The Gut...Microbiome - The Final Frontier?

taconic.com/taconic-insight...

So it seems that mice receiving fecal transplants from Parkinson's patients develop motor deficits similar to... that's right, you guessed it - Parkinson's disease. Mice receiving fecal transplants from healthy controls did not develop motor deficits.

How much do you want to bet that mice receiving a fecal transplant from me will go on to develop RLS like symptoms? Anyone who thinks that our guts, our diet, and our gut microbiome have nothing to do with RLS is sadly mistaken. Iron is a stop-gap measure. The best one we have for now. Ultimately the best treatment will likely involve some type of gut microbiome overhaul even if your digestion feels perfect.

[Madlegs1]

No sh1t.! You're kidding!? 😅

[Hidden in reply to Madlegs1]

No actually. Fecal transplants are all the rage for treating diseases including Parkinson's. The power of poop!

[Madlegs1 in reply to Hidden]

Yep- I understand a lot of people are big into DIY!😲

Some Dr on a documentary I saw recently poohpoohed the whole idea!😤

Oh dear- that was unintended!😎

[Hidden in reply to Madlegs1]

It's FDA approved in US for C- Diff infections. It's the gold standard at this point. I'm trying to talk my son into interning at the stool bank. I recently read that fresh is more potent than frozen. Go DIY! Love your sense of humor and balance.

[Madlegs1 in reply to Hidden]

Will he be a donor, like?

[Madlegs1 in reply to Madlegs1]

I can just imagine someone sitting on a stool ( oops - there I go again!) And delivering on to a conveyer belt into an operating theatre.

What they can do these days!

[Hidden in reply to Madlegs1]

They're more picky about their donors than Trump is women. He would be more like "thank you" for your donation." "Here's $40 ...don't be a stranger." Then they turn around and sell it for about $500.

[pmarland6833]

You 100% right ! I've always thought my RLS had to do my IBS. Depending on what kind of a day I've had will dictate what kind of a night I'll have with my RLS . Its an ugly circle that I'm still trying to figure out. I've never taken meds for the RLS, but don't think I have it as sever as some on this site. I feel for all of you !

[Hidden in reply to pmarland6833]

Try not eating much in the evening. If you have a spare $6 laying around buy some ferrous bisglycinate from Amazon called Solgar's Gentle Iron. I take one 25 mg capsule right when I feel the RLS. Relieves the RLS for one night. After a couple of times if u like it please discuss with your doctor.

[Bganim1947 in reply to Hidden]

Yes, Ferrous Bisglycinate has been my savior. It has stopped my RLS cold and has allowed me to titrate off my Ropinerole slowly without any flare ups. It is like a magic bullet.

[Hidden in reply to Bganim1947]

Yes yes good description. Magic bullet. Isn't it amazing how it knocks u out? I've awakened on the living room floor in a puddle of drool. Oy Bganin our poor brains have been crying out for iron and all we gave it was DAs and then opiates. If a person had an anemic body would we throw painkillers at them.? So thrilled for u. Start writing those books and articles - the world needs to know.

[Bganim1947 in reply to Hidden]

Thank you!!! I just sent a letter off to the chair of the UK RLS Org. to off my assistance.

Let's get the word out there and knock those docs of their high horse of ignorance.

[Hidden in reply to Bganim1947]

I think I'm in love. But I'm a married woman. I have emailed doctors here - no response. I did get a response from what I call "the infuser" at Johns Hopkins and had a very enlightening conversation about iron. His specialty is actually anemia and he knew very little about RLS and seemed truly grateful when I told him about what we are all going through. I hav a work meeting - will be back in a flash.

[nightdancer in reply to Bganim1947]

Were/Are you still taking tramadol and Gabapentin, though? I know you said that at some point, Bganim. Just wondering, since it would be hard to tell if it is the iron or the meds, or the combination of both that is doing it?

[Pippins2 in reply to Bganim1947]

Of course it is rather difficult bganim when you are taking so many meds Ropinerole, Tramadol, Gabapentin and the iron to knowexactly which is the magic bullet maybe a combination of them all working together

[Hidden in reply to Pippins2]

It's the bisglycinate. She was on all the drugs you mention and still getting restless BODY. Even ferrous sulfate did nothing for her. It was only the day she started the blood brain crossing ferrous bisglycinate that she got relief. Xx

[nightdancer in reply to Hidden]

She was taking TWELVE mgs of Ropinerole, so she was on 10 times the therapeutic dose, hence augmentation, hence full body RLS. Bganim is the perfect example of augmentation of symptoms when on way too high of a dose of that class of meds.

[Hidden in reply to nightdancer]

She's down to 8 with zero symptoms thanks to the bisglycinate. Wow, now you're embracing the iron.X

[Hidden in reply to Pippins2]

What did you think of the article I gave you regarding berberine and AD? My pleasure by the way.

