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papaw50

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PALS
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West Virginia
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Ravenswood
Hello,
This is my problem - it's my husband who has als (diagnosed in June '06). His way of handling is not to read or do any research; he's left it up to me. From the beginning, some well meaning friends have mentioned to him about going to a "holistic" doctor. This doctor has come up with the reason those have als is because there are too much metals in their body that causes neurons in the brain to misfire. I guess this one woman who went to a meeting in Georgia where this doctor was at asked him about my husband. He told her he needed to be detoxed completely. Oh! of course, this would mean making an appt with him, letting them test him for metals (I'm sure they'd find something) and then going through chelation therapy (aluminum) or something called dmsa (mercury). I'm sure this would be very expensive and from what I've read under all the forums in the group by doing a search - it doesn't work and these doctors are out to make money.

My problem - I can't get my husband to understand this. He is too trusting for one thing. Plus, he thinks the medical doctors intentionally don't mention going this route because they don't believe in taking herbs, etc. I don't think detoxing would be harmful to him but I also don't believe it is a cure for als either.

How do I convince him of this? has anyone tried the chelation with any success?

or know of anyone who has tried this method and had any success?
I don't blame him for wanting to reach out and find a cure! I don't want him to lose hope either. He says I can't believe everything I read, either - meaning that just because I'm reading on this forum that we need to be careful about seeking a miracle cure because there are many scams out there, that I shouldn't just disregard this treatment.

Just looking for some advice on how to handle this situation. Do you feel that the chelation is a scam? I guess one can order a detox chelation suppository and a metal detection kit? has anyone tried that? Would we be wasting our money? If so, how can I convince my husband? He works with this lady who sells herbs on Amazon.herb. She is the one who is trying to get him to try this method. I guess this doctor has seen 3 als patients and was successful in stopping their progression of als? She totally believes in the products and I think she's being sincere.

Thanks,
Patty
 
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It sounds like a scam to me, strong promises, individuals that have "stopped or reversed progress" (something doctors haven't done); "sincereness on her part", and she's the one selling the products...

I think your husband has the right idea, don't beleive everything you read...

This is how these individuals pay their bills and record profits, they prey on your fears and need for hope, don't buy in to it.

Detoxification is so heavily promoted online because the products are DIRT cheap and have HUGE profit margins; and the "head games" to sell the products are pretty easy for any rookie sales person to grasp.

My two cents.
 
Chelation therapy

I had about 35 IV chelation treatments about 4 or 5 years before I came down with ALS. The doctors do use chelation therapy to remove heavy metals. I tested very high in mercury before the treatments. I don't think it made any difference in my ALS . My insurance payed for part of the bill. Howdy
 
Tracy, thank you very much for tracking down this information, you've probably helped save people thousands of dollars.

Good on you! :)
 
This post will be immediately banned I'm sure!

David, as a "big Kahuna" on this site you ought to do more research before badmouthing a well-accepted Western medical treatment. As more and more evidence is uncovered by Western researchers regarding ALS, the 'toxin theory' is consistently gaining more and more ground. I would like to know if you yourself have ALS. I can find the answer nowhere I've looked yet on this site. A little tolerance goes a long way. The alternative/complementary theorists have as good a shot at solving the riddle of this disease as the Western practitioners who seem to specialize in taking away all hope until they and only they come up with the 'miracle cure'! In the meantime they fill us full of prescription drugs that treat only the symptoms and whose warning labels read "can cause liver failure and death". Might be wise to open up your mind a little, the $$$ and the quackery are far bigger with Western Doctors and Meds than they are with alternative practitioners. Bear in mind that ALL of the major drug corporations have at least one single product that grosses them between 5 and 10 Billion dollars a year, that's right, Billion with a "B"! And that's EVERY major drug manufacturer. The ENTIRE supplement industry in the US only generated $4.6 Billion in gross sales last year. And now the Statin Drugs are being implicated as a possible cause or precursor in ALS. Better do more research.
MarkNH
 
Now don't you think that these guys making Billions of dollars would like to make Billions More. If the alternatives were a viable (meaning good) alternative don't you think the drug companies would be buying the rights to the supplement? To think otherwise is just nieve. As for the statin drug issue there is a study underway in New York where they think higher doses of statins may actually help ALS patients. Once again more research needs to be done. AL.
 
Naive? Al, you can't buy the rights to herbs or supplements unless you come up with a multiple herb proprietary formula and rush it to the patent office, and then it's only that specific formula that you can patent. That's how the money is made on drugs...they come up with a chemical formula no one else has and $kaching$ for the next what is it, 17 years or so? I will be first in line if a drug-based cure is found that I feel isn't toxic, and I think gene and stem cell therapy will allow me to eventually walk again, but until then I will stay away from toxins. Drugs and herbal toxins all included!

Here's the link to a statin study...yup, that's what I want to take!
http://www.mda.org/research/060717metab_statins.html
 
Before discounting this drug I'd suggest you go back and reread the last paragraph. Some people have to take the risk but hopefully are monitored properly by their GP.
The drug companies couldn't come up with multiple herb proprietary formula? Sure!
 
