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View Full Version : DEANNA PROTOCOL vs. FISHMATE12 SUPPLEMENTS



cpatt
3rd November 2014, 10:52
Hi,

Bit of help and shared experience needed please.

My lovely friend was diagnosed with MND in September 2014. She has started the Deanna Protocol a few weeks ago. So far she has noticed little difference, and indeed some of the supplements have made her feel unwell.

Through our research we have found both the Deanna Protocol and the Fishmate12 Supplment regimes. Has anyone tried either or both - or swapped from one to the other??

Can anyone give me their experience as to which regime suited them and any evaluation of the effect of the regime on slowing down progression? How long did it take before you noticed any difference?

Many thanks for all your help and advice,

Claire

john
3rd November 2014, 11:42
Hi Claire,
No experience to share. Ray of Fishmate 12 supplements is a night owl so will not look in here for some time. Some people have tried both on here but no one seems to be reporting runaway success. Unfortunately it is difficult to judge as you can only live one life and so knowing what would have happened without the supplements is difficult.
You might find more information about various alternative supplements on alstdi forum in the USA. That is more of a collection of people trying to find answers to this disease. You will need to register to read posts and may then get requests for donations but they can be ignored or responded to with no repercussions.
The adverse reactions to supplements may be just because the dosage is too high and should be introduced over a period of time. The general advice is to give anything 3months to see if it is working. Others introduce supplements one at a time so you can gauge the reaction in your body. If there is a strong adverse reaction then try reducing the dose and building up.
Another philosophy is to get blood tests done and see where your friend departs from the norm. Then do some research and try to correct. This sits in with doing all you can to become as healthy as possible which gives your body its best chance of fighting the progression.
Welcome to the forum and as ever sorry you find a need to be here. You will get plenty of practical advice on how to deal with day to day living with mnd but other than Ray(fishmate) nobody is reporting stopping the progression.
If you look into Stephen Hawking, who is certainly this countries if not the world's longest living surviver after 50 years, you will find he takes vitamins but whether they are making a difference or he was always destined to be an a extremely slow progressor I do not know.
Another interesting fact about the disease is that life expectancy at diagnosis is 10 years longer in India than in most of the developed western nations! Curry or other spices. Not a country famous for its healthcare systems.

John

Terry
3rd November 2014, 12:12
Hi Claire;

I have tried both but I did not follow Deanna to the letter. Each of us probably have different reasons, bodies and types of the dicease so different this might work or be better for some.

I took nearly all of Deanna four four months and felt that I had more energy and strength but my progression continued much the same. I took Ray's for about three months and they did not seem to make any difference.

It's worth braking in slowly as some things can affect people and it's good to let the doctor know although it's very unlikely that they will know much about them.

Regards Terry

pete
3rd November 2014, 12:26
Hi Claire ,
The word Nieve comes to mind, expecting results in such a short time, sorry if that sounds harsh but given that any form of mnd has so far no known cure, the idea of trying the lists of supplements that both Rays regime involves and the Deanna treatment ,to expect either to produce results in a few weeks is very much wishful thinking, quite apart from the fact ,you certainly run the risk of making matters far worse unless you asked the advice of your friends doctor before beginning any treatments , as no two people seem to follow exactly the same course of the disease has proven beyond many specialists and researchers worldwide ,who have spent millions of pounds and thousands of hours trying to find anything that worked, so far one drug ,and that only seems to give months respite . Given that any one who has been given the diagnosis of mnd by the medical proffesion ,I have not heard of one person being told to try any supplements other than to replace vitamins etc because of dietary restrictions caused by eating difficulties, never in the hope that taking vast quantities of tablets and compounds will have any positive effect on the outcome of the disease.
We all hope and those who try self help do suceed in finding a positive outcome as Ray believes he has ,I don't doubt his claims and hope he truly has found the solution, but to expect the same regime to have the same results on others ,only time will tell.

ccinjersey
3rd November 2014, 13:28
Hi Cpatt

You can contact the ‘Winning the Fight’ site, founded by Dr. Tedone of the Deanna protocol for more information. I had reached out to him in the past f on behalf of my own dear friend, and he was very open and receptive to answering questions about his protocol. Two years ago when I asked how was his daughter’s condition from being on the his protocol, his response was ‘stable’. I’m not aware of what her condition is today.

Ray (Fishmate 12) does seem open and helpful to anyone wanting to give his supplements a try.

