While we think of fibromyalgia as a condition involving painful muscles and joints, the majority also have abdominal complaints, most commonly irritable bowel syndrome (IBS) symptoms: bloating, discomfort, diarrhea, urgency, and also constipation. Fatigue, moodiness, depression, disrupted sleep, mind “fog” and forgetfulness, heightened pain perception are also common.
Small intestinal bacterial overgrowth, SIBO, on the other hand represents a situation in which microorganisms, normally confined to the colon proliferate up along the entire length of the ileum, jejunum, duodenum, even stomach, a full-length infection of the intestinal tract. Microbial species responsible for SIBO are largely pathogenic Enterobacteriaceae such as E. coli. SIBO shares the same symptoms as IBS with added fat malabsorption (see fat droplets in the toilet), new food intolerances, skin rashes, and long-term potential for diverticular disease and colon cancer. Testing for hydrogen release through breath testing is the most commonly used test to diagnose SIBO.
A study published by Dr. Mark Pimentel while at Cedars-Sinai Medical Center in Los Angeles demonstrated that, while 20% of control participants showed a positive H2 test for SIBO (!!), 84% of those with IBS tested positive. Of the participants with fibromyalgia, however, 100% tested positive and were positive to a severe degree:
I have seen fibromyalgia symptoms partially improve with wheat/grain elimination, vitamin D restoration, and basic efforts to cultivate bowel flora. But now I am witnessing complete relief from fibromyalgia with management of SIBO, as Dr. Pimentel’s data would suggest. I don’t know what percentage of people with fibromyalgia will obtain complete relief by managing their SIBO. But, even if not 100% effective, people with SIBO still need to have this condition corrected.
If management of SIBO is the answer to fibromyalgia—and I believe it is—it will help people get off the horrible drugs typically prescribed for this condition like Cymbalta and Lyrica. Cymbalta, for instance, is commonly associated with mind “fog,” anger, suicidal thoughts, and potential for liver damage. Lyrica is associated with flagrant weight gain, impaired memory, sleepiness, and blurred vision. Management of SIBO, in comparison, can be accomplished with little cost and is associated with relief from IBS symptoms, skin rashes, improved nutrient absorption, reduced body-wide inflammation, and reduced long-term potential for diverticular disease and colon cancer, in addition to potential fibromyalgia relief.
Most doctors remain unaware of the widespread prevalence of SIBO that I believe is as common as type 2 diabetes and overweight/obesity. Most are also unaware of the relationship of SIBO with fibromyalgia, as well as IBS. In the Undoctored Inner Circle, we have therefore been helping people identify, then manage their SIBO with success without their doctors, true to our Undoctored philosophy. And I believe that, by adding some new strategies, we are beginning to have an impact on recurrences (recurrent SIBO is a perennial problem) with less recurrences over time.
Where can I get tested for this and does insurance cover the cost? If not, what is the cost? Thank you.
Emilie wrote: «Where can I get tested for this…»
You can probably do it on your own, if it comes to that. I’m not super well-informed on SIBO, but it looks like the mots informative test presently is a hydrogen (H2) lactulose breath test, possibly one like this LifeExtension offering (LC100063). This might be the same as the test under CPT code 91065, but LifeExtension doesn’t provide CPT codes. Similar kits appear to be available from other providers, some priced lower.
Assuming you even have a care provider who knows what SIBO is, and suspects it in your case — if an H2 test isn’t on the list of options, you may need a new care provider. Consensus gastroenterologists are more likely to propose endoscopy, which might help with their BMW payment, and be covered by insurance, but it literally does not look deep enough to be fully diagnostic (entirely apart from them probably not having any effective treatment, or treatment free of serious side effect risk).
re: «…and does insurance cover the cost? If not, what is the cost?»
Your care provider can usually clarify that. Plans vary. If you have a medical set-aside account, you probably can use it to pay for a test you need to order on your own.
Just getting a positive test result, however, is merely a step in the process. What to do next, how to follow-up, and how to handle the non-trivial risk of recurrence, are topics covered in the SIBO Protocol on the subscription site (mentioned by Dr.D. above). That protocol is still in development, and too long to post here in any case. The protocol also presumes that someone is also following the core Undoctored program.
A smart phone accessory for measuring breath H2 is supposed to come to market this year. It won’t initially be approved for SIBO testing, but may prove valuable and economical in casual monitoring. Expect reports when it appears, and if it looks useful.
