The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Strange reaction to probiotics, any ideas?

Discussion in 'General ME/CFS Discussion' started by mrquasar, Aug 9, 2017.

  1. mrquasar

    mrquasar Senior Member

    Messages:
    214
    Likes:
    799
    Houston, TX USA
    Hi everyone,

    So I am still undiagnosed after many tests and in the moderate-to-severe symptom range. My symptoms overlap about 80% with ME/CFS, but the quality and variability of the brain fog I experience is a significant difference. And the most bizarre part is that it is dramatically affected by probiotics and cultured foods.

    Whenever I take probiotics or eat certain cheeses, yogurt, etc., after 15-30 minutes I get a gradual feeling of being drugged up. This sensation continues to worsen over the next several hours, and can take a couple days to fully wear off.

    If I manage to avoid these foods, I still have a moderate level background of brain fog, fatigue, etc. but it doesn't spike suddenly; it's fairly stable. But it's still significantly disabling.

    I've speculated about gut dysbiosis. First I considered candida, and managed to get prescribed an antifungal, but it had no effect. I've also read up on SIBO, but I don't have bloating, belching, or other digestive issues. Wouldn't this rule SIBO out? Recently I got tested for mycoplasma, still waiting on the results. I'm fairly sure it's not celiac disease because I even have this reaction with probiotic pills, and I never have it after eating bread or pasta. I've also tried elimination diets (no dairy, no sugar, no gluten, etc.) with no effect.

    Could this be some other type of bacterial infection? Something auto-immune? My ANA was tested and was negative, along with the standard CBC tests. I'm currently getting my IgG, IgA, and IgM levels tested.

    I'm really at a loss of what to do next. My only other idea would be to try an antibiotic to see if it had any effect. But what baffles me is that even after countless hours searching the Internet, I haven't been able to find anyone else who's experienced this set of symptoms and reactions. I can find no medical documentation of this. Auto-fermentation syndrome is pretty similar but it involves feeling drunk and the culprit is yeast, which would been cleared by the anti-fungal. The sensation I experience is much more like a narcotic than alcohol (I can say this because I've drunk alcohol and took Vicodin after a surgery years ago).

    Please let me know if you guys have any ideas for further tests, treatments, or conditions that I should consider.

    Thanks!
     
    Richard7 and pattismith like this.
  2. PDXhausted

    PDXhausted Senior Member

    Messages:
    254
    Likes:
    341
    NW US
    Do you get it with any other high histamine foods, like sausage for example?

    I developed a severe dairy sensitivity with similar symptoms as you after taking a long course of antibiotics, but my dairy symptoms come on later- when it hits my colon, so perhaps different than what you're dealing with. I also later developed SIBO and SIFO. and have a lot of bloating and belching, so it's hard to tell what's what. Getting a foggy fatigued feeling from food has been one of my SIBO/SIFO symptoms that seems to come from having a leaky small intestine from the microbial damage. Some of it was fixed for me after a course of rifaximin, nystatin and oregano oil. I do think that I had symptoms of SIBO before I had the full blown bloating and belching, so perhaps it's something that comes on gradually.

    I also recently developed MCAS or histamine intolerance and get pretty immediate symptoms from high histamine foods as well as probiotics, so that stuck out in my mind as a possibility.
     
  3. mrquasar

    mrquasar Senior Member

    Messages:
    214
    Likes:
    799
    Houston, TX USA
    What were these immediate symptoms you experienced?
     
  4. PDXhausted

    PDXhausted Senior Member

    Messages:
    254
    Likes:
    341
    NW US
    Well I believe MCAS symptoms can range as a variety of different things... My personal symptoms are like allergy symptoms, itchiness and kind of a doom feeling. I also break out into hives and get very swollen lymph nodes around my jaw and throat, though that's more a delayed reaction. It takes several days for my rash/hives to go away and my swelling to go down. Other people can get more like anaphylaxis symptoms.

    I imagine the "drugged" feeling could also come from mast cell degranulation as well, though I'm not sure that that's my personal experience.

    I get a drugged feeling quite often from my gut, but it's hard to say if it's stemming from SIBO or MCAS or dysbiosis or fungus in my case. I do have elevated ammonia so I believe that's what causes mine, but I haven't been able to track down why I have elevated ammonia! So anyway maybe none of this is helpful, but just thought I'd share my experience. :)

    I will say, the one thing I've found that has been a life saver for that foggy drugged feeling is taking activated charcoal. It took maybe like a week or two of a small daily dose before I started seeing a big difference, but it hugely improved my quality of life.

    The problem with the charcoal though, is I think it kind of "dried" out my gut which made the SIBO/SIFO flourish, and I've been plagued with SIBO ever since. So if you try it, be careful with it. But I don't regret taking it, because the few months I was on it, my brain was so clear and sensory sensitivities so reduced.
     
    pattismith likes this.
  5. erin

    erin Senior Member

    Messages:
    746
    Likes:
    2,091
    Last time I drunk kefir I had a massive vertigo attack. I'm avoiding all sorts of probiotics and dairy too. I found out I'm allergic to dairy or lactose or both!
     
    pattismith likes this.
  6. JaimeS

    JaimeS Senior Member

    Messages:
    3,190
    Likes:
    11,781
    Mid-Ohio Valley, United States
    Common, for us. I get neuro symptoms from probiotics that are... remarkable. Last time my vision blacked out in one eye and my pupil went unresponsive! :nervous: And I am now pretty darned minor so far as symptoms are concerned. It doesn't seem to matter.

