why don't researchers care about toxins?

[BethU]

Not that I am one of the amalgam nuts ... to the contrary, I think most of that is a bunch of hooey ... but it is my understanding that where science currently stands on the cause of ALS is that it is three genes behaving badly along with some environmental triggers.

I signed the forms to donate my body (when I'm done with it) to a local university last week, and have had two loooong interviews going over my and my family's medical and lifestyle history, and there was not one question about exposure to toxins, other than the most commonplace illegal drugs.

It seems that would be extremely easy data to gather. If there's no connection to toxins, fine, but why not collect the data and see? The forms I signed gave them permission to share my tissues with other research facilities; if this local one is not investigating toxins, perhaps others are.

Or is no one but conspiracy-minded PALSes (is that singular or plural?) interested in the subject?

I suspect the U.S. database of PALS that is supposed to be up and running this year will be equally disinterested in compiling detailed backgrounds.

 

[sadiemae]

Did they ask about vaccines you have received over the years?

 

[BethU]

No, nothing about vaccines, either. Or illnesses, for that matter, except for neurological events.

 

[Andy2020]

Not that I am one of the amalgam nuts ... to the contrary, I think most of that is a bunch of hooey ... but it is my understanding that where science currently stands on the cause of ALS is that it is three genes behaving badly along with some environmental triggers.

I signed the forms to donate my body (when I'm done with it) to a local university last week, and have had two loooong interviews going over my and my family's medical and lifestyle history, and there was not one question about exposure to toxins, other than the most commonplace illegal drugs.

It seems that would be extremely easy data to gather. If there's no connection to toxins, fine, but why not collect the data and see? The forms I signed gave them permission to share my tissues with other research facilities; if this local one is not investigating toxins, perhaps others are.

Or is no one but conspiracy-minded PALSes (is that singular or plural?) interested in the subject?

I suspect the U.S. database of PALS that is supposed to be up and running this year will be equally disinterested in compiling detailed backgrounds.

I agree Beth.

All ALS patients should receive a battery of tests for heavy metal poinsoning along with tests for PCR testing for bacteria, viruses, etc that might show a correlation between ALS patients.

 

[serenade]

When I first went to the als clinic a student from the University of Pittsburgh did a survey on me she did ask about toxins, and well water from what I can remember.

 

[Andy2020]

When I first went to the als clinic a student from the University of Pittsburgh did a survey on me she did ask about toxins, and well water from what I can remember.

Sounds like she will make a great addition to the neurological community.

 

[trtt]

Hi BethU,

I wish toxins had more studies and research...My mom was diagnosed in Dec 09....and she has an ALS specialist and a Homeopathic Chiropractor as well.. I feel the toxins are a big reason for ALS, we have proof that my mom actually had some progress in a positive direction, with working with her Homeopathic/C on diet changes, detoxing, and supplements, plus light exercises, plus low laser treatments to molecularly get her cells activating...she had actually gained strength in her grip as well as lifting. I know everyone is different and has different reactions to treatments, however for my mom this seems to be working so far. She has not lost more use of her hands, and she has been on this plan from the beginning of Dec 09 to present and still continuing on all of the above...

I am one that definately believes in toxins creating disease, and I have researched into how cells react with toxins, what research states is that toxins have a mutating effect on cells, and in some cases, therefore once mutated the cell then develops an ability to adapt and survive and actually in some cases hurt the healthy cells. It is fascinating to study this area of biology. I am one who wishes that there would be more studies and research in this area, I believe toxins have to do with not only ALS, but many diseases including cancer. If anyone out there is a biologist or researcher, please hear our plea for continued research and let the research be known, let the world change how we live, what we eat and breath....


I'm in your corner...

trtt

 

[indigosd]

Sweet Beth, I am bumping this post back up to the top! I AGREE and I am not a Scientist BUT if you think about what is the COMMON thread it seems to point to immunizations/TOXINS/STRESS combined with a genetic fragility somewhere on the DNA. Why is it that ALS loves the "nice people" and not the drunks, the pedophiles, the drug addicts or any of those scum of the earth type people? I hope and pray that the GOVERNMENT FUNDED ALS database will actually collect meaningful data and not just be another cash cow that supports Researchers and Drug Companies lovely all expenses paid lifestyles. One proactive thing that all PALS, CALS and the people that love them can do is to become passionate about telling our stories. We can no longer afford to be silent and passively await the end of our lives. We need the exposure so that the public is aware of this horrific battle for our lives. WE NEED TO JOIN TOGETHER AND HAVE A BATTLE PLAN that is more than raising MONEY for MDA and ALSA! I really hope that the next time someone wants to do a Walk to Defeat or any of those other fundraisers, they will stop giving to those Organizations that do so little to really help us and instead RAISE MONEY AND AWARENESS FOR ALS GUARDIAN ANGELS! Ok, I will get off the soapbox. Kay Marie

 

[pepsiman]

Well, I still wonder why ALS became a covered illness by the VA. I remain convinced they know something they're not willing to share. Probably something that would put some large companies out of business (think the tobacco lawsuit and extrapolate from there to say, some common foodstuff). I think the researchers don't look hard at toxins because they're afraid of what they might find. This disease used to be extremely rare, now it seems like everyone I talk to knows someone who has it or has died from it.

 

[sadiemae]

I AGREE! The government does not like to give money away, but they are giving a blanket coverage that has never been given before. Agent Orange Vets have do go through all kind of hoops and barrels, so I believe they know, and they need to tell, so we can find a cure. My husband had split training, so he was given double doses of his shots. Our service officer also had double shots, and while he does not have ALS, he does have tremors and shakes. He is convinced it has to do with the shots. We feel the cases of ALS will triple in the next decade due to Vets reaching the "magic age" 40-60 yrs old. My neurologist agrees it may have to do with vaccines, but does not believe in the "conspiracy theory." Maybe I will contact Jessie Ventura! Everyone I talk to about ALS is aware of my beliefs. HUGS Lori

 

[LisaF]

Hi - I'm new, as my mom was just told that the neuro is 'suspicious' that she has NMD. She only has symptoms in the bulbar region at this point.
Anyway, I've been reading Steve Shackle's blog:

He has been living with ALS and is a firm believer that toxins play a role. Has anyone ever read his blog? Also, we're thinking of having the mercury fillings removed from my mom's mouth -- has anyone done that?
Thanks so much for any information, as we are right now at the shocked, devastated and completely overwhelmed stage.
~Lisa

 

[Al]

If you use the search feature and look up amalgam fillings you'll find it does no good.

AL.

 

[JeffP]

i will tell you this i live in upper michigan on the border of wisconsin in iron mountain were you all aware that in greenbay down to the up has the highist rating cases of als .now what do i think about that whats in the air miners did most of there workm here whats in the ground were always getting noticices on something is wrong with the water dont drink until further notice .makes me really wonder alot

 

[pepsiman]

I have no doubt toxins play a role. Thing is, by the time someone is actually showing symptoms of ALS, it's way too late to fix the problem by doing things like removing fillings (which I doubt make a difference anyway). What we need is much, much more research into the possible causes of the disease. Until we figure out what causes it we're stumbling around blindly in the dark searching for treatments. This is probably the least understood part of human anatomy so until we start funding research efforts into both understanding the functions taking place and how they go wrong we're not going to get anywhere. God bless those people in DC tonight working towards getting that sort of funding. Do everything you can to make people aware of ALS, as one person, that's the most effective effort you can make towards finding a cure.
Dick