Six Month Lunasin Report

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LeprechaunSean

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Six Month Lunasin Report

Started on the Duke University\McDuff regimen on Aug 15\2015.

Weight: 181 lbs
FVC: 46%
ALS FRS: 25

For the previous year (Aug 2014 - Aug 2015) I lost about 3 lbs on average between visits to my ALS clinