• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Neurological reaction to probiotics - help please

Messages
4
Location
USA
I am wondering if anyone might be able to help me figure out which questions I need to be asking...

I have not had a diagnosis of CFS but fatigue has definitely been a huge part of my journey. I have 2 diagnosed autoimmune conditions and one other suspected autoimmune issue. I have been searching for folks to possibly have wisdom to help me and I was so happy when I came across this forum.
I started strict gluten free eating 12 years ago due to suspected celiac. I have been using a Strict autoimmune protocol (AIP) diet for almost 2 years to address MS-diagnosed 3/2014. I Had to reduce organ meat due to Hereditary Hemochromatosis diagnosis/high iron in 8/2015. I Also had to reduce TH2 stimulating compounds after Hashimoto's dx in 9/2015 b/c they were triggering Hashi's flares. I do not take any immune-suppressing drugs and no steroids. I take Vitamin D3 and also natural desiccated thyroid medicine which help a lot. When I have flares, I deal with fatigue and it can be very debilitating, however In general, I am doing quite well and have been able to reduce 95% of my MS symptoms with nutrition, gentle exercise, stress reduction and physical therapy.

In the last few months, I have really been focusing on gut health in addition to the other things that I do for my health. In addition to taking probiotics I ferment a lot of veggies and drinks. We do vegetable ferments, ginger bug and kombucha here at home. So, I have been taking Orthomolecular OrthoBiotic powder probiotic as a filler in my thyroid medication without a problem (just a tiny bit of reaction to the tiny bit of cellulose that they use). I also take some on most days that is separate from the filler in my thyroid meds. The amount that I use is probably something like .25 or .5 billion CFU's per day (not a lot, I know). It includes

Bifidobacterium bifidum
Bifidobacterium lactis
Lactobacillus acidopholus
Lactobacillus paracasei
Lactobacillus plantarum
Lactobacillus rhamnosis
Saccharomyces boulardii

I do well with the Orthomolecular at very small doses so far although I can tell I am reacting a bit to the little bit of filler in this product. I cannot take anything with cellulose in it b/c I react to the cellulose very badly (neurological issues, mood changes, and fatigue and vertigo symptoms).

Well, I have been concerned about the fillers in the Ortho Molecular probiotic and I found a probiotic by Gutpro that has no fillers at all. It is way more concentrated and they have special measuring spoons to make sure you don't take too much. I took a tiny amount that was about 3 billion CFU's. It includes the following strains.

Bifidobacterium bifidum
Bifidobacterium breve
Bifidobacterium infantis
Bifidobacterium lactis
Bifidobacterium longum
Lactobacillus gasseri
Lactobacillus plantarum
Lactobacillus salivarius

Day 1: Within 2 hours of my first dose of the Gutpro, I experienced visual disturbances in my right eye that included flashing lights, colors, and blocked vision. The disturbance lasted for 30 minutes and then went completely away and my vision was restored.

Day 2: The 2nd day that I took Gutpro (I took it in the evening each time)... the following day mid-day, my MS - wobbly leg, tremors and shakes returned to a mild degree. then, by the evening the symptoms had dissipated.

Day 3: I took the Gutpro probiotic the third evening and then the following day in the morning I could not walk well, wobbly leg, tremors, etc. Very intense and very puzzling. Because the symptoms were so intense (and because this strategy had worked previously when I had TH2 triggered reactions - probiotics being an immune modulating compound...they seemed to work previously) I took some of the orthomolecular probiotic (the one that I have not had reactions to) to try to help my immune system/central nervous system calm down. It definitely helped a lot. By 3pm that 4th day, I had no symptoms and went for a walk with my son without a cane or any assistance.

During these 3 days, I did not change anything else. Food, thyroid meds, vitamin D, all the same.

Day 4: I stopped taking the Gutpro probiotic and took the old one (Orthomolecular) about 3 times. I began to have the neurological symptoms again.

Please, Could you help me understand why my reaction was neurological? I am trying to do my own research to understand. I do believe that probiotics are helpful and I definitely feel better with the orthomolecular brand (this one is also much less concentrated/potent than the Gutpro - not sure if that had something to do with it). Why would my reaction be so drastic? And why would my symptoms be neurological?