[Pippins2 in reply to Hidden]

Tredlight, it was interesting but seems to be aimed more as a preventive rather than for someone who already has Alzheimers. However I thank you for taking the trouble of bringing it to my attention and thank you for thinking of my mum.

[Hidden in reply to Pippins2]

It's worth a google. Not much more than that. You are most welcome.

[Hidden in reply to Bganim1947]

“Yes, Ferrous Bisglycinate has been my savior. It has stopped my RLS cold and has allowed me to titrate off my Ropinerole slowly without any flare ups. It is like a magic bullet.”

Bganim, you were one of my first victims. Few people were willing to try the ferrous bisglycinate because it was discounted by most on here.

Time flies when you’re having fun?

[pmarland6833 in reply to Hidden]

so ...do you suggest not eating much in the evening because of my IBS,or is that helpful for the RLS ? I already take an iron supplement, so not sure about taking more....?

[Hidden in reply to pmarland6833]

No not eating much for RLS reasons. I tried taking ferrous sulfate for the RLS (which is probably the type you take) and it never did the trick for me. And were I to take the ferrous bisglycinate during the day or with a meal it would do nothing for my night-time RLS. I only take the ferrous bisglycinate when I have RLS which is not every night. I also take the iron for insomnia. My red blood count is that of a man's and my iron stores are robust yet there's nothing better than that 25mg of ferrous bisglycinate when I'm having an attack.

[pmarland6833 in reply to Hidden]

Thanks much !

[nightdancer in reply to pmarland6833]

One thing that is good for bed time snack is some protein. Your body likes protein all day, and apparently at night. Eating less is better closer to bed time, because your body is not working to digest foods.

[pmarland6833 in reply to nightdancer]

Thank you for the tip. Something like yogurt ?

[nightdancer in reply to pmarland6833]

Yogurt is perfect, it is easy on the tummy and has a lot of protein. Even some almonds if you can eat them, or peanut butter will do it too. Me, I will go for the Greek yogurt every time.

[rkatt]

When I first heard about this I went to my doc with downloaded medical papers and got a flea in my ear the size of a rat. She was unimpressed.

[DicCarlson]

C-Diff kills about 15,000 in US per year. A probiotic LP299v has been shown to increase iron absorption, a contributing factor in may RLS cases.

[Hidden in reply to DicCarlson]

I think most of us absorb iron ok it's that our brains aren't storing some for at night. How r u doing Dic ?

[DicCarlson in reply to Hidden]

Mostly no RLS symptoms after the iron. Now on just once per week 18mg (albion ferrous bis glycinate chelate). Working on the insomnia - lower Glutamate higher GABA is the key I believe. Found this to help sourcenaturals.com/products...

[Hidden in reply to DicCarlson]

I will read in a few. The iron deficiency in our brains is what leads to elevated glutamate per Johns Hopkins. Will post article later. I also use the iron for insomnia. Take it at night next time you have insomnia and watch what happens 😴

[DicCarlson in reply to Hidden]

I am going to try that tonight or tomorrow - I just re-read all the Johns Hopkins stuff. They seem to be the best medical authority on RLS I've seen anywhere.

[Hidden in reply to DicCarlson]

academic.oup.com/ofid/artic...

[nightdancer in reply to DicCarlson]

Johns Hopkins is the one doing the biggest studies on iron and one on opiate use in RLS. The one for opiates is to prove you do not augment on them, like the dopamine med.

[Hidden in reply to DicCarlson]

I didn't know the number was that high. Doctors have been using the fecal transplant for this infection for several years now with literally no adverse side effects, except, and there's an except, a women who was unresponsive to vancomycin was given a transplant by her doctors using stool from her somewhat over-weight 14 year old daughter. The woman made a complete recovery from the C-Diff shortly thereafter. However, about a year later this woman, who had been thin her entire life, was now obese. She was quite upset especially since she was eating the same foods in the same amount - so she swore. The doctors put her on a liquid protein diet to no avail. And by age 16 her daughter was obese as well. Anyways, as these transplants unfold doctors have been able to turn thin mice into fat mice (on same number of calories of course) simply by transplanting stool from overweight mice. I took a six week course on the gut microbiome and my jaw was in the drop position the whole time.

[Bajatom]

Our microbiome is determined by what we eat. Videos/transcripts on oatest research: nutritionfacts.org/topics/m...

[Hidden in reply to Bajatom]

Great article, how did you find it? I wish the RLS-UK could hire a chemist to study all of our poop and then study an equal number of healthy controls and see what if any gut bacteria we are missing or have too much of. Are you with me?

[Bajatom in reply to Hidden]

If referring to microbiome arrival, Dr McGreager posts his review of literature weekdays. He has posted about 1000 at nutritionfacts.org. use menu to find old ones by topic.

