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Honey
4th January 2013, 10:27
Hi all
We have just received the email protocol list and we're just wondering where anyone has purchased the list from. My mum is reluctant to buy over the Internet but as far as I can tell our local health store (holland and Barrett) only does some of the list and also in differing amounts i.e. 500mg tablets instead of 250mg

Anyone any advice??? I have emailed the Deanna Protocol back but not sure if we will get reply quick enough.

berdbrain
4th January 2013, 10:50
I know lots of people who buy their vitamin supplements etc. through the internet and it is a cheap way of getting them and there are reputable companies who are much cheaper than the big ones like H and B and they arrive at your front door.
Hope this helps a bit, and I know what you mean about your mum not used to taking drugs, but I would add that in the case of the drugs offered for MND especially the anti depressants and the Riluzole they do have very important benefits and are prescribed to counter the bad 'side effects' of the illness, such as the feeling so low, before my sis took them she would just burst into tears or get hysterical (with laughter or tears) to have her viewpoint listened to, when she could talk, that's the 'emotional liability'. One of the things about all this medication is that you have to try things and work out what works for the person, and it's trial .and error I'm afraid, and it's a terrible predicament to be put in, but thank God there is medication that can help.
good luck hunting for the vitamin doses.
BB X

ccinjersey
4th January 2013, 13:25
Hi Honey

My Friend purchased a few of the supplement Online. She did not have any problems ordering them that way, nor any problems with the supplements themselves. I wish your Mom the very best of luck on protocol! I hope she gets some wonderful positive improvements. Please keep us updated as to your Mom's progress.

CC xx

Terry
4th January 2013, 14:38
Hi Honey;
I have written an email to H & B and will await their reply. I have been looking on ebay but they do not appear to have some. I will look into it and report any findings. I find it quite confusing and complicated as many of them are under different names and quantities.
Happy Hunting, Terry

Honey
4th January 2013, 15:03
Thanks Terry and if you could let me know that would be great. I think it is quite confusing as well and trying to keep my mum positive about it as it can be quite off putting when you first see the list, however it has got to be worth a try. What else is there?? I've googled many of the first few and they do come up but a lot are from american websites and not sure on the reliability of them. Good idea to email H and B. Surely they may be able to help? Kepp us posted!
Thank you

ccinjersey
4th January 2013, 15:36
Hi Terry and Honey Pie :) Don't be confused!! it's really not...just overwhelming initially. My friend had no difficulty with the online sites and the supplements, just check if the American sites ship to UK, I don't see why not??

CC xx

Alienista606
4th January 2013, 17:08
yes right but its no a problem to find something just ask your friend.....whats your needed???

AAKG ..

http://www.paker.co.uk/produkt-olimp...-caps,944.html

from 10.01.13 i added BCAA

http://www.paker.co.uk/produkt-olimp...500g,1596.html

Magnesium

http://www.paker.co.uk/produkt-olimp...caps,1676.html

and vit d3 5000IU sometimes 10000IU and cos this i added calcium 500mg oops its 1000mg (sorry Terry)

http://www.bodykind.com/search/d3-5000iu/product/2463-Best-Vitamin-D3-5000iu-360-Softgels.aspx

http://www.bodykind.com/product/3196_102-Solgar-Calcium-Magnesium-Citrate-Tablets-50-Tablets.aspx

john
4th January 2013, 17:48
This update has been posted by someone onalstdi:

UPDATE: I just received an update and Ibedenone has been taken off the list along with Vitamin D3 and optic zinc. Vitamin D has been reduced from 10,000IU to 5,000IU and Alpha Keto-Glutarate(AKG)has been added.

Someone has asked for a dosage for AKG and awaits a response. Hopefully everyone trying the protocol has been in touch with the doctor so they become aware of any changes.

john

Honey
4th January 2013, 18:00
Thanks CC and Alienista. I'm with you on this one and don't think theres any issues ordering over the net but my mums a worrier so just trying to put her mind at ease. Shes coming round!
John, I was sent the protocol just this morning and it appears everything you say is correct only hope people are getting it in the correct way so they get to know all the changes too!
Any more stories on progress from anyone or any other sites???

ccinjersey
4th January 2013, 18:33
Thanks for update John, also going to email Dr. Tedone now for info on AKG. Also spoke with my friend this a little earlier she said 'Amazon' was the best site for a lot of supplements. Also told me her balance has improved, and she can't get over it. Staying even more positive....:)

CC

BuzzerB
4th January 2013, 19:37
Hi CC,

Think I might give this protocol a go, nothing to lose!
Could you please give me Dr Tedone's email address?

Kind regards

Keith.

john
4th January 2013, 20:27
Hi Honey,

lots seem to be getting on board but no feedback other than CC's friend Pat who sounds like you won't know she has mnd at this rate. People have been asked to feed back into patientslikeme. This is an American site with groupings for illnesses. You would serve the community as could eevryone else considering giving it a go if you registered with the als community on patients like me . If you go to treatments you should find deanna protocol and people taking part and reporting back. the more that take part the better the feedback info. It may not work for everyone but if works for anyone it has got to be worthwhile. It worked for deanna in the forst place and now Pat and there is another CEO in the US who reported dramatic improvements. Here is a link about Anthony Topazi.
http://www.cbn.com/cbnnews/healthscience/2012/November/Deanna-Protocol-a-Breakthrough-for-Lou-Gehrigs/

Here is the feedback on akg. In short, we do not know. As stated in the addendum, we want to make sure the cells have a supply of energy readily available when they need it. As always, consult your doctor and if you have a negative reaction cut back or stop it.