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I am almost certain that this is what I had. I suffered for 3 1/2 years with the chronic pain and brain fog.
I started following a ketogenic diet on September 3, 2015 and within two weeks the pain was gone, inflammation had dissipated, I was able to stop medication. My body purged for a good 2 weeks, constant liquid diarrhea. I started taking a good probiotic to help balance my gut biome and my body shopped purging.
I still follow a ketogenic way of eating but my carb I take is more liberal. I run between 20-40 kilometre a week now. I stared running a few weeks after the pain left me. My longest race was this spring. 30k. I love my life again.
Diane wrote: «I started following a ketogenic diet on September 3, 2015 and within two weeks the pain was gone,…»
KDs are not always grain-aware, but with a typical target of 20 grams or less net carb per day, they have to at least be inherently very low grain. That, plus the nil simple saccharides, would be expected to stress the adverse gut microbes, and support gut healing where needed.
re: «I started taking a good probiotic to help balance my gut biome and my body shopped purging.»
What are you doing for prebiotic fiber in the diet? One challenge with chronic keto is that people tend to minimize consumption of all carbs, including the prebiotic/soluble/resistant carbs that are essential for healthy gut flora (and are either neutral or supportive in ketosis).
re: «I still follow a ketogenic way of eating but my carb I take is more liberal.»
I don’t wish to appear argumentative, but that’s almost a contradiction in terms. In any event, look into the Undoctored program, in which ketosis is considered an optional tool for temporary use. You should be able to retain your fabulous results, on a diet not so restrictive.
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There appears to be a lot of overlap between fibromyalgia (FM), Chronic Fatigue Syndrome (CFS) and Lyme Disease. If you compare symptoms there is an almost identical list among all 3, but because the rheumatologists don’t talk to the infectious diseases docs that gets ignored. When I came down with CFS 20+ years ago I scoured libraries and the Internet for information since I wasn’t getting any from the doctors. The word among CFS patients on the bulletin boards was that if the symptom you complained about most to your primary care doctor was muscle and joint pain (and all CFS patients have those) you’d wind up with a referral to a a rheumatologist and a diagnosis of FM. But the rheumatologists don’t actually DO anything to cure you, they just claim it’s incurable and prescribe painkillers and palliative care.
After struggling with CFS for 3-4 years I found out about Lyme and managed to get referred to an ID specialist who was trying to prove that Lyme existed here in Aus. When he put me on long-term antibiotics my symptoms slowly resolved until I was 95+% recovered. Yet if I’d been diagnosed with FM I’d have received no treatment at all and would still be as bad off as before. (However, because I went for 4 years undiagnosed and untreated I now have “chronic Lyme” – on doxycycline the symptoms slowly resolve over weeks but after stopping the doxy they slowly reappear over further weeks. But that’s another story)
I’m not saying that all CFS/FM cases are really Lyme or that SIBO is not involved, but I do believe that a percentage of them, possibly even a majority, are undiagnosed Lyme. And while dropping grains etc might cure SIBO I can’t see it eliminating the Lyme borreliosis from your bloodstream.
Incidentally, GI disorders are universal among CFS/FM/Lyme sufferers, we just don’t talk about them coz it’s embarrassing. Having listened at patient support groups to numerous people describing how they got ill I can tell you that their story parallels mine. A brief “flu-like illness” (but without the respiratory symptoms) followed by persistent fatigue and the gradual slide into other symptoms including GI distress. That sounds to me like an infection kickstarting SIBO somehow rather than the reverse.
Stuart wrote: «There appears to be a lot of overlap between fibromyalgia (FM), Chronic Fatigue Syndrome (CFS) and Lyme Disease.»
There’s been a fair amount of discussion of Lyme on the subscription forum (UIC), but it has not yet advanced to the point where there’s a Protocol (there is one for SIBO generally, in active development).
re: «But the rheumatologists don’t actually DO anything to cure you, they just claim it’s incurable and prescribe painkillers and palliative care.»
Lyme has been with us long before Lyme Connecticut was founded (Ötzi the Iceman had it 5000 years ago). With the increasing spread and incidence of Lyme, having reliable prompt diagnosis, effective treatment, and effect mitigation of treatment side effects, are urgent problems. As you’ve experienced, Standard of Care is largely inept on Lyme (and oblivious to SIBO), and the dissident doctors don’t agree with each other on Lyme.
re: «When he put me on long-term antibiotics my symptoms slowly resolved until I was 95+% recovered.»
One of the MDs on the UIC forum has said: “It seems like most of the bad effects are from the months of antibiotics, not the Lyme itself.”
re: «And while dropping grains etc might cure SIBO I can’t see it eliminating the Lyme borreliosis from your bloodstream. … That sounds to me like an infection kickstarting SIBO somehow rather than the reverse.»
The UIC SIBO Protocol is a lot more than just dropping grains. But, whatever treatment is undertaken for Lyme, the patient probably needs to double-down on microbiome support/recovery, because almost any antimicrobial regimen is going to clobber the gut flora.
Thanks for your report.
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Bob Niland wrote:
“One of the MDs on the UIC forum has said: “It seems like most of the bad effects are from the months of antibiotics, not the Lyme itself.””
I don’t know which planet this doc is on, but I can tell you from personal experience that the bad effects of Lyme are far worse than any side effects of the antibiotics. I haven’t met many Lyme patients because the official line from the ID docs here is that there is no Lyme in Australia. This is despite the facts that Lyme has been detected in Asia, is known to occur in birds, and numerous bird species migrate to Aus from SE Asia, Siberia and even Alaska. My experience is with CFS patients, who have the same symptoms and as I said before probably include numerous undiagnosed Lyme sufferers.
Some people I met had been fired for “malingering”, often as a result of the company doctor certifying that “there’s nothing wrong with him/her”. Others had spent all their savings in trying various alternative cures because mainstream docs provided no help. One woman was rejected by her family because “it’s been six months now, you can’t still be sick.” Another had to give up her career as a Naval officer. One general practitioner had to give up medicine due to brain fog. Teenagers were struggling to keep up at school. Most of the rest of us were having difficulty keeping a roof over our heads. You hear about people who are too ill to get out of bed, but they don’t attend meetings so I never met any.
Actually that doc’s response doesn’t surprise me because I’ve experienced the dismissive attitude of docs to CFS patients. I’ve been told “you’re just a little run down, take a holiday”. This when I was struggling to pay my bills! When you wake up exhausted after 12 hours sleep that’s not “just a little run down”.
Sorry about the rant, but it infuriates me that docs prattle on about the dangers of developing antibiotic resistance while blithely ignoring the very real problems their patients incur. Did your doc specify the “bad effects of the antibiotics” he was referring to?
I totally agree that you need to replenish your intestinal bacteria when taking antibiotics. That’s why I’m consuming kefir and kombucha and I’m looking at fermenting vegetables and culturing yogurt from the reuteri and the LifeSpace probiotics.
Stuart wrote: «I don’t know which planet this doc is on, but I can tell you from personal experience that the bad effects of Lyme are far worse than any side effects of the antibiotics.»
In many cases, I’m sure that’s true. My take from the remark (for which there is really no further context, other than that as a UIC member, this is not a consensus doc), is that even for cases where the Lyme is caught quickly, and successfully treated with ABs, the ABs themselves can trigger a whole new cascade of problems (such as SIBO) with symptoms more severe than the originally presenting ailment.
re: «I haven’t met many Lyme patients because the official line from the ID docs here is that there is no Lyme in Australia.»
Is the antibody test even available there? People do travel. The AB test, however, seems not considered dispositive even in long-established cases. We really need a slam-dunk test for this infection. At my residence, it’s hard to just walk from the house to the barn without picking up a tick (one on the door handle last week!). I’m not a big fan of vaccines, but a vax for Lyme I would seriously consider (and we don’t have that either — actually we had it, lost it thanks to lawyers, and may or may not get another soon). Your dog can get vaccinated here, but you can’t.
re: «…docs prattle on about the dangers of developing antibiotic resistance…»
That’s never been the concern with antibiotics on the forum, and as I suspect you’ll agree, is truly irrelevant for Lyme, as it’s not spread person-to-person, and the natural vector doesn’t lend itself to breeding resistance.
re: «I totally agree that you need to replenish your intestinal bacteria when taking antibiotics.»
Bingo. The antibiotic era that began in the early 20th century was hailed as a modern miracle (and it indeed was, for a number of catastrophic public health problems, including some nasty STDs). But it came at some unadvertised costs, only one of which is resistance. We need to treat any unavoidable courses of ABs as potentially toxic events in their own right. Until autologous FMT becomes an option, extra effort on the probiotics appears to be the most useful recourse. Consume at a time well away from the ABs.
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