Acidophilus: can anyone tell me whether... - Restless Legs Syn...

Restless Legs Syndrome

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Acidophilus

0rangetulip profile image
30 Replies

can anyone tell me whether acidophilus tabs aggrevate RLS. I have recently started back on these tabs to help my Cauda Equina problems and the RLS has now gone through the floor.

I am awaiting a private video consultation with Prof Walker in the next two weeks as my GP totally ignores my requests for further help even tho the heebie jeebies and pain has spread to my arms and hands and I’m lucky to get 3hrs sleep nightly.

Thanks for all the help and information you all give in your posts - this site is a lifeline to us all.

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0rangetulip
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30 Replies
SueJohnson profile image
SueJohnson

Acidophilus is not a problem for RLS.

Seaux profile image
Seaux in reply toSueJohnson

Acidophilus can be a huge problem if you have both histamine intolerance and RLS. I have both and anytime I eat foods that are high in histamine, such as acidophilus, my RLS gets much worse. Find a list of foods online that are high or medium in histamines, eliminate them from your diet, and see if your RLS improves.

SueJohnson profile image
SueJohnson

Have you changed anything else recently? Medicines, OTC supplements, lifestyle, your diet?

0rangetulip profile image
0rangetulip in reply toSueJohnson

thanks Sue. No changes recently although v gradually weaning off tramadol as they no longer work for my spinal pain and GP says he cannot give me anything until I get off the tramadol. I’m currently down to three quarters of one tab ie: 37.5mg at night.

As I’ve been on beta blockers for four years since my heart attack I’m wondering if these are making my RLS worse suddenly. I cannot take calcium channel blockers which my GP says is the only alternative. Do you have any alternative ideas Sue?

Joolsg profile image
Joolsg in reply to0rangetulip

That could be why the RLS is playing up. Withdrawal from opioids causes RLS symptoms.As I replied above, switching to another opioid like Buprenorphine would control the RLS and hopefully the back pain.

0rangetulip profile image
0rangetulip in reply toJoolsg

if only Joolsg!! I’ve been requesting buprenorphine patches for the past tray bug my GP will not issue any prescriptions for new opiates. He says it’s immoral and unethical to give people opiates. I’ve said last week that I don’t know about immoral etc but it’s definitely inhumane to make people in severe pain suffer without medication because of personal views. I even took along the Mayo algorithm and the nhs info for who can get buprenorphine - all fell on deaf ears and he would t even take the Mayo Clinic downloaded info. Just said that irrelevant cus it’s American!!’!!! This is why I decided to get an appt with Prof Walker. I just feel bupro would help all the three problems ie. Cauda, back pain, RLS and possibly help with the final three quarters of a 50mg tab of tramadol.

Thanks for taking the time to reply - I’m really hopeful the Prof will come up with a suggestion. I’ll keep you updated.

Joolsg profile image
Joolsg in reply to0rangetulip

I am so sorry that your GP is so difficult and unwilling to educate himself about RLS and low dose opioids.For the pain of cauda equina, medical cannabis would work well. Sadly not available on NHS so it's expensive. But if you can manage it, it is excellent for nerve/spinal pain. It's the only thing that helps my trigeminal and occipital neuralgia caused by MS.

Fingers crossed Prof. Walker helps & sends a letter to your unhelpful and uncompassionate GP.

There is growing evidence that opioids don't help pain long term and that's probably what your GP is referring to, but cannabis for the nerve pain and Buprenorphine for the RLS are both meds he should discuss with you.

0rangetulip profile image
0rangetulip in reply toJoolsg

I apologise if my reply has already come your way. I started a reply to Joolg but somehow it “vanished” during posting!!