I would suggest you follow the dosage on the packaging if your doctor cannot help.

john

Honey
4th January 2013, 20:35
Keith the website for Deanna's Protocol is http://www.winningthefight.net/
I got the email link off there.
John I will certainly have a look at that website (if I haven't already!) and will definitely keep all up to date on mums progress once she gets started, we're just waiting for her GP to give the supplements the once over!
I've seen the CBN news link story, thats what got me onto it in the first place. It definitely seems like a glimmer of hope for all that are devastated by this horrendous disease!

ccinjersey
5th January 2013, 11:31
Hi Keith and All

Here is Dr.Tedone email vmtedone@gmail.com. Since he stated a revised protocol will be out next week maybe that would be the better time to request protocol. As I have stated all along, in my opinion Dr. Tedone is geniunely sincere, he has always responded back quickly to me and has answered any questions I had. He does not claim this is a cure by no means only a treatment to help slow or stop progression One question I did ask him was; If these supplements help my friend how long would she have to stay on them for? He replied; the rest of her life til a cure is found. He told me his daughter is 'stable'. I asked him if a person was unable to do the physical therapy should they still try the supplements? He said yes.

I also emailed Deanna herself, she did email me back, I invited to stop by on this forum to give us more info, hoping she will :)

I am only reporting on what my friend tells me and what I am seeing for myself. Going to continue and hope and pray for the best results for her and anyone else deciding to give it a go! Again nothing to lose..

CC xx

Terry
6th January 2013, 19:16
Hi All;
I have just costed the monthly cost of nearly the full Potocol and it comes to over £200 per month. The initial cost would be more then that as some items would last several months. I think that John has mentioned the cost before. I have cross checked some of the products and the prices seem reasonable. This cost is without the intravenous injection.
Yickes, Terry

I have found a possible saving of about £35 on one item, so there may well be more savings to be made. I will let you know my findings in a week or so.

pete
6th January 2013, 20:53
Hi Tell,

Yes that's a big amount however you view it , Not read all about it yet ,but is this an ongoing treatment, because the missus has just read your post and smiling she shook her head , saying not worth it!!!, will find out if she means the pills or me and let you know.

pete

john
7th January 2013, 00:02
The cost is daunting. I don't know if there is any other way of funding this. On prescription it would all be free but I don't know if a doctor would be willing to prescribe. For the NHs it only equates to half a day in hospital so you would think it would be worth their while. Has any one tried asking a doctor? Would the mnda help out if this proves a success? Has anyone found the cost excessive and decided against giving it a go?

John

pete
7th January 2013, 11:49
John,
How are you, Well for me it's really down to knowing its money and not a small amount, that may or may not work, I agree for those that can afford it and see results that make life enjoyable again, it's well spent, but for our lives, I have to consider how my wife will live after I have shuffled off, and I don't want to leave her knowing I spent a small fortune just delaying the inevitable ,money she will need to live her life ,so as things stand ,we won't be trying the protocol, as for NHS funding have my doubts even if it was proved effective I am more than certain some reason would be found not to fund it .

Pete

ccinjersey
7th January 2013, 13:55
Hi Guys,

Terry, you said cost is about 200 there, my friends cost here in US ran her about $600 on supplements. Has taken them now for 3 weeks has not reordered yet. I went to th Winning the Fight site. They stated if unable to take the IV supplement, the next best thing would be the suppository form, and then the oral.

CC

Terry
7th January 2013, 16:24
Hi Cc and John;
It seems to be working out to over £200 per month. Mind you I did buy two items from the 99 pence shop, (not sure of the quality). John, I think a lot of people would try it if it was not for the money. Whether Mnda would fund a trail to see if there are long term befits, I don't know. It is not just money, if something they provide causes harm they might well be liable, what a horrible word. I think that my doctor would just laugh if I asked for funding. It is a hell of a lot and quite a big ask to take that many tablets etc. I am still looking into things, as obtaining one or two of the items is quite hard. Many of the things would come from the U.S. Max has a reasonable contact for AAKG from Poland.
Cheers, Terry

Terry
11th January 2013, 21:01
Hi;
Have ordered the very important supplements but was unable to get Gaba in the UK. Only seems available in the US. So should be able to start on Monday but the Gaba will have to follow in 10 days or so. I have got some of the other supplements ordered but thought that I would try and start. I ordered AAKG and a few others through ebay but make sure the sellers have 100% rating, I did not 99.7% looked good to me but when i read the bad reviews I wish that I had gone else where.
Will keep you updated, Terry

soniamm
14th January 2013, 21:17
Hi all, we have had a trawl and found, PowerBody.co.uk to be useful, I have not ordered yet but intend to do so over next few days. Going to try and start on the protocol as soon as poss.

Fingers crossed!

Sonia

Terry
15th January 2013, 17:30
Good Luck Sonia;
I bought Nadh and Magnesium from them. Gaba is very hard to get but I have found on ebay a site that does "Now" gaba and posts it at a resonable price. They quote a 25 day delivery though, it is item 130539372837. I have also ordered from Quality formulas on ebay and Healthy Kingdoms on Amazon. Worth looking in local health shops, supper drug and Holland and Barrett even though they did not reply to my email. I have not got all of the supplements yet.
Love Terry

Treelover
15th January 2013, 18:42
Hi Terry and Sonia. I bought all the "most important supplements" on the list while I was in Florida at Xmas. They were all on the shelf at "The Vitamin Shoppe" . I have since looked at their website and they ship to the uk. Maybe worth sending them an email for costs. I may be reordering from them as mine run out......if I feel any benefit that is! All fingers crossed too.

ccinjersey
15th January 2013, 19:52
Good Luck to you all on Protocol. Just a quick update on my friend, mentioned she was having some saliva build up and was starting to feel a lump in back of throat, since being on protocol, that has all stopped.

