Potentially harmful effects of probiotics?

[Deltrus]

I've found another mechanism which would drastically increase lactate. If you have high oxidative stress in your mitochondria, then they cannot replicate enough to meet metabolic demands. Then, your body's energy metabolism switches to glycolysis which happens outside cells and can supplement mitochondrial energy. But it causes a huge rise in lactate.

Try taking mitochondrial anti-oxidants such as chaga mushroom, PQQ, CoQ10, resveratrol.

 

[Jonathan Edwards]

Dear forum,

I have had CFS/ME for over 20 years.

Recently, after being on a probiotic called "Ultra Flora Balance" for 3 years, and not taking any other medications, I have developed rather serious tremors and a complicated movement disorder that has steadily progressed and gotten worse.

I am trying to find out if theoretically it is possible for probiotics to cause this type of damage to the CNS (Central Nervous System) and to cause an involuntary movement disorder?

My neurologist assures me it is impossible, but taking probiotics does make me very drowsy and seems to cause tingling in my muscles, and although it does have a very beneficial effect on my pain symptoms, I'm beginning to suspect it MIGHT be possible.

What do you think?

Dear Womble,
I agree with your neurologist. There is absolutely no reason whatever to think that probiotics would have anything to do with a movement disorder. And even less to think it might have anything to do with lactic acidosis, which probiotics do not cause. Involuntary movement disorders have to do with very specific circuits in the brain and I have never heard of any reason to think these circuits would be affected by any dietary factor of this sort.

Surely the most likely thing is that the timing is just coincidence?

 

[Deltrus]

I've been struggling with lactic acidosis due to experiments with a certain novel protocol I've been trying out. I've found that hyperventilating and breathing deeply will rapidly kick you out of glycolysis and low blood ph. Perhaps you have a default slow breath rate which increases your baseline need for anaerobic glcolysis and thus increases baseline blood ph? My old protocol still stands, antioxidants will help.

 

[Comet]

Dear forum,

I have had CFS/ME for over 20 years.

Recently, after being on a probiotic called "Ultra Flora Balance" for 3 years, and not taking any other medications, I have developed rather serious tremors and a complicated movement disorder that has steadily progressed and gotten worse.

I am trying to find out if theoretically it is possible for probiotics to cause this type of damage to the CNS (Central Nervous System) and to cause an involuntary movement disorder?

My neurologist assures me it is impossible, but taking probiotics does make me very drowsy and seems to cause tingling in my muscles, and although it does have a very beneficial effect on my pain symptoms, I'm beginning to suspect it MIGHT be possible.

What do you think?

I get a terrible reaction to S. Boulardii. I get extremely agitated, nervous and then angry. Really angry. It's a terrible feeling. I've tried to take S. Boulardii on three different occasions, and each time I built up from agitation to getting a rage reaction to it. I've sworn off probiotics for a while because of it.

 

[msf]

Dear Womble,
I agree with your neurologist. There is absolutely no reason whatever to think that probiotics would have anything to do with a movement disorder. And even less to think it might have anything to do with lactic acidosis, which probiotics do not cause.

This is incorrect, or at the very least controversial: https://www.ncbi.nlm.nih.gov/pubmed/19917522

https://www.ncbi.nlm.nih.gov/pubmed/23462584

The fact that I (and I assume others) have a dramatic increase in the lactic acid feeling in the muscles upon taking probiotics suggests that this might not just occur in those with short bowel syndrome but also in those with ME, at least in some limited form.

 

[Jonathan Edwards]

This is incorrect, or at the very least controversial: https://www.ncbi.nlm.nih.gov/pubmed/19917522

https://www.ncbi.nlm.nih.gov/pubmed/23462584

The fact that I (and I assume others) have a dramatic increase in the lactic acid feeling in the muscles upon taking probiotics suggests that this might not just occur in those with short bowel syndrome but also in those with ME, at least in some limited form.

I cannot see any likelihood that events in children with short bowel syndrome are relevant to people with ME.

 

[msf]

Ok, but then the statement you made needed more qualifiers, I believe.

 

[Deltrus]

Unfiltered apple cider vinegar increases acetobacter which degrades lactate.

Of these, the genus Acetobacter is distinguished by the ability to oxidizelactate and acetate into carbon dioxide and water.

Potentially, if probiotics increase lactate too much, then this bacteria might dynamically increase in population until things are brought into balance.

Apple cider vinegar is a very common naturopath recommendation, I guess this is why.

 

[msf]

This is one potential solution to our problems: http://www.ncbi.nlm.nih.gov/pubmed/27014275

 

[Womble]

Dear Womble,
I agree with your neurologist. There is absolutely no reason whatever to think that probiotics would have anything to do with a movement disorder. And even less to think it might have anything to do with lactic acidosis, which probiotics do not cause. Involuntary movement disorders have to do with very specific circuits in the brain and I have never heard of any reason to think these circuits would be affected by any dietary factor of this sort.

Surely the most likely thing is that the timing is just coincidence?

Yes, you might be right, but since I stopped taking probiotics I no longer am out of breath all the time, and my tremors have improved.

Unfortunately, there is no way to prove that it was the probiotic that was to blame, because I started Prilosec Proton Pump Inhibitor at the same time as I stopped the probiotic, so maybe the Prilosec led to some anti-inflammatory benefits (which is being discussed in a different thread).

My brain fog has definitely improved since I stopped the probiotic and went on Prilosec, I can read about 4 times as much now.

I still take the probiotic once or twice a week, because it reduces the pain and helps me sleep, although I am now seeking substitutes to help me sleep. (also another thread)

Maybe the probiotic couldn't cause the movement disorder, but perhaps being on the wrong probiotic for years has not helped either.