Since I’ve had spinal probs since I was thrown over a sofa at 22yrs old I’ve tried many things to relieve the pain. I grew a cannabis plant annually and used its harvest as a morning and evening tea. Nowadays I notice you can purchase specific seeds with low THC and high CBD properties which I’m very seriously considering having a go with (I live on Exmoor so should be able to disguise a plant between the growing tomatoes!!). I’ve not even mentioned medical cannabis to my GP since i feel there’s no hope there as Cauda Equina is not one of the allowable nhs diagnosis and he seems to be loathe to issue prescriptions for much at all generally after speaking with my fellow villagers. I tried CBD oil a few years back when it first became ‘popular’ here in the UK but didn’t find it of much benefit. Likely a not too good make although expensive. Joolg do you have any specific knowledge of its use ie: named source and how long it takes to become affective. I will need to purchase online as we only have a small local Boots chemist near and no health food shop within 26 miles at Taunton. I would change GP but have enquired of the next nearest one 11miles away but they say we are out of their area so really pinning my hopes on the Prof.

Cheers all and hope you have a relaxing Sunday.

CsiguZ profile image
CsiguZ

I strongly believe and some studies are suggests that alterations in our gut microbiome could be the root cause of RLS. As you take this probiotic, for sure you make (very likely positive) changes in your microbiome and this might aggrevate your RLS.

Eryl profile image
Eryl

I have eliminated my RLS by avoiding inflammatory foods and have been taking acidophilus for the last six months and it hasn't made the RLS return.

0rangetulip profile image
0rangetulip in reply toEryl

thanks for that Eryl. I’ve always eaten healthily and took acidophilus for years but stopped as I wondered if it was ok with RLS but as it seems it is I started back on it again this a.m eliminated all the other meds individually for a couple of days each but to no avail. I can now only assume it’s reducing the tramadol since last April-v v slowly. Hopefully Prof Walker will be able to help me.

Eryl profile image
Eryl in reply to0rangetulip

BY reducing my systemic inflammation I've been able to avoid meds completely.

CsiguZ profile image
CsiguZ in reply toEryl

Have you had a stool microbiome test? Why did you choose acidophilus and not any other probiotic? I have very high count of Sutterella pathogen bacteria (100 times more than all of my bifido and lactobacillus) in my intestines and I just checked that based on a research acidophilus can inhibit the growth of this pathogen.

0rangetulip profile image
0rangetulip in reply toCsiguZ

interesting. No I haven’t had a micro biome test but I started acidophilus back in the 90s when I had tests for yeast intolerance and it worked very well so just continued on with it. I’m at least able to have gravy on my food if I’m eating out now which I couldn’t even tolerate back at the start but no bread pasta wine or alcohol.

CsiguZ profile image
CsiguZ in reply toEryl

And which brand, strain and CFU you take?

Eryl profile image
Eryl in reply toCsiguZ

Sorry, I can't remember where I read it, all I remember is that acidophilous is the most effective. I don't stick to one brand or any particuar dose as I don't believe that makes a huge amount of difference, it's just to tune up my microbiome. I also eat sauerkraut daily for the same reason as I don't like yogurt or many other fermented foods. The most effective way of reducing RLS is the minimisation of systemic inflammation, that has a side effect of not feeding bad bacteria (which thrive on sugar and starch) and feeding good bacteria

0rangetulip profile image
0rangetulip in reply toEryl

you’ve obviously done a lot of research into micro biome Eryl. I am not a lover of sauerkraut but make my own live yoghurt -sugarless of course - and just add some homegrown berries which although they contain natural sugars I seem ok with. Done this for years but in the days wen I had a goat herd I made my yoghurt with goats milk. Much creamier.

CsiguZ profile image
CsiguZ in reply toEryl

There could be a huge difference between probiotics even from the same bacterial genus, as different strains can have different byproducts and effects. One of the best example is E. Coli bacteria, as there are pathogenic strains as well as benefical strains of the same genus. CFU also matters, as you can buy the same probiotic strain for example at 200 million CFU or 3 billion CFU and the higher the CFU the better chance to be able to colonize your gut. In the past month I started to make yogurt from some specific strains from the Super Gut book by dr. Davis and I can already feel the benefits.