CC xx

soniamm
25th January 2013, 11:04
Hi all

I have ordered most products online but I am having difficulty in find AKG, I have the AAKG but cannot seem to find a supplier for just AKG on its own; here or the US, can anyone advise, thanks

Sonia

john
25th January 2013, 11:33
Hi Sonia,
These are on amazon:-
http://www.amazon.co.uk/Hyper-Supplement-Glutamine-Acetylated-Recovery/dp/B007EDDU8U/ref=sr_1_6?s=drugstore&ie=UTF8&qid=1359113707&sr=1-6

seem to be a usa manufacturer.

john

Terry
25th January 2013, 13:10
Hi Sonia;
You could try item 271062473950 on ebay but the 1.4g caps would have to be divided up to 0.2g amounts. They work out a lot cheaper but it's hard to store and take. Not sure if AKG is the same as Amino Acids Glutamine, Where have you got the gaba from?
Good luck, Terry

ccinjersey
25th January 2013, 13:30
Hi

As some of you know, my friend on Protocol. Amazon seems to be the place to go! AAKG and AKG, & GABA. She has not had any difficulty getting it thru them. Good Luck

CC xx

soniamm
25th January 2013, 20:46
Thanks everyone, I'll go on Amazon over the weekend.

Sonia

Alfa1
25th January 2013, 22:08
Hi
Id like to know anyone about the cocconut oil massage how it is made in this protocol.
Thanks

Terry
26th January 2013, 13:15
Hi Alfa:
The oil is like a lard with a very low melting point, so I think that it could be used straight from the pot. I also eat it off of a spoon, on bread and it is good melted on some pasta dishes as it slides the pasta down easier. I would recommend two tea spoons a day to start with as it can cause loose bowels.
Regards Terry

roy
26th January 2013, 13:29
Hi Alfa,
good advice as always from Terry, pay paticular notice of the consumption I have heard of someone not mentioning any names
because he is a bit shy.Lets just say he had a horrendous accident with a whoopsie.

best wishes.

Roy.

ccinjersey
26th January 2013, 15:29
Yes, your so right Terry! My sister is a huge health food nut, and she has been cooking with and eating coconut oil for years. She swears by the benefits of it. She puts in her eggs, tea, cereal etc...now between her and my friend they both have me using it as well...

CC

Terry
14th February 2013, 17:26
I have just received my Gaba that I ordered direct from America, it took 26 days to come. I did not have to pay anything to customs although it would appear that others have. If you order a large quantity from there you are very likely to have to pay extra to customs. I am still not noticing much change, other than to my bank account.
Regards Terry

On the plus side, I don't feel so tied. Before I was often drifting off in the later afternoon, now I am usually awake to bed time.

Rory
14th February 2013, 20:43
Top Cat
Keep us informed of progress and keep to the measures of the coconut oil , as Roy has eluded to the consequences !
Hope all is well in God's own county - just need the tractor boys to push on !

Cheers

Rory

Honey
20th February 2013, 14:58
Hi everyone
We have now received the last of the first 6 "most important" supplements on the protocol for my mum. We have managed to get many of the others too so we are starting the 6 weeks recommended time now and will see what happens. I've been keeping a close eye on the Winning the Fight new website and it seems Deanna, her father and her team are becoming more and more recognised and listened to, so much so, a drug store in America has now worked with them to offer the full protocol supplements from one place and at one cost! From experience I know that this will make it MUCH easier to get started on the protocol. We have spent hours and hours of Internet and local health store searching to locate what we needed and everything has arrived at different times. I have spoken to one of the owners of the company. He seems very genuine and keen to help MND sufferers so if you want to speak to him then the website is www.nutrivinevitamins.com
His name is Mike Siers. He has given his permission for me to share his contact details.
Good luck everyone!

ccinjersey
20th February 2013, 16:45
Good job Honey Pie, going to pass along info to my friend. Make sure Mom has a lot of pill cases to stay organized with daily routine of protocol.
Good Luck to your Mom, hoping for the best possible results :)

CC x

Honey
20th February 2013, 22:59
Thanks CC. I've made her (and my dad) a chart to help with when to take everything but apparently this new drug store, mike Siers send everything colour coded and a list of what to take, when and how much! We've been saying that someone needs to organise this and make a fortune from people desperate to do something but he honestly sounds really genuine and is keen to speak to people concerned. He also promises to review the list constantly to ensure its at the best price for customers etc etc. I live in hope I know but what else is there to do!!? How's your friend getting on? X

Terry
21st February 2013, 18:16
Hello Omer;
Sorry to hear about your mum and hope the protocol makes a difference. Welcome to the forum and it's nice to have your input. Where about's do you live and how old is your mum. There is a danger of ordering things, especially costly merchandise from America in that you might incur custom payments. Hope you don't but keep use informed.
Best wishes, Terry

soniamm
5th March 2013, 05:56
Hi all
Thought I would update on my son and the protocol, he started 2 weeks ago. I am not too sure that he is following the exact dosage but i have to say that yesterday we saw a huge improvement in his hands (grip etc) and voice which is presenting much stronger and clearer. He said he felt energised and fired up, to use his words. All I can say is how happy I was to see a smile on his face. I will continue to feed back.
Sonia

pete
5th March 2013, 08:26
Sonia,

Just as long as it's showing improvements ,that's all that really matters isn't it, and long may it continue. Really glad for you all ,keep us informed, it does make a nice change to hear of something positive for once, you look after yourselves.

