Sibo and RLS: Apparently, there is a... - Restless Legs Syn...

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Sibo and RLS

Zurp111 profile image
33 Replies

Apparently, there is a link between sibo and RLS.

Some studies show that people with RLS often have SIBO as well.

If we manage SIBO maybe RLS would be fading?

As anyone has an idea about this?

(Sibo = small intestinal bacteria overgrowth)

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Zurp111 profile image
Zurp111
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33 Replies
Elffindoe profile image
Elffindoe

The connection is inflammation.

The presence of inflammation can worsen RLS.

This may be partly because inflammation can interfere with iron metabolism and SIBO may lead to poor iron absorption from the intestines.

Low iron levels can worsen RLS and Brain Iron Deficiency is the main cause of RLS.

There is a further problem with inflammation in that it can raise serum ferritin levels. This is usually used as an indicator of the need for iron therapy in people with RLS, i.e. if ferritin is below 75, start on iron therapy.

However, with inflammation ferritin can be much higher, so the 75 criteria isn't valid.

Treating the SIBO should, eventually, lead to an improvement in RLS, but iron therapy may be needed as well.

Unfortunately if iron absorption is poor, then oral iron supplementation might not help.

Zurp111 profile image
Zurp111 in reply toElffindoe

Thank you Elffindoe for your answer.Of course I'm on iron therapy but no sign of improvement so far...

Will try to resolve SIBO and gut inflammation first.

Very difficult to find a doctor in Belgium who knows about SIBO...

And normal gastrologist didn't help

😫😲

Elffindoe profile image
Elffindoe in reply toZurp111

Sorry I klnow practically nothing about SIBO.

Butterflysun1 profile image
Butterflysun1 in reply toElffindoe

How do we know for certain that inflammation is involved. Is it a theory or does it have clear evidence?And what is meant by ‘inflammation’ in these circumstances? Obviously in the inflammatory diseases it is clear what it is such as the inflammatory bowel diseases & arthritis conditions.

But there is a lot written about inflammation in general but how is it known, what are the scientific facts etc.

I realise that ferritin can be raised in proper inflammation which does not actuality reflect iron status but I’d like to know more about this inflammation in general. What causes it, where does it come from?

Elffindoe profile image
Elffindoe in reply toButterflysun1

Some good questions.

I'm afraid that the answers are going to be very complicated and I don't have a suficiently detailed knowledge of inflammation to give any adequate answers.

I do know that inflammation is part of the body's immune system and healing.

The aim of inflammation is to dispose of any material which may be considered "foreign". It does this by partly increasing the numbers of particular white blood cells, some of which digest foreign material and some which produce antibodies.

Inflammation also includes the process by which white blood cells and other substances are directed towards where the foreign material is. It does this by increasing the blood supply to the area by dilating blood vessels.

Thus classic external signs of acute inflammation are

Redness - this is due to the increased blood supply

Swelling - this is due to fluid being infused into the area carrying anti-inflammatory agents (e.g. white blood cells).

Pain - this is partly due to pressure on nerves or inflammatory chemicals.

Heat - due to the increased blood supply

Loss of function - e.g. due to swelling or other factors.

Inflammation can naturlly occur internally i which case it isn't observable, but pain and loss of function might be observed. It can occur in any body tissue, includuing nerve cells.

Chronic inflammation however isn't that obvious, i.e. not as severe but as the name implies it can last a long time.

It can also be referred to as sub-clinical meaning no noticeable signs. It can however be detecetd by tests for particular inflammatory chemicals.

There are many causes of inflammation e.g.

Foreign objects entering through breaksin the skin

Bacteria

Chemicals or radiation

auto-immunity where the body detect parts of itself as being foreign.

You can read this in any book on human antomy and physiology, or go online.

E.g.

ncbi.nlm.nih.gov/books/NBK2...

There is quite a bit of evidence of the association between inflammation and RLS, a 3 minute search came up with the following

link.springer.com/article/1...

pubmed.ncbi.nlm.nih.gov/222...

chriskresser.com/4-little-k...

Causes of inflammation also include such conditions as SIBO, IBS, crohns disease ulcerative colitis and food sensitivities such as non coeliac gluten sensitivity or lactose sensitivity.

The latter two may be sub-clincial, i.e. you may not realise you have them.

The loss of function aspect of intestinal inflammation can lead to all sorts of problems including the poor absorption of nutrients e.g. iron, vitamins and other minerals.

Inflammation also affects iron metabolism more generally

E.g.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Sugar and excess carbohydrate in the diet are also casues of inmflammation generally.

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/169...

medicalnewstoday.com/articl...

and so on.

I hope this goes in part towards answering your query.

Zurp111 profile image
Zurp111 in reply toElffindoe

ELffindoe, you are great! Thank you for your research!! It looks like a way to go for!

For a lot of us I imagine

have a nice day!

MicksWife profile image
MicksWife

I suffer from Crohns Disease, Rheumatoid arthritis, and RLS. I read somewhere that inflammation anywhere in the body can induce RLS.

Elffindoe profile image
Elffindoe in reply toMicksWife

Read my comment above for further information.

Your inflammatory conditions can worsen and anti-inflammatory agents, e.g. steroids can help reduce RLS symptoms.

Steroids are not a feasible treatment for RLS however, if you don't have a severe inflammatory condition.

Sampsie profile image
Sampsie

Hi, yes there is a big link with SIBO and many chronic illnesses. Dr Weinstock just did a webinar on this, which is on the RLS Foundation member portal. There's also a link with MCAS which is linked to SIBO and RLS. He talks about this too.

When you have SIBO, you have upper gut dysbiosis. It's an overgrowth of certain bacterias that cause gases and steal your nutrients because it's in the small intestine that the body takes nutrients from food. And this leads to other issues like leaky gut, where 'stuff' enters into our blood stream that should stay in the gut, and this causes an inflammatory response, hence we then form sensitivities and intolerances to foods and chemicals etc.

Most of our immune system is in the gut and becomes compromised. Our gut is connected to the brain and vice versa. Leaky brain is also a thing.

So improving gut health really is important. There are triggers for SIBO which include stress (inflammatory response), certain drugs including opioids, diet, and other illnesses such as MCAS. Anecdotal studies show a high percentage of people with illnesses such as RLS, ME, MS, POTs have SIBO and gut issues.

SIBO causes inflammation which can then inflame the brain as a result.

I had private tests for SIBO, gut dysbiosis, leaky gut etc. in the UK, positive results. It's complicated to resolve, and I use gut specialists at Healthpath to get help. There are a lot of free resources on their website and YouTube channel.

L glutamine can be used to fixe leaky gut, and going gluten free for a time helps because it creates zonulin which makes the gut lining leaky.

Pre and probiotics can help. I'm specifically using ones that showed as low or missing in my tests.

I'm trying to get 30 different plant based foods in my diet each week. Different bacteria live on different foods, so the more varied your diet, the better. This icludes nuts, seeds, veg, fruit, grains, pulses and natural probiotics like sauerkraut or keffir.

These foods can also cause SIBO to persist as they feed the bacterial overgrowth, so many do a restricted diet like FODMAP for 3 months. And take herbal antibiotics- microbials. I did this for a month.

It's complicated and takes time, but I am seeing an improvement in my ME. Hopefully RLS will follow.

Sorry, that turned out to be long!

Elffindoe profile image
Elffindoe in reply toSampsie

Thanks, very informative.

in reply toSampsie

Thanks for this info...definitely an area I need to look at more closely.

ruthgnatt profile image
ruthgnatt in reply toSampsie

I encourage people to watch the webinar from Dr. W on the RLS Foundation website with regard to SIBO. He does a good job explaining his theory. He did suggest Rifaximin which is an antibiotic aimed at gut bacteria. He also suggests low does Naltrexone which is a drug used to treat narcotic addiction. You may need to be a member to see the webinars, but it is only $35 per year and well worth it!

Elffindoe profile image
Elffindoe in reply toruthgnatt

I believe antibiotics are only short term measure for SIBO. This is because they don't tackle the cause of the excess bacteria.

They also can remove all the good bacteria too. Some of these are necessary and inflammation can also be caused by a lack of bacteria.

The LDN might be interesting however.

ruthgnatt profile image
ruthgnatt in reply toElffindoe

i am going to see dr. early at hopkins next month and plan to ask him about the LDN.i will let you know what he says.

Sampsie profile image
Sampsie in reply toElffindoe

The antibiotics or antimicrobials (herbal antibiotics) are to lower the bacteria causing SIBO. Yes they affect all bacteria. Then you rebuild your bacteria through pre and probiotics, diet, change if regime, and hopefully your bactetia reach balanced amounts. But you need to get rid of SIBO triggers to stop SIBO returning.

CBD is being seen as an aid in helping stop SIBO as avoiding stress and inflammation is key. Aling with other triggers.

The LDN sounds great. Also another thing is prokinetics for preventing relapse.

Elffindoe profile image
Elffindoe in reply toSampsie

Be careful some prokinetics can make RLS worse.

Zurp111 profile image
Zurp111 in reply toSampsie

Thank you for the information, I see better where to go! One has to find his way like this, doctor often don't' help....

Sampsie profile image
Sampsie in reply toZurp111

Absolutely. This forum and the amazing people on it have saved me more than once! Good luck.

Eryl profile image
Eryl

The link is the diet, you'll find that a diet to treat sibo is almost identical to that to reduce chronic inflamation. They are invariably low in carbohohydrates, especially refined ones like sugar, flour and fruit juice and many for inflammation will also be low in refined seed oils which contain high levels of polyunsaturated fats.

BBMBRB profile image
BBMBRB

i have started using Symprove and its hugely improved my intestine symptoms. My RLS is better too (although I've just started on iron so could be due to that). Its expensive but worth it for me.symprove.com/

RLSofManyYears profile image
RLSofManyYears

I have looked at SIBO as well and decided to try the less expensive route (I'm in the UK). So for the last few weeks I have been taking various herbal supplements as per siboinfo.com/herbal-antibio.... However so far I've not seen any real improvement to my RLS. I have a few more weeks left of the supplements and if there is not any noticeable improvement then I will be stopping them.