All the best to you both.
CC xx

cpatt
3rd November 2014, 16:25
Thank you to those who have posted so far, please keep the discussion going. As for asking doctors about whether she should take any supplements, that's unlikely to happen given her "second opinion" was dished up to her in less than 5 minutes from a consultant neurologist who told her her "clinic was busy" and that she'd "had her second opinion given - it is MND - take these drugs" - so faith in the medical profession is somewhat depleted!!!

Terry
3rd November 2014, 16:37
Don't give up with the professionals, some of them are quite good and very useful Claire. Unfortunately, some of them have an uncanny way of saying that you have a terminal illness.

I think any one of us could do it better.

My specialist is no good, here has not cured me yet, a Lovely chap though.

Best wishes, Terry

cpatt
3rd November 2014, 17:40
Thanks Terry - just feel that a kind bedside manner would not go a miss, especially newly diagnosed.

Far from giving up and this place seems to be the only place to share views and get some help.

Regards

Claire

pete
3rd November 2014, 18:13
Thanks Terry - just feel that a kind bedside manner would not go a miss, especially newly diagnosed.

Far from giving up and this place seems to be the only place to share views and get some help.

Regards

Claire

Hi Claire ,
Seems most are very cold and have no people skills whatsoever, I dropped lucky with my neurologist, it was a speech therapist who informed us that I wouldn't see 2009 Christmas, I still make point of it every time we see her in the hospital that she does remember me !!.
Pete

Terry
3rd November 2014, 19:12
At least the speech therapist was right, you won't see christmas 2009 again. It seems strange to me that some neurologists, that's I think someone that has studied the brain and thinking, can not communicate in a nice way to other people. Did some not learn much in there 8 years of training.

We will try to help Claire, none of us are experts but between us we can give informative helpful advice on most things and even sometimes in a sympathetic way.

Terry

Rachel
17th November 2014, 12:25
Hello,
I'm new to this forum; our lovely Mum was diagnosed a month ago with bulbar onset mnd. Thank you so much to everyone who takes the time to support others on this forum. I have found it a very helpful place to find information during the last few awful months.

Mum's speech has deteriorated rapidly this year and she is having issues with eating. She is losing weight. I have been looking at Deanna Protocol and Fishmate 12 as possible options to offer her. A couple of questions:
Where is the best place to buy?
Is there a preference for buying separately or the Simplesa system?
Any idea on total cost?

Kind regards
Rachel

pete
17th November 2014, 13:41
Hi Rachel,
Sorry to hear about your mum, I advise you too tackle stopping the weight loss first, as loosing your body mass is harmful in many ways, trying to get it back once gone isn't easy, does mum have a dietician ,because they know an awful lot about retaining your weight .
Bulbar form affects what you intake ,as it does the ability to swallow the number of pills and capsules ,so I would urge you to deal with her food as a priority. Both Rays vitamin and supplements regime , and deanna I think are costly you need to speak to Ray, he will give advice , as for Deanna you need to contact Dr tedone in the states they also give advice I think, a few members have tried both ,so far not any results posted.

Regards
Pete

Terry
17th November 2014, 16:27
Welcome to the forum Rachel;

Sorry to hear of your mum. As Pete says, the loss of weight is quite important and seeing her dietitian and a possible feeding tube might be the way to go. Communication is very important to, so also see her speech therapist and sort something out for the future.

The very rough costs, just to give you an idea, Ray's is about 100 and the other about 150 per month.

I have tried both and they did not slow my progression but everyone's different and it might work for some.

Best wishes, Terry

GrannieAnnie
17th November 2014, 16:51
Hi, I have onset bulbar mnd and yes my voice is now more a growl than anything else. I had enormous support when diagnosed and saw a dietitian, speech therapist and am about to see the respiratory guys. I can still swallow but it is getting more difficult and I suffer saliva thickening. The dietitian sent me a taster kit for Fresubin milk shake style nourishment drinks. There are many flavours to choose from and although I am maintaining my weight at the moment, I have a box just in case I start to lose weight. They were delivered free under the NHS and there are 400 calories in each bottle, The whole thing was set up by my dietitian. Maintaining weight seems to be the way to go, so if you can hook up with a dietitian then do ask about them. I have had a feeding tube fitted as an insurance just in case there comes a time when I cannot swallow, then the food can be syringed in or pumped in. It is no trouble to me at the moment. All these things might just be the answer for your MUM. I also have an iPad with predictable speech which is a great help if a little laborious at times. It is possible that the speech&language people could help with this. Do hope all this will help. Good Luck. There are lots of friendly and helpful people around, one only needs to ask xx