Regards
Pete

Robert
5th March 2013, 12:58
Yes Sonia,reading your thread and seeing the sun turn the dismal grey sea and sky into a beautiful blue it gives one an uplift to keep fighting.I am still trialling oliveleaf extract as my views are still,that the cause is a virus.
It's amazing news about curing that girl born with HIV which is a virus,anyway we live with hope and a prayer

Regs Bob x

soniamm
5th March 2013, 17:40
Hi Bob, Pete Thanks guys, even if this does not work the lift it has given us is great, my son being so young has been angry and almost bitter. He watches his son (2yrs) and cries, so to see him with a smile was awesome. Yes I saw that about the little girl, the answer s out there somewhere, probably a weed in the garden.

Take care

Sonia

Rory
6th March 2013, 00:09
Sonia
That is great news and fingers crossed that the progression is now upwards and not downwards!
I look forward to reading further good news

Best wishes

Rory

ccinjersey
6th March 2013, 02:28
Hi Sonia

Fingers crossed as well. Hoping your son has continued success on protocol, and you have nothing but good news to report :)

CC

soniamm
6th March 2013, 06:20
Thanks everyone, I will keep you all posted

Regards
Sonia

duane123
24th March 2013, 21:30
good luck to you all on protocol. Just a quick update on my friend, mentioned she was having some saliva build up and was starting to feel a lump in back of throat, since being on protocol, that has all stopped.

Cc xx

did she use all the medicine in the protocol or just the most important,my wife is experiencing that symptom please let me know and thank you

Terry
24th March 2013, 21:37
Hi Duana;
Welcome to the forum, you say that your wife is experiencing some symptom, what might that be.
Regards Terry

john
24th March 2013, 23:10
Hi Duane,
CC 's friend Pat lives in the us and was able to get all the items in the protocol?
Welcome to the forum and very sorry you need to be here. There is lots of support and information . If you need to talk to someone on any issues you may have the people at mnda connect are first class. Their contact info is above.


John

ccinjersey
25th March 2013, 15:13
Hi Duane,

My friend used all the supplements on the list, and followed protocol exactly as it was written out. There is a Vitamin store now in the US putting the whole package together of supplements, don't remember the name of it? I believe Honey has that information.

Good Luck to your wife and your family
CC x

Terry
11th April 2013, 16:51
I have found a good place to buy Ubiquinol by Now 200mg X 60no for £35.
If you want more info please PM me.
regards Terry

Nats
6th May 2013, 15:39
Hi Terry, sorry I don't come on here very often so forgive the delay in responding.

I have been on the Protocol since January 2013. I live in Cape Town so it is very difficult to get all the supplements. I was enormously strict with the protocol up until ten days ago when I ran out of AAKG. All I can say is that the twitching increased tenfold being off the AAKG and my energy levels have plummeted. To the point that I became quite frantic the disease is snowballing.

My condition was fairly good in January however I have declined to some degree but think I would be worse off had I not been on the DP. Fortunately, the AAKG arrived today and I am now getting it down me as quick as possible. I really do believe that there is an enormous benefit to the Deanna Protocol. I was diagnosed by a neurologist in Johannesburg in April 2012 I had a follow appointment with him in March 2013. He confirmed the diagnosis on EMG! But he later admitted me to hospital last week for a possible neuropathy as he says he would be seeing more decline if the diagnosis was correct.

I know that I have it of course so it's worth a try. The Deanna Protocol has stablised me and if it lessens the twitching then I am happy.

Terry
9th May 2013, 12:17
Hi Nats;
Thanks for the reply, getting all of the items is pretty hard unless you live in the U S. I have found it has improved my muscles strength and there feeling but my movement has continued to decline. I have to state that I am not on all of the supplements just most of them.
I spent two months in South Africa about 34 years ago. I stayed mainly in Stellenbosch and traveled the garden route etc. It was lovely there, almost stayed. Found Apartheid a bit hard, although many of the no whites felt secure there. Some had traveled to the UK and did not know where they stand and had returned to South Africa. I also found it hard that South Africa were honest, were other countries at that time, such as Australia and the U S had apartheid but did not declare it.
I might regret saying that.
Hope that you are back on track Nats, Love Terry

fishmate12
11th May 2013, 00:42
Hi Terry,

PM me, i can't sit back any longer seeing you going round like a "headless chicken" trying to improve your health, you seem to have zest

to be trying to make the Protocol work, and i'm assuming you've seen my attitude towards muscle-building.

You've just confirmed what i've just posted on supplements--bodybuilding stuff will not stop progression, but i know what should do it.

I will help you, remember to consult your GP, because i have no Medical Background.

The whole forum will have eyes on you, in case you grow a tail, or your hair turns green, Ha

john
27th June 2013, 14:49
Posted today on alstdi:-



dbltree1000
Posted: Thursday, June 27, 2013 2:18:28 PM
Post Reply
Quote
June 27th 101 days on DP

ALS attacks each of us so differently that it is difficult to compare "results" of any treatment and requires large trials to come up with any kind of conclusive evidence as to the efficacy of said treatment. People on the DP have experienced the entire gamut from near full recovery, some improvement, maintaining and little if any notable improvement. I started the DP with eyes wide open, hopeful but with no unrealistic expectations, perhaps like having stage 4 cancer and beginning chemo...