BAB97TIE profile image
BAB97TIE

I had RLS for 15 years. The last 18 months were horrible. I could not sleep more than 1 hour at a time. I was diagnosed with SIBO recently. I took supplements for the SIBO and started Low Dose Naltrexone 1.5 mg 8 weeks ago. My RLS resolved almost immediately and I have never slept better.

I think the LDN reduces the inflammation caused by SIBO which solved my RLS.

I would highly recommend this approach. The biggest problem that I had was finding a doctor who would write a prescription for it since it is an off label drug for SIBO and there are no real clinical studies on it.

I showed the information from the link below to my Neurologist and she wrote a prescription for LDN. I started at 0.5mg and worked my way up to 1.5mg which is where I had success.

I had tried everything including 5 iron infusions and 4 rounds of nasty antibiotics. Nothing worked.

If you have SIBO, you should definitely try this approach.

The 2 links below are about the LND study and the supplement treatment for SIBO.

LDN for SIBO and RLS study link:

sa1s3.patientpop.com/assets...

Supplement for SIBO link:

ncbi.nlm.nih.gov/pmc/articl...

Sampsie profile image
Sampsie in reply toBAB97TIE

I've also seen experts recommend this. Did you have any side effects? Do you still take other medication for the RLS alongside or just the LND? And does it cause wakefulness? Thank you.

Sampsie profile image
Sampsie in reply toSampsie

Which supplements did you take please? And did you do a restrictive diet whilst on the supplements? Thanks.

BAB97TIE profile image
BAB97TIE in reply toSampsie

I have had no side effects not even wakefulness. I took Ropinerole for a short period of time about a year ago but stopped when I learned about augmentation on this site. I also took Gabapentin for a short time about 7 months ago but it did not help so I stopped.I think the most important thing to do if you decide to take LDN is to start with a very low dose and continue to titrate up very slowly until you find that it works. I started at 0.5 mg and increased in 5mg increments every 10 days until I reached 1.5mg which works for me . Your experience may differ.

Good luck.

DicCarlson profile image
DicCarlson

Well, the gut is characterized as the Second Brain with its own neural network: the enteric nervous system (ENS), a complex system of about 100 million nerves found in the lining of the gut. This is complex biochemistry, but it can have far ranging implications for RLS and other disorders. I have always ASSUMED I had SIBO - severe GERD/Acid Reflux - and treated myself accordingly with this protocol from SiboInfo.com

4 weeks on, 2 weeks off - 4 drops Oil of Oregano (100%) with a carrier oil (I use Olive Oil - don't take without carrier oil!), Garlic (raw garlic and Garlinase), and Berbine.

There is a breath test for SIBO - you can order it online or visit a provider.

My RLS was characterized by low Ferritin levels that responded dramatically to iron supplements - but the WHY always led me to assume there were absorption issues caused by some sort of gut dysbiosis. I've had gut issues ever since I was prescribed Cipro (fluoroquinolone antibiotic) 10 years ago.

Today I eat fermented vegetables, take a fiber supplement (with prebiotics), take various probiotics, and try and eat a low carb Paleo type diet, and take a gaggle of supplements.

Still - plenty of sleep issues! I tell my friends I'm honing in on it! Last night I slept 6 hours straight - haven't done that in well, years. More argument for keeping a food/supplement diary to see what can be causing or working positively to help with RLS and sleep.

WideBody profile image
WideBody in reply toDicCarlson

We are on the same path, I got 6 1/2 hours sleep. I have been doing homemade Kefir for a couple months.

Sampsie profile image
Sampsie in reply toDicCarlson

I'm so pleased for you. I took the oregano oil too. I hope you keep improving.

Stdorn profile image
Stdorn

After I started getting horribly ill after every meal my doctor said he thought I had SIBO. It turns out after a year of horrific gas and diarrhea after every meal it turned out it was my high dose of Gabapentin making me sick. I know avoided 2 hours before and after meal and no longer get sick.

WideBody profile image
WideBody

I believe my iron absorption issues are due to SIBO and inflammation. I have been doing homemade Kefir for a several months. Kefir is the enemy of SIBO.

Just search for Kefir and inflammation.

Kefir dietaries have anti-inflammatory activity by inhibiting the activity of proinflammatory cytokines such as IL-1β, TNF-α and IL-6.

sciencedirect.com/science/a...

Sampsie profile image
Sampsie

FYI is anyone is interested, Dr Siebecker, SIBO expert, sent out an email today showing a SIBO conference online and the webinars are free to view for another 24 hours I think. Here is the link:

next-steps-for-treating-tou...

She has tons of information on her website on SIBO and treatments.

Joolsg profile image
Joolsg

I posted on this 2 years ago and included this link for our US friends as the study was in the USA. Tests are only available privately in the UK and are expensive. Another area of interest is faecal transplants to enable healthy bacteria to re colonise the gut.

sciencedaily.com/releases/2...

MissRita profile image
MissRita

I still want to know more! All the bells and whistles just went off for me right now. Totally believe that they both have a connection for me.

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