS just faded away. Since then have wondered how big a part the gut plays. Anyway the improvement in my health, by this time retired, allowed my wife and I to move to a small (one and a half acre) rural property. We lived there for about 14 years and I worked many hours on most days on a landscaped garden with vegetables, many fruit trees and nut trees. Then just after selling up I was the not at fault driver in a fatal MVA in which a young girl died. Only minor injury was sustained, but the physical/mental trauma initiated the CFS again. Started kombucha again but sadly little or no response this time and at present I am prevented from brewing due to the familiar aches, pains and muscle weakness. Very annoying because I really need something to help (don’t we all?) to reduce my intensified problems. In spite of lack of success this time, I still feel that the gut is misunderstood and not treated except for some of those antibiotic treatments written about above. Personally I would prefer a natural remedy to long medical treatments.