Rachel
17th November 2014, 23:50
Thank you for this Pete. I will follow up the dietician referral we were promised.
Kind regards
Rachel

Rachel
18th November 2014, 00:04
Thank you Terry, Mum is waiting for referrals to dietician and speech therapist so I will keep tabs on both of those.
Thank you for all you do on this forum - it is so supportive.
Kind regards
Rachel

Rachel
18th November 2014, 20:25
Hi GrannieAnnie - many thanks for your help. I hadn't realised the dietician could be so helpful with the maintaining weight issue and thought Mum would not need to see one for a while. Will definitely be pushing for a soonest appointment. This forum is so helpful and supportive.
Kind regards
Rachel

pete
18th November 2014, 21:25
Thank you for this Pete. I will follow up the dietician referral we were promised.
Kind regards
Rachel

In the mean time get mum eating as much high calorie foods ,soft diet may be needed things like mash, veggie mash, gravy, anything she is able to eat ,add full milk, eggs,creme, the opposite to what may be described healthy, but she needs calories and cheese ,is very good melted into mash,the first food that seems to difficult is white bread, toast it and eat without butter as it will make it hard to chew, meats like ,breast of chicken, tinned pork,corned beef, experimenting with foods now will be beneficial ,I wish you good luck.

finemess
25th November 2014, 11:25
Hi Rachel
I have been researching the Deanna Protocol for my wife and I recently ordered the individual items online looking for the best quality / price combination, mainly via Amazon and HealthMonthly.co.uk. We are now waiting for them to arrive before we start the regime. Our neurologist told us she had read about it and could see no harm in trying it, although effectiveness is not proven. I then discovered the Simplesa products...they are not much more expensive, but the fact that several components are combined will make it much easier for your mum to take. They also seem to cater for those with feeding difficulties, pegs etc in their delivery formats (drops etc)
Regards
Trevor

Rachel
26th November 2014, 00:55
Hi Trevor,
Many thanks for this. I'm afraid to say I have not got as far as ordering as I feel totally bogged down with all the information and where to order from etc. You have renewed my initial spark of determination to help my mum, by encouraging me to look again at simplesa. It is good to know that your neurologist did not dismiss it. Keep us posted with how the regime goes for your wife. Very best wishes to you both. Kind regards
Rachel

Anne425
26th November 2014, 11:40
Morning

If your Mum is struggling to eat bread try Warburtons Sandwich Thins - they are much easier than 'normal' normal bread.

Cheers Anne

Terry
26th November 2014, 19:02
Hi;

Ray has quoted me saying;- "many people have tried fishmate supps,..and they didn't work". I do not know where this comes from so if anyone can find my comment here or on other threads saying that I would be ever so grateful and amend it and apologize.

Please help me, Terry

Terry
29th November 2014, 13:55
Hello,
I'm new to this forum; our lovely Mum was diagnosed a month ago with bulbar onset mnd. Thank you so much to everyone who takes the time to support others on this forum. I have found it a very helpful place to find information during the last few awful months.

Mum's speech has deteriorated rapidly this year and she is having issues with eating. She is losing weight. I have been looking at Deanna Protocol and Fishmate 12 as possible options to offer her. A couple of questions:
Where is the best place to buy?
Is there a preference for buying separately or the Simplesa system?
Any idea on total cost?

Kind regards
Rachel

Hi Ray;

This post came in on the 17th of November with Rachel clearly asking three questions. I responded trying to be helpful.

You have probably, a lot more idea of the answers to these questions so why oh why did you not answer them and be helpful as you were very aware of the post as you resurrect it, not to be helpful.

By not answering direct questions you are not helping people at all. Please use your extensive knowledge to help people by answering their question as you know the answers.

Your time would be better spent doing that than trying to ridicule me.

Love Terry

miranda
29th November 2014, 14:42
This thread is a bit confusing! Are some posts missing? Anyway with regard to bread - I cannot eat what I call 'plastic' bread unless it's toasted - otherwise it clogs up and sticks to the roof of my mouth. Bizarre!

ccinjersey
29th November 2014, 17:56
I think it might be two threads regarding supplements running simultaneously ? Do wish my dear friend had stayed on the Deanna protocol, not sure what it would have done for her progression, but she was feeling better when on it.


Tis the season… so peace on earth goodwill towards men :)
CCxox

Anne425
29th November 2014, 19:07
Hi Miranda
Try Warburtons Sandwich Thins - I find them much easier to eat than normal bread.

Cheers Anne

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