I was happy to just slow progression but over the past 60 days I have begun to document a very slow yet consistent reversal in my right hand and forearm. Progression started there nearly a year ago and spread rapidly up my arm and left my fingers, curled, stiff and barely movable. My right arm had severe and obvious atrophy and the upper part still does.

Today...my fingers are semi-straight and movable and over time strength has slowly but steadily returned and best of all, has not varied but remains consistent to the point I have to order heavier Digi-flex to continue to challenge my hand/finger muscles.

Atrophy is nearly gone in my forearm but still severe in bi-cep area and in my left arm though I still have reasonable strength despite atrophy. I have no idea why the first/worst affected area seems to be responding first??? I also am clueless on where all this going but am encouraged that my FVC went from 82% pre DP to 108% 90 days on DP.

My wrist was so weak I could barely pickup an empty glass but now can support/lift a 5# weight ball?? I give credit to God, the DP, clean diet and exercise but only God knows what the future holds?? I'm just sharing what is unheard of in ALS, improvements that haven't faded after a week or two but appear to be steady and continuous but if that changes...I'll share that as well.

Note: I take 3x's the suggested amount of AAKG/AKG but I also can't verify that is the reason for improvement..just sayin'

That's news from SE Iowa...;)


John

Big Steve
27th June 2013, 16:21
Hi John

I am becoming very interested in starting some form of treatment for my diagnosed MND. I have only got problems with my legs at present so I guess that now is a good time to start. However, I have read good things about Coconut Oil and Magnesium Chloride and even better things about the DP.
The question is, where do I get the meds for the DP? Are the websites advertising these products genuine? Do I go to Winning The Fight direct and will they supply these products.
Any advise would be welcome, either anecdotal or via experience!

Cheers
Steve

john
27th June 2013, 17:52
Hi Steve,
I am a widower because of mnd so don't have personal experience. I understand there is a link on the winning the fight website to a supplier who will send you everything apart from the iv glutathione which i think is a problem. i think fishmate 12 could help you with that as i think his protocol has what he believes is a very effective form. The general feeling is the sooner the better. Left until late then the thinking is that reversing symptoms is far more difficult.
I have heard good things about coconut oil but know nothing about magnesium chloride. If you register with " patientslikeme" they have reports from people using various treatments which you may find interesting. If you register as suffering from ALS ( it is an American site) you can then search treatments and see who is taking what and their view on how efficacious things are. If you go on alstdi you will find lots of current thinking on treatments.
John

Big Steve
28th June 2013, 09:57
Hi John

Thanks for taking the time to reply. I am aware that you are not suffering with MND, only the debris that it leaves behind, but you are obviously very knowledgeable.
I have a list of fishmate 12`s supplements but have not sourced these as yet. The Mag. Chloride came about from reading a blog about Coconut Oil and Ketones and Alzheimers (just Google those words for some info) and a guy had some very good results regarding his form of ALS albeit over a period of two years.
I have registered with alstdi so will trawl the site for some more info.

Many thanks for your input.

Regards
Steve

ccinjersey
28th June 2013, 14:56
Hi Steve,

If you looking for the entire package of supplements of the Deanna Protocol, there is a vitamin shop here in the US that has all the supplements put together, and coordinated with amounts, times and dosages to make is much easier.

The vitamin shop is Nutrivine Vitamin, you can go to their online site for more info. Not sure if they ship to UK but you can inquire, don’t see why not? www.nutrivinevitamin.com/deanna-protocol , the phone # is 1-888-663-3779

Good luck to you
CCx

Big Steve
28th June 2013, 18:47
Hi CC

I have now found the same website after interrogating alstdi forum and have printed the list of supplements for the DP. The surprising thing for me was the cost. If I am reading it correctly, it could cost a few thousand pound and I am not sure I have the ready cash for that.
i would be devastated if my finances prevented me from giving it a go.

Treelover
28th June 2013, 22:08
Hi Steve, I have tried the Deanna for 6 months now, and have modified some recently with Fishmates input. I have noted 2 things, one is that I am still getting less able. The other is the benefit of reduced fasciculations. I had 5 days off about 2 months ago and my fasciculations became much larger and more frequent. Back on the Deanna they subsided significantly. This is a nice benefit as the fascics remind me all the time that I have MND, particularly lying quietly in bed. But I am still weaker than I was six months ago, so it's no magic bullet. I did feel a few weeks ago that I was slurring a bit, where previously I had no bulbar issue. I changed 2 supplements to liposomal type, as suggested by Fishmate, and the slurring has gone. But you can never be sure. There are sources in the UK for everything on the DP. Send me a pm if you need any more info.

ccinjersey
29th June 2013, 02:27
Hi Steve

Yes, I remember when my dear friend was on the DP, it was a bit costly. Will say she was showing initial improvements, and since being off protocol there has been a noticeable decline. A worthwhile investment I believe to give it a go, the benefits will definitely outweigh the cost if you see and feel improvements.

Don’t give up hope, where there is a will there is always a way!! :)

CCx

john
29th June 2013, 04:06
Steve,
I think others have mentioned that the monthly cost was around 400 dollars which I think is approaching £300 per month- not exactly cheap. I don't know if you have health insurance which could assist.

John

john
20th August 2013, 19:06
Based on USF research and PALS the Deanna Protocol has been updated making it significantly easier and less expensive and then other supplements can be added based on their own merit.

