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.”
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.
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.
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.
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
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.”
“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.”
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.
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’s 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
Find Health Rising Useful? Please Donate!
Like the blog? Make sure you don’t miss the latest on ME/CFS and FM treatment and research news by registering for our free ME/CFS and Fibromyalgia blog here.
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here