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The End
obrien4j
Posted: Friday, June 29, 2018 8:20 PM
Joined: 11/18/2016
Posts: 449


Mind you, I am not depressed or suicidal, I’m just sad, but not all the time, causeI can b very happy and laugh too. Been away for a while, going thru my own ‘doo-doo’ like everyone else. Seems like I’m the only one in the family who realizes I  have dementia. Everyone else seems to think I’m the old me, which I am, but with some tweaks, on occasion. Because they don’t see what s going on in my brain, they tend to forget, which I guess is understandable My neurologist now swears by Dale Barendsen( or something like that) who is going to cure me of all my ailments, including dementia! Wow! I am speechless! She did mention that I have to follow his protocol to the tee, take lots of supplements and live the ‘free’ lifestyle. Dairy free, sugar free and everything else you can imagine. Is it wrong to say that I don’t want to sacrifice anymore in my life- I am not exercising, trying to eat well, tending to my other health needs, but I’m not willing to sacrifice anymore. I hav been sick for as long as I can remember, I am done investing in my health. I have spent so much time and money on my health over the years, that I could have bought another house. No joke. There is one twist to my dementia case and that’s the fact that I have Lyme disease, which complicates things. Had it of been caught in time, it could have been cured. But it wasn’t and it’s chronic and only those drs who don’t take insurance, who charge $70000 , have the magic potion. The rest of us are left to die. So I begin to make plans for my death first, so I can go on living. There is no cure for my Lyme and there is no cure for the dementia it caused . Done. End of story. There are moments when I give up on my family and then there’s are times when I go back to ‘normal ‘ as well.  Does that make sense? Is anyone else following me?? And are there any of you, brave enough, to talk about their final plans? Is EVERYONE planning on riding this out?? We were not given a say as far as the disease we got, shouldn’t we have a say as far as how we want to live out the rest of our lives and how we wish to die?
BadMoonRising
Posted: Saturday, June 30, 2018 7:47 AM
Joined: 4/22/2017
Posts: 278


The jury's still out on Bredesen's Protocol, but he sure is making a lot of money by publishing and certifying physicians who pay megabucks to learn his method. I believe his protocol gets all of the attention because people are desperate and he has a strong background in academic research. I am aware of only one short term teeny tiny study that I have seen that supports his approach, but since then...?

 The Cleveland Clinic is supposed to be testing his protocol in a trial but so far I've seen no mention of it. 

I'm not willing to suffer when certain medications make me ill so I don't know if I'd be willing to sacrifice by following a strict diet. If we live long enough we won't have the luxury of making those decisions, will we?

*Now that I think about it, I wonder if those PWD following the Bredesen protocol underwent Amyloid Pet scans?*


Mimi S.
Posted: Saturday, June 30, 2018 8:06 AM
Joined: 11/29/2011
Posts: 7035


Hi O'Brien,

Good to see you writing. I know several folks with Lyme disease, including my daughter Sorry, once you have it, it's there. Sounds like you are going to the right doctor, no insurance. When will the insurance industry wake up and cover the correct treatment? Also, dieatary treat,ent includes lots of no-nos.

And I completely understand others failure to understand out diagnosis. They do not understand Early Stage. Their concept of AD is of someone completely out of it, incontinent, babling, etc.  

I try to educate, but some know better than we do.  I don't waste my time.


Larrytherunner
Posted: Saturday, June 30, 2018 11:19 AM
Joined: 2/26/2016
Posts: 186


Obrien, the end is not here. You have a chance for a new beginning if you take it, but you have to make that decision and not let others make it for you.

I am a American living in Ghana, 70 years old and retired from the US government. I was diagnosed with early stage dementia in Ghana in 2015. I started taking the anti-inflammatory drug montelukast (Singulair) 10 mg twice a day in February 2016, after reading about Dr Aigner's research in Austria on this drug as a treatment for Alzheimer's . Within a week, my extreme mental fatigue and occasional confusion disappeared and I was completely back to normal. I am now taking 20 mg twice a day. I have had no bad side effects and I also sleep much more soundly.

A clinical trial in Canada on montelukast as a treatment for Alzheimer's just started a few months ago under the supervision of the Canadian government. We should get some results by the end of the year or beginning of 2019. It is sponsored by Intelgenx, a pharmaceutical company that Dr Aigner works with.

https://globenewswire.com/news-release/2018/01/24/1304269/0/en/IntelGenx-Initiates-Phase-2A-Montelukast-Versafilm-Clinical-Trial-in-Alzheimer-s-Patients.html

https://clinicaltrials.gov/ct2/show/NCT03402503

I live in a country where a prescription is not required for this drug. But in the states, it is required. So my suggestion is to go to a GP, family doctor, etc and get a prescription for asthma for maybe three months, then take one x 10 mg twice a day, for a week or two, then decide if you are getting a benefit and continue or increase the dosage. Anti-inflammatory drugs work very fast so you should know by then. 

As far as the cost, I pay about 30 cents a tablet in Ghana for the generic. The generic should cheap in the states, and the name brand Singulair also shouldn't cost that much.

Dr Rozin, MD from Lawrenceville, GA conducted a study of Alzheimer's patients who were treated with montelukast with positive results. Here is his website if you want to contact him and a link to his study.

http://drrozin.com/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5420184/

From what I have read, Alzheimer's and Lyme disease are similar in that they both involve brain inflammation.

It is up to you to try a drug that is safe for long term use, is cheap, and can change your life if it works.

 

Please check out my recent posts on Clinical Trials, on topics about montelukast, Canadian clinical trial, Georgia doctor. Thanks and best of luck.


jfkoc
Posted: Saturday, June 30, 2018 2:47 PM
Joined: 12/4/2011
Posts: 17529


o'brien....I hear you and have some understanding but from a different perspective.

Looking back I wish my husband and I had shared more. He did not seem to want to or was I simply not listening. Your family may be "there for you" more than you realize.