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Terry
26th November 2014, 11:48
There has been a lot of talk about these two supplement lists and many people would like to know who’s progression has stopped or actually improved and what list they were taking. It needs to include their diagnoses as I think Kennedy’s and Pure PLS appears to reach a stage and then stop without supplements.

Regards Terry

Trevorhb
26th November 2014, 12:10
That is what concerns me Terry, people's hopes could be raised without any real evidence. Proper clinical trials are needed involving quite a number of people. I have always thought that if the treatment to anything was simply using supplements, why are we not all doing it? I think some of it is in the mind, if you believe I a product if will help you, there is no harm in that, but when you encourage others only to have their hopes dashed, that is a different matter.

Many of the wildly used supplements have been proved to have little benefit, yet they are sold in large quantities and taken by many, many people.

john
26th November 2014, 12:17
In the USA there are $34billion a year spent on supplements according to a report this week!

Big business.

John

john
26th November 2014, 12:30
Trevor

There is an organisation called als untangled based in the USA funded by the mnda which examines claims for various supplements and protocols . They report back on the evidence they are able to examine and provide a summary of their findings.

http://www.alsuntangled.com/open.php

You can read what they have done so far and vote for or even add suggestions on other candidates for their scrutiny.

The deanna protocol has its own site "winning the fight". They are paying universities to carry out trials on mnd mice at the moment with a view to carrying out further human trials I think.

I think supplements can make a difference but it appears to need a cocktail and ideally you need a lot of blood tests and genetic testing carried out to see where you differ from the norm. Otherwise it is a suck it and see approach where you self test items others report success with and see if you can perceive any change in you. The disadvantage here is that you may need 3 months before the supplement kicks in which is a long time with this disease.

John

Steve
26th November 2014, 12:31
Yet links to publications funded by the industry are posted on here unquestioned. The last one claimed a diet of fruit and veg along with some off the shelf vits could cure ALS.

Ever watch a mouse try and make love to an elephant?

Steve
26th November 2014, 12:34
I agree John, combined with bloods etc. I really think a tailor made package of supps could extend prognosis.

pacer1971
26th November 2014, 13:39
Hello Steve, John and Trevor
Yes clinical trials would be good but they cost £100000000 to run as it has three stages to establish safety and Efficacy "It's not going to happen" there arn't enough of us with the condition to make it viable!
ALS untangled, havn't read anything that I could believe is unbiased towards the large pharma's.
We read Ray's thread as it gives us hope which is something the medical profession is not doing, nor do I think it ever will yes they will treat you well while waiting for you to die, thats not hope for me.

cheers
Darryl

Terry
26th November 2014, 13:53
Yes I agree with what you are saying, but there are many people on this site that have tried, have any of you stopped the progression of Mnd that have been diagnosed with anything other than Kennedy’s or Pure PLS ??

I just would like to know as quite a few people have invested into then.

I don't wish to squash hope but if it's not working we should know about it.

Regards Terry

pacer1971
26th November 2014, 14:07
Hello Terry
Ray considers his progression halted for now.
Deanna Tedone Gage has improved so we are led to believe, as I', a trusting soul I believe her.
Steve Shackel has survived for 20+ years and is still active.
It works for some people but you have to try it for a reasonable period and measure your performance.
cheers
Darryl

Terry
26th November 2014, 14:25
I know Ray's progression is halted but I believe he has never been given a specific diagnoses. Deanna is not on this forum and whilst I think the information is OK I don't know, (it could be a scam).

Has Steve been taking supplements that long or has he one of the previous types of Mnd. He might just have an unusually slowly progressing form of ALS and it would be nice to know if he is on supplements and if have halted his progression or even improved this.

Thanks, Terry

Steve
26th November 2014, 14:29
Personally I think the language used is very strong and very appealing, especially to someone newly diagnosed who has been told there is no cure.

On the other place they say, 'if it is done in secret it is done in vain' I agree totally. It would be so beneficial to have everyone who has tried, post some basic info such as, type of MND, length of time tried, percieved benefit etc. Then people could draw on each others experience or make a more informed decision before starting.

fishmate12
26th November 2014, 14:52
Steve, you're right, i've no time now,..but will try to put some facts together tonight,..to clarify things,
if any of you meanwhile,..can find out if anyone other than Tedone's daughter,..has stopped or improved.

Terry, i've pointed out to you before,..it's off putting to say..
"many people have tried fishmate supps,..and they didn't work"....you didn't take what i recommended,..
and nobody until recently,..have been advised to take Lithium,..you weren't.

Terry
26th November 2014, 16:53
Hi Ray and Steve;

Steve, I do agree that's it's pretty bad to say there's no hope for you. I have not said that I was only asking for some ones on here that has found one of them positive at stopping it's progression. I do apologize if it comes across hard but it is hard to write something specific and be vague. I am trying to get, basic information. so that people have a more informed choice.

Ray, I did what you told me to and I asked about when to take and whether with meals etc. I bought the products from the same place as you got them from. I done the best that I could have at that time with your instructions. Please find my quote saying "many people have tried fishmate supps,..and they didn't work" and I will look at it and amend it and apologize, but if you have wrongly quoted me I would be so happy if you would remove it.

Anyway this thread is not about me or what I've done, I am asking for other people that have taken them to report something positive, I have not even asked for people that have tried and failed like me.

There is no malice in my questions so please don't take anything personally.

Regards Terry

Terry
27th November 2014, 17:28
Ray did say sorry for the misquote, (well nearly) on another thread.

