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Feeling terrible after Probiotics

Discussion in 'General ME/CFS Discussion' started by BRISWHARF, Oct 3, 2017.

  1. BRISWHARF

    BRISWHARF

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    I suffer from terrible fatigue with other symptoms and a couple of months ago I decided to try the drink homemade kefir (probiotics). It had an immediate effect of increasing my fatigue and my dizziness and ringing in the ears, pounding heart became 10 times worse. I only took it for a week (I carried on taking it for a week, as I thought my body might need to just get use to it). Now 2 months later after stopping it I have never gone back to how I was before. Like it's done some permanent damage! I still feel so much worse.
    Anyone have any idea why this has happened?
    If I can find out what kind of people can't tolerate probiotics then I might know what is wrong with me.
    Thanks for any help :)
     
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  2. adreno

    adreno PR activist

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    This is quite normal for PwME. We can't seem to handle the lactic acid.
     
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  3. JaimeS

    JaimeS Senior Member

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    Or the actual bacterial effects. As I've commented elsewhere, I'm not so sure the lactic acid is to blame, at least in my case. I tried non-lactic acid-producing bacteria with the same result. It was only when I tried enteric-coated capsules that I started to be able to tolerate them, which implies it's a leaky gut sort of issue.
     
  4. Hip

    Hip Senior Member

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    ME/CFS patients seem to divide into two camps when it comes to probiotics: some can tolerate and even get benefits from probiotics, whereas others notice significant negative effects. This forum poll shows that roughly 50% of ME/CFS patients are sensitive to probiotics, and 50% are able to tolerate them.

    However, I have not myself come across a case where probiotics seem to cause long term worsening of ME/CFS, as you report. It sounds like these probiotics may have built up their populations in your intestines, as they are intended to do, but somehow these normally friendly bacteria in your gut are causing you problems.

    One thought is that by taking an antibacterial herb like say garlic or oregano oil, you might be able to kill of these probiotic bacteria, and then get back to where you were before health-wise. But I would be cautious with this, as you never know if it could make things worse (especially if you have a yeast infection — see below — as antibiotics can make yeast infections worse).



    The other thought (and this to me seems more likely) is that because kefir contains several strains of yeast as well as Lactobacillus bacteria, it could be that the kefir introduced a yeast infection into your gut.

    This paper (see table 1) shows which yeast species are found in various kefirs originating from different countries.

    As you can see, the yeast species that may be found in kefir include:

    Yeasts That May be Found in Kefir:
    Saccharomyces cerevisiae
    Saccharomyces unisporus
    Issatchenkia occidentalis
    Kluyveromyces marxianus
    Kazachstania unispora
    Kazachstania exigua
    Kazachstania aerobia
    Kazachastania khefir
    Lachancea meyersii
    Rhodosporidium kratochvilovae
    Dekkera anomala
    Naumovozyma sp.
    Zygosaccharomyces spp.
    Candida spp.
    Candida lambica
    Candida krusei
    Cryptococcus spp.

    So if it is a yeast infection in your gut that is causing your troubles, you might consider trying some antifungals to kill of the yeast. Some antifungal herbs are listed here and here.

    And the antifungal drug fluconazole (Diflucan), which you can obtain over the counter, kills fungus and yeast throughout your body. If you are thinking of trying this, it might be an idea to take low doses initially (by breaking the tablets into smaller parts if necessary), so that you don't get a die-off reaction that makes you feel worse when the yeasts are killed.
     
    Last edited: Oct 3, 2017
  5. Richard7

    Richard7 Senior Member

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    I guess I am in a third group Hip.

    I have had negative effects: severe photophobia and wosening PoTS after taking lefespace probiotics https://www.lifespaceprobiotics.com/product/100-billion-powder-probiotic/; feeling ill after taking Saccharomyces boulardii.

    But seem to gained some benefit from others. Most dramatically the dental probiotics mentioned in this thread http://forums.phoenixrising.me/inde...biotics-to-clear-your-head.42606/#post-689976

    @BRISWHARF
    with palpitations you may want to look at potassium and other electrolytes.

    Have you looked at PoTS? a lot of people with CFS/ME have PoTS.

    I have been playing around with how I deal with it and am currently making all the tea I dring into "energy drinks" by adding
    • Sodium Chloride 3.5 grams
    • Sodium Bicarbonate 2.5 grams
    • Potassium Chloride 1.5 grams
    • Glucose 20 grams
    a recipe I got from this site http://rehydrate.org/ors/ort-how-it-works.htm.

    Only I seem to need more potassium and I make it with tea because the ECGC in the tea is meant to help reduce gut permeability. (and it tastes better)

    If you still want to try a probiotic approach you may want to look at this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2664325/ the physical symptoms anxiety are essentially the same as PoTS. The bacteria they uses is the one that is found in yakult, and you would need about 4 of the little bottles a day. You can make grow it on milk or soy milk in a yoghurt maker to make it affordable, which is what I did.

