The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Adverse reaction to probiotics (histamine intolerance?)

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by MarbleWarbler, Jul 7, 2016.

  1. MarbleWarbler

    MarbleWarbler Seeking knowledge

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    Hi all,

    First post here, please let me know if this would be better posted elsewhere. I am new to navigating these forums.
    I've done a brief search to see if anyone else has posted about this before and have searched google extensively regarding adverse reactions to probiotics but have found little info.

    The one bit I have to go on is about histamine intolerance talked about here.
    https://www.bulletproofexec.com/why-yogurt-and-probiotics-make-you-fat-and-foggy/

    I have found consistently that taking probiotics causes a host of adverse reactions for me. Initially I thought it was some form of SIBO, but I am not 100% sure of this theory. The histamine intolerance idea seems plausible to me.

    Every time I take a general probiotic (experimented with strengths ranging from 5 billion CFU to 50 billion CFU and many different brands) I experience a crash in mood and energy, an increase in brain fog, an increase in self-hating/low self-esteem thoughts, an unnaturally high appetite with a strong craving for carbs and sugars as well as moderate to severe bloating at every meal.
    All in all I generally feel noticeably worse off physically and have moderate to severe negative effects to my mood and mental functioning.

    If I stop the probiotic and take herbal antibacterial such as oregano oil or take antibiotics such as rifaxamin I see a clearance of symptoms within a few days. The carb/sugar cravings go away completely and I have a normal appetite again. Mood symptoms will improve and bloating/gas at meals goes away completely.

    I have tried taking the probiotic called "Align" to good effect. It only has one strain, B. Infantis, which is supposed to degrade histamine.

    Has anyone else experienced these sort of consistent and predictable adverse reactions to probiotics? If anyone has any research or input that could help me figure out what is going on it would be greatly appreciated. As it stands right now I am confused and frustrated with my body's reaction to probiotics which nearly all research I've read shows should be good for me.


    As some extra background about me:

    I have tried treating myself for candida overgrowth, SIBO, and tried many different diet changes including FODMAPS. I have also tried following the recommendations of the book "Clean Gut" and "Brain Maker".
    I eat generally healthy diet although not perfect. I avoid gluten and dairy and refined/processed sugars as much as possible. I have had temporarily good results from "Clean Gut" but they did not last.

    I am a 24 year old male. 6' and 175lbs. I go to the gym 3-5 times per week and do a combination of weight training and cardio. I have struggled with depression and anxiety, specifically OCD throughout my life as well as issues with extreme apathy, emotional flatness, anhedonia, and lack of motivation.
    I am attempting to self treat my issues through nutrition, exercise, and natural supplements.
    I have done genetic testing with 23andme and am attempting to better understand the methylation cycle.

    The results of importance from my methylation profile are as follows:

    VDR Taq rs731236 AA +/+

    MTHFR C677T rs1801133 AG +/-

    MTHFR A1298C rs1801131 GT +/-

    MTR A2756G rs1805087 AG +/-

    MTRR A66G rs1801394 AG +/-


    From my detox profile notable results are:

    CYP1B1 L432V rs1056836 GG +/+

    CYP1B1 R48G rs10012 CC +/+

    CYP2C19*17 rs12248560 CT +/-

    SOD2 A16V rs4880 GG +/+

    NAT2 R197Q rs1799930 AG +/-
     
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  2. Bansaw

    Bansaw Senior Member

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  3. Timaca

    Timaca Senior Member

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    Hi~
    I seem to have a histamine intolerance and I also don't tolerate a lot of probiotics. I have a blog that talks about my food intolerance issues (including histamine). There is a lot of info on the Resources page of my blog.

    Recently, I've found two probiotics that I tolerate. Ideal Bowel Support 299v by Jarrow Probiotics, and the Baby-Dolphilus also by Jarrow. These have helped my intestinal pain and heartburn a great deal. I still deal with some GI bloat..... I do not have SIBO (breath test negative).
     
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  4. Timaca

    Timaca Senior Member

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    If Align has helped you, do you keep taking it? If not, why not? Align seems to help with the GI bloat (have tried it twice now) but I've also had some pretty significant CFS reactivations around the same time. Not sure if they are associated, but I am hesitant to try it again...... would like to....but a bit afraid to.....
     