[nightdancer in reply to Hidden]

The RLS-UK works with all kinds of doctors at prominent hospitals in the UK. Chemists cost money. The US RLS Foundation would never be able to "hire a chemist" either. Too much money for a non profit unless they could find one that would volunteer. I am quite sure chemists are involved already, and they are quite aware. Before you said you wanted to "inform" them of the iron connection, and of that I am SURE they are aware. That is what the Medical Advisory Board is for, and the US one has quite a large medical advisory board, FYI. But, I am sure you already know that, too. The foundations do NOT do clinical trials and/or studies. They report on studies, but even they, the US one, could never raise enough money for a "poooooo" study. Foundations really work on awareness, since that is financially more up their alley.

[Bganim1947]

I agree! This is really interesting. Thanks for the post.

[Hidden in reply to Bganim1947]

Wait wait how r u feeling ?

[Bganim1947]

Dear tredlight,

I don't know if you followed any of my back story on titrating off Ropinerole, but here's where I am now—just write this to someone else, so I'll copy part of it here. I started a month ago with the first reduction of Ropinerole ER by 2 mg, plus (1) 28 mg capsule of iron before bed with orange juice—best on an empty stomach to further maximize absorption. I also avoided alcohol for the first two weeks until I was sure I wasn't going to have another augmentation or flareup experience. I don't drink much, but I discovered that even one glass wine with the dinner could trigger an RLS episode. I also minimized my caffeine, just 2 cups of coffee in the morning, and no chocolate. Yesterday I saw my GP after successfully completing the first lower dose of 2 mg for one month. I haven't felt this great in years.

I believe that over the next several months I can keep reducing my Ropinerole until I get off of it completely. I have not needed an opioid during my titration so far, although my doctor did give me a script for Vicodin. I do take low doses of Tramadol and Gabapentin for knee and ankle pain caused by a failed operation. But I haven't had to increase it during my titration experience.

Thank you everyone on this site—I couldn't have doone it with so many of you who guided me through this.

Barbara (Bganim1947)

[nightdancer in reply to Bganim1947]

Ah, this is what I was looking for. I knew you said you were on meds, and you are on 3 meds for RLS, tapering off Ropinerole, added the iron in. But, the tramadol and Gabapentin are going to help with that withdrawal, so in combination with the iron, it seems to be working for you. You are also a "holistic" counselor? isn't that a little hard to do when you are on so many meds? Good that you can separate the 2, but did look your books up on Amazon, and they are all of the holistic variety, plus a course in holistic healing. So, that confuses me just a bit. Whatever you do is fine with me, but you can't say it is all the iron doing it, can you for sure? Some people can come off the dopamine meds with not much help, but you have help with the tramadol and the gabapentin, so it is a confusing message. But, am glad you are doing better. How is that stomach thing going?

[Hidden]

Just to point out that Tramadol is a opioid altho a synthetic opioid its still a strong pain med and its what most people take when weaning off a dopamine med.

[Hidden in reply to Hidden]

Tramadol is not what has helped her, she was on it and still getting restless BODY. It was only the bisglycinate that helped her.

[nightdancer in reply to Hidden]

And, I will say again, anyone who was on that high a dose of Ropinerole was augmenting, and it will be a hard and slow process to get off such a high dose. Do you still not understand what augmentation is, because I will be happy to give you the information again, if you need it.

[Hidden]

I was pointing out that tramadol is a opiate, bganim said she wasnt taking any opiates. I was talking to bganim.

[Hidden in reply to Hidden]

[nightdancer in reply to Hidden]

Tramadol is an opiate. So it is helping her. She had a hard time because again, she was on 12 mgs of Ropinerole which is an obnoxiously high dose. That is a dose for Parkinson's

[Hidden in reply to nightdancer]

Yes I know the opiate did nothing for her augmented symptoms. It's like the bisglycinate saved her life. Even though she has dropped 4mg of the DA she feels the best in her life. 0 RLS 👍😂😛😄

[Mikeca]

Restless legs does definitely come from the gut. I initially tried fodmap food exclusion diet with some success for my restless legs which would occasionally spread to whole body But the one that really worked was a more strict version of fodmap called sibo, by doctor siebecker. After 6 months on it i have changed my small intestinal gut bacteria levels to near normal. After 28 years of madness i have been free of rls for 3 months now. For me there was a strong link between my bowels and rls. When my rls played up my small intestine would almost ich.

[Hidden in reply to Mikeca]

Can you tell me which version of the (low) fodmap diet you followed? I have looked on Dr Siebecker's site and it refers to the low FODMAP diet (Monash University). Is this the one you used? Also, after how long did you see an improvement on it?

[Mikeca]

It took 6 weeks to get relief. It's hard to stay with the diet but worth it.

[jonasmichael in reply to Mikeca]

which diet please