Worth trying a probiotic again?

[outdamnspot]

I'm in a dead-end now. Hydrocortisone is basically keeping me alive, I imagine, but does nothing to really help me function in the face of severe food intolerances. Oddly, the only time I get real 'energy' is when I introduce a problematic food which somehow messes up my gut .. I'll get a lot of diarrhea etc. and almost manic energy; then, after a few days, I just crash horribly. I've been trying to rotate foods (mostly fat/carb sources, like olive oil, avocados, peanut butter etc.) to avoid the crashes but even that doesn't really help.

It's been a long time since I tried a probiotic since they did used to help my inflammation and gut symptoms (though food issues were never this bad), but sometimes the parasympathetic effects could worsen OI, adrenal issues etc.

The only one that ever helped was Symbioflor 2 though the effects weren't consistent with each course. I have a full bottle I bought last July and haven't used. Wondering if it would be worth trying a dose before bed since the horrible inflammation from food reactions just wake me up throughout the night. Would it be ok to try with HC? I am really scared of crashing myself further. Has anyone here used Symbioflor 2 recently because I can't remember anything about how I dosed it (I have a feeling I was taking 5-15 drops)?

 

[Float]

I have no idea but I have found that constipation is a no no for use of probiotic for me . You probably already know about SIBO and how probiotic can add fuel to the fire for some people. I hope you find your solution . The only probiotic a professional ever recommended to me was vsl 3 but I saw so many mixed reviews that I didn't bother. Good luck and best wishes.

 

[vaer]

The only one that ever helped was Symbioflor 2 though the effects weren't consistent with each course.

have a look at Mutaflor (E. coli Nissle 1917)

 

[Belbyr]

I have no idea but I have found that constipation is a no no for use of probiotic for me . You probably already know about SIBO and how probiotic can add fuel to the fire for some people. I hope you find your solution . The only probiotic a professional ever recommended to me was vsl 3 but I saw so many mixed reviews that I didn't bother. Good luck and best wishes.

VSL3 is a good one but powerful! I bloated up like a 16lb bowling ball when I took a dose. IBS is bad in me as well, I ordered this and waiting for it to deliver... https://1md.org/product/probiotics

 

[jesse's mom]

I take probiotics, they helped me 25 years ago, then when I got so sick after getting off the antibiotics and the steroids in the hospital in 2017 They saved me again. They work for me and many others. I am not familiar with the ones you are taking, but I know there is a short shelf life for probiotics.

I will try to remember some members who know about healing the gut and alert them to this thread.

As always @outdamnspot , all the best to you.

 

[tiredowl]

I think probiotics are either a hit or miss. The only ones I am able to take that seems to help me are Mutaflor (I rememeber reading somewhere that this probiotic is quite special, and even is able to produce +NAD) or Bacillus Coagulans all the other seem to produce histamine reactions.

 

[lafarfelue]

have a look at Mutaflor (E. coli Nissle 1917)

Seconding this. It was of huge benefit to me when I started taking probiotics to address my gut dysbiosis.

Another that I believe PwME generally can benefit from the most is Lactobacillus rhamnosus (LGG). I still rely on this one a lot.

One that I have found helpful (and found via info on this forum) is Dr Ohhira's probiotics (original formula).

However, without knowing via stool analysis what may be pathogenic or lacking in your gut microbiome right now, it really is a guessing game.

 

[Belbyr]

So I have VSL3 in my refrigerator right now. I made a mistake and took one whole packet at one time in a glass of cold water. I bloated up to the size of almost literally a 16lb bowling ball like I said earlier. At the same time I am not really an IBS-D patient, I bounce back and forth between slow and loose while having some days that seem pretty normal.

I stepped down to 1MD probiotics which also have I believe 11 strains. I have found I can't take one every day, I have to alternate every other day. I have found this to be the case with most probiotics in the past with me.

If you have slow transit time (gastroparesis) then you don't want those probiotics sitting in your small intestines. Motility is what keeps the bacteria in the colon, if the motility or wave action is slowed... the bacteria can come back up into the small bowel. Fortunately when I tested for SIBO, I had some of the lowest levels they had ever seen. I guess that is a good thing?

 

[Belbyr]

This is really complicated, no dr gets into these details . A lot of people here know more than the dr's , by far!
That's too bad the vls3 made you bloat up. Do you have a mast cell disorder ?