  5. msf

    msf Senior Member

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    I´m not sure people on this forum will be able to help much, since I believe their intolerance of probiotics is linked to their ME, whereas you do not seem to have ME. One of the reasons some people with ME have problems with histamine may be due to having been infected with Lyme at some point. Another reason people with ME have problems with probiotics is because of leaky gut. I guess you could have either of these problems without the associated ME, but it could equally well be something else.

    I can´t describe what the histamine reaction feels like, since I do not believe I have histamine problems, but the leaky gut phenomenon is characterized by disrupted sleep, increase in pain throughout the body (at least partially caused by an increase in lactic acid), and a general malaise.
     
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  6. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
  7. MarbleWarbler

    MarbleWarbler Seeking knowledge

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    I have continued to take the Align on and off as well as Jarrows brand Saccharomyces Boulardii. Both have seemed to be helpful in reducing bloating at meals and curving excessive appetite and carb cravings. So far Align has been the only probiotic I've tried that has not given me adverse reactions.
    The B. Infantis strain of probiotic used in it is supposed to be a histamine degrader. I plan to try other probiotic brands I have head about that contain only histamine neutral and histamine degrading strains. If I'm not mistaken some I've heard of are "Presript-Assist" and "Advanced Orthomolecular Research AOR Probiotic"

    If anyone has experience with those brands I would be interested to hear your opinion of them!
    https://www.amazon.com/gp/product/B00JB2GOFI/ref=ox_sc_act_title_8?ie=UTF8&psc=1&smid=A3BZICTU10T76Z

    https://www.amazon.com/gp/product/B0082DDQH6/ref=ox_sc_act_title_9?ie=UTF8&psc=1&smid=A94Q2ONXW1ISE
     
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  8. MarbleWarbler

    MarbleWarbler Seeking knowledge

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    Thanks for the replies everyone, it has given me some more research to look into and new information that will hopefully lead to improvements.
    If anyone has some advice on good forums to join for learning more about methylation and how MTHFR SNPs work I would like to know where I can work with others to learn more.
     
  9. Aerowallah

    Aerowallah

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    Something not mentioned here is that toxic metals are supposed to bind to pathogenic bacteria and when you take a strong probiotic these metals can be liberated and give you a detox reaction. Would also add yogurts and probiotic pills have done very little for me over the years as being simply weak, transient bacteria. Kimchi and live culture kefir is powerful medicine, can recolonize the gut and kill pathogenic yeast--BUT it will give you a very strong reaction, including amped histamines. Maybe keep them in mind -- after a little more balancing and healing they will be tolerable. Your microbiome will thank you.
     
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  10. CFS_Kristin

    CFS_Kristin Senior Member

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    Hi, I've been sick with CFS for over 1 1/2 years, bedridden for 1 year, everything started after I got the flu last March 2015. I recently noticed that I'm super sensitive to probiotics and anything with histamine like Kefir. I had a TERRIBLE reaction to Kefir and sourdough bread, took me 4 days or so to recover. (migraine, nausea, flu symptoms) I also read Brain Maker and Eat Dirt and was inspired to take a bunch of probiotics, but it made me worse.

    During my illness I've had a lot of GI issues (most notably Nausea and Vomiting and Bloating) and I've tested negative for SIBO and H.Pylori. I'm so dumbfounded as to what is causing my issues. I am trying to get a stomach biopsy because I feel like something has to be wrong with my stomach.

    I've also been on 3 courses of antibiotics (Z-pack, Amoxicillin, and Sulfadiazine) and I just feel like my gut is totally messed up.

    How have you been doing with probiotics? I can take BioK (fermented rice) with no problem which is the only probiotic I'm currently taking.
     
  11. MarbleWarbler

    MarbleWarbler Seeking knowledge

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    Hey Kristin,
    Still haven't figured out exactly why some probiotics have had a terrible reaction for me and others haven't. I have found one extremely strong one that made a night and day difference. It's called Elixa. I'd recommend looking into it if you're curious.
    It was my last ditch effort with trying probiotics before looking into other venues due to the bad reactions I was having. I'm glad I tried it as it seriously turned things around for me. I then followed up with an anti candida protocol for approximately 3 weeks. Experienced moderate to severe die off symptoms that were tough to get through. (Taking molybdenum and milk thistle helped) It was a rough experience but ultimately worth it.
    During that time I think things got out of balance again and I've used some oregano oil to halt the similar adverse reactions I was getting to previous probiotics I've tried.
    Using Elixa again after all this is proving helpful once more.
    I have not gone back and experimented with other probiotics yet that had previously given me bad reactions. I noticed that I had similar adverse reactions come up when I ate lots of probiotic yogurt and kefir. I have a theory (although not fully fleshed out) that probiotics I ingest that do not reach my large intestine are causing the adverse reaction. The Elixa I've taken has a very strong enteric coating that is for sure reaching my large intestine. Some of the probiotics I've taken that gave me bad reactions, while they are enteric coated, weren't as well coated.
    As I said, that's just a rough theory I have that may explain why some probiotic products have caused severe issues for me (mostly emotional) and others have made a night and day difference for the better.

    Hopefully some of this can help you. I don't claim to have it all figured out myself but I feel I'm on the right track. At least for my situation I can confidently say that focusing on balancing my gut microbiome has made the most profound differences in emotional and physical health out of everything I've tried.
     
  12. actup

    actup Senior Member

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    Hi @MarbleWarbler! I have me/cfs and severe histamine intolerance issues controlled w antihistamines( monteleukast, claritin in am and diphenhydramine on occasion at night). I avoid fermented products.

    As for probiotics. I've found Miryarisan (clostridium butyricum) and evoraplus (oral flora probiotic) have worked very well for me. The evoraplus has eliminated my thrush episodes and chronic sore throat/ tongue. Miyarisan has given me the most normal bowel function in years( I have ibs-d). Did have increased bloating after intitiating Mirayisan but it completely resolved after 1-2 weeks and has not recurred. Stools are less frequent and formed, not loose. Buy on amazon for usd 14.99.

    Here are some relevant threads:
    http://forums.phoenixrising.me/index.php?threads/oral-probiotics-to-clear-your-head.42606/

    http://forums.phoenixrising.me/index.php?threads/clostridium-butyricum-a-game-changer.37324/
     
    Last edited: Sep 13, 2016
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  13. CFS_Kristin

    CFS_Kristin Senior Member

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    Have you ever been tested for SIBO? I tested negative but my doctor wants to try me on Xifaxin to see if it helps. Not sure whether or not I should try.
     
  14. actup

    actup Senior Member

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    @CFS_Kristen, I've not been tested for SIBO. My current clinic is not supportive for me/cfs issues. I do need them for now as I've just started treatments for two co-morbid diagnoses. May have to self test SIBO and order generic Xifaxan from India if it's indicated. Plan to read the PR threads on this topic first though. You're lucky in having a supportive MD. Hope you get better!
     
  15. joeblow604

    joeblow604

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    I do have the same consistent reaction to most probiotics. I don't have a good answer but have been considering several pilot studies showing higher levels of Lactobacillus and Streptococcus correlating with a worsening of mood, sleep and and other symptoms. It is a small study but seemed to match my experience. Something to consider. I'll add link below.

    I also find mood effected more by sugars and fruits and carbs increase the brain fog and other symptoms.

    I find Saccharomyces Boulardii a little helpful and been trying an SBO (Prescript-Assist) which so far is at least not hurting.

    Hope you find an answer, the carb cravings can be wicked

    http://www.sciencedirect.com/science/article/pii/S1984006315000632

    http://www.nature.com/articles/srep19171
     
    Last edited: Sep 18, 2016
  16. Johnmac

    Johnmac Senior Member

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    @MarbleWarbler - would be interested to hear how you are going now, & what you worked out in the end?

    I don’t have much to add, other than that I've had the same (histamine) problem – tho from probiotic foods such as yogurt, not supplements. Supplements don’t normally cause this problem according to Chris Kresser, tho anything is possible.

    Someone already noted that some probiotic strains degrade histamine rather than generate it. I believe soil-based probiotics are generally less problematic, as well as species from the Bifidobacterium (B.) genus.

    You don't appear to have a MAO mutation, which can predispose to histamine intolerance, from memory.

