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ladave

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Hi All-

As a newly diagnosed PAL I've gone down the same road as many of you- looking for answers, searching the internet. My brother did the same thing, and he sent me the Eric Edney book which I immediately read cover to cover.

I've read through all of the posts from last year on the subject so I don't need anyone to repeat themselves. But here it is March 2006, and many of the posts were July 2005 or earlier, so I'm wondering if anyone can share with me if they have followed through on a detox program and if it has yielded positive results. This will help me sort through what might be worth spending time and money on (colon therapy? clay baths? chelation? or the extreme measure, removing amalgam fillings?)

------------------
MODERATOR UPDATE:


CLAY BATHS, CHELATION THERAPY, DETOXIFICATION


THESE ARE KNOWN ONLINE SCAMS FULL OF MISLEADING AND ERRONEOUS INFORMATION
 
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Al

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From what I've seen here Dave some people have gone the detox route and haven't gotten any better or any worse either. But then they may have stayed the same if they had done nothing. Jerry has eliminated all the chemicals from his diet and seem to be doing OK but who knows if he would have plateaued anyway. There are no absolutes with this disease. Other than in time IT will get you. Do what you think is best but if it sounds too good to be true it probably is. There was a guy on here touting Zappers that the website claimed would help ALS, kill Lyme disease parasites and even cure cancer. All for the measely sum of $134.95. You really have to do your homework. There are a lot of shady charachters out there. Let the buyer beware!
 

upila

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Hello Dave,

I am also in the process of researching for the right DETOX combination:

My reasoning is as folows: my father was diagn with both als and Lyme. Our approach has been to target the immune system, i.e. give it as much boost and help so that it may fight the Lyme bacterias while preserving the body systems due to the als. The core of supplements is a 1,200mg CoQ10 (the Vitaline type), plus R+-Alpha-Lipoic-Acid/Acethyl-L-Carnitine, E, B-complex, Milk Thistle, and Samento and Silver Prot. as natural antibiotics. Diet has been modified to eliminate sugar/sweets, absolutely no additives, MSG, natural flavors, hydrolysed "stuff," etc - basically all home made meals from natural ingredients, no store-bought juices either, a lot of plain yogurt (Canadian bio yougurt is super good!-:). The diet was the easiest thing to change, since we have been eating like this most of our lives.

Now, with the natural antibiotics having already been loaded into his system, he is Herxing very often, which means, taht there is dead bacteria toxicity all over. The toxins produced by the death of the bacterias are by some accounts fat soluble, so water alone would not flush them out of the system. The antioxidants he is taking help some with the free radicals, but I am looking for some natural detox "potion," - easier said than done.

The progression has not been stopped, but it is not as fast, either. At this time, there are many strange things hapenning, so we can not say if the antibiotics are working. By all accounts, these changes or pains, are not typical of als, so our hope is, that if some of the Lyme bacteria is killed off, it may give some relief to the areas affected by als, i.e. added nerve protection by virtue of eliminated Lyme bacteria attacks.

So, I will post on the detox choice as soon as we determine what that may be.

Please, if you come up with any ideas - do post on the subject.

Best,

PS: Is anyone experiencing heavy, heavy night sweating in the back of the head (nape area)?
 

TBear

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Hi Dave:
We didn't remove fillings but I believe Carol's Henry did... he lasted for, I believe 7 years... might be worth it. Carol could confirm but I believe that she is cruising in the Carribbean right now.

Cheers
T.
 

dana

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My dad had his fillings removed and replaced with the white ones. Didn't do much good for him other than giving him a sore mouth and a heafty dental bill. Dad still progressed with the disease.
Dana
 

ladave

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Thanks for the responses. Al, I got into it with the "zapper" guy on the ALSTDF website, I'm not about to fall for nonsense like that (put the "wet cell battery" in that category too). I am experimenting with bentonite clay foot baths, seemed inexpensive and noninvasive. I despise dental work so I'm not about to get my fillings pulled unless I hear some truly compelling evidence.

"RCharlton", I'd love to hear from you on this subject as your posts last summer indicated that you pursued some of these alternate theories pretty aggressively. Nine months later, what were the results if any?

