SUCCESS!!! I had RLS for 37 years and am at last free of it! Over 3 years ago I began noticing that every time I ate almost anything, that within 1-30 minutes the RLS symptoms would ramp up a lot. About a year ago I watched Dr. Leonard Weinstock's podcast on RLS.org (also on youtube) and he explained the connection between SIBO (small intestine bacterial overgrowth) and RLS. SIBO can be diagnosed with a breath test so I took the test which came back positive for SIBO. Then I went to an integrative health practice and they prescribed 2 rounds of medication to kill the bacteria that didn't belong in the small intestine. The first round was rifaxin (rifaximin?) (sp?) along with flagyl and the second round was naltrexone 4.5 mg with erythromycin 20mg, one capsule at bedtime for 2 months. After the second night on naltrexone and erythromycin I slept 4 hours and after the third night I slept 7 hours with NO RLS symptoms, even during the day!! Today is the 5th day and I am expecting this to continue working indefinitely, now that the SIBO is cured. I hope my success story will help thousands of you who have been suffering for many years with this dreadful disease.
SUCCESS!!!: SUCCESS!!! I had RLS for... - Restless Legs Syn...
SUCCESS!!!
Absolutely fantastic. I do remember the reports linking RLS to Sibo but never followed up on the tests as they’re only available privately in the UK and the cost of the Sibo test and the course of antibiotics comes to around £500.
So pleased it has worked for you.
Sounds wonderful. I hope with you that indeed it is te SIBO and that it is/ will be cured this way.
One devil's advocate question, though. Could it be the naltrexone? What you are taking is in fact low dose naltrexone (LDN) and several people have had success with it. If I remember correctly, it (also) works on the opioids receptors. Time will tell (after you're through the 2 months of naltrexone and erythromycin). Let us know!
That's fantastic news.
Do you think it's also the naltrexone thats helping keep the restless legs at bay? I recall reading about that as a stand alone treatment.
Fabulous!
There is a strong connection between intestinal inflammation and RLS, so even if the naltrexone was a factor in calming your RLS it's still probable that treating the inflammation was the main factor.
Hi Manerva, do you have any good information about the links between RLS and inflammation. I have done some looking and it seems that iron levels are connected with inflammation as well but I’m finding it hard to see clear mechanisms. In my case I find intense exercise also causes my RLS to worsen and that can again be related to inflammation (... Which I believe can also be exacerbated by stress, tension and anxiety… And so it goes on)
I have a bit of information that might clarify things a little.
There is a connection between chronic (sub-clinical) inflammation and various health problems including neurological conditions such as RLS.
RLS is particularly associated with intestinal inflammation whatever the cause. Systemic inflammation is also associated with RLS e.g, due to autoimmune diseases such as rheumatoid arthritis.
Intestinal inflammation is also associated with iron deficiency due to failure to absorb iron.
Here's some links that might help
pubmed.ncbi.nlm.nih.gov/259...
pubmed.ncbi.nlm.nih.gov/222...
pubmed.ncbi.nlm.nih.gov/215...
pubmed.ncbi.nlm.nih.gov/227...
Intense exercise is known to make RLS worse so should be avoided. Some exercise, not too strenous can improve it.
Thank you, very helpful.
Oh my god that happen with me after my dinner I start getting Elsie am going to print this out taking this to doc if he he can refer me to do the test Thanks🙏😁
Delighted for you, long may it last.
Excellent! There are many conditions related to SIBO, and it develops for various reasons. GERD is a condition I had (have) and I treated it like I had SIBO - bingo - GERD went away. I used the "herbal antibiotic" solution described in this link...
siboinfo.com/herbal-antibio...
This may also explain, at least for me, WHY I was deficient in Iron and Magnesium and developed severe RLS - some connection with gut dysbiosis caused by SIBO.
I've had a look at this web site and they recommend:
The Multi-Center Team used:
2 herbal combination formulas together, at a dose of 2 caps 2 x day x 4 weeks, for each formula.
Biotics FC Cidal with Biotics Dysbiocide, or
Metagenics Candibactin-AR with Metagenics Candibactin-BR
My team commonly uses:
1-3 of the following herbs x 4 weeks per course, at highest levels suggested on product labels.
Allicin from Garlic (the highest potency formula I know of is Allimed)
Oregano
Berberine- found in Goldenseal, Oregon Grape, Barberry, Coptis, Phellodendron
Neem
Cinnamon
The Biotics stuff is "out of stock" in the UK (also expensive ~£90) and Metagenics stuff is expensive (£50+). I've looked at the herbal extracts and these are cheaper (£15-20). So has anyone any experience of these and any recommendations? For less than £50 then it may be worth a shot.
This leads on to a question: Does a course of these extracts fix the issue or do you have to repeat after a while?
I look forward to folks responses.
I have no experience with it, but wouldn't hold my breath.
If you can - see if you can get a "Breath Test" for SIBO and use the antibiotic treatment. I just assumed I had SIBO and used the herbal treatment: 4 drops of oil of oregano (the 100% stuff - Zane Hellas) mixed with olive oil, Berberine, and Nature's Way Garlinase 5000. I used this 4 weeks on, 2 weeks off. And it "fixed" my GERD.
I'm very convinced that there is more to the gut/brain connection than we know - and perhaps a direct connection to SOME RLS conditions.
I've just started a course of high strength vitamin C with K2. After 3-4 weeks I should know if this changes anything. If there's no improvement then I'll try the SIBO treatment. I do not know if I can get a breath test on the NHS here in Scotland but I can at least try the herbal treatments. However I do need to wait until I've done my Vit C trial as I want to be clear about what actually works for me. The other thing I'm going to look at is Temgesic (as long as my GP will prescribe it for me).
One thing I have noticed is that my RLS gets worse whenever my bladder is full and going to the toilet reduces the symptoms right away. How that is connected, if at all, with SIBO I do not know but I have always wondered about the connection between RLS and my bladder. Has anyone else found this?
Update: I've been on 200mcg Temgesic for 5 days now and I'm finally sleeping through the night! SIBO checks will have to wait for now.
Yes - many people report that a full bladder/Bowel can cause RLS . I have no idea why- maybe it presses on nerves in the spinal column.
Others report that drinking lots of water in the evening helps.
I try everything that people say helps them. None of the gadgets or supplements have helped but emptying bladder/bowel & drinking water does.
Hi DicCarlson, I'm contemplating taking a similar course; did you take the Garlinase 5000 as prescribed on the box, that is one tablet daily? I read that the suggested dosage for SIBO is 1350-2700mg of allicin daily taken in 3 doses. However, in Garlinase it comes as "garlic bulb extract standardized to 3.4% alliin (10.88mg)" and I don't know how this equates to allicin! Thanks for your help
🥰 Nina
I take just one in the morning - but also usually take a clove of raw garlic minced on a piece of buttered toast. here's some additional information on Allicin in Garlic...
I need to find out more about this breath test.
Amazing news, so happy for you and thank you for sharing, and thank you for everyone else for the additional info, I need to follow this up too!
Fabulous news Seaux, it gives us all hope
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