Dr Bredesens Protocol for MSA and LDN

[NZMermaid]

Hi, My father has recently been diagnosed with MSA. I have been looking for therapies or treatments that may be beneficial for him and was wondering if anyone has tried following Dr Bredesens protocol or a ketogenic diet? Also, does anyone have any experience using Low dose Naltrexone for MSA symptoms? ( or have links to any literature regarding it's use for MSA). Thanks, Maya

[Yanno]

Hello,

So sorry that you need to be here and yet welcome, sorry that your father has been diagnosed with MSA.

I hadn’t heard of the first two items you mention but my wife Jackie is taking LDN.

I put a post on here about a year ago following someone else’s request and I repeat it below. Jackie is still on LDN - has it helped? As with anything with MSA, the journey is so unpredictable we don’t know what she would be like if she hadn’t taken LDN and so it’s so difficult to draw any conclusion.

If you discover anything new about LDN do post your findings in this forum.

Take care, Ian

*******************

My post of a year ago:

Sorry, I can’t get the link working but it is still on the forum about a year ago. I will try and put a link here at a more sensible hour of day!!

[NZMermaid in reply to Yanno]

Thank you so much for your response Ian. I will keep looking for more info on LDN for MSA and post any interesting info I find as it seems like it could be worth trying. Take care, Maya

[FredaE]

The

bredesen protocol is mainly concerned with Alzheimers which is a totoally different disease from MSA

I have had a quick look in google and there are serious doubts cast on the underlying science ,doubts reinforced by the fact that theprotocol is expensive

There IS NO cure for MSA but there are plenty of scum wanting to take money off patients for the latest treatment.

It may be that someone on here has heard of it but I have not and it seemsto be a case of some good general advice about exercise and eating, some questionable advice about exclusion diets and lots of very expensive an inappropriate "tests

I personally would not touch it but you may like tolook intoit further if you have the skills to assess it properly

"

[NZMermaid in reply to FredaE]

Thank you so much for response and advice Freda. Yes, The Bredesen protocol is developed for Alzheimers patients, however people have apparently been getting positive results for Parkinson's as well which I know is different to MSA, but may have some similarities. To do the full program is very expensive, but the book has a lot of information about diet, supplements, etc... which we have been looking into. I was interested in looking into Ketogenic diets as we initially thought my father had Parkinson's and I had come across a pilot trial using an adapted Ketogenic diet which seemed to have very positive results for Parkinson's disease. So, I was interested to know if anyone had tried applying these diets to MSA. I realise there is no cure for MSA and our funds are limited so we wont be signing up to the Bredesen protocol, but I thought I would look into what therapies or options are out there that may help with some symptoms. Here is the link to the trial I mentioned in case anyone is interested:

ncbi.nlm.nih.gov/pmc/articl...

youtube.com/watch?v=O2yJAqR...(Not working as expected?)

Kind regards, Maya

[FredaE in reply to NZMermaid]

I am so glad you are not about to be ripped off. I have a deep loathing for the people who do this

My husband died in 2014 and i stay on this site for the things i am able to help with but diet is not one of those.. My personal view is that while you are enjoying your food it is no help to have any sort of exclusion diet 'just in case" without really good evidence. Of couse you may benefit by a change of diet even if you do not have msa

once you have come to termswith your diagnosis the best thing you can do is to live in the present. It is an unpredictable disease and everyone is different so try not to worry too much about what may never happen.

itis a rare disease and you will find awful ignorance about it among even the best medical people who have never come across it before, so that means you must become the expert. TheMSA Trust in London is a fountain of reliable informationand their nurse specialists second to none TheMSA Coalition in the US is also excellent though much occupied with navigating their insurance system and a different meaning for Hospice too. you may enjoy their attitude to research

It will pay you to learn how to tell an expert they are wrong without giving offence and how not to take NO for an answer-- if you dont aleady know !

Give THE BEAST a run for its money by using all the help you can get. wheelchair or walking stick is not a sign of weakness but a tool to beat the beast in its effort to ruin your life

Create memories not regrets by doing it now whle you still can

Any way good luck and remember there many not be laloy you can do to make the MSA better but there is lot you can do to make theings worse and there is always a sympathetc ear on this site

[NZMermaid in reply to FredaE]

Hi Freda, Thank you so much for your kind message and advice . I'm sorry to hear about your husband. That's so lovely of you to still take the time to share your knowledge about MSA with others. Great to know there are people on this site to talk to/ ask questions if needed. Maya

[Hidden]

Hello, as a daughter I understand the need to leave no stone unturned, in terms of researching everything that could help. I would probably look at it from a slightly different angle, of symptom management: ongoing weight loss is a risk of MSA. I remember one of the MSA nurses saying to me that the person with MSA needs all the calories they can get just to keep body and soul together. Our focus in terms of diet was finding ways of maintaining a high amount of calorie intake in a relatively small amount of food. His sense of taste and smell was affected so it worked well to make food with a very distinctive interesting taste. When the person is fatigued it really helps to serve their favourite dishes. And in later stages, food that could be blended, to help with fatigue of eating. We found Dad's tastes changed over time and he became more of a fan of puddings than he used to be, for example. We dialled down at one point on milk products to help with nasal congestion/ excess phlegm.

At one stage I gave him a daily probiotic partly because I read somewhere it's good for the brain, but also because of needing to take antibiotics for various urine infections etc. But then one brand would create diarrhoea. So its worth bearing in mind with dietary changes that they dont impact too much on the bladder and bowel management side. I think the disease plays out so differently with each individual, that whatever you try you may just have to accept you'll never know if it made a difference. I think all of our interventions with dad were based on responding directly to how he was presenting with symptoms, rather than a more general approach to the condition.Best of luck!

Kx

[NZMermaid in reply to Hidden]

Hi Kay, Thank you so much for your suggestions and insight into how you approached food with your father . Yes, weight loss is definitely something we have been thinking about as my father had lost about 15kg prior to his diagnosis (and he wasn’t over weight). We have been trying to get him to put on weight for some time and he has finally put a couple of kilo’s back on since he has been on the ketogenic diet he is currently trying, but it is definitely something we are keeping a close eye on. We have also started him on a 3 month course of gut restoration supplements (probiotic, prebiotic and mucosal support) and hoping that may help with absorbtion. I guess we will see how he goes over the next little while and re- assess.

And yes, like you say the disease plays out so differently for every person that it's hard to know what makes a difference or not, but always interesting to hear what people have tried or how they have approached things. Anyway, thank you so much for your kind message and suggestions.

Maya x