BTW, sauerkraut is also a good choice to boost the level of your good bacteria.

Eryl profile image
Eryl in reply toCsiguZ

Orangetulip's original question was about specifically acidophilous and rls which I answered, I don't think that a discussion of different strains of bacteria is relevant.

CsiguZ profile image
CsiguZ in reply toEryl

IMHO any information could be useful to get some relief from RLS, but I understand your point.

Eryl profile image
Eryl in reply toCsiguZ

I've already said that the key to elimonsting rls us reducing your systemic inflammation,

CsiguZ profile image
CsiguZ in reply toEryl

You are absolutely right, but there could be different approach how you treat systemic inflamation. Last year I had gastroscopy and it turned out my duodenum is inflamed, very likely because of my SIBO. I’m pretty sure in most cases SIBO (and as a cause the inflamation of our small intestine) is the reson of RLS. My approach is to treat SIBO in order to reduce inflamation as not the consumed foods are the root cause of the inflamation, but the bacterial overgrowth in the small intestine which utilize the food to thrive and also cause autoimmune reaction which lead to inflamation.

Eryl profile image
Eryl in reply toCsiguZ

The foods which promote the development of SIBO are mostly the same as the ones to cause systemic inflammation i.e. processed and refined sugars and starches, so it is questionable whether or not it's the SIBO which causes the inflammation or the foods which promote SIBO.

CsiguZ profile image
CsiguZ in reply toEryl

It’s still not 100% clear even to the scientists why one can develop SIBO. One factor could be bad eating habbits you mentioned, but other possible factors are bacterial infection, stucked ileocecal valve, low stomach acid, long term usage of antacids, slow motility etc. But if you’ve developed SIBO, you cannot get rid of it with any special diet (maybe elemental diet), you can just eliminate the symptoms while you keep your diet.

Eryl profile image
Eryl in reply toCsiguZ

Processed foods such as refined carbohydrates break down easilly in the gut so that they are available to the bad bacteria which thrive on them before they've left the small intestine wheras natural foods take longer to break down meaning they pass thrpugh the small intestine into the bowels before the godd bactria can make a serious impression on them.

CsiguZ profile image
CsiguZ in reply toEryl

Actually the oposite happens in case of SIBO: while refined carbohydrates, like white sugar can be easily break down and easily absorbed by our gut and won’t cause SIBO symptoms, lots of natural and healthy vegetables and fruits contains complex carbohydrates which hard to break down by our digestive enzymes and digest them, thus the excess number of bacteria in the small intestine starts to ferment these, causing bloating, cramps, flatulance as well as neurological issues. Low FODMAP diet is the most effective to reduce SIBO symptoms and this diet restricts lactose, fructose, fructan, mannitol, sorbitol etc. These carbohydrates can be found in high amount in onion, garlic, broccoli, peas, mushrooms, apple, cherries, peach, pear, plum etc.

It’s important to note, that SIBO is not equal to a pathogenic bacterial infection, very often excess number of good bacteria present in the small intestine, while in normal circumstances these bacteria shoul be only in the large intestine.

Eryl profile image
Eryl in reply toCsiguZ

All I've got to say to that is RUBBISH. That's probably why you've got SIBO and I haven't!

CsiguZ profile image
CsiguZ in reply toEryl

Ok :)

0rangetulip profile image
0rangetulip

that’s great news Eryl. Long May it continue and thanks for your update.

Joolsg profile image
Joolsg

I take acidophilus and lots of other probiotics. They don't worsen my RLS and I haven't heard of that happening to anyone else.It could be the tramadol that is now causing severe worsening of the RLS. It's the only opioid that causes augmentation.

Hopefully, Prof Walker will prescribe a different opioid that will cover your back pain AND the RLS.

Many of us are on low dose Buprenorphine pills and they are highly effective for RLS and would help your back pain.

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