Thank you so much. I am grateful for any help or suggestions or ideas that you might have. I am also open to ideas on where to post this if this is not the best place to share/ask.

Thanks, Julia
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
I have heard that from other sensitive friends that sometimes they suspect probiotics to cause symptoms
It had never dawned on me they might and I usually take probiotics like s boulaardi without a thought
but its possible some of them make me feel worse but it just wasnt obvious to me
Many supplements do make me feel bad

I even got mutafluor fora while from germany to US...didnt notice any negatives...however it seems probable that they lost potency with the long trip not being refrigerated

good luck with that, I know how frustrating it is to figure it out, I have autoimmune stuff too and sometimes I feel like my body is rejecting everything....seems like rice and butter is my one safe thing these days.....
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Lactobacillus acidophilus may not be a good idea, as we tend towards excessive acidity already - at least some of us.

Many neurotransmitters are made in the gut, and for example the conversion of tryptophan to serotonin can be adversely affected by diet and dysbiosis, switching instead to conversion to kynurenine.

It may be better to take prebiotics and/or to modify the diet rather than taking probiotics.

There are threads on prebiotics, probiotics, resistant starch, tryptophan, kynurenine, etc.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
MeSci--that is interesting about tryptophan could turn into something else
I was taking tryptophan in late 80s to sleep during the time that scandal broke out of it being contaminated in china factory I think---another variable that could have been tied into my demise around then but not foremost culprit--anyway digress.....what is kynureinine known for?

also, I forgot to mention the only really obvious adverse effect I have had from gut stuff was prebiotic--prescript assist pro that i tried this year from an integrative med doc, 42$ lost on that....it does help with regularity but it worsened my pain and fatigue and malaise
 

halcyon

Senior Member
Messages
2,482
Many neurotransmitters are made in the gut, and for example the conversion of tryptophan to serotonin can be adversely affected by diet and dysbiosis, switching instead to conversion to kynurenine.
Serotonin produced by enterochromaffin cells in the gut has nothing to do with CNS serotonin manufactured by neurons as far as I understand. It's simply dumped into the lumen to help stimulate peristalsis.
 

Crux

Senior Member
Messages
1,441
Location
USA
Please, Could you help me understand why my reaction was neurological? I am trying to do my own research to understand. I do believe that probiotics are helpful and I definitely feel better with the orthomolecular brand (this one is also much less concentrated/potent than the Gutpro - not sure if that had something to do with it). Why would my reaction be so drastic? And why would my symptoms be neurological?

Folks with MS and ME tend to have elevated lactate in the blood, at times. This can be caused by having too many lactic acid producing bacteria.

http://www.sciencedirect.com/science/article/pii/S0925443914000921

I experienced visual disturbances in my right eye that included flashing lights, colors, and blocked vision. The disturbance lasted for 30 minutes and then went completely away and my vision was restored.

This is symptomatic of optic neuritis. It can happen in a number of conditions, including MS.

My suggestion would be ; please be cautious with probiotics. Their products, or metabolites can be damaging to nerves, tissues, organs,etc.
 

Gondwanaland

Senior Member
Messages
5,092
In 2013 when I took L. acidophilus I had the same problem on my knees and could not stand (wobbly legs). Later I found out that I was too acidic (magnesium and calcium deficiency), plus I had too many histamines in my gut (+/+DAO). Avoiding acidophilus, taking D-Lactate free probiotics and supplementing the alkalizing electrolytes helped my general condition, but I still avoid taking probiotics frequently since I don't seem to benefit from them at all. Same thing with prebiotics.

At selfhacked.com there are lists of the immunostimulating effects of specific probiotics, but I think this is just too much to keep track of.
http://selfhacked.com/2014/07/17/supplements-people-th1-dominant/#SupplementsDrugs
http://selfhacked.com/2014/07/18/supplements-people-th2-dominant/#Top_13_Recommendations
http://selfhacked.com/2014/10/27/th17/#Top_Supplements_to_Inhibit_Th17IL-17
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
"My suggestion would be ; please be cautious with probiotics. Their products, or metabolites can be damaging to nerves, tissues, organs,etc"

wow I had no idea Crux and gondwanaland

I figured probiotics always prudent because the gut is such an important part of immune, didnt realize there is risk

so what is safest way to populate gut with right stuff? esp after antibiotics?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
"My suggestion would be ; please be cautious with probiotics. Their products, or metabolites can be damaging to nerves, tissues, organs,etc"

wow I had no idea Crux and gondwanaland

I figured probiotics always prudent because the gut is such an important part of immune, didnt realize there is risk

so what is safest way to populate gut with right stuff? esp after antibiotics?
Check out the threads on prebiotics, probiotics, resistant starch, tryptophan, kynurenine, etc.
 