    I agree with @PDXhausted that activated charcoal might help, but I would certainly suggest avoiding food with probiotics first and foremost! I find even probiotics in a pill cause the same weirdness... However, I do take Dr Ohirra's probiotics, which are enteric coated and only break down far down the line. They seem to be not just okay but actively helpful. I tried a lot of other probiotics, which all had neuro effects...

    As far as hypotheses as to why on earth? I'll go for "it works its way up the vagus nerve". I'm just throwing a dart at a dart board, though, blindfolded, when it comes to theories on this one.
     
    lafarfelue and Richard7 like this.
  7. pattismith

    pattismith Senior Member

    Messages:
    619
    Likes:
    853
    Did you checked your L-Lactates and D-Lactates after probiotic intake?

    I suspect my problems after food intake (dizziness, fatigue, brain fog) to be related to D-lactates and endotoxins produced in my small intestine.

    I monitored my L-lactates after food intake, and they show a peak one hour after.

    If I take antibiotic I can see very quickly the effect:

    with azythromycin, my L Lactates raise and have a peak at 1 hour (Azythro kills some enterobacterias, but not lactic acid ones)

    With Amoxicilline/clavulanic acid, my L-lactates are going down at 1 hour (Amoxicilline kills lactic acid bacterias)

    So now I try to kill my bad lactic acid bacterias and to bring new ones that doesn't produce D-lactates.

    I found a probiotic with only Bifidobacterium bacterias, and do my own culture in my home yoghurt maker.

    To check if you have a problem with endotoxins in your gut, you can take a big amount of activated charcoal (4 gr) and see if it removes your syndrom.

    I did this test and was very tired for 7 hours, then my syndrome disappear suddenly and I felt NORMAL for about 24h00.

    It was the first time I was feeling normal for such a long time (in fact I can't remember when I felt that way before!)
     
    Last edited: Aug 9, 2017
    MastBCrazy likes this.
  8. JaimeS

    JaimeS Senior Member

    Messages:
    3,190
    Likes:
    11,781
    Mid-Ohio Valley, United States
    I'm familiar with the lactate supposition, but the Ohirra's contains many of those same, lactate producing bacteria as the ones that make me sick. It makes me think that's not the deciding factor.
     
  9. Richard7

    Richard7 Senior Member

    Messages:
    536
    Likes:
    956
    Australia
    I have always looked at the Dr Ohhira probiotics and assumed that it would have very low counts of active bacteria and therefore be pretty usless.

    But evidence trumps theory obviously.

    I wonder if the deal is that the bacteria produce lots of bacterioncins and other byproducts during the long fermentation process.
     
  10. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Hi @mrquasar,

    Do the probiotics you take contain any Aspergillus derived ingredients?

    We were discussing possible allergy to fungus derived ingredients in another thread.

    I just googled cheese and aspergillus, but didn't check the pages that came up, but just wondering if this might be relevant because of your mould exposure.

    I've had mould exposure too, and later had a positive skin prick test to aspergillus.

    Years ago I saw some sites that suggested casein in dairy can have an opioid type of effect in some people, but have no idea if there is any evidence to back that up.

    Also, I think cheese is high histamine, isn't it? And some probiotics also, so you could look at trying a different brand that is specifically for people with histamine issues, to see if that makes a difference.
     
    PDXhausted and mrquasar like this.
  11. JaimeS

    JaimeS Senior Member

    Messages:
    3,190
    Likes:
    11,781
    Mid-Ohio Valley, United States
    900 million CFU plus about a half a gram of fermented miscellany per pill. I know others may have billions, but I think it mostly matters whether or not it reaches the gut intact. I think their real claim to fame -- apart from the fermented miscellany -- is the design of the pill itself. It helps my digestion without giving me neuro issues, which at least implies that it reaches the large intestine mostly intact, but still manages to be mostly dissolved by the time it, uh, leaves.
     
  12. pattismith

    pattismith Senior Member

    Messages:
    619
    Likes:
    853
    Ohirra's contains Lactobacillus Acidophilus, which seems the worst for most of us because producing lot's of D-lactates, but it contains also many super lactic bacterias like Bifidobacterium Breve and Lactobacillus Fermentens. So it may be that the good lactic bacteria in it are growing better in your gut than the "bad" ones....
     
  13. JaimeS

    JaimeS Senior Member

    Messages:
    3,190
    Likes:
    11,781
    Mid-Ohio Valley, United States
    I'm just not sure about the lactate-production thing being an issue. I've seen it hypothesized here but haven't seen anything convincing that proves that those bacteria are the problem.
     

See more popular forum discussions.

Share This Page