There's no place like Microbiome -(Probiotic advice please)

[Kes]

Howdy folks,
I've not ventured really into the probiotic world other than an unsuccessful experiment with kefir a few years ago which made me feel rough,more fatigued basically.

I'd be nervous about starting out with anything too strong. I am severely affected and am only managing to be out of bed for around an hour per day for meals with a bit more for basic needs. My understanding is that probiotics are an immunmodulator and so suppress an overactive immune system. I suspect this is the case with me. I have gotten very few colds and bugs in the last twenty odd years and only a few mild colds where paradoxically I felt a bit better in some ways. So on that basis they seem like something that might be worth a go. I'd like to do so cautiously though.

I've become a bit weary of trying stuff as I either seem to feel awful from stuff or it overstimulates me. Currently I'm taking no meds and no supplements. I used to take supplements up until about 6 years ago. I find a time release Vitamin C or a Vitamin D tablet perks me up if need to do something. I've become increasingly sensitive to caffeine, even a sip of caffeine tea is enough to overstimulate me for a day or two followed by feeling rubbish for a few days. Have had some gut problems / indigestion for about 6 years which I find yoghurt helps manage and Rennie when it flares up but bizarely the peppermint flavour does nothing only the spearmint flavour helps settle things.

I'd be interested to hear some suggestions particularly from folks who are generally very sensitive to things...Cheers, Kes

 

[Judee]

This member's website seems to have the most information about probiotics in reference to this disease: https://cfsremission.com/probiotics/

https://cfsremission.com/treatment/...illnesses/changing-microfloras-by-probiotics/

He has survey results of ME/CFS patients who have taken them and participated in his survey here: https://cfsremission.com/2016/07/10/first-survey-results-on-probiotics/

The two that I got some tiny results from were Mutaflor (stabilized my blood pressure which was previously very low) and Securil (no great bump in energy but made me remember what my ME felt like years ago when I was younger and not done in by it so completely). I know that's an odd way to explain it but it was a vague change but for the better, I think.*

https://cfsremission.com/2014/04/16/my-favorite-probiotic-e-coli-nissle-1917-mutaflor/
https://cfsremission.com/2014/01/27/propionibacterium-freudenreichii-another-probiotic-of-interest/

*Unfortunately, most of my improvements have been somewhat vague. It's more that I don't feel as bad as I normally do and can get a bit more done when I have an improvement. So far none have lasted that long and like many here the positives tend to stop being there with repeated use or continuous use.

 

[Rufous McKinney]

I'd be nervous about starting out with anything too strong. My understanding is that probiotics are an immunmodulator and so suppress an overactive immune system. I suspect this is the case with me. I have barely gotten Ill in the last twenty odd years and only a few mild colds where paradoxically I felt a bit better in some ways. So on that basis they seem like something that might be worth a go. I'd like to do so cautiously though.

sorry- I am unclear why you want to add Probiotics. You indicated you have barely gotten ill in the last 20 years, so I must be mis understanding your situation.

the health practitioner I visit- chinese traditional medicine- is not very enamored with probiotics and I don't take them very often, and have had odd reactions which leave me sometimes just deciding to go along with his recommendation that i avoid them. So thats just an opinion I'm sharing....

 

[Kes]

Thank you @Judee for sharing that and those links. I've not had a chance to look at them yet but I will do and really appreciate you posting them. Sorry @Rufous McKinney, what I had originally wrote some of it wasn't saved when I switched back and forth from another application. I have edited my post now to say I am severely affected and only up for around one hour a day for meals. I was messaging another member who has noticed significant help from probiotics and who also appears to have an overactive immune system. When I said I'd not been ill much I meant in terms of catching colds etc. In terms of M.E. I have indeed been ill for 22 years now. Thank you for drawing my attention to the lack of clarity in my post and for sharing your experience..

 

[Learner1]

This member's website seems to have the most information about probiotics in reference to this disease: https://cfsremission.com/probiotics/

https://cfsremission.com/treatment/...illnesses/changing-microfloras-by-probiotics/

He has survey results of ME/CFS patients who have taken them and participated in his survey here: https://cfsremission.com/2016/07/10/first-survey-results-on-probiotics/

The two that I got some tiny results from were Mutaflor (stabilized my blood pressure which was previously very low) and Securil (no great bump in energy but made me remember what my ME felt like years ago when I was younger and not done in by it so completely). I know that's an odd way to explain it but it was a vague change but for the better, I think.*

https://cfsremission.com/2014/04/16/my-favorite-probiotic-e-coli-nissle-1917-mutaflor/
https://cfsremission.com/2014/01/27/propionibacterium-freudenreichii-another-probiotic-of-interest/

*Unfortunately, most of my improvements have been somewhat vague. It's more that I don't feel as bad as I normally do and can get a bit more done when I have an improvement. So far none have lasted that long and like many here the positives tend to stop being there with repeated use or continuous use.

I did not find his suggestions at all useful.

My results were run through his algorithm and it literally told me to eat glyphosate (RoundUp) and high maize cornstarch (I'm allergic to corn. His theory about fixing the gut cures ME/CFS sounds plausible, but is wrong. We have a lot of other things wrong with us that need to be fixed. My microbiome was in pretty good shape When I was at my sickest, and after antibiotics, it was in worse shape but I got better.

I've found Viome's supplement and diet suggestions to be far more useful.