Wednesday, 24 August 2016

More Quacks

I just deleted a comment from yesterday's blog post. In that blog I was discussing the struggles of budgeting and how grateful I was for the help of others. The comment, unfortunately, in no way spoke to the struggles of living with ALS. This post was a lengthy diatribe by a fellow who claims his mother had ALS, and that she was cured by the special medicine from this doctor I have never heard of.

I know it was an outright scam, but it reminds me of the numbers of people out there with cures, treatments, and all kinds of others things if PALS can only pay for them. Some of these treatments, like the Deanna Protocol, have achieved near clinical status thanks to the people behind them and the fervent belief of those taking them. Then there is the fellow who regularly screams into the ALS support groups on Facebook about how ALS is really Lyme Disease and if we only treated it that way, everyone could be cured. And let's not forget the stem cell clinics of dubious origin in countries lacking in medical standards, proclaiming unprovable cures. Every PALS I've ever talked to online has had little or no benefit from stem cell treatment, and costs that range in the tens of thousands of dollars.

We are a target, some intentional and some truly dedicated in their belief that this particular diet or that particular toxin cleanse will lead to improvement. Yet I see no medical research supporting these claims. There are unique studies going on in legitimate medical centers, yet they do not proclaim miracle results in significant numbers, sometimes not even in small numbers. A single patient who response well to a given protocol does not a cure make.

I think the saddest case I have seen is those who believe that mercury in their teeth fillings is the cause of ALS, and by removing all their fillings they will slow or eliminate their symptoms. They are do desperate to find a cause that even limited coorelations will drive them to strange behaviour. If dental fillings caused ALS, then virtually every person in North America would have the disease.

The truth is that we still don't know what causes this disease. What's more, we still have no viable treatments, nor a cure. No magic doctors with secret potions, no miracle diets, no toxin cleanses, no dental fillings, none of these and so many others things are at the root of this evil. The most powerful thing you can do if you get ALS, is to determine that you will live with it, as well as you can for as long as you can. Wasting money and limited life cycles is not just foolish, it's criminal.

6 comments:

  1. Thank you for stating this. I always say, if there's a true treatment or cure, we'd all hear about it.

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  2. Amen. Desperate people are easily preyed upon.

    I read somewhere else something like "Genetics loads the gun, environment pulls the trigger.", which is about as close as any of the experts have come up with.

    No amount of chelation therapy, detoxing, mindfulness and diet change will prevent ALS. Nor will those provide a cure. At the most, a vitamin regimen MIGHT slow progression down. But only for some people.

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  4. I think it's determining what doesn't work for your body. Not that that is easy. I think each person has something that's not clicking and for each person it may be a different thing that affects their body one way but not someone else's. Perhaps the key is to just stop all the "possible" things. All at once. Repair or replace with something better.

    I think it's odd that nothing natural will ever be approved because pharma cannot patent anything natural.

    So if something truly made a major difference, since pharma cannot make money off it, because they can't patent it, there will never be any studies. It just won't happen. So even if green gum works, there will never be a medical study.

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    1. That's what the Ice Bucket money is all about. It funds all kinds of non-pharma studies. My neurologist is working on a study right now with a naturally occurring neurological remedy, funded by the ALS Association of Canada. I was asked to participate but did not meet the requirements. My ALS is too slow moving to determine if the treatment is working.

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