CFS remains a mystery, but I think the stomach is heavily involved, and mistreating the stomach and gut issues can lead to a worsening of the encephalitis, ...

...what do you think?

 

[Womble]

This is one potential solution to our problems: http://www.ncbi.nlm.nih.gov/pubmed/27014275

I don't have the expertise to understand this article

Can anyone explain it?

 

[Womble]

It is possible that you are in a love-hate relationship with lactate. First, it prevents bad gut bacteria from thriving, but then it gets into the blood stream.


https://en.wikipedia.org/wiki/Lactobacillales
Two principal kinds of probiotic bacteria, members of the genera Lactobacillus and Bifidobacterium, have been studied in detail.[1][6]

I believe that with b1 and a multivitamin, you should be able to continue to use probiotics. Once you detox ammonia your digestion might improve as well. Just need to take low but constant amounts of meat and drink lots. Magnesium malate would also probably help with ammonia.

Yes, exactly, there is a love/hate relationship. Some benefits, quite possibly some harmful effects as well. Although there seems to be a disagreement in this thread as to whether the terrible movement disorder could have been caused by probiotic complications.

Your prebiotic theory may indeed be true, this subject is so complicated though, I feel like I am out of my depth.

Is there an expert in this area? I noticed that Dr. Sanjay seems to be a leading CFS researching who has focused on the gut and microbiome, but I haven't been able to get him to respond to my emails.

 

[Womble]

@Womble -- I'm shocked they work that way for you; Lactobacillus knocks me off my feet, makes me feel dizzy and awful and saps me of energy. It's almost like an instant PEM.



The fact that you feel awful after stopping one day certainly implies your dysbiosis is still out of control, and the Lactobacillus is standing with its metaphorical back to the wall fighting them off. Maybe it could use a little help.



-J

I'm not familiar with the term 'dysbiosis', but if it means terrible pain and feelings of nerve inflammation, then yes, I have it.

Many people I have spoken to are like you, they cannot even tolerate a probiotic in the first place.

I am seeking to find other remedies for my 'dysbiosis', which I will allude to in my next post.

 

[Womble]

This thread has received lots of good comments, thank you!

I have tried to respond to all of them, but I apologize if I missed anyone.

It is still hard for me to read for too long, so I am limited in the amount of analysis I can do or the amount of informative articles I can read.

I just wanted to mention one other crucial piece of information that I may have left out at the beginning:

My neurologist has also diagnosed me with a thyroid condition, Hashimoto's thyroid disorder.

I guess this was a crucial piece of info I left out. I mention it, because it could also be in large part a cause of the encephalitis, and the brain damage and movement disorder that has occurred COULD be a result of thyroid anti-bodies attacking the brain.

This might also be an important piece of the puzzle that has nothing to do with the stomach, I thought I'd mention it.

Womble

 

[msf]

I don't have the expertise to understand this article

Can anyone explain it?

Basically they gave the ´patients´ (furry ones in this case) the products of probiotics but not the probiotics themselves, which they suggested may be less problematic in the case of those with leaky guts (presumably because whole bacteria or their unwanted products won´t invade the bloodstream)

 

[Womble]

I just tried last night "Renew Life" Probiotic, and I had a terrible reaction to it.

This had supposedly 5 of the 'good' bacteria, and 5 bacteria i've seen in yogurt.

Why would this make me sick immediately?

Very strange, some strains make me sick right away, some relieve the pain, but the long term effects are still unknown.

 

[Womble]

UPDATE:

Guess there this not much more to say in this thread, but a few more things.

I tried a new probiotic that has 10 strains in it, and it made me 10 times as tired It also made my tremors worse. But I did feel slightly cleansed from it, but scared to take more.

Wondering if a probiotic in some sort of food form might be better.

I tried eating a bunch of different yogurts before I went to sleep, but it had no effect on my pain at all.

Im seeing a doctor about my thyroid soon, so maybe that will help.

Any other ideas?

 

[blackongold]

I get a terrible reaction to S. Boulardii. I get extremely agitated, nervous and then angry. Really angry. It's a terrible feeling. I've tried to take S. Boulardii on three different occasions, and each time I built up from agitation to getting a rage reaction to it. I've sworn off probiotics for a while because of it.

I cannot tolerate S. Boulardii either, I would guess because I am sensitive to yeast per some recent test results. I believe this sets off my immune system and causes an inflammatory response, which would explain the brain fog and skin issues that follow a day or two after I take it. I tolerate other strains of probiotics, but avoid anything in the Saccharomyces family.

Food for thought.

 

[Comet]

I cannot tolerate S. Boulardii either, I would guess because I am sensitive to yeast per some recent test results. I believe this sets off my immune system and causes an inflammatory response, which would explain the brain fog and skin issues that follow a day or two after I take it. I tolerate other strains of probiotics, but avoid anything in the Saccharomyces family.

Food for thought.

Interesting. I either didn't know or don't remember that S. Boulardii is a yeast. Thanks for the reminder. Just did a little googling too.

I've been afraid to get back to probiotics, since the intense anger reaction to S. Boulardii (I tried it on three different occassions - yeah, took that many tries to figure it out! ), but maybe your update will give me a push in the right direction.

 

[Womble]

UPDATE:

Still on the probiotics, and my nerve damage is getting much worse.

Desperately want to get off of these probiotics, but can't sleep without them!

I've asked before, but any ideas of things I can take instead?

Things that effect my stomach seem to reduce the nerve pain for some unknown reason, so maybe something else for the stomach would help me?

Any new ideas?