Dave
 

ladave

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Jerry-

Is your program based exclusively on dietary changes, i.e., avoidance of msg and aspartame? Or have you utilized a detox protocol as well? Personally, I have concluded based upon my own research that your approach has merit; I've eliminated all aspartame and am trying to eliminate msg (which is hard to do completely due to its unstated presence in so many substances, though I'm sure my msg consumption has already dropped about 80%).

Dave
 

A Daughters Love

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Well Jerry, My Mom was on a very restricted diet which contained no MSG or Aspartame for 4 1/2 months and it did nothing to even slow her progression, at all. And further more I don't believe Al's statement was based on ignorance or a negative attitude! You seem like the one with the negative attitude.
Sorry about this reply folks I'm not having a good day.
 

Al

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Thanks Michelle. Jerry as far as I'm concerned you are the ignorant one. I respect your opinion because you are entitled to it on this forum, I personally think it's nuts but have never said that. Only an ignorant person doesn't respect someone who disagrees with them. I think you are the one with the negative attitude. 99.99 per cent can't all be wrong. What makes you think you are the only one with the answers? If we don't side with you we are wrong> That's negative my friend.
 

ladave

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Al-

One of the things that has come through loud and clear in all of my research so far is that the folks who support detox and nutrition as THE way to deal with ALS definitely have a tendency towards, shall we say, overstating their positions. They are like missionaries who believe they are preaching to heretics. They truly believe they have an answer to ALS and that those who disagree are fools.

What the rest of us have to do is look past that attitude and determine if there is any merit to what they are saying. To do otherwise, it seems to me, would be like rejecting religion because we don't like Pat Robertson or Jerry Falwell.

So anyway don't take Jerry's attitude personally. We're all up the same river hoping desperately for a paddle. And we all have to make our own choices.

As for you, Jerry, you need to realize that you catch more flies with honey than with vinegar. It is a lot easier to talk to someone if you grant them respect and dignity.
 

fotiostzimas

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Hello everyone!
I think everyone pals try something and one day will be found something against als!
Is so different one of the other symptoms,
and this is good for someone who searchs for money
Because we are easy customers lol
Geia hara
Fotios
One day will! Why not today?
PS.When I have to take antibiotics I have the feeling I am better then before!
What about you? Any experiences?
 

Elle PB

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For what it's worth, and I am probably nowhere near as informed as many of you who have been on this journey longer than me, my thoughts on the choices we make regarding detox and other treatments available are these. As fit and well individuals we made different lifestyle choices, based on our own life experiences and we will continue to make decisions based on what we know and comprehend as ALS/MND sufferers. I think it's unfair to label as ignorance the decision another person makes because it differs to our own.

I also wonder about the fact that the incidence of ALS/MND is supposedly constant in all parts of the world regardless of environmental differences and lifestyle. It doesn't seem to discrimate at all.

What do others think?
 

Al

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I think that in the developed countries there is a higher incidence possibly because of all the enriched and force fed food we consume. Under developed countries don't seem to have it as much but that could be due to no reporting system or limited or no access to computers. Just an idea.
Al.
 

Dee

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All,

Just wanted to say that my dad eat very healthy all his life. My mom bought main organic foods and he didn't smoke or do anything else "unhealthy". He developed signs of ALS in 2000. After being diagnosed officially in 2002 he elminated all sugar and my mom did all the vitamins, got his fillings removed, some of "Eric is Winning", hyperbaric chamber, etc. I can't say if it helped or slowed down the progression because everyone seems to progress differently. He passed away last month so he did survive almost six years from the first signs of ALS. I think maybe he would have progressed quicker if he hadn't gone the health and detox route. I think it is worth it.
 

rcharlton

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Does anyone know the incidence rates for developing countries?

First of all, I would wager that ¾ of the world’s population does not even have access to facilities needed to diagnose ALS. In communities where the most basic needs in life are not being met – food, clean water, health – there probably is not a lot of money left over for the machinery needed for MRI’s and EMGs. So ALS is probably misdiagnosed and under reported in developing countries.