I don't know if you can answer this but I have daily loose , gas and can't tolerate any foods . Then after that going untreated , I started to get feelings I was so full I regretted eating , like food was in my stomach and my stomach was to capacity and I can't stand it . Then a burning not quite center but to the left of center . I thought oh this is what heartburn is but it's like torch in my chest, it's so hot and on fire , it burns and goes all day . Sometimes I grab it but that makes no difference . I don't know if it's related to my gi issues .
I'm dying off , lol. Nothing works anymore . Nothing . Ears , eyes , lungs , gi, etc , all ruined .

My cognition is so poor , I also feel immediately drugged after eating and like I have to sleep but also I sometimes pass out but I can't stsy down , I have a struggle with my body is going down but my mind is in a panic and it's torture for 2-3 hrs and I can't get out . Eating has become a terror but I keep doing it . I went through 4 months of not really eating and got down to 100 lbs , I was so weak I was shaking and then I somehow decided I wanted carbs and kept eating . I love vegetables but I can't digest them , gross processed foods go down . It makes no sense .

The cheat burning and pain really hurts . It's so sharp .

I see Dr Klimas for the first time in 2 days, this is one of my questions, Could I have mast cell disorder of the GI tract?

I hate to hear about all your GI problems, GI issues are the worst! Have you done a Smart Pill test by chance? I had one done, it was normal to my surprise.

 

[Belbyr]

Yeah riding on 2 wheels for some reason is an addictive thrill. I no longer have the motorcycle but I do have a nice mountain bike that is hanging in the garage hardly used. I thought to sell it but figured maybe there will be a breakthrough sometime in the next year or two...

Nancy Klimas is an immunologist by trade, so hopefully she will know.

 

[lafarfelue]

Why are probiotics bad for sibo? The allergist/immuno said don't take probiotics, something to do with My mast cells , I was passing out at that visit so I honestly don't remember what he said . My gut is terrible . I tried taking pepto bismal and allergist said that was a terrible idea due to sulfur . It didn't help . I tried charcoal. I just ordered vls3 , mainly for my cat . We have the same symptoms . I took her to multiple specialists and they're stumped although they observe the symptoms . CFS is real . Something was in our environment .
No one tested me for sibo. All I know is I have daily loose stool . Dr's all documented ibs but didn't share that . One said it's celiac and go get a colonoscopy and endoscopy and another said I would be sorry if I didn't get the scopes . Really hate dr's at this point.

Anyone have luck with vls3? Probiotics ? Florastor is supposed to be good to but I don't know , so many of us hsve weird sensitivities. Or maybe some of these things are not good for anyone and we just detect them better because we are like a living alarm . Someone popped open a monster drink and the smell made me cough a lot and it smelled like toilet bowl cleaner . I used to drink these.

Good topic , no good input from me , other than regular dr's warned against it and people who went to functional med dr's say it was advised

It might be worth starting your own thread for all these questions, more people will be likely to see it and be able to answer you more directly.

It also helps keep threads to answering the original poster's questions without sidetracking and hijacking their original questions (which is also very helpful for us all dealing with brainfog and reserving energy!).

 

[fredam7]

It might be worth starting your own thread for all these questions, more people will be likely to see it and be able to answer you more directly.

It also helps keep threads to answering the original poster's questions without sidetracking and hijacking their original questions (which is also very helpful for us all dealing with brainfog and reserving energy!).

I deleted my post , better ? Weird you quoted my entire post that messed up the thread , that should help clean it up ...

 

[fredam7]

Yeah riding on 2 wheels for some reason is an addictive thrill. I no longer have the motorcycle but I do have a nice mountain bike that is hanging in the garage hardly used. I thought to sell it but figured maybe there will be a breakthrough sometime in the next year or two...

Nancy Klimas is an immunologist by trade, so hopefully she will know.

Keep the bike, you will get better. You seem to have a handle on a lot of the options.

Let us know how the appointment turns out. Hopefully you don't have a mast cell disorder . Don't know if you have a definitive CFS diagnosis or still putting it together . Maybe a mast cell disorder is driving it all.

 

[tiredowl]

Ugh, I don't know if I can try Mutaflor again- it worked for a while, but now I seem to get anxiety after taking it-
Anyone know if taking Mutaflor can be damaging for us? Considering it can enhance bioavailability of serotonin in the gut. I hope someone have some useful information on this, because serotonin seems to make me feel worse in the long term. Kind of worried about trying another probiotic.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4663480/