Crux

Senior Member
Messages
1,441
Location
USA
so what is safest way to populate gut with right stuff? esp after antibiotics?

This is also my question. I just don't know.

There are many studies supporting many microbes as beneficial, and some others that implicate the same ones as infectious.

Part of the problem is the population of them. There shouldn't be too many, or too little.

Another problem is that since we are hosts with immune dysfunction, we tend to be susceptible to overgrowths of pathogenic and beneficial microbes.

If we already have some overpopulated guts, etc., even Prebiotics can increase their numbers, causing more inflammation with their acidic metabolites.

This is now a highly researched topic, so, there's hope.

One advantage we have, is that we're used to being cautious and observant, using the empirical method.
 
Messages
4
Location
USA
Folks with MS and ME tend to have elevated lactate in the blood, at times. This can be caused by having too many lactic acid producing bacteria.

http://www.sciencedirect.com/science/article/pii/S0925443914000921



This is symptomatic of optic neuritis. It can happen in a number of conditions, including MS.

My suggestion would be ; please be cautious with probiotics. Their products, or metabolites can be damaging to nerves, tissues, organs,etc.

Thank you so much!
 
Messages
4
Location
USA
In 2013 when I took L. acidophilus I had the same problem on my knees and could not stand (wobbly legs). Later I found out that I was too acidic (magnesium and calcium deficiency), plus I had too many histamines in my gut (+/+DAO). Avoiding acidophilus, taking D-Lactate free probiotics and supplementing the alkalizing electrolytes helped my general condition, but I still avoid taking probiotics frequently since I don't seem to benefit from them at all. Same thing with prebiotics.

At selfhacked.com there are lists of the immunostimulating effects of specific probiotics, but I think this is just too much to keep track of.
http://selfhacked.com/2014/07/17/supplements-people-th1-dominant/#SupplementsDrugs
http://selfhacked.com/2014/07/18/supplements-people-th2-dominant/#Top_13_Recommendations
http://selfhacked.com/2014/10/27/th17/#Top_Supplements_to_Inhibit_Th17IL-17
Thank you so much! This is very helpful. I have seen some of his work before, but not these particular links.
 

Gondwanaland

Senior Member
Messages
5,092
The things I took that had the most beneficial impacts, besides the MB12, were minerals. Magnesium, Manganese, Boron, Copper, Calcium. Mg in high doses, the other ones in tiny doses. Unfortunately after reaching the tipping point I went back to starting point with all of them.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Different people probably need different things, depending on what minerals and gut flora are deficient, depending on their diets, etc.

It may be useful to have tests for leaky gut and SIBO (short-intestinal bacterial overgrowth), to get a better idea of what's needed.

I suspect that I have SIBO at times as the natural antibiotic grapefruit seed extract has helped sometimes. My intention has been to reduce the overgrowth and then hope that an appropriate diet will enable the gut to correct the imbalance over time. It often seems to have worked, but not always, but I am using guesswork.

Sometimes an error in diet or supplements seems to cause a recurrence of my gut problems (usually looseness), and I have to figure out what the cause is and correct it! The latest error seems to have been olive oil, which I am trying to rescue my loose bowels from at the moment.

Re the effect on mood, this looks like a good article. I think that others are cited in various threads.
 
Messages
4
Location
USA
So, in talking with the owner of custom probiotics (www.customprobiotics.com), I learned that L. Acidophilus and L. Plantarum contribute to D-lactate acidosis. I have not been tested or had any labs done, but I figured that I would try their product. The owner sent me their version of D-lactate free probiotic. I am testing and hoping that it will be okay.