Probiotics making me worse! I'm worried.

Discussion in 'Fibromyalgia Main Forum' started by JewelRA, May 27, 2009.

  1. JewelRA

    JewelRA New Member

    Hi everyone. I haven't posted in a while due to just being so busy.

    I have a question. I started taking a probiotic at the advice of a friend for my IBS-like symptoms and frequent bouts with the stomach "flu" that my family likes to pass around. I've only taken it sporadically, like when I have an acute upset. It sometimes seems to really help, and other times not do anything. The past few weeks, I upped my usage of it, trying to really knock anything out in my gut. Still taking it within the suggested dosage - 1 pill 3 times a day - and usually not even that much. I always take the minimum of any supplement or medicine because I am so sensitive to things

    Today I am having the absolute worse diarrhea I have had in a long time. It seems like my food is not digested at all (sorry if TMI), I am nauseus, cramping, on the toilet every hour or so....etc.

    Do you think this can be caused by the probiotic???

    I did a Google search and found that some people do experience diarrhea as a side effect of probiotics. Also I read that they can cause BAD bacteria to grow as well, especially if they contain FOS (sorry I don't know the long name that this stands for). Of course, mine has FOS. Also, I read that it can cause deadly infections in people with lowered immune systems - well that would be me! I have JRA and am on Methotrexate!!!

    Now I am totally freaked out!!!! Do you think I have totally screwed myself up???? I've stopped the probiotics as of today. How long do you think it will take for them to get out of my system?

    Thank you!
  2. Pansygirl

    Pansygirl New Member

    I would suggest contacting your doctor as diarrhea is not something to let linger on, there are to many things it could be.

    I don't take probiotics so I don't have an answer for you there, but hopefully someone else will.

    I would definitely get into see your doctor or at least call and talk to them about this.

    Hope you feel better, keep us posted .
    gentle hugs, Susan
  3. simpsons

    simpsons Member

    do consult a dr and make sure you take plently of fluids

    maybe you have lactose intolerance and you could try lactose free pro biotics

    you know you hear of antibiotics causing die off with stomach bacteria and this causes a simular toxic type reaction i think

    perhaps you have upped your dose to fast guess you would need to try lactose free and or try stopping the pro.s altogether and then restarting them to test if it is these

    do consult your dr though as advised above

    love and gentle hugs
  4. JewelRA

    JewelRA New Member

    Well, for now, the diarrhea has stopped, but I still have a horribly achey belly. It feels bloated and like it's burning with acid. Actually, these symptoms have gone on for quite some time. I'm really starting to get concerned about it. I always wrote it off as "stomach virus" because my family gets this so much, but this is more than that.

    What I am really worried about is having taken oral methotrexate for so many years I have destroyed my stomach. :(

    Hoped to help myself with the probiotics, but they seem to be backfiring on me.

    Oh, Caledonia, you asked if I was on a GFCF diet. I'm not, but am considering it. I always said I couldn't do it, but I am getting desperate enough to try anything about now.

    Oh well, thank you for your replies.

  5. cfsgeorge

    cfsgeorge New Member

    the rule of thumb for this DD is not to do anything or take anything that makes you worse.
  6. JewelRA

    JewelRA New Member

    LOL, cfsgeorge!!! Amen to that!!!! And it is just a little bit different for all of us, isn't it??? :)
  7. Nannibel

    Nannibel Member

    Julie, My husband and I for the past year have had this "stomach flu" also, and the diahrrea was ocurring when we were not using probiotics. We look back and realize the problem started several years ago after I had surgery in the hospital. I am really wondering if we have a recurring c-fiff (clostricium difficicle) bacteria, that comes about after using antibiotics, when the antibiotics kill off your good bacteria. I was given masses of antibiotics in the hospital and the diarreahha started after that. Anyways, it comes and goes. There are support groups online out there that feel their IBS is from this C-diff. We first thought it might be parasites, or some type of bacteria and had many stool samples taken last fall. Nothing showed up, but I don't know if the c-diff test was done. We even tried antitbiotics thinking that might help. It didn't. Then we drank something called kombucha. It has live cultures, like yogurt, or probiotics. Our stomach's immediatelyl started reacting , we could feel it! And after that, the d went away for awhile. However, it is back again and we are trying the probiotics and the kombucha. In our case the probiotics don't seem to be making it worse. I also feel that flu virus's or the stomach flu can be hard to get over, if that might be causing it, also.

    Too bad there are so many causes of diarreaha and so hard to figure out which one is causing it! good luck Nancy
  8. JewelRA

    JewelRA New Member

    That is so interesting that you mentioned c-diff. This something that I have been reading about and really considering this may be what I have as well. As I mentioned, I have a compromised immune system due to having Juvenile Rheumatoid Arthritis, as well as the medicine I take for it - methotrexate. It would be easy for me to get stuff. Also, dh brings bugs home constantly from the hospital where he works.

    The first time I remember this happening was the very last time I got a flu shot, about 5 years ago, shortly after my dd was born. I was on prednisone and just starting methotrexate again due to a horrible flare after dd was born. A few days later, I had the first case of the "stomach flu" I remember having since I was a child, and it was BAD. I mean the kind where you are throwing up until there is nothing left and you have the dry heaves. And then diarrhea so bad you can't make it to the toilet.

    Ever since then (yes, 5 years now), we have had repeated bouts of the same bug, only not as severe most of the time. The frequency has grown more and more. The whole family gets it, but I seem hit the worst because of my immune system. Sometimes it is worse than others (like this week). I am sure I've had a virus this week, since posting this, because I actually was a little feverish and achey all over, like I was fighting a virus.