Mark, could you tell us about any real diseases that have been cured or effectively treated by supplements? Rickets, maybe? And that news is hundreds of years old. I can name thousands of pharmaceuticals that have extended the lives of millions of people. Like you, I am frustrated that the medical/pharmaceutical community hasn't been able to find the magic pill/treatment for our disease but I know that evidence-based medicine stands a far, far better chance of doing it than people who market vitamins.
 
hi patty

hi patty.

i have to say... to each his own. if your husband feels compelled to do something he thinks will help him, how can you deny that? even false hope.. is hope. now i don't mean that he should go overboard and spend all of his money on anything he hears about but if he's feeling anxious to try something different, why not let him. it's can't hurt - we're talking about a disease that no one has figured out. who's to say what will or will not make a difference. there are no studies to show that even the rilutek does very much. what is it? one month it prolongs life? then some would argue you shouldn't spend your money on that. i say that whatever gives your husband hope and gets him into "living" instead of shrugging things off as if there's no hope... let him do it. of course, within reason. i'd hate to hear he spent all of your savings on trying all the ALS treatments out there! your husband deserves to live his life and take some control of it when this evil disease seems to be taking over. i would let him do the things he feels compelled to do. and you will feel better too. not questioning whether or not you should have let him try it. what is there to lose when your doctors tell you there's nothing they can do?

i hope everyone finds some peace with whatever treatments they find fit for themselves. i just hate to hear anyone convincing someone else not to do what they wouldn't do. to each his own. i do, though, understand warning against scams. so please just ask that your husband does all the work of researching anything before he goes through any treatment.

lots of love to everyone.
nicole
 
Meg, correct me if I'm wrong but most aren't most drugs derived as supplements from plants, then synthesized into a chemical formulation? Prescription drugs, with the argueable exception of anti-biotics, never "cured" anyone, only the human body can do that. The primary use of drugs is to manage or manipulate symptoms of illness, which they do very well, but if the cause was determined and assisted we wouldn't need to "manage" so much. If I'm in severe pain morphine works very well in the short run, but what I really want is help finding the cause of the pain, not long-term symptomatic releif that will extent my pain-filled life. I personally think that herbal formulas are far better and less toxic than drugs at doing this. But to each his/her own I say. Do whatever works for you and be tolerant and respectful of dissenting opinions! Best to you.....:-D
MarkNH
 
MarkNH said:
Meg, correct me if I'm wrong but most aren't most drugs derived as supplements from plants, then synthesized into a chemical formulation? Prescription drugs, with the argueable exception of anti-biotics, never "cured" anyone, only the human body can do that. The primary use of drugs is to manage or manipulate symptoms of illness, which they do very well, but if the cause was determined and assisted we wouldn't need to "manage" so much. If I'm in severe pain morphine works very well in the short run, but what I really want is help finding the cause of the pain, not long-term symptomatic releif that will extent my pain-filled life. I personally think that herbal formulas are far better and less toxic than drugs at doing this. But to each his/her own I say. Do whatever works for you and be tolerant and respectful of dissenting opinions! Best to you.....:-D
MarkNH

Chemotherapy agents have cured millions. As have antibiotics. Long-term use of SSRI's can alter brain chemistry resulting in a decreased need for the drugs. And if a pharmaceutical can only "manage" my illness, rather than cure me, that's a heck of a lot more than vitamins have done.

I'm not sure I get your point about pain killers. Most people who take them are grateful they are available and know very well why they have their pain. I'm sure those who don't know why they are in pain (a small minority of pain sufferers) are likewise grateful for the pain relief but would love to find the source of their problem. I can't imagine where supplements fit into this conversation.
 
Meg, I think we'll have to agree to disagree on this one as it relates to both semantics and basic theories of health care. You're comfortable with the Western approach and I with the Holistic. We're going to need both to lick this thing methinks! (Along with some really good molecular biology work).
Best as always, Mark
 
Thanks!

gilly said:
hi patty.

i have to say... to each his own. if your husband feels compelled to do something he thinks will help him, how can you deny that? even false hope.. is hope. now i don't mean that he should go overboard and spend all of his money on anything he hears about but if he's feeling anxious to try something different, why not let him. it's can't hurt - we're talking about a disease that no one has figured out. who's to say what will or will not make a difference. there are no studies to show that even the rilutek does very much. what is it? one month it prolongs life? then some would argue you shouldn't spend your money on that. i say that whatever gives your husband hope and gets him into "living" instead of shrugging things off as if there's no hope... let him do it. of course, within reason. i'd hate to hear he spent all of your savings on trying all the ALS treatments out there! your husband deserves to live his life and take some control of it when this evil disease seems to be taking over. i would let him do the things he feels compelled to do. and you will feel better too. not questioning whether or not you should have let him try it. what is there to lose when your doctors tell you there's nothing they can do?

i hope everyone finds some peace with whatever treatments they find fit for themselves. i just hate to hear anyone convincing someone else not to do what they wouldn't do. to each his own. i do, though, understand warning against scams. so please just ask that your husband does all the work of researching anything before he goes through any treatment.

lots of love to everyone.
nicole

Nicole, Thanks so much for your advice. It made sense. HOPE - such a small word but a powerful one. I wouldn't want my husband to lose HOPE. I am going to let him make the decision and I will stand by him no matter what he decides.
But, we just found out yesterday that the 3 different neuro drs. - not one of them have even tested his blood for metals! We thought that they did! So, he's having the blood work done this week to test for metals first before making a decision. Like he said - it wouldn't make sense to detox, etc. if his blood didn't even show he had a high metal count (Aluminum, mercury, etc.) So, time will tell. For now, he's just going to continue taking his vitamins and herbs. Again - thanks! Patty
 
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