Posted 3/11/2016 10:58 AM (GMT -6)
I'm looking for some thoughts and advice. I've struggled with GERD off and on for 10 years. I took antibiotics for probably 6 months straight about 10 years ago, and that was the start of this whole mess. That's back when I was a "good patient" and did whatever the doctors said without question. The kicker is not only did the treatment not help...but the sloppy diagnostic work marked me for a condition I didn't even have. It's hard to let go of that one.....
Anyhow, I developed awful heartburn at that time. This persisted for about 3 years. Daily heartburn. I was prescribed PPIs--many different brands. That actually made my symptoms worse. I saw 5 different GIs seeking different treatment, or more investigation to get to the cause. They all recommended I just take PPIs. I stumbled upon probiotics, one new one at the time was called Align. I started taking it, and felt no ill effects. After about two months, my symptoms were all but gone. I was shocked. Then a new major issue developed--I started getting awful pain in my arms and legs--burning, stinging, stabbing, numbness. I quit taking the Align. I didn't know if it caused it or not, but I was scared it may have. I sought help at the neurologist, and I was diagnosed with peripheral neuropathy. I saw probably 5 different neurologists, even flying to Detroit to see the world leader, and no one was able to pinpoint a cause. I heard all different guesses....genetic, Lyme's, viral infection, and just plain we don't know.
That was 7 years ago. My neuropathic symptoms haven't improved much, but haven't gotten worse to my knowledge either. Reason being, I don't go back and get more conduction studies done. What's the point? If they develop new treatments, I'll go back. Right now, all they can offer is pain meds.
Fortunately, since my stopping the align my heartburn symptoms stayed mostly in check for several years. However, over the last two, that has all changed. I've been experiencing daily symptoms again. My first thought was to once again try a probiotic. I did--one called culturelle, and within hours I was met with brutal nerve pain. I mean awful. Couldn't be worse. It takes a few days, maybe up to a week or so to return back to baseline pain levels. I've also tried other things such as Kefir, sauerkraut--and have been met with similar symptoms. Here's the good news....my heartburn symptoms are immediately significantly better--just by one dose of these. But I can't continue taking them, due to the nerve issue.
Here are my questions:
Has anyone take probiotics and been met with strange, terrible symptoms? Anyone experience an immune response or neurological implication? I realize it's unlikely...and perhaps probiotics aren't responsible for my neuropathy. Perhaps they just cause a pain trigger in my body for some reason. But still, it's an interesting question.
Does anyone have any suggestions on how to correct the issue probiotics are solving without using them? Diet suggestions? I've read very low carb diets could potential kill out unbalanced bacteria in the gut. While I eat very, very little artificial sugar, I do eat a great deal of fruit. By a great deal I really mean a great deal. A couple bananas a day, a pear or two, a few servings of both blackberries and blueberries, a couple servings of prunes, prune juice...sometimes more. I tried low carb for about a week, just to see if that eliminated my heartburn...perhaps thinking all the fruit could cause my symptoms...no dice. But I know I'd have to go low carb for weeks to see a difference in gut bacteria. Any thoughts or other suggestions??