High levels of rare gut bacteria may be linked to restless legs syndrome
by American Academy of Sleep Medicine
"We've observed extremely high rates of small intestinal bacterial overgrowth in the RLS group," said lead author Daniel Jin Blum, Ph.D., D.B.S.M., an adjunct clinical instructor at Stanford Center for Sleep Sciences and Medicine in Redwood City, California. "Exploring the relationship between RLS and gut microbial health has the potential to open novel avenues for possible detection, prevention and treatment for RLS and other sleep disorders."
The question always remains: is this chicken or egg? That is, does the gut bacterial overgrowth cause RLS? Or does RLS cause gut bacterial overgrowth. If the latter, treating the bacterial overgrowth will not help. We’ll learn in time, hopefully. But definitely a very very interesting line of research! Thanks Goldie.
If so, then all iron would be low. But people with RLS are generally not anaemic. That doesn’t mean that difficulty to absorb iron isn’t part of te problem. A syndrome like RLS has rarely a simple cause.
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That would seem to contradict the studies that say it is the storing of Iron in our brains that is the problem not the absorption. It is stated that our stores are depleted come evening hence the increase/commencement of symptoms.
Interesting, I've joolsg's post waiting to be read, ( will some one please invent a 43 and a half hour day so I can get a couple of hours sleep and some things done), so will investigate further, if the testing isn't too dear I might just try it out see what it says.
Hi Goldy, I've had the sibo breath test done twice. First time they just checked for excess hydrogen gas in breath. Second time they checked for methane as well because some of these intestinal bacteria give off methane. Now there is a third gas that they will be testing for but it is in the works and not due to come out until end of year or next. The gas is hydrogen sulfide. I was negative both times. The conclusion is that people with overgrowths of hydrogen producing bacteria or hydrogen sulfide producing bacteria will have diarrhea while those with overgrowth of methane producing bacteria will have constipation. I believe that fatigue and bloating are a hallmark of all these overgrowths. Now they believe that there is something called SIFO. Small intestine fungal overgrowth. I don't know how they test for that but I have had tests for candida overgrowth and that's done via a blood test that checks for candida antibodies. Normal is 0 to .9. First time I was tested I was 3.2. One of the higher values my doctor had ever seen. I was very ill. A no sugar diet and Nystatin took care of that. It is a lifelong way of life. I'm ok with it. I consistently test at .9 these days and will occasionally do a regimen of nystatin for good measure. My RLS seemed unaffected by the candida overgrowth even at 3.2. My RLS was mild and intermittent until age 50. But even in my 30s and 40s things like acid blockers or antihistamines or melatonin made me want to crawl up the walls and sometimes I just seemed to get it out of nowhere. Time has been my worst enemy in terms of RLS. Supposedly our dopamine receptors shrink with age, everyone's does. We can't afford that shrinkage whereas the rest of the world can it seems. RLS is essentially a nightly thing these days, worse on some than others. If I take benedryl during the day then I will have RLS during the day otherwise RLS is strictly a night time thing for me. If SIBO was the cause of someone's RLS and not the dopamine transport system then shouldn't they have RLS all day long? But I can see something like SIBO making RLS worse just like numerous other things. Fortunately, the iron bisglycinate continues to work night after night, but only for the night. I have accepted the fact that my small and few dopamine receptors are at the root of my RLS and that I have to treat them gingerly and not do things to aggravate them or antagonize what little dopamine they produce. What aggravates my RLS I believe is that night time drop in the free, unbound iron in my blood. I read that mother nature doesn't like heavy metals (ie iron) just floating around in our blood stream as we prepare to sleep. So I guess our bodies work to bind it up and store it away as the day goes on. When I take some iron in the evening my brain continues to get iron - at least before my body can bind it up and store it away. Wish that some of that storage would take place in my brain :(.
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By the way serum iron (unbound) is different from serum ferritin (bound iron protein). As far as I can tell serum ferritin does NOT fluctuate during the day. And the drop in serum iron toward evening can be anywhere from 30% to 50%. And the percent of the serum iron drop in the evening may be influenced by the level of ferritin. I can't understand which way it works though - meaning the higher the ferritin the less of a drop or vice versa. But in any case, this may explain why iron infusions help? So confusing.
It's possible that in some cases that SIBO might be a factor in RLS. The body does prioritise its use of nutrients if they are lacking, so if there is a failure of iron absorption it won't necessarily lead to iron deficiency anaemia before or at the same time it leads to Brain Iron Deficiency which is the significant factor in RLS for SOME people.
The study referred to is promising in some ways in that for 7 people who had RLS, they also had SIBO. That's a good "correlation", in fact it's suspiciously good.