    I am going to ask my rheumatologist to test me for c-diff next time I see her. I would ask my primary, but he is not very cooperative in doing lab tests. My rheumy is good about it. From what I read, it seems like they treat c-diff with more antibiotics!!! It seems like this would be couterproductive. And sounds like it was in your case! I also have read that only a certain strain of probiotics is effecitve against c-diff. I can't remember it exactly, seems like the last part was something like boulurii or something. You probably know more than I do.

    Thank you so much for your input, and I hope you and your husband get better soon!!!
  9. JewelRA

    JewelRA New Member


    I googled and found the probiotic strain I was thinking about. It is called saccharomyces boulardii. (Hey, I was close!) Is this what you are taking now?

    God bless,
  10. SpiroSpero

    SpiroSpero New Member

    cfsgeorge is right. We all react different. Saccharomyces Boulardii for example gave me eczema, anxiety and destroyed me completely. VSL#3 is one of the best probiotics and Prof De Meirleir is using it but I noticed that too much of is bad for me. It seems like our immune system can have problems with it. When having Leaky Gut for example it is recommended to take probiotics but you don't want to get bacteria into your blood. Probiotics consist of bacteria so maybe this is a problem when they cross into your blood, who knows.
  11. JewelRA

    JewelRA New Member

    Thank you, SS. Yes, I agree completely. I have mixed feelings about injesting live bacteria of any amount. How do we find the right balance? How do we know how much/what strains/etc. we need in our individual bodies? It is really scary.

    Although I have read the saccharomyces boulardii is what is recommended to treat c.diff, I have also read that all of the reported fatalities and problems from probiotics also deal with this strain!!! That's a scary thing!
  12. ruti

    ruti Member

    you need to take it very seriously. The probiotic is not the main issue.

    * please do blood tests for celiac (gluten intolerence) - you can ask your general practioner doctor for this. You need to do them before you start a gluten free diet - it is very important to know - an untreated celiac can be dangerous.

    * go to a gastro doctor and do testing - colonscopia and more
    * check for ulkus - the helibactopr bacteria
    * do a stool culture and look for parasites
    *see if you can find a place that tests for candida
    * you might be sensitive to FOS in the probiotics - check if it includes it
    * finding a good probiotics is no easy thing - try to lower dose
    * check breath test (usually done in hospitals) for sensitivity to milk/ dairy and a second one for fructose mal absortion (they are also called hidrogen tests)

    Hope you find a solution soon
  13. Nannibel

    Nannibel Member

    Hi Julie, I had also read about that strain (s. boulardii) being the one that works against the c-diff. I looked in GNC and other places and couldn't find it. Our diarrehea is much better, at least it is not like when it is severe and like water. But, I can't say I am ever back to normal if you know what I mean. I am not using the activia daily and nothing else. Oh, and last week I had a flu , also, and had the nausea /and severe diahhrea again, but it is much better again. I don't think anyone really knows the cause of IBS but it seems to be part of the syndrome of Fibromyalgia and CFS you just wonder what is behind it. Another thing I forgot to mention is I have had gallbladder issues (didn't have it out, but it apparantly doesn't functionwell) and that can also have an effect but I am not sure if it causes the D. I don't think that is a much an issue in our case as as far as we know my husband does not have gallbladder problems. Thank goodness our two children remaining at home with us don't have the that makes me think whatever is causing it isn't easily communicated. C-diff is only caught usually as a result of being on antibiotics when it intereferes with good gut bacteria. I hope your D gets better, sooner or later it seems to. What did you read that was life threatening about the S.boulardii culture? I am glad you mentioned that as I hadn't read anything about that. Nancy
  14. pitoune

    pitoune New Member

    I have been on anti-biotics for 5 months now for a bladder condition. We all know that antibiotics kills all the good and the bad bacteria and that is why I was also put on probiotics to give me back some of the good bacteria that I take. I know that being on antibiotics for such a long time will probably kill most of the good ones I'm getting from the probiotics but I'm still getting them in to help me so I don't get all kind of infection from something else passing by.

    I have not experienced any problem with the probiotics and have not been sick at all this Winter or this Spring so as far as I'm concern, they can't be all that bad. You can even get Yogurt with probiotics in it. In my case, I have suffered for many years with constipation and I must say, it has not change anything at all, I'm still constipated.

    The one I'm on are from Holista, they are called Probio Vie and are a multi strain Probiotic 5 billion active cells. I take 2 of them everyday. Maybe there is an underlying condition that you might have with your stomach or intestin that you are not aware of that is causing this diarrhea. I would recommend calling your doctor or pharmacist to get more information on the ones that you take. I'm glad to hear you're feeling a bit better and that the diarrhea has eased for you. Do take care hon.

  15. Empower

    Empower New Member

    By no means do I want to scare you, but my sister had diarrhea for a long time and the doc's kept saying it was IBS

    After she got fed up, she demanded a colonscopy and found out she had C-diff - she took an antibiotic and is SO MUCH BETTER!

    C-diff is VERY contagious and is on the rise. My mom had it too

    I think they can check it with a stool sample

    I just know that my sister suffered for a very long time until a smart doctor got to the bottom of it

    Good luck and let us know

    BTW - her treatment from the doc was a Probiotic and Antibiotics
  16. Empower

    Empower New Member

    By no means do I want to scare you, but my sister had diarrhea for a long time and the doc's kept saying it was IBS

    After she got fed up, she demanded a colonscopy and found out she had C-diff - she took an antibiotic and is SO MUCH BETTER!

    C-diff is VERY contagious and is on the rise. My mom had it too

    I think they can check it with a stool sample

    I just know that my sister suffered for a very long time until a smart doctor got to the bottom of it

    Good luck and let us know

    BTW - her treatment from the doc was a Probiotic and Antibiotics