Quote:
DP Revision 8/18/13
Page 1 of 4
Outline of the WFND program for ALS
This program and the Deanna Protocol™[DP] have been evolving as we receive
input from our PALS base and research on ALS mice
.
PLEASE READ ENTIRE DOCUMENT TO UNDERSTAND THE PROGRAM.
The Deanna Protocol™[DP]: The DP consists of 4 components:AKG, Complex 1(consisting of Ubiquinol and NADH), GABA and Caprylic Acid
.
SUPPLEMENT DOSAGE PURPOSE
Arginine alpha keto-glutarate (AAKG) Begin with standard dosage on bottle and increase slowly to 18g/day. DO NOT exceed 18g. Delivers energy to nerves

Alpha keto-glutarate(AKG) 300 mg pills take approx every hour (you are awake) between doses of AAKG. May be listed as alpha keto-glutaric acid Delivers energy to nerves

5-Hydroxy Tryptophan 50 mg 1x/day (take at PM with Niacin) Precursor to NADH and also serotonin and melatonin, both inhibitory neuro-transmitters

Niacin (Non Flush) 250 mg 1x/day Precursor to NADH

GABA 250 mg 2x/day Inhibitory neurotransmitter

Ubiquinol (CoQ10) 400 mg 3x/day Helps energy cycle in mitochondria

Caprylic Acid Found in coconut oil or MCT oil- take to tolerance.
NOTE: These oils are NOT water soluble and may be problematic for feeding tubes. If the oil presents a problem, omit taking the oil orally or via a tube. The protocol will still be effective. Delivers energy to nerves

1)Alpha Ketoglutarate [AKG] and Arginine Alpha Ketoglutarate [AAKG]: AKG is a key supplement to providing energy to the cells.
•We suggest both AAKG and AKG for the following reasons:
1) AAKG, due to the Arginine, is more palatable and easier on the stomach. The Arginine allows you to receive a larger dose of the AKG with minimal stomach discomfort. However, Arginine has limitations; if you exceed
18g of Arginine AKG per day, it may cause stomach and intestinal discomfort. The Arginine also produces Nitrous Oxide [NO], a free radical. This may have unwanted side effects

. A side effect of NO is swelling of the lower extremities, which is already a side effect in ALS. Arginine can also aggravate a preexisting heart condition. Arginine can also activate the Herpes simplex virus.

Arginine also may have beneficial effects in ALS. Recent research reveals that when cells die they release glutamate into the extracellular space [Space between cells]
.This glutamate causes the death of nearby cells. Blood vessel cells in contact with nervous tissue absorb the glutamate and pass it into the circulating blood. Since the NO produced by Arginine increases blood flow by dilating blood vessels NO might be beneficial by helping to remove glutamate from the nerve tissue by increasing blood flow to the area. Future research will attempt to determine the value of Arginine

DP Revision 8/18/13
Page 2 of 4
.
2) Plain AKG does not have Arginine and will allow you to continuously deliver energy to nerve and muscle cells in between doses of AAKG. AKG is less palatable and harder on the stomach, but manageable in smaller doses.

NOTE: AKG is an important source of energy for nerve and muscle cells. We do not know how long the AAKG or AKG remain in the body. Our goal is to make sure the body has AAKG or AKG in it whenever the cells need energy.
AKG/AAKG DOSE-
The dose is determined by the amount needed to suppress muscle symptoms [fasciculations, twitching, tremors, and cramps]. Based on reports from PALS and laboratory research, on average, a minimum of 16-18g of AAKG is required to have an effect .AAKG may cause diarrhea and bloating. Our experience has found that if you start with a low dose and gradually increase the dose not to exceed 18 grams over time these symptoms may be lessened or will stop. Do not take total dose at one time. Deanna takes 18g of AAKG and divides it between breakfast, lunch and dinner. In addition, she takes 4,300mg capsules of AKG every 1hr-1.5hrs between doses of AAKG up until bedtime. For the reasons stated above, if you need to increase the dose of AKG to decrease muscle symptoms, use AKG not AAKG.

AKG is a supplement your body requires daily to keep cells alive. Your body does not store it or build a reserve. So taking it daily is essential. Please note with AAKG and AKG you may not notice an immediate change but changes
should occur over time and may be subtle such as lessening of spasms, twitches/fasciculations, saliva, tremors, etc.

The AAKG you buy should have a 1:1 ratio of Arginine to Alpha Keto-Glutarate (sold by PrimaForce*)
. Most people tolerate it, but some people can’t tolerate it. If you find the AAKG with the 1:1 ratio causes gastritis even after giving your body time to adjust then use the AAKG with a 2:1 ratio.

2. Complex 1:
Complex 1 consists of the substances needed in the metabolism of AKG in the Krebs Cycle [energy cycle].

a.Ubiquinol is a more potent form of Co Q10. The most effective form Idebenone has been taken off the market. Thus, it is unavailable, except by prescriptionand very expensive. Laboratory data suggests taking 1,000mg-1,400mg
of Ubiquinol daily. If a more effective form, such as, Idebenone is used less may be required.

b.NADH is not able to be absorbed by the GI system, which is why the DP consists of Niacin, a precursor to NADH, which can be absorbed by the GI system.
Another precursor to NADH is 5-hydroxytryptophane [5-hTP]
.
3.Gamma Amino Butyric Acid [GABA]: GABA is given to counteract the spasticity caused by the excess Glutamate.
Grogginess is a possible side effect.

Dose- changes according to the degree of spasticity present in the individual with ALS.Deanna takes 250 mg 2 times per day. If she feels more spastic, she increases the dose.

