Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Neurological reaction to probiotics - help please

Discussion in 'Neurological/Neuro-sensory' started by JN917, Nov 29, 2015.

  1. JN917

    JN917

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    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
     
  2. xrayspex

    xrayspex Senior Member

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    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.....
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    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.
     
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  4. xrayspex

    xrayspex Senior Member

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    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
     
  5. halcyon

    halcyon Senior Member

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    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.
     
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  6. Crux

    Crux Senior Member

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    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.
     
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  7. Gondwanaland

    Gondwanaland Senior Member

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    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
     
  8. xrayspex

    xrayspex Senior Member

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    "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?
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Check out the threads on prebiotics, probiotics, resistant starch, tryptophan, kynurenine, etc.
     
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  10. Crux

    Crux Senior Member

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    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.
     
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  11. JN917

    JN917

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    Thank you so much!
     
    Crux likes this.
  12. JN917

    JN917

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    Thank you so much! This is very helpful. I have seen some of his work before, but not these particular links.
     
  13. Gondwanaland

    Gondwanaland Senior Member

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    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.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    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.
     
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  15. JN917

    JN917

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    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.
     
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