SUPPLEMENTS TO SLOW ALS PROGRESSION

[Carol]

I don’t have any GI issues but just thinking about cumin or black pepper irritates my stomach and esophagus!

[Mark S]

Carol, I was concerned about that because I have dangerous reflux and esophagial weakness but there must be something in the processing that makes it unlike a standard herb/spice.

 

[svarog]

I would like to take Nutricost TUDCA and Theracurmin HP as in the trials, but having difficulties purchasing them in Europe. Does anyone know of any alternatives that are available in EU / Netherlands? Or ways to purchase and ship these from US in bulk? Where do you get your supplements from?

[Jean-Pierre Le Rouzic]

In German’s Amazon there are two brands of TUDCA.
In Netherland’s Amazon there is one brand: “TUDCA Liver Support”

[NJGuy]

Thanks Mark & Carol!

I have ordered Theracurmin, will soon receive that and will start. I am seeing actually good effects of just turmeric + pepper in warm water – three times a day. I am sure Theracurmin will be even better.

For any acid reflux / digestion issues, I am taking all natural Trifala churan (powder) – one tea spoon after dinner, this helps control acid reflux and helps clean up stomach. Any indigestion or GI issue really brings up bad microbiome (Dr Bedlack has talked about this in detail).

Sava, I normally order supplements on Amazon or get from local pharmacy like CVS. Do you have access to Amazon?

[svarog]

It seems that Nuticost brand is not available in EU. I have access to Amazon.com (US site) and could buy it there but I’m afraid that it’s not allowed to get them imported into The Netherlands (EU). They may be withheld by customs..

I did find some alternative TUDCA brands though but none of them seems too legit (Brawn nutrition, Hepatica / DG Supplements, ALLMAX Nutrition).

I could on the other hand join the TUDCA clinical trial via TRICALS, but only in 3 months from now as I’ve just started with Riluzole..

[Gideon]

you can buy it on TheSocialMedwork

[Jean-Pierre Le Rouzic]

> They may be withheld by customs.
TUDCA is not a regulated drug, it’s a supplement.
Yet you might have to pay VAT in addition to the Amazon public price.

[Bill Kerr]

i have px for PB/Tudca and was reciving it untill recently from a compounding pharmacy in NJ.  they can no longer supply it  anyyone inow of another source?

[Kathleen B (Katie)]

WOW! What a lot of  supplement things!  I agree most with pALS Ed, and Mandy thanks to pALS Jean Pierre-Le-Ruzic for the well-informed responses! Yes, Dagmar & Amanda—continuing helpful reminders of caution also appreciated!  Now for my own input in this topic:  I have been a supplement user foe 40 years—but always with the cooperation and input of a PCP with knowledge of BOTH Western & Alternative medicine experience.  PLUS—I do have any allergies & sensitivities, and so even ‘natural’ kind of things I am careful to ask about specific ingredients. What I have learned over time, supplements are just that: supplementing what the body lacks or preprocess inappropriately (meaning a well balanced, nutritional diet of real foods from all food groups).  PLUS, it does take TIME for a body to acclimate to supplement use, so monitoring on 3 month intervals, and being aware of our own body system reaction(s) on a cognitive level is very important to not over using supplements or wasting of time & money.   All that said, I am only 1 year, 10 months into lumbar onset sporadic ALS—and Riluzole was HIGHLY non-compatible with my system for 3 week trial—the EXTREME FATIGUE  was very debilitating!  But, I do maintain my 17 supplements, and just thyroid script—with nod from neurologist as I have been working all along with PCP’s on this.  Some ARE indeed what others are on; but, for me, I have found it VERY important to avoid anything containing soy,ragweed or mold components in all supplements. I was found to have total absence of glutathione and good  gut bacteria—once those were supplemented  overall health improved for better (3 months or so).  This was determined by the PCP referring to a well-versed allergist for testing,  and a sound urine-blood nutritional, toxins, and digestive micro biome test.  All before being diagnosed with ALS at age 64, 1 year after retiring.  So, while I am thinking perhaps these are helping maintain general health thru this now ALS body, I do think that is a good thing overall.  Despite the fact that my legs are now only functional for brief standing for transfer & I rely on a power chair for safe mobility.  I think there is something about supplements & each of our body systems that merits research—but that may be awhile down the road—the race to find something in the medical world to slow progression for sure will hopefully be coming sooner!