Article about HA-114 Probiotic

[Kzwalt]

If the gut microbiote is so important, what are we doing to ourselves taking recommended drugs that cause gastric upset, nausea, vomiting, and diarrhea?

 

[lgelb]

The science/balance of probiotics and prebiotics, whether naturally occurring in food or supplemented, is controversial at best, and the studies that have suggested improvement in ALS that did not pan out are legion. There have also been documented harms in some probiotic regimens, and there are some clear contraindications such as those with artificial heart valves/grafts/other implants.

It is certainly not true that any drug that has GI side effects (a list of thousands) is harming the microbiome, or that we can characterize today whether any supplement has the ability to affect any aspect of microbiome that could actually affect the natural history (progression) of ALS.

As always, most people here would recommend that, well or healthy, any supplements or rx taken have some clear rationale behind them, because metabolizing any rx or supplement taxes the body, and we know that ALS affects the metabolism. We would also recommend that these substances be started one at a time and that any necessary labs such as liver function tests for those on riluzole be diligently completed.

The effort required to breathe, swallow, move, speak, digest -- whatever the PALS can still do -- can be compromised by virtually any regimen at any time. I agree with the dietician that good food [I would include liquids in that] is the foundation of anything safe that you try. That is also why many of us strongly oppose the use of traditional corn syrup-based tube formulae and recommend real food blends and/or "close to nature" tube feeds such as Whole Story. Starving the body of nutrition is tied with lack of needed respiratory support as the quickest way to lose function prematurely, and poor nutrition only accelerates respiratory decline.

 

[KimT]

I would suggest getting your microbiome tested. My primary care does this test and, more recently, my gastro also does it.

Also, as Laurie points out, if you're on tube feedings, get something as close to whole food as possible. My first choice would be a Vitamix with what you normally eat supplemented with Whole Story or even Ka-Chava. You can get food-based vitamins as well and they come in powered form so easily mixed with formula.

 

[Buglaw]

I agree with Lgelb. We don’t know enough about the micro biome to make any concrete reccomendations of any sort for anyone. As a former ibs sufferer I went down the probiotic and micro biome research rabbit hole, and the research is confusing and contradictory. Even where probiotics seem to be helpful (like ibs), how it works or what strands work or how to take them or when to take them is very unclear. For example, one of the studies showing probiotic supplementation alleviated ibs symptoms did not show an increase in the micro biome of the bacterial strands from the probiotic.

We don’t even really know enough to say what a “healthy” micro biome is. We can say certain diseases seem to have certain similarities in the micro biome, but no one knows what this means. Micro biomes also differ dramatically throughout the day, geographically, by diet and by culture. I’m very very skeptical of a worm model being of much benefit for something like humans incredibly complicated micro biome.

All that being said, I took a probiotic previously for ibs, so switched to one with this strain in it given the study. If I wasn’t taking one for other reasons I wouldn’t start now.

 

[Nikki J]

Agree with Buglaw that we don’t know what kind of microbiome would be best for ALS. Not only that we don’t know if it would be the same for all PALS. If mouse studies ( notoriously unreliable as they are admittedly) are any indication it won’t be. A microbiome that appeared to help c9 did not help sod1 mice and vice versa.

 

[rao]

Found this probiotic with the HA-114 strain it’s the best I have found so far. We have been on another multi probiotic with the HA114 strain for about a month and progression is still slow so it’s not hurting at least!

thanks for this, anyone had any luck findin somewhere that ships this outside NA? amazon shows not available n few places ive tried only ships to NA

 

[PiratesWife]

I haven’t found anywhere that ships outside of NA … but I wasn’t searching.
I ordered from here:

Spectrum Supplements dot ca- search "Duo dophilus"
(commercial link removed)