Widespread pain and altered renal function in ME/CFS patients.

[JaimeS]

The trial and error aspect of this disease is maddening! It's shocking how strongly we can react to things, and how each one of us is so very different. What reaction did you have to the pre/pro biotics that didn't agree with you?

ANS symptoms increased, so more dizziness, more wordfinding issues and so on: neuro rather than digestive, for the most part. The worst I've ever had was when I decided I was getting better so I ate a small amount of homemade kim chee. My vision blacked out in one eye. Not a stroke, thank goodness, so I'd have to guess it really just increased neuroinflammation to press against that nerve temporarily. Pupil was unresponsive as well.

Some probiotics give me breathing issues; all probiotics exhaust me.

I didn't go back to that store for a while.

I have the best results taking them spaced a few days apart and varying the types on a regular basis.

This is the conclusion I've come to as well.

I went off of probiotics for a few days and that was the healthiest I've felt over the last several years. Unfortunately, I need to take probiotics to, y'know... digest food. After another few days I was much sicker than before, unable to digest any of my usual supplements and probably going a little malnutritive in general. (Is that a word?)

Valentjin talked about getting 'prescription enzymes' from her doc, but I live in the US where that would probably be labeled voodoo since it's a natural approach. Enzymatic Therapy does a good job of making digestive enzymes but they're not strong enough to help me on their own.

In the end, I have also started to rotate my probiotics, using one of three every day. I just keep them in a row and shove one type to the back of the row after I take them to keep them rotating. We'll see how that does.

The real issue here in both cases, I think -- both in terms of why I have NS issues with fermented stuff and why I need probiotics so badly -- is the BBB and the gut barrier both being messed up. I'm trying high doses of glutamine (preferred gut food for endothelium in times of crisis) but I have to take so much it's screwing up my acid-base balance and now -- you guessed it -- I'm sicker than before.

This illness has a lot of moving parts! The thing is, I've dealt with issues this complex in the past (my original acid-base balance stuff comes to mind) and you just have to be willing to move and adjust. Rather than give up on the glutamine I'm going to reduce the dose and take it more often, see how that does. I'm pretty sure the real issue is gut integrity, and this is all going to be needlessly complex unless I can improve that.

-J

 

[dannybex]

@JaimeS I certainly hope you're feeling better by now. Some say glutamine lowers ammonia, while others say it can increase it, and that ammonia is actually lowered during the conversion of glutamic acid to glutamine.

Of course I'm not sure who's correct, but found this hypothesis which casts some doubt on glutamine...I think.

https://www.ncbi.nlm.nih.gov/pubmed/17006913

"We propose that it is the glutamine-derived ammonia within mitochondria that interferes with mitochondrial function giving rise to excessive production of free radicals..."

 

[JaimeS]

@JaimeS I certainly hope you're feeling better by now. Some say glutamine lowers ammonia, while others say it can increase it, and that ammonia is actually lowered during the conversion of glutamic acid to glutamine.

Of course I'm not sure who's correct, but found this hypothesis which casts some doubt on glutamine...I think.

https://www.ncbi.nlm.nih.gov/pubmed/17006913

"We propose that it is the glutamine-derived ammonia within mitochondria that interferes with mitochondrial function giving rise to excessive production of free radicals..."

Yeaaaaah, it's not good for me.

That whole business iterated above led to a month-long crash from early Jan to early Feb. Awful.

I'm now on the probiotic every four days or "as needed" (when I start to have digestion issues). It is not a long-term solution of any kind. Be back to DeMeirlier at the end of this month.

 

[Mel9]

I hope you feel a bit better now. It's awful when you try something like that and it backfires on you.

 

[dannybex]

I hope you feel a bit better now. It's awful when you try something like that and it backfires on you.

Ditto @JaimeS. Frustrating how we all have different reactions and thus have to find different answers. Hope you find some really soon.