Even if the diagnostic facilities were present, I would think that ALS is predominantly a western disease and I expect that the incidence rates would be much lower in developing countries. I believe that ALS typically affects people over 55 years old. In countries where the average life expectancy is 30 to 40 yrs old – the average person probably won’t live long enough to develop ALS. With malaria, famine, war, etc. there are a lot of places in this world where people don’t even have a hope of living long enough to develop ALS. I keep reminding myself of that whenever I start to feel sorry for myself. When I see posts from children who are justifiably devastated when their parents are afflicted with ALS in there 70s and 80s, part of me shares their sorrow, while another part of me thinks how lucky they are to have lived as long as they have – to have children and even grandchildren. If someone assured me today that I was going to live till I was 70 – it would be like winning the world’s best lottery. Similarly, I am sure that there are millions of people in this world who are envious of my life and would trade places with me in a second – ALS and all. I guess it’s all a matter of perspective.

Now here are my two cents on detox.

I think that for most PALS - the rate of progression is often not constant and there will naturally be periods of rapid progression, gradual progression, plateaus and even seeming improvement regardless of what you do or don't do.

This makes it almost impossible to determine whether a certain treatment is causing a perceived affect or improvement or whether it's just the natural course of the disease.

I bought into the detox program pretty heavily early on - Eric is Winning and all that. Gave me some hope and something to work towards. I hoped that tests would indicate that I had high levels of some readily identifiable toxin, like mercury - but this was not the case.

My ALS specialist Dr. Michael Strong often refers to that school of thought which subscribes to the notion that ALS will simply run its course regardless of what you do.
I really do think that environmental factors are at the root of ALS. Whether it makes any difference trying to avoid, reduce or eliminate these environmental factors once ALS has started is another story.

I do think glutamate plays a major role in the nerve deterioration. I asked Dr. Strong about this and avoiding MSG – and he advised me that the body produces its own glutamate, and at the cellular level – where the processes are occurring that are killing the nerve cells – the amount of MSG or glutamates we ingest is not material. Don’t worry Jerry – I’m still trying to eliminate my intake of MSG and foods high in unbound glutamates.

BTW Jerry – I really appreciate all the information you have posted on this forum – and I know you are very passionate about the MSG issue – and that you are trying to share this knowledge and passion for the benefit of all PALS – but as my mother would say “it’s not what you say – it’s how you say it” – a lot of the benefit of what you say is lost when it’s accompanied by insulting comments

As a going forward basis – I am still focusing on my diet – but not being so rigid about it.
Last summer, I underwent colon hydrotherapy for about 7 sessions, together with ionicleanse foot bath. I stopped when I became discouraged with all this detox stuff. I do note that I did not have any noticeable progression during the time I had these colonics, whereas I have had noticeable progression in the past few months. Again, it could be I just naturally plateau-ed for those months – but who knows. I decided to revisit the colonics when I read some interesting research and theories from reputable sources that a perhaps a motor neuron toxin produced by a clostridial species causes sporadic amyotrophic lateral sclerosis (ALS) in susceptible individuals. This clostridial species would reside undetected in the gut and chronically produce a toxin that targets the motor system, like the tetanus and botulinum toxins.

As for the ioncleanse foot bath – this may be a waste of time. Clearly something is happening in the water – as it goes from clear water to all black and foamy by the end of the session. They claim its toxins being released through glands in my feet – this seems dubious – I’ve been trying to get my dermatologist friend to confirm whether or not this is even possible. It may be due to minerals already present in the water or even dirt on the bottom of my feet.

I’m on rilutek now and minocyclin – still had noticeable progression while on these drugs – unlike last summer when I appear pretty stable - that’s why I want to revisit the colonics.

I’ve seen a few naturopathic doctors. It always seemed to me that they were just taking shots in the dark when it came to proposed treatments – which I guess they were. A medical doctor won’t prescribe any treatment without having conducted trials and research. I don’t think this is the case with Naturopathic Doctors - I always felt like I was a guinea pig for their treatments.

I would avoid invasive procedures – such as chelation. Chelation therapy is used by the medical community for removal of heavy metals and other industrial toxins. When used by a MD – it’s to target a specific element known to be present in your blood at higher than safe levels. So if your blood work shows nothing unusual – I would avoid chelation therapy as there are side effects.

I think the best treatment out there is to remain positive and try not to let ALS take over your life. Keep yourself occupied with work, or volunteering, writing a book, blowing that perfect drool bubble – anything. Don’t let ALS consume your thoughts. For me, I recognize that ALS will always be a part of my life – but I'm trying to keep it as small a part of my life as I can for as long as possible.

Richard
 
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