    FYI, I fixed 35 years of bad depression (+ "extreme apathy, emotional flatness, anhedonia, and lack of motivation") with learned optimism (a branch of positive psychology - took about a month); FODMAP intolerance with low-FODMAP diet initially, then L. rhamnosus to lift gut flora (it gave me histamine symptoms after a while - but meanwhile the gut was fixed); and GERD & SIBO with low-carb diet, betaine hydrochloride & stomach enzymes.

    By reversing the immediate problem by taking an antibiotic, you are wiping out your gut's good flora, & setting up future problems IMO. Most find that histamine problems recede when they stop ingesting foods that contain or promote histamine. (Apparently only probiotics in our case. I'm fine with tomatoes, onions, etc.)

    If you've heard of "Presript-Assist", you've probably read Chris Kresser on the gut & histamine. He's the most comprehensive writer on the gut that I've seen, & is also good on histamines. I read five long articles of his before embarking on my gut-fixing effort.

    I've just done a post here on probiotics, which mentions this histamine problem. It details what little research there is to date - tho those slim pickings are very promising.

    My rough sense of it is that no-one knows much about probiotics (foods or supplements) presently. For example gut guru Dr Jeff Leach doesn't use them because he has given himself better gut flora than his yogurt-slurping colleagues via diet (lots of fibrous, prebiotic veges, & especially lots of variety). He has little science on it right now, however I wouldn't be too surprised if in the future we took probiotics to top up species that we were missing, or attack specific ailments (see my table in the above post), but thereafter switched to a dietary approach.

    Which would also dodge histamine problems. Maybe our histamine reactions are telling us something...
     
    Last edited: Jan 8, 2017
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  17. Bansaw

    Bansaw Senior Member

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    How long did you take Pro15 for to have an effect, and how much per day?
    I have yearned for Kefir to work for me because its cost effective and contains so many great strains. I tried raw milk kefir, but got some reaction from it (I presume histamine reaction?) and decided to stop that.
    I tried Pro15 last year, just one bottle with no effect, and seemingly no histamine effect either.
    I took Mayarisan last year with noticeable adverse effects, so I stopped that too.

    I'm pretty sure I have gut disbiosis because if I ever I have fermented foods (vinegar, alcohol) I get a bad reaction. And sugar knocks me out too. Ice cream is the worst offender.
    I might see Dr Meirleir in a few months and get a full gut biome study.

    My history is that I had an elongated course of antibiotics in 2011, and before that took low-dose doxycycline as anti-malaria very often in Africa. So my gut bacteria was very compromised up until now. Plus I caught endemic typhus (a Lymes-like illness). Sigh.
     
  18. MarbleWarbler

    MarbleWarbler Seeking knowledge

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    Hey everyone I appreciate all the replies.
    I'm still getting used to using forums like this so my quotes and attempts to reply to you may be off formatting wise.
    It's been a while since I last posted but I've learned a lot and definitely made some progress. Hopefully some of this can be useful to someone else.

    I had previously mentioned Elixa and how I had had great effects from that. I still stand by that, however I did end up getting the same bad reaction from it at one point. It should be noted though that I was taking inulin along with it. I suspect the inulin may be something that sits badly with me. I have tried it on multiple occasions and each time it has given me the same bad reactions. I have avoided it since.

    Recently I have been educating myself more on histamine intolerance, D-lactic acid issues, and resistant starch as well as SBOs.

    Most recently I had done a 3 week long cleanse after having the extreme bad reaction from taking inulin along with Elixa.
    I followed this cleanse along with a strict adherence to the candida diet as means to rule out candida as a problem and to hopefully rid myself of whatever strain of bacteria was causing me problems.
    I used oregano oil, grapefruit seed extract, candida cleanse supplements, Thorne Research SF722, garlic oil, NAC, and rifaximin.
    During this time I took S. Boulardii to prevent any sort of pathogenic bacteria from taking hold in the absence of good bacteria.
    While this may have been a somewhat extreme measure it removed the problems I was having.
    I definitely agree with you here. I do believe the use of rifaximin is a pretty heavy hitting option and I have my concerns about wiping out the good bacteria as well.
    I can't deny though it has worked for me when herbal measures have not. I am still searching for a less severe option as an alternative to rifaximin.

    At this point I took a different path and tried my first SBO. I used Prescript Assist. I began with a low dose and once it was established to be well tolerated I began using RS (resistant starch) at a low dose and ramping up.
    The results were good from this.
    I decided to add AOR-3 next. This was a mistake. I had the same horrible reaction to AOR-3 that I've had to various probiotics before.