    If these things do not work you may want to look into d lactate and histamine. Some bacteria increase these and for some people it seems to be an issue (one I do not know much about) Ken Lassesen has info on his blog about dealing with these issues here is the index https://cfsremission.com/alphabetical-listing-of-posts/

    I hope this helps.
     
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  6. Thinktank

    Thinktank Senior Member

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    Hip and Richard7 have already mentioned a few possible causes like histamine production etc.

    My opinion is that one reason for feeling ill after taking probiotics is bacterial translocation through a hyperpermeable intestinal lining aka "leaky gut".
    Also when suffering from active inflammatory bowel disease like Crohn's or ulceritive colitis probiotics can aggrevate the inflammation because the immune system senses the benign bacteria as being pathogenic. The inflammatory attack can then make you feel really ill.
     
    Last edited: Oct 4, 2017
  7. PatJ

    PatJ far and free I gaze

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    When I first started taking home made kefir I had to start with a very small amount, and even then some symptoms increased, along with nausea. After taking a little more each day the increased symptoms subsided and now kefir is helping to reduce some of my symptoms.

    I started with a tablespoon for the first couple of days, and now I take one cup per day.

    If your kefir was unbalanced (ie. smelled bad, tasted like vomit or something else unpleasant) then you may have gotten a large batch of problem causing bacteria. My first batch of kefir grains never achieved a balance, even after two months, so I purchased another batch of grains that started producing good kefir within two weeks.

    I'm in a third group. Probiotic supplements increase some of my symptoms including brain fog and light sensitivity, but home made kefir (now that I have adjusted to it) is helping to reduce some of those same symptoms.
     
  8. msf

    msf Senior Member

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    I think this was definitely true in my case. I used to have a pretty severe reaction to them, but since treating the underlying Yersinia infection I have no problems with them, which isn't too surprising if you know the science.
     
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  9. erin

    erin Senior Member

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    I used to make my own kefir and really enjoyed it and benefited from it past couple of years. Last June after recovering from a pneumonia infection and extensive antibiotic use I started to react kefir badly. Just described in the opening post of this thread. I had to stop it after a terrible episode that I ended up in A&E with severe vertigo and brain fog.

    A month later I was diagnosed gastritis and I begin to have severe reaction to all dairy products. Last week another trip to A&E for palpitations.

    I've lost a stone since April (pneumonia), I was gluten free and now dairy free I can't eat much as raw vegetable and fruits bad for the gastritis. React really bad to all medicines and also sugars.
     
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  10. lookingfortruth

    lookingfortruth

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    Ive seen you commented that you have tried non-lactic acid producing bacteria . Could i ask which ones?. Also u say that you tolerate probiotics with an enteric coated that helps with leaky gut but enteric coated capsules still open in the Small intestine or are u using an enteric coated capsules that open in the colon?.


    The only one that doesn't to bother is mutaflor capsules that only open in the colon. Ive noticed I only can tolerate this one with the capsules, if i open it , it give me lactic acidosis symptoms. Any help here would be great as Im suffering from severe dysbiosis and SIBO and seems i cannot handle probiotics to fix it.
     
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  11. Gondwanaland

    Gondwanaland Senior Member

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    Even lactic acid producing? Please tell more

    I was taking Bbs with enormous benefits, but then started feeling that poisonous gas was flooding my blood, I wonder if I order the same Bbs enteric coated I would get only the benefits?
     
  12. IThinkImTurningJapanese

    IThinkImTurningJapanese Senior Member

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    I've had the same experience, this is complicated.
     
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  13. JaimeS

    JaimeS Senior Member

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    I'm sorry, I've tried a number of probiotics over the years, and I no longer remember all the ones I've tried.

    I presume that, in fact, the cap I take does open in the colon, or that its release of bacteria in the small intestine is very minimal. And yes, Dr Ohirra's does contain Lactobacillus, something I'm utterly unable to tolerate in a powder and/or a basic gelcap.
     
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  14. Gondwanaland

    Gondwanaland Senior Member

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    I was curious about the enteric coated ones...
     
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  15. bertiedog

    bertiedog Senior Member

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    @BRISWHARF Are you wondering what actual bacteria you do have in your gut? If so that might clarify what is going on. I understand Ubiome is good if you live in the US. I don't think its available from the UK though.

    I did the American Gut stool test with very interesting results showing I had 87% of one type of bacteria namely Bacteriodetes and very little good bacteria plus low diversity which is apparently typical of the gut of a person with ME. Since getting this stool test done this summer I have been following Ken's advice on CFS Remission.

    The change of probiotics made a big difference to my gut quite quickly. I don't tolerate the typical acidophilus type of yoghurt yet I used to eat it at least a couple of times a day thinking it would be good for me. All it did was to feed the bad stuff. I also stopped taking Inulin cos that made me worse. Kefir was a disaster for my gut, it would explode and give me very loose bowels. I don't get that now thankfully and the constipation problem I have had for years is improving too.