4.Caprylic Acid [CA]:

CA is the primary fatty acid in coconut oil and in Medium Chain Tryglycerides [MCT] and has been used by PALS to supply energy to dying cells prior to discovering AKG. Future research will determine whether the consumption of AKG will negate the need to take Caprylic Acid. Cook with it, put on salads and take to tolerance.

DP Revision 8/18/13
Page 3 of 4
Ancillary Supplements
These supplements can be supplied by a healthy diet, but PALS may need more than the normal population. The
proper dose forALS patients is unknown
.
The NIH has published a manuscript “Nutrition and Supplements in Motor Neuron Diseases”
.
Please refer to this document for details www.ncbi.nih.gov/pmc/articles/PMC2631353/
.
These supplements come in various forms. For example, Deanna takes B12 orally and via IV or injection.
Antioxidants: Glutathione [GSH]GSH is the most effective nervous system antioxidant known to man. The best
delivery system for GSH is IV 3000 mg once a week. The dose is determined by what is currently used by neurologists and wellness clinics. GSH can be delivered by suppository, Liposomal GSH, and Sustained release GSH [Sold by Thorne Research*] Deanna gets the IV and takes sustained release GSH.

Exercise Suggested-Respiratory therapy, speech therapy, personal training and/or physical therapy (not to exhaustion) -including active range of motion exercises, progressive resistance exercises
[PRE]/strengthening exercises, aerobic exercises, hand exercises, stretching to maintain joint mobility.
PALS on the Deanna Protocol™ have reported improvement with PRE.
Therefore, we recommend doing strengthening exercises, but not to exhaustion(the point at which you can’t use the muscle).

Massage
Massage with extra virgin coconut oil. Anecdotal evidence reveals that muscle strength and size can be improved with this regimen. We have anecdotal evidence that massage with coconut oil can increase the size of atrophic muscles
.
Once per day massage oil into muscles that have atrophied or diminished. Massage oil over entire body twice a week. The coconut oil is absorbed through the skin and supplies energy directly to the cells in muscle and nerves.

*Please note not all companies make quality supplements. It is important to get good quality supplements. Your local health food store or wellness clinic should be able to advise you regarding good quality supplements. Some of the people taking the supplements have purchased from the following companies: Thorne, Life Extension, Prima Force, Beyond a Century, Kirkman Labs and NOW.

WINNING THE FIGHT, INC does not endorse these companies, and there are likely other companies

john
20th August 2013, 19:32
Disclaimer
The supplement list, protocol, questionnaire and any other information provided is not intended to
treat, cure or prevent any condition or disease. Please consult with your own physician or health care
practitioner regarding the supplements and supplement list, questionnaire and any other information
provided. You should always speak with a practitioner before taking any dietary, nutritional, herbal or
homeopathic supplement. WINNING THE FIGHT, INC. shall have no liability to you, including, without
limitation, any liability for any defective products. WINNING THE FIGHT, INC. makes no warranty,
express or implied, with respect to any products or services, including any warranty of merchantability
or fitness for a particular purpose. Under no circumstances, including, but not limited to negligence,
shall WINNING THE FIGHT, INC. be liable for any direct, indirect, special, incidental or consequential
damages, arising out of the use, or the inability to use, the supplements, supplement list,
questionnaire and any other information provided. We do not warranty and shall have no liability
regarding information provided regarding recommendations for supplements for any and all health
purposes. This information is provided solely as information to use when discussing a regimen with
your healthcare practitioners. WINNING THE FIGHT, INC. is providing this supplement list,
questionnaire and any other information on an "as is" basis and makes no representations or
DP Revision 8/18/13
Page 4 of 4
warranties of any kind with respect to this or its contents. WINNING THE FIGHT, INC., nor any of its
directors, officers, employees, contributing physicians, medical liaison, researchers, volunteers or
other representatives will be liable for damages arising out of or in connection with the use of the
supplements, supplement list, questionnaire and any other information provided. This is a comprehensive limitation of liability that applies to all damages of any kind, including (without
limitation) compensatory, direct, indirect or consequential damages, loss of data, income or profit,
loss of or damage to property, bodily injury, and claims of third parties. It is imperative that you
speak with your practitioner before buying or using supplements. Each person is different, and the
way someone reacts to a particular product may be significantly different from another. You should
always speak with a practitioner before taking any dietary, nutritional, herbal or homeopathic supplements.

Recent update. Said to be less expensive. Had to split into two posts as there is a limit of 10000 characters per post.

Laila
21st August 2013, 00:11
Provide the evidence of a definite cure. Any published refereed science publications? There isn't right? All anecdotal.

Carol

ccinjersey
21st August 2013, 00:53
Hi Carol

The Deanna Protocol was never stated as a cure, just a possible treatment to stop or slow progression. It has been working for Dr.Tedone's daughter for numerous years now, so he put it out there with the HOPE that it might help others, and they might get the same results as his daughter.

CCx

Laila
21st August 2013, 01:24
Sure, so it's a load of twaddle then?

john
21st August 2013, 03:55
Hi Carol,
I posted it for information in case someone was interested. The protocol was devised as an attempt by a retired US GP to try and arrest his daughters disease progression. She started with the disease back in 2009 and Dad used his scientific and medical knowledge to research things currently available which may help her. The protocol that evolved appears to have slowed everything right down. He offers the information in case there is anyone out there who may wish to give it a try. There is scientific research at a U S university to try to provide clinical evidence to back or refute it. A trial is not likely to happen because the protocol does not rely on anything which can be patented to produce an income. Trials cost millions and you could not expect a retired GP to self finance one and who else is likely to pay for such a trial?
I have not read that it has cured anybody and most people just accept that the condition is in curable. Others however are reluctant to accept that view and are searching for options . I put the information up for them.
Sorry if it offends.

