I was curious as to what other people are trying now. It seems like the hype of CB is dying down (although i have had some slight benefit from CB) and i was wondering if someone could lead me to a different thread where people are getting help. I thank you in advance.
Someone just sent me a pm asking about my experience thus far with Mutaflor, which I thought this might be of interest, so I'm posting my response for anyone who is interested. I know I explained about Mutaflor in an earlier post, but for those who missed it, Mutaflor is produced in Germany and is essentially the "E. Coli" version of CB.
The story behind it is pretty interesting. During WWI, a Dr. Nissile was studying a group of German soldiers who had been deployed in the Balkans where the water was contaminated with a high pathogen load. As a result, all but ONE soldier got very sick from water borne pathogens. That one guy became a fascination for Nissile, who hypothesized that this guy had a super strain in his gut flora that protected him, so Nissile started studying his feces until he found this particular strain. He isolated it, sanitized it, and used it to supplement other people. Mutaflor has thus been on the market for a vey long time and since it was taken from the human gut, seems to be able to colonize (though this may require long term supplementation).
My husband is now taking Mutaflor for a 2nd time starting about a month ago (We both have CFS symptoms). He has IBS-D and it definitely improved his GI function. It was more noticeable at the beginning, but even now, there is overall lasting improvement. He also has a lot of weird symptoms that come and go. For example, about a year and a half ago he started getting severe panic attacks, which don't seem to have any obvious triggers (based on their occurrence and frequency, we think it's highly unlikely they have a psychological cause and his recent hypothesis is that they are related to either blood calcium levels or due to the fact he has a mutation that causes his MAO-A system to not break down adrenaline properly).
This is the 2nd time he's tried taking Mutaflor, and it's the 2nd time there's a noticeable decrease in his panic attacks - they've almost completely disappeared. We're not certain that this is related to the Mutaflor since they've reduced in the past without intervention. Additionally, he developed a low blood pressure out of the blue which spontaneously improved both times after starting the Mutaflor. Again, this could be coincidence, we can't be sure. Even though he is by no means cured, and still has fatigue/overexertion issues, in the past month he's been doing overall much better. We don't have proof, but it's our working hypothesis that the Mutaflor's contribution to reducing his panic attacks and normalizing his BP could be related to the increased production of vitamin K2 by the gut bacteria (one of many things this strain of E. Coli is known for), which then stabilizes his free floating calcium in the blood.
We've become disheartened with so many of the vitamins/supplements we've tried in the past few years, but this seems to be one of the few things that appears to be having a positive effect - he's even thinking of doing a longer maintenance supplementation (at a lower dose) of Mutaflor, which doesn't seem to have been tried yet by anyone and could be the key to insuring that there is a lasting colonization.
We also have a brand new bottle of CB that he also is planning to give a 2nd chance. Not sure when he plans to start that as it seems there is no end of supplements we are always in the process of testing out. At the moment, he's been reading about the work of Dr. Jay Goldstein and we are testing out some of the medications he's tried for CFS patients (I just started Tagamet, which is from his list).
