ALS and Toxicity

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Janders

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My husband diagnosed in January with lower motor neuron disease, ALS. He seemed to respond positively to PT, and looked more stable on his feet. At the same time, hand function declined. We went 'off the grid' in March seeking input from integrative MD who performed toxicity studies. Results were astounding, especially petro chemicals and pesticides. Almost too high to be believable...but results consistent across three tests. Stumbling in area of detox and how to approach, and if it could even make a difference in progression. Anyone have any experience with this?
 

lgelb

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I know we have some members who do have personal experience with having fillings removed, etc., who hopefully will chime in, but I will say from the scientific perspective there is zero evidence that detox (even presuming these tests reflect validated lab assays rather than self-interest), is able to slow progression.

The concept that you have these hidden toxicities that somehow bubble up unappreciated in any other way except stealthily killing off motor neurons (and once these are dead in ALS, they're dead) -- think about how selective an effect that would be at the levels these tests "reveal" -- is nonsensical. If you eat bad fish, you are going to notice it. But this is not true for toxin levels powerful enough to paralyze you?

And yes, I can anticipate the "they've been affecting you for years and you didn't notice" responses that are part and parcel of every scientific quackery review you'll find, because it's unprovable but lucrative. There are no documented cases of the changes you would hope for with this methodology, apart from emotionally and/or financially-fueled testimonials.

I will also note that my husband checked every exposure box on the Stanford/NIH list of potential etiologies in that study (he lived an interesting life), yet had what is considered a relatively long survival time despite starting behind the eight ball, e.g. FVC had already declined to <60% due to other illness pre-ALS.

Sadly, ALS is an ATM for some practitioners. I urge you to preserve your money for things your husband will need or that would improve his quality of life, that insurance does not pay for, which is a long and expensive list. Of course, I would also monitor legitimate clinical trials that he may qualify for -- you can set up alerts. There is still much you can do in terms of improving quality and quantity of life.

Best,
Laurie
 
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Janders

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Hi Lauri, Thank you for your cautionary remarks. I do so appreciate it.
I will let you know that the Dr. discovering the high toxicity is an MD, and the sister of a good friend (or otherwise I could not get an appointment as she is so busy). It's costing very little as only an occasional tel-a-med visit and a couple of supplements.
I have been on my own auto immune journey for 7 years. What was interesting to me is that I felt no reactivity to food or other environmental exposures until I was 'clean' which took several years. I got clean (supervised by a neurologist) by eating organic and eliminating white sugar, all gluten, dairy and nightshades. I also got the strongest air purifier on the market, switched bedding to 'approved' products low in toxicity and installed a reverse osmosis for drinking water (which I re-mineralize). This is not for everyone as it takes a good deal of discipline and lifestyle changes on the magnitude I went for are more expensive. Once I was clean, I noticed my body reacted profoundly if I were exposed to mold (subsequently confirmed by blood test), for example, or inadvertently ate gluten (hives, cramping). I had had no such reactions previously. In layman's turns, the Neurologist said I was out of survival mode and strong enough to react. The six pathogens in my gut reduced to 1 and blood / urine / stool markers for diabetes, heart disease and dementia all improved. My pain decreased. My neurologist did not sell me supplements but did pass along what he had discovered was helpful. I think there is much we are learning about chronic auto immune.
In my husband's case, he was having intense itching as the mild detox began, which has now stopped but of course we don't know if it is related. And we don't know if a detox strategy is viable at all. I will say the blood work is astounding -- it's not just exposure, it is the inability to process toxins out which is genetics. I do realize I'm grasping at straws and MD has been quite clear this is not a silver bullet.
You are right that clinical studies are non existent but this is true not just for ALS but most life style approaches to addressing auto immune.
Thank you again for your thoughtful response.
Judith
 

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Please do keep us posted on how this goes and thank you for being willing to tell us about your situation and choices.
 

Janders

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Thank you Tillie...will do
 

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I whole-heartedly support integrative medicine. I am pursuing the same route with tests for toxic exposure and the remedy. I'm just beginning this path myself. I say reject those who have negative remarks about holistic or non-traditional practitioners. Traditional medicine has nothing of substance to offer PALS (I am a PALS). Alternatives may be expensive since insurance may not cover it, but it's your life. Go for it! I plan to beat ALS with God's help.
 

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Cathy, to indict all of traditional medicine, and urge people to reject any negative statements about everything else, would seem a sweeping oversimplification. The world of "integrative medicine" is very large and people have died senseless deaths/lost considerable function there.

Also, please be aware that as per our Terms of Service, we will delete or edit posts touting potentially harmful treatments, and likewise will not permit abuse of anyone who makes different choices than you.

If there were a magic regimen or potion that represented an ALS cure, there would be no fear of its being clinically evaluated, nor the need to denigrate "traditional medicine" in order for that to happen.

Just a reminder to all to keep religious content in the Religion forum.

Best,
Laurie
 
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Cathy H

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Laurie
Dr. Richard Bedlack from Duke University has confirmed 41 ALS reversals. He is researching them to see what they have in common. Many of them used a naturopath/ alternative physician's help, supplements, nutrition, and a positive mind-body connection to hope for their healing. To me the most impressive reversal is Mark Manchester who was on a respirator for 3 years and is now walking, talking, eating and enjoying life. I have found a community of hopeful people at another site. Their goal is to have 1000 ALS reversals documented by the end of 2022. I hope to be one of those.

Thank you for the opportunity to clarify my position. I certainly wouldn't want to encourage anyone to participate in dangerous treatments. Making healthy lifestyle changes under the direction of a naturopath is one of the choices I have made. I still see my neurologist as well.
Best wishes
Cathy
 
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Clearwater AL

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Last sentence, last paragraph concerning ALS Untangled lengthy review....

"Based on the above discussions, we do not currently recommend LEAP2BFIT
as a way to slow, stop, or reverse ALS."

Dr. Bedlack also participated in the review.

PS.
“As of July 2020, Dr Bedlack had found 48 confirmed ALS reversals around
the world.”

Key words to remember,,, “ around the world” Almost a million people
around the world compared to maybe just 8 or 10 thousand here in the United
States.

These reversals are extremely rare, even Dr. Bedlack said,

“The person never had ALS but something that looks so like it,
it was mistaken for ALS.”

MND is defined in different ways in different countries making comparisons
difficult.
 
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