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Honest Medicine
SilverFox
Posted: Saturday, February 18, 2012 11:31:13 PM
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I was asked to read this book and found it very interesting.

It seems that people with ALS are not the only ones around doing their own experiments and research in an effort to combat their illnesses.

Here is a link to the author discussing this.

http://www.youtube.com/watch?v=sC35fLmKIoc&feature=related

One of the items talked about in the book is LDN - low dose Naltrexone. It seems to also have an effect on macrophages and cytokine storms. Some people with MS seem to find this helps them. I don't know if people with ALS have tried it.

I am going to try to contact her and see if she would consider doing a chapter in her next book on the oral sodium chlorite experiment.

Tom

avoutersterp
Posted: Sunday, February 19, 2012 1:18:26 PM
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LDN has been researched before and proofed not to work for ALS


Arthur van Outersterp
dx PLS 1999
Olly
Posted: Sunday, February 19, 2012 1:23:50 PM

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Arthur,
LDN may have been tested before but looking at the state of the clincial trials undertaken so far and the methodology used I would not write it off.
It may have some use for one of the genetic variations of ALS or possible in a cocktail of drugs.


Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
RL Schafferr
Posted: Sunday, February 19, 2012 2:14:28 PM

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It was tested by us Olly.we had several pals on it. Didn't work. Lithium also. Didn't turn out.
I was on it LDN and lithium too.
Olly
Posted: Sunday, February 19, 2012 2:32:13 PM

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Ron,
the trouble with past trials or tests is that if a drug fails and you don't know the type of PALS taking the stuff you don't know if it would be any good for maybe one of the gentic variations.
So it's worth looking again at some of these substances.
Plus some of the trials may screw up with wrong dosage etc in conjunction with the wrong patient.
To add to that it may work in a combined drug dosgae i.e cocktail but not on it's own?
When a substance get to clinical trial it has some merit but all of the factors above could give bad results...

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
SilverFox
Posted: Sunday, February 19, 2012 3:58:27 PM
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My "wild ass" thought on LDN.

By itself it may not be effective with ALS. However, if the oral sodium chlorite can reduce the inflammation, perhaps LDN can then stimulate the body to attempt to heal.

Oral sodium chlorite by itself does a lot. I am just trying to go a little further. I would like to see the progression of this disease stopped and regeneration taking place. It is still a long road back to health, but I think everyone would have a much better attitude if the progress toward health was a little more substantial.

LDN seems to be safe and seems to help a majority of the people with MS. ALS is different than MS, but there may be some similarities once the inflammation is under control.

In reviewing the PLM comments and results of taking LDN I see some incremental improvements with some of the people. This is not conclusive, but may give some insight into what may be possible with a combination approach.

I don't know enough about LDN to know if this combination will help, but that doesn't stop me from expounding my ignorance... :)

Tom

avoutersterp
Posted: Monday, February 20, 2012 1:15:39 PM
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Olly wrote:
Arthur,
LDN may have been tested before but looking at the state of the clincial trials undertaken so far and the methodology used I would not write it off.
It may have some use for one of the genetic variations of ALS or possible in a cocktail of drugs.


you may be right
but you are bringing so many variables into the equation that you will never find An answer


Arthur van Outersterp
dx PLS 1999
Olly
Posted: Monday, February 20, 2012 2:24:13 PM

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Arthur,
I'm not bringing these variables into the equation because I like doing so, it's because this ALS is a multitude of illness with the same outcome.
This is not a simple illness and the evidence so far indicates that it will take a multidrug approach tailored to the individual to get any real relevant results.

You have genetic ALS with known causes, then you have SALS with some cross linking and then some SALS with protein inclusions and dementia that some subsets of the genetic variations have etc.

All of these look like initially they are started by different things and many variables are involved.
That's why when I post I'm now trying to target the post to one of the 'flavours' of ALS.

For instance Nem has FALS so he is looking to stop that but what works for FALS is very unlikely to work for SALS.
When looking into the medical aspects, the research tend to be jumbled up so when reading/researching you get a mixture of substance that may work for one type of PALS but not another.


What is important for you and other is finding out in the posts what is relevant to the type of class or type of ALS you have.
That way individuals may be able to come up with something that helps them, as an individual with a specific type of ALS, given that 90% of ALS (SALS) the cause is unknown.


Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
avoutersterp
Posted: Tuesday, February 21, 2012 1:29:40 PM
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Location: Netherlands
if you find a common point in all variants that is maybe a better place to research and solve


Arthur van Outersterp
dx PLS 1999
Olly
Posted: Tuesday, February 21, 2012 2:11:27 PM

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Arthur,
they have been trying to do that for years and we have progressed very little so far.

Nothing wrong for that approach, as it seems logical, and many scientists are looking at that. I don't think it's very logical that downstream remedies would cure ALS but it may stop or slow progression in some PALS.

Convergance of the illness may, in some, be very close to the end point in the illness and not far up the chain of events.
To me it seems that this illness is a multitude of illnesses with the same end point and we get to that end point by diferent ways.


Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
Olly
Posted: Tuesday, February 21, 2012 2:57:40 PM

Rank: Advanced Member

Groups: Member

Joined: 7/4/2011
Posts: 1,289
Location: United Kingdom
Arthur,
the clues that looking for convergence doesn't seem to work is in the history of a biomarker for ALS.
A common biomarker would lead you to a convergence point but we cannot seem to find one so far and it's not for want of trying

Into the heart, an air that kills, from yon far country blows.
What are those blue remembered hills, what sphires what farms are those.
That is the land of lost content,I see it shining plain,
The happy highways where I went and cannot come again
SilverFox
Posted: Monday, February 27, 2012 6:45:03 PM
Rank: Advanced Member

Groups: Member

Joined: 6/27/2011
Posts: 436
Location: United States
I sent a letter off to Dr. Berkson. He is featured in the book and is an advocate for both LDN and Alpha Lipoic Acid. What caught my eye was a comment that ALA can regenerate and revitalize stem cells.

Dr. Berkson holds a PhD in Microbiology as well as his MD. I asked if the idea of alternating between an oxidizer like chlorite and a powerful antioxidant like ALA had any merit.

I will keep you informed if he replies.

Tom
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