John

phred bear
21st August 2013, 07:34
Hello John,
I for one am grateful for the DP posts.

freda

Laila
21st August 2013, 07:52
Hi John,

I have seen people try the Dianna protocol elsewhere to no effect. There has been a report on it here.

http://informahealthcare.com/doi/pdf/10.3109/21678421.2013.788405

If there was any hint of a cure I think it would be peer recognised.


Carol

john
21st August 2013, 09:29
Hi Carol,
There are apparently more reporting no benefit than there are saying it works for them. Originally Dr Tedone who developed it said he thought it might help some. He also offered online support to help people refine the protocol for themselves but I think he must have become overwhelmed by the response because that doesn't seem to be happening.
The self taught experts say the disease has many different starting points and consequently many different pathways malfunctioning in different people. This is seemingly why it has defied medical research for most of the 150 years since it was first identified and labelled.
This protocol was devised by a medical professional desperate to help his daughter and in her case appears to have had some success. On alstdi there are others who claim to have slowed or stopped their particular illness by the use of supplements. I am not saying it will cure anyone but just to feel a glimmer of hope is beneficial for mental welfare if nothing else.
I know lots of people are sceptical about these claims but I really believe this protocol is genuine in that there is no commercial side to it. Nothing included is patented and sourced from only one place.
If it makes a difference to only one person it has got to be worthwhile.
John

ccinjersey
21st August 2013, 11:08
Well said John.

Not exactly sure why you are attacking the DP Carol? It’s just a protocol as John said that Dr. Tedone researched and discovered for his daughter. If it’s working for her then clearly it’s not twaddle as you say? If Ray’s supplements are working for him, and it’s something hopeful he wanted to share with the forum why the need to bash him over it? Even more so, why should this offend you?

Everyone here knows the seriousness of an illness like this, and coping as best they can. If some forum members provide some good hearted, and light hearted entertainment, laughter, enjoyment and relaxation why do you feel the need to bash them for that as well?

This is not a place for negativity, clearly this illness does a good enough job of that. Please be thoughtful of your words and respectful to other forum members.

CC

Terry
21st August 2013, 11:44
That's a bit harsh Cc;
Whilst it's good to have hope it's also good to be realistic. Scientific papers do play an important part in the overall picture.
I did notice a difference when taking most of the supplements in DP as regards to an improvement in my strength, energy levels and a lowering of my bank account. But my progression continued. I could not state that it would not work for me as I did not follow it to the letter.
I don't think that Dr Tedone is getting any financial gain by doing this but it is possible.
Some things appear to work for some people and others taking nothing also seem to remain stable for some time, sometimes years. Who know's, lets hope something better comes soon.
Love you both, Cc and Carol. Please no handbags at dawn, only joking, Terry

ccinjersey
21st August 2013, 14:08
It’s even harsher to attack someone for being ‘hopeful’ Terry, and for all those who try to bring the lighter, happier side of life to the forum.

Others feelings and opinions should be respected, it’s really that simple in my opinion :)

CCxx

Maximas08
22nd August 2013, 12:33
.... Well Bonjour everyone. Currently on Hols in France. I started the DP approx 2 1/2 months ago and have tried to remain open and objective over any change. On reviewing my overall condition. I note the below subtle changes.
a) better tongue movement, resulting in better speech
b) less effort to swallow
c) reduced muscle twitching
d) more energy generally.

Due to have my 10 month check up ( since diagnosis) next month, so see how that goes. At present, although there has been some deterioration, theres thankfully no massive change in my condition since diagnosis.

Terry
22nd August 2013, 13:00
Bonvouage messoir ;
my english spelling is poor and with french I have no chance. Where abouts are you.
Pleased to hear that it's making a difference for you, are you taking all of the supplements.
Regards Terry

Maximas08
22nd August 2013, 13:51
Hi Terry. I'm on a really traditional French site in the Vendee area of France. No English idiots (apart from me), weather a lovely 33 degrees, food and wine.... Plentiful. Lovely to get away, after the past 10 months. Take care, Pete.

Terry
22nd August 2013, 16:01
I have camped one night in that area when touring on my bike. I spent a lot on time about two hundred miles south of there near the Spanish boarder and traveled the rest of france in separate trips. Loved it, have a good time on the wine.
Terry

Laila
25th August 2013, 22:05
I used to tour with my bike from Normandy to nice. Great memories. Just wondering if we got an answer on what supplements and what amounts? Carol

Big Steve
20th September 2013, 12:36
Hi

Are we all aware that the Deanna Protocol is stocked in the UK by http://www.detoxpeople.eu

Regards
Steve

Terry
25th September 2013, 21:15
Hi Big;
It is handy to have it all there but it's not the cheapest. I buy the same Now AAKG, two bottles for £39.22 from Powerbody where one bottle from there costs over £35.
Terry

Big Steve
26th September 2013, 09:59
Hi Terry

Is it doing anything for you?

Regards
Steve

Terry
26th September 2013, 11:19
Hi Big;

I have found it has improved my energy levels, muscles strength and their feeling but my movement has continued to decline. I never took all of the supplements just most of them.
I am sorry that I cannot be more positive.

Best wishes, Terry

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