    Sometimes I get it wrong by trying a probiotic that might just have a little of the lactic acid bacteria but lots of Bifido type but it will also upset my gut very quickly. The best probiotic for me at the moment is Prescript Assist which is a soil based one but I also do ok with Symbioflor 2 which is the beneficial form of E Coli and which showed up non existent in the recent test. I also changed to Activa yoghurt for bifida bacteria. Its way too sweet so I make my own from it with organic whole milk and this also suits my gut. From all of this I have learned there is actually a lot you can do to improve gut function but I think you do need to know what you are actually dealing with for it to be successful.

    Just a few thoughts.

    Pam
     
  16. JaimeS

    JaimeS Senior Member

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    The Dr Ohhira's probiotics.
     
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  17. rodgergrummidge

    rodgergrummidge

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    Just a couple of points about the gut microbiome, lactate and probiotics that maybe helpful in this thread.
    The syndrome of d-lactic acidosis can arise from the production and absorption of d-lactic acid from bacteria in the intestine. In some cases, increased D-lactic acid production can occur when carbohydrate malabsorption in the small bowel leads to increased delivery of carbohydrates to the colon with subsequent fermentation by colonic bacteria to d-lactate. Unlike L-lactate, D-lactate accumulates in the body because of its slower 'metabolism' and so may cause CFS symptoms (In Vivo 23, 621-628 (2009).

    Bacteriologic analysis of fecal flora has shown a predominance of Gram-positive anaerobic organisms including a variety of lactobacillus, bifidobacterium, and eubacterium, which have been shown to produce d-lactate in vitro. Thus, anything that might increase anaerobic fermentation in the gut to increase d-lactate production may cause/exacerbate CFS symptoms. Possible triggers might be i) an over-abundance of d-lactate-producing bacteria in the gut, ii) a large carbohydrate meal that stagnates in the colon, ii) decreased renal function resulting in decreased excretion of D-lactate, iii) increased colon permeability and/or iv) decreased gut motility. Treatments targeting any of these issues may be helpful in alleviating the symptoms of D-lactate acidosis in CFS patients.

    Some gram-negative enterobacteria may also cause CFS symptoms. Studies have suggested that some gram-negative bacteria may increase intestinal permeability and absorption of endotoxins leading to inflammation, immune activation and oxidative stress, which are prevalent symptoms in a large subset of CFS patients (In Vivo23, 621-628 (2009). The gram-negative marker, LPS (a sugar that is shed from bacteria), is increased in the blood of some CFS patients (Microbiome 4, 30 (2016).

    One of the difficulties with probiotic treatments is that often we have no idea whether our our symptoms are due to alterations in our gut microbiomes and which are the 'bad' gut bacteria and which are the 'good' bacteria. So, it is not always a simple task of knowing which bacterial strains we might use to replentish our microbiomes. For example, may probiotics contain Bifidobacteria which are a group of lactic acid-producing bacteria which could make CFS symptoms worse.

    And our guts are populated by an extraordinary complex ecosystem of bacteria. A recent comprehensive study of 1135 Dutch volunteers using deep DNA sequencing showed that while >99% of their gut microbiomes were composed of hundreds of bacterial species, their total gut microbiome was composed of thousands of species. While they were able to see differences between 'healthy' and 'non-healthy' volunteers, it was difficult to causally identify specific 'culprit bacteria' for specific diseases. Furthermore, little is known about most of the species that populate our guts in terms of their precise roles in health and disease. In many cases, the culture conditions for many gut bacteria are not even established so they cannot be produced for probiotics (Science 352, 565 (2016).

    So it is perhaps not surprising that probiotics make some CFS patients sicker and others better. In some cases, the effects of probiotics may even differ in the same person depending on their diet. For example, because our microbiomes can change significantly according to our diets, responses to probiotics may differ markedly depending on whether we have a high carbohydrate diet composed of simple sugars or a low carbohydrate diet composed of complex sugars. In such cases, taking bifidobacteria probiotics with a large carbohydrate meal composed of simple sugars would allow bifidobacteria to rapidly proliferate as they gorge on the abundance of sugars and churn out d-lacate leading to a worsening of CFS symptoms.

    So, like many treatments in CFS, many of us have tried probiotics. If it works, great! If not, soldier on........

    Rodger
     
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  18. lnester7

    lnester7 Seven

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    I do that on latic acid producing bacteria (I notice I do not on the probiotics that do not contain it) I think I have too much latic acid producing bacteria (By observation, waiting on tests). SOme user posted on the latic acid strains vs not and that helped me and I realized that was my issue (do not do kefir anymore).
     
  19. rodgergrummidge

    rodgergrummidge

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    Is someone here able to give a list of d-lactic acid-producing bacteria versus non-d-lactic acid-producing bacteria? Or point me in the right direction? I cant seem to find a comprehensive list. Might be helpful for many here on PR.

    Rodger
     
  20. lnester7

    lnester7 Seven

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