Sorry Terry,

My mistake, it's not many people,..i should've said "you're off-putting"
Two quotes from you, on DP vs Fishmate12,..

So his just calling me "off- putting" now, that's not half as bad. for full message go to:-

http://forum.mndassociation.org/showthread.php?2655-Fishmate-12-Supplements/page37

I could go through all of his quotes and pick some bits out, I am sure I could find some things there to say about. And then call him names but do I.

I try and provide truthful, helpful and supportive advice and re-frame from making things personnel. It is such a shame that Ray can't follow along a similar route.

I will have to start a new thread asking the same simple question as I started this thread with, I don't think that it was nasty, personable in any way but I will modify it in as much as I will refer "Rays supplements" as something else.

Sorry again, Terry

Steve
28th November 2014, 10:30
Hi Ray and Steve;

Steve, I do agree that's it's pretty bad to say there's no hope for you. I have not said that I was only asking for some ones on here that has found one of them positive at stopping it's progression. I do apologize if it comes across hard but it is hard to write something specific and be vague. I am trying to get, basic information. so that people have a more informed choice.




Terry, I think you misunderstood my post. I am very much in agreement with you. I think it would be interesting to compare results against type of MND etc.

Terry
28th November 2014, 10:42
Thanks Steve;

I did sort of say that I agree with you but also I should have said something like, "as Steve says, it would be nice to have a list of people that have tried, etc.

I only really wanted some very basic info as otherwise things get very complicated.

As I have said, I think that the Deanna supplements helped increase my muscle strength and gave me more energy, they probably helped boast my immune system as well but they did not slow my progression rate, which is quite slow.

Regards Terry

marieline
28th November 2014, 22:59
Thanks Steve;

I did sort of say that I agree with you but also I should have said something like, "as Steve says, it would be nice to have a list of people that have tried, etc.

I only really wanted some very basic info as otherwise things get very complicated.

As I have said, I think that the Deanna supplements helped increase my muscle strength and gave me more energy, they probably helped boast my immune system as well but they did not slow my progression rate, which is quite slow.

Regards Terry

Hello Terry,
I cannot help commenting on your post. Deanna protocol helped you with more energy and immune boost, "but they did not slow your progression. How can you be sure when your progression is slow. That's all round positive isn't it?

Regards
Marieline

Terry
29th November 2014, 12:46
Hi Marieline;

Although slow it is steady normally, I notice new bits every two or three weeks that limit me a little bit more. Sometime things like coughing and swallowing improve a bit but I put that down to sometime a loss of sensations in my throat again probably a bad sign.

I took DP and Fishmates supplements for well over three months each and I am afraid I really don't think that they had any effect on my progression. I have normally said or implied after, that it might work with different people and different types of Mnd.

Not sure what you mean about an all round positive, to me that would be stopping it and then improving things and getting a bit better.

I hope that helps, love Terry

marieline
1st December 2014, 05:07
Hello Terry,
"by all round positive" i was referring to you saying that you progression is slow. Slow progression is good.

I see how folks fear coughing on this forum, but for me coughing if not accompanied by an infection is positive because, although it is irritating and can cause chest muscles to ache, coughing helps the lungs to expand, helps clear the lungs and also help the chest muscles to work.
Improved swallowing is a fantastic sign, based on my own journey. Don't over analyse. So is coughing, chewing without fatigue. That was how i measured my improvement in the beginning. It is hard to explain, but i believe if given time, the body learn to accommodate.
I think with MND, until we grasp it fully, we will always be partly in the dark as it is unfortunately clouded in mystery.
I personally satisfy myself when i can achieve small things such as less fatigue, more energy, swallowing, eating, no choking, no cheeks biting, sleeping on 1 pillow, muscles are responding to exercise and diet, no falls over 1yr etc, i still refuse to use a walker or mobility scooter. Mostly when i can thwart the neurologist report, continue to live independently which is my ultimate goal.
Currently i would be feeling great if it wasn't for the increased spasticity, but that gives me a bone to chew on. I have been advised to try Baclofen, even have the prescription but i am thinking about it .
One step, baby step, i learned that living with MND
Keep well Love Marieline

Terry
1st December 2014, 11:03
Hi Marieline;

I normally agree in as much as a good coughing session improves your lungs, I had a cold cough nearly a year ago and after it went my lungs were so much better than before. I never had a lung infection, I last fell a little over four years ago but I don't walkish much.
I do take 4 Baclofen tablets and have do for years but I'm not sure they make much difference to me and my problems.

The cough I have recently developed seems a bit different, maybe related to drinking and stuff stuck in my throat. I'm OK with it though.

Love Terry

marieline
1st December 2014, 11:23
Hello Terry, i am old school. A cold is seen as a a great opportunity for the body to boost it's immune system. If you are inhaling food, then you may have to watch it as this may cause lung infection. keep the immune system up with Vit C, Zinc, garlic and fresh food.
For the mucous in the throat that you can't cough up or hawk out, that must be swallowed, i use homeopathics for that. Causticum Annum has been a faithful companion for nearly 10 years. It will also see to the cheek biting, the drooling, the choking etc. And Andrew i apologise for mentioning treatment, but homeopathics are not classed as drugs and will not interfere with any medicine.
You will be surprised how much this body can do if you just believe in it and give it time. I constantly surprise myself, just now i was on the floor trying to fish a piece of tile from under the couch, an able body person would probably not have done it, but i like the extra challenge. Keeps me motivated.
love from down under
Marieline

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