Potentially harmful effects of probiotics?

[Womble]

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?

 

[adreno]

I suppose it's possible to develop some degree of lactic acidosis from certain probiotics, which might explain some symptoms of yours. You could try taking some bicarbonate and see if that improves things.

 

[JaimeS]

I, too, wondered if increased symptoms were due to increased lactic acidosis... but when I bought probiotics that supposedly would not increase lactic acid, the result was the same.

The conclusion I came to personally was that we're overreacting to an increase in something very, very general -- maybe even something as general as bacterial LPS. It may cause problems no matter what bacteria you're ingesting.

That is my own personal conclusion, and I don't have any evidence to support it, save that no matter what bacteria I ingest, the result is the same, and nearly all antibiotic regimens make me feel better. It's a thought, not a certainty.

-J

 

[Crux]

There are reports of people getting lactic acidosis from overgrowth of lactic acid bacteria.

I've had many negative symptoms from trying various probiotics. This is more in recent years.

Some months ago, a new member started a thread about worsened symptoms from probiotics.

She has MS, and has been in remission. I remember she had a return of optic neuritis after
taking a probiotic.

 

[JaimeS]

@Crux , there was definitely a thread on that here, but I think it was @Hip who was discussing probiotics? There were several people on that thread who stated that they became more ill no matter what probiotic they took... I can't find the thread now, though.

-J

 

[Crux]

@JaimeS ,

Here's the one I was writing about. ( I was the one who informed her about the optic neuritis.)
http://forums.phoenixrising.me/inde...cal-reaction-to-probiotics-help-please.41539/

 

[JaimeS]

Hmm, the one I was talking about is like, twenty pages long.

 

[Womble]

I do have shallow breathing and muscle weakness, but my overall degeneration in the past 3 years has been severe tremors that have spread to my entire body and have made performing motor movements very difficult.

This is a severe condition that my neurologist is concerned could be something like MS, although I havent received a diagnosis yet.

That sounds too extreme to be lactic acidosis, no?

 

[Crux]

Most of the information about d-lactic acidosis is about short bowel syndrome, but there are bits about elevated d-lactate in ME/CFS. It's just under-reported, tested, etc.

The symptoms are extreme.

http://www.cortjohnson.org/blog/2015/10/12/lactic-acidosis-causing-cfs-fm-symptoms/
https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/06/Parrish-September-15.pdf
http://oley.org/?page=DLacticAcidosis

 

[Crux]

Some discussions here on PR:

http://forums.phoenixrising.me/index.php?threads/lactic-acidosis-from-probiotics.17564/
http://forums.phoenixrising.me/inde...-the-same-symptoms-as-d-lactic-acidosis.8159/

 

[Womble]

I don't see tremors or movement disorder on that first list of symptoms, and the second article is very long and complicated.

I have too much brain fog to read long articles, so I would make a request to answer in a brief format as well, to make it easier for me.

Is it theoretically possible that a probiotic used over many years could cause tremors that spread and get worse to the point of incapacitating someone?

Or if you prefer, does lactic acidosis involve such a possibility?

 

[Crux]

https://en.wikipedia.org/wiki/Acidosis

". Signs and symptoms that may be seen in acidosis include headaches, confusion, feeling tired, tremors,sleepiness, flapping tremor, and dysfunction of the cerebrum of the brain which may progress to coma if there is no intervention.[2]"

 

[Womble]

Okay, thanks.

But what evidence is there that Acidosis is linked to use of probiotics?

Extremely important question!

And is there any evidence that proprietary super-strain probiotics may be especially harmful in this link to Acidosis?

 

[JaimeS]

@Womble - not that I'm aware of -- just subjective patient reports. However, when I used pubmed and searched...

...I came up with subjective physician reports (i.e. case studies lol). http://www.ncbi.nlm.nih.gov/pubmed/19917522

I suppose it's possible that we all have short bowel syndrome! (Riiiiight.) I stand by my initial hypothesis that we are reacting to everything bacterial, in the absence of other evidence. Happy to change my mind if someone else presents something different.

-J

 

[Womble]

I suppose it's possible to develop some degree of lactic acidosis from certain probiotics, which might explain some symptoms of yours. You could try taking some bicarbonate and see if that improves things.