    AOR-3 contains:

    Streptococcus faecalis
    Clostridium butyricum
    Bacillus mesentericus

    I was curious about C. butyricum, however, AOR-3 had other strains I was not familiar with and clearly had a bad reaction to. If I'm not mistaken I remember reading that S. faecalis is D-lactic acid producing. Much of my trial and error work with probiotics has led me to believe that not only is histamine probably an issue, but so it D-lactic acid.

    @joeblow604 it definitely makes me wonder is the S. faecalis was the offending strain from the AOR-3? I also suspect L. acidophilus may be a problematic strain as well. I have not found a way to definitively prove anything yet. As it stands now I am cautious about lactobacillus strains and have been avoiding them in favor of bifido strains and SBOs.

    Following the bad reaction I stopped the AOR-3 and began adding in Align (B. infantis, histamine degrading) and Miyarisan (C. butyricum)
    I saw a great reaction to the Miyarisan which supports my theory that D-lactic producing bacteria overgrowth could be an issue.

    However, my attempt to gradually shift the composition of my gut by simply stopping the AOR-3 and using strains that worked well for me was not enough to reverse the negative effects I was getting.
    I ultimately ended up doing a "clean slate approach" as I call it which involved herbal antifungals/antibiotics similar to what was listed above as well as rifaximin for 4 days. While it may be drastic it did once again remove the negative effects.
    Since then I have been introducing Prescript Assist again slowly along with RS. It is currently a work in progress.

    I still have much to learn. The forums here have been immensely helpful as well as the advice and support from those I have talked to.

    To summarize briefly:

    Things are still a work in progress. Often it feels like 2 steps forward, 1 step back.
    However, bit by bit I'm gaining a better understanding of is going on with my gut.
    I currently believe the issues lie with histamine intolerance, D-lactic acid, and my sinuses. I have seen a consistent correlation with the health of my gut and issues with chronic sinusitis flaring up or decreasing. I have also seen sinus inflammation levels strongly correlate to levels of OCD/anxiety and brain fog. Perhaps others can elaborate on what they've experienced with this?

    I have had excellent results from Prescript Assist and Miyarisan. Align has continued to be useful, but doesn't produce as dramatic an effect as PA or Miyarisan.
    My experiments with RS have been profoundly helpful. It definitely is a powerful prebiotic that does not cause the issues that inulin or other prebiotics I've tried have caused for me. There is still more to learn about it.

    AOR-3 caused a bad reaction for me similar to how many past probiotics I have tried. Additionally it also caused extreme bloating and excessive odorless gas as well as noticeably increased appetite and carb cravings.
     
    Last edited: Jan 9, 2017
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  19. MarbleWarbler

    MarbleWarbler Seeking knowledge

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  20. Johnmac

    Johnmac Senior Member

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    @Bansaw, I don't know exactly what effect my 1 daily tab of Pro15 (about 2 months now) is having, as I have been eating so many probiotic foods at the same time. However I notice that the absence of anxiety that began when I started Pro15 & the probiotic foods is still with me, even tho I've stopped the probiotic foods. As is a better ability to tolerate FODMAPs. That could be the Pro15, or it could be the raised levels of prebiotic foods I've been able to eat now (or both) - tho I suspect it's the Pro15.

    Histamine effects from probiotic supps are not common - they usually come with the fermented foods.

    Sugar, FODMAPs & probiotic foods can all knock your gut around if it's reactive. My approach was to withdraw from all the above till it settled down, then add in the probiotic stuff (especially L. rhamnosus, which fixes everything gut); then slowly ramp up the FODMAPs & fibres. And stay off sugary foods & refined carbs for good.

    I live in Cambodia much of the year, & have never had a vaccine & no longer take antibiotics for gut problems.

    Drugs have always made me sicker, & I don't moreover believe the medical paradigm has proven a successful one. Without the marketing money & the monopoly medicine has given itself, I believe it would quickly fall over.

    I've had cutaneous leishmaniasis (which looks like the Black Death) & chronic fatigue (which I retired with the Freddd Protocol, & more recently with the transdermal B12 oils), but nothing serious besides.
     
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