Needs a lot more study before being a confident correlation, never mind demonstrating a causal relationship between RLS and SIBO.
Without reading more detail of the sampling method used in the study, it's impossible to draw any conclusion about the representativeness of the sample, hence the validity of the results. However the sample size doesn't give it any real credibility at all.
This reminds me of a theory about criminality in the mid 20th century. The theory suggested that criminality was associated with having an extra Y chromosome. That is, instead of having the usual number of chromosomes two of them being the "sex" chromosomes, one X and one Y criminals have an additional chromosome, i.e. two Y. Hence known as XYY.
Ignoring the fact that some criminals are women, it was found that not all criminals had XYY and not all men with XYY were criminals.
Conclusion - if 7 people with RLS have SIBO, it may be an artefact of how they were picked. You'd have to show that statistically more people that have RLS also have SIBO than people who have RLS but don't have SIBO and conversely that people who don't have RLS have significantly less SIBO.
In other words, I wouldn't be bothered being tested for SIBO unless you suspected you had signs of SIBO, not because you have RLS.
not yet anyway!
Incidentally the XYY theory was put forward by someone who's lasting legacy seems to be a particular personality "inventory" which can measure what "type" of person you are. This apparently reflects a rather deterministic and mechanistic view of humanity and ignores our ability to be creative, spontaneous, adaptive, inspirational, compassionate, self aware etc. A personality theory then that is probably very applicable, it might appear to some politicians.
My Dr has been treating me for Gut issues, by following Dr Cabral protocol, that is found in his book “The Rain Barrel Effect.” It is a slow process that requires a lot of self discipline! Also, check out this study on RLS and Sleep Problems!Gerd! Good Luck!
That’s really interesting, look forward to hearing more on the gut!
Meanwhile has anyone tried CBD oil whilst on tablets? I am thinking about trying this after a friend says she is using it, admittedly for another problem, but having read on this site that others are using it. I take Pregabalin and Tramadol, which has given me a huge improvement but would still like to take less medication with maybe an even better result.
I guess I would need to try the oil and then if successful cut down gradually on the tablets?
Has anyone tried this? I would love to hear from you.
The SIBO theory would explain why my drinking fresh celery juice 3 or 4 mornings a week (on an empty stomach---then nothing else to eat or drink for 20 to 30 minutes) seems to have helped the RLS somewhat. The theory is that celery juice helps to kill SIBO. However, at the same time, I'm also tapering down on sertraline, (down to 37.5 mg each morning-----doing the taper V E R Y slowly!) so it's hard to know which is helping. Because of the iron deficiency theory, I'm also using "gentle iron" capsules a few mornings a week. And I've tried drinking a homemade juice with a LOT of fresh spinach (for the iron) plus a few carrots and 1 apple. All of these things might help. I can say that when I exercise too late in the day (like last night, when my husband and I took a long walk), nothing I do seems to help. That's when one half of a 325/5 mg. hydrocodone helps me calm my legs enough to get some sleep.
Hi Restless, why not try switching the Gentle Iron to an hour before bed on an empty stomach? That's what I do. Works for me and so far I need no other medications for my RLS.
Ehh, don't let it stop you. If you really want to have some fun, let the RLS kick in and then take the two capsules of iron. Then wait about an hour and see if your RLS goes. Then you will be an official member of the "ferrous bisglycinate provides immediate temporary relief from RLS club."
Hey there, was just wondering how you were doing with the iron at night thing? I see quite a few posts this past week about iron and ferritin. Our little experiment might be of interest to others.
Wow, wow, wait a minute. let's think about that. So you aggravate your RLS/dopamine receptors with a relatively short acting substance(s) early evening and then you're home free in bed. In theory, things that antagonize your dopamine receptors such as benedryl (and for you coffee and wine), anti-depressants, intermittent fasting, uridine, anaerobic exercise should build them up. Whereas dopamine agonists like Mirapex beat them down. I would think you would need to do this consistently over-time to build up your receptors and see a difference in the RLS. But what you're doing is a quick short pummeling which provides relief for the night. Absolutely, why not, I love it.
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It's really amazing what a difference a few molecules or a few hours can make with regard to our RLS/dopamine receptors. Like I said before, it's like our receptors are always on the edge of sputtering out on us. One small move can provoke an attack and one small move can provide relief for the night. But like any condition, it has degrees and someone with level 10 RLS is less likely to benefit from the things we have discussed.
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Debbie Abrams is fundraising for Restless Legs Syndrome-UK/Ekbom Syndrome Association from 3 May 2023 – 9 June 2023 
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