Okay, so is "bicarbonate" the only treatment for lactic acidosis?

If I'm taking my probiotic at night, should I also take this bicarbonate before I go to sleep, to prevent lactic acid building during the night?

 

[adreno]

Okay, so is "bicarbonate" the only treatment for lactic acidosis?

If I'm taking my probiotic at night, should I also take this bicarbonate before I go to sleep, to prevent lactic acid building during the night?

Well, taking bicarbonate was just meant as a test, since it's alkaline. If it helps, you might be dealing with lactic acid overload. A longer term solution would be to address the gut dysbiosis.

 

[Womble]

How would I address gut dysbiosis without probiotics?

Right now, I can't sleep without probiotics, but I want to stop taking them because of all the negative reports on the potentially harmful effects of super strains of lactobacillus acidophilus, that have been mentioned.

I managed to stop taking them for one evening, and I woke up feeling the best I've felt in ages.

But the next night, I was in too much pain and ended up taking them again.

Any idea how I can sleep without them with some natural substitute? I need to reduce the pain and inflammation in some natural way.

 

[JaimeS]

@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.

From what I've seen, if you can tolerate them, the continuum goes antibiotics --> probiotics ---> prebiotics. This is from a lot of assimilating I've done on PR rather than a single source. It seems that if you can't tolerate prebiotics very well, go back to probiotics, and if you can't tolerate probiotics very well, go back to antibiotics. Or, if that's too scary due to their side effects, natural antimicrobial or potent anti-inflammatory naturally occurring plant chemicals, such as goldenseal extract, garlic, and turmeric.

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.

And if I 'sound' like I'm saying all of this with confidence, that's only because you can't see my face. This is a relatively shiny new theory of mine. Here is my rationale: if you are heavily infected and you take prebiotics without having first gone through a regimen of probiotics, that feeds the infection, maybe preferentially in comparison to your good remaining bacteria. If you try probiotics with a raging infection, your immune system may attack the 'good' bacteria, or there may not be enough resources for them to find a nice, homey space of gut wall to settle down and raise the kids, because the rowdier neighbors have taken over the entire town. Therefore, in immunocompromised individuals, kill it with fire, first. Then the rest.

Personal experience: I was unable to tolerate probiotics at all before antibiotics. Now I have found a supplement that does not make me sicker, and even the ones that used to set me off terribly just make me feel a little 'off'.

-J

 

[Deltrus]

Okay, thanks.

But what evidence is there that Acidosis is linked to use of probiotics?

Extremely important question!

And is there any evidence that proprietary super-strain probiotics may be especially harmful in this link to Acidosis?

Align is a probiotic that aims to increase lactic acid and make the gut less habitable to anaerobic bacteria. Contains b infantis, a strain of b longum as the only ingredient.

 

[Deltrus]

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.

I suggest b1 in doses of like 500mg - 1g. It will also potentially help you if you have another source of acid such as failure of amino acid metabolism.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388689/



https://en.wikipedia.org/wiki/Lactobacillales
"Probiotics are products aimed at delivering living, potentially beneficial, bacterial cells to the gut ecosystem of humans and other animals, whereas prebiotics are indigestible carbohydrates delivered in food to the large bowel to provide fermentable substrates for selected bacteria. Strains of LAB are the most common microbes employed as probiotics. Two principal kinds of probiotic bacteria, members of the genera Lactobacillus and Bifidobacterium, have been studied in detail.[1][6]

Most probiotic strains belong to the genus Lactobacillus. Probiotics have been evaluated in research studies in animals and humans with respect to antibiotic-associated diarrhoea, travellers' diarrhoea, pediatric diarrhoea, inflammatory bowel disease, and irritable bowel syndrome. In the future, probiotics possibly will be used for different gastrointestinal diseases, vaginosis, or as delivery systems for vaccines, immunoglobulins, and other therapies.[7]"

So yeah lacto and bifido produce lots of lactic acid and that is primarily why they are put in probiotics.

Another thing to keep in mind once you get rid of aciduria is that aciduria increase ammonia by a ton, so you will need to drink tons of water and supplement with b vitamins in order to detox it. Also don't eat much protein for a while as that increases ammonia. But eat a bit of meat because you need certain amino acids to fuel the urea cycle in order to detox ammonia.

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.