Old 04-03-2018, 12:55 PM #1 (permalink)
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Default Article about demographics etc for ALS reversals (Dr. Bedlack)

I follow Dr. Bedlack on twitter and this popped up yesterday....really interesting. Makes me want to try some of the supplements they mentioned:

"The odds of taking curcumin, luteolin, cannabidiol,
azathioprine, copper, glutathione, vitamin D,
and fish oil were higher for cases than for controls."

I'd love to hear about doses and/or experiences with any of these.

I'll paste in the abstract and link the full text version:

Abstract
Objective: To identify differences in demographics, disease characteristics, treatments, and co-morbidities between patients with ĎĎamyotrophic lateral sclerosis (ALS) reversalsíí and those with typically progressive ALS. Methods: Cases of possible ALS reversals were found in prior publications, in the Duke ALS clinic, through self-referral or referral from other Neurologists, and on the internet. Of 89 possible reversals identified, 36 cases were included because chart or literature review confirmed their diagnosis and a robust, sustained improvement in at least one objective measure. Controls were participants in the Pooled Resource Open-Access ALS Clinical Trials database and the National ALS Registry. Cases and controls were compared using descriptive statistics. Results: ALS reversals were more likely to be male, have limb onset disease, and initially progress faster. The prevalences of myasthenia gravis (MG) and purely lower motor neuron disease in cases were higher than estimates of these prevalences in the general population. The odds of taking curcumin, luteolin, cannabidiol, azathioprine, copper, glutathione, vitamin D, and fish oil were greater for cases than controls. Conclusions: When compared to patients with typically progressive ALS, patients with reversals differed in their demographics, disease
characteristics, and treatments. While some of these patients may have had a rare antibody-mediated ALS mimicker, such
as atypical myasthenia gravis, details of their exams, EMGs and family histories argue that this was unlikely. Instead, our
data suggest that ALS reversals warrant evaluation for mechanisms of disease resistance and that treatments associated with multiple ALS reversals deserve further study.

Here's the article link
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Old 04-03-2018, 08:31 PM #2 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

Thanks for providing link to this fascinating study. Itís not clear to me how often ALS reversal actually occurs (unless I missed it in this article). Itís also not a definite conclusion from this study if any particular supplement or combination facilitated the reversal. The study simply shows correlation, but thatís still interesting.

I suspect ALS is a collection of many different diseases, and there was something else ďspecial ď about the individuals with disease reversals. It could be that the supplements provided additional neuroprotection in people who already had some other advantage which favored disease reversal.

Regarding Azathioprine, which was on the list of things taken by some people with reversals ó this is a potent immunosuppressive drug, used to prevent transplant rejection and also used for treating autoimmune diseases such as Crohns and lupus. It is a prescription medication and I would be surprised if anyoneís neurologist will prescribe it for ALS.
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Old 04-04-2018, 02:18 AM #3 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

I think the Azathioprine is used to treat Myesthinia Gravis which some in the study had.

I think the article is fascinating. If the supplements donít have much risk, I donít see why not try them. Iím going to try curcumin, glutathione and maybe CBD oil. At the end of Dr Bedlackís review of curcumin, he mentioned maybe starting a trial of ďTheracurminĒ 90 mg twice a day.

Fish oil and Vitamin D are common supplements.

Copper and Luteolin are less clear to me...risk/benefits etc
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Old 04-04-2018, 02:28 AM #4 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

Karen Dr Bedlack has previously published on plateaus and reversals You can probably find it in a pub med search. Think 2-3 years ago
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Old 04-04-2018, 08:09 AM #5 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

Baby cakes;

You s said "he mentioned maybe starting a trial of “Theracurmin” 90 mg twice a day"

My wife's neurologist prescribed curcumin and my daughter purchased it online but it was labeled Theracurmin. The information on the label explained that ingredients were Curcumin but an additive made the dose more effective for body obsorption. Does this track with what you know about Theracurmin?
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Old 04-04-2018, 08:22 AM #6 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

The ALS program I'am on is very similar, it is basically a vitamin program and no progression for 1 1/2 years. I know other members have tried the program but I don't know thier results. The only drawback is that is rather expensive, but still much,much cheaper then stem cell treatment.
Al
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Old 04-04-2018, 10:41 AM #7 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

Iíve been taking Tumeric, which has Curcumin. Is Theracurmun completely different?
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Old 04-04-2018, 10:59 PM #8 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

Theracurmin is a brand that says it has more bioavailability, although I havenít researched it myself. Itís not super expensive, I bought the 60 mg tablets on Amazon. The ALS untangled write up about Curcumin mentioned that brand specifically, so I thought Iíd go with that.
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Old 04-04-2018, 11:02 PM #9 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

Quote:
Originally Posted by Firefighter58 View Post
The ALS program I'am on is very similar, it is basically a vitamin program and no progression for 1 1/2 years. I know other members have tried the program but I don't know thier results. The only drawback is that is rather expensive, but still much,much cheaper then stem cell treatment.
Al
Would you share what youíre taking?

Thatís awesome that youíre progression has stopped for 18 months! Happy for you 😊
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Old 04-05-2018, 11:58 AM #10 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

In case Al doesn't see the question I believe he takes Vitamin E, Vitamin C, Resveratrol, Ginseng, Acetyl-L-Caritine
CoQ10, Creatine, Bitamin D, PQQ, Calm Magnesium.
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Old 04-06-2018, 09:27 AM #11 (permalink)
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Default Re: Article about demographics etc for ALS reversals (Dr. Bedlack)

Anyone interested in the doseage amounts can find then under Supplements/AKNates post. I take them by tube that was installed before the program,now I don't need the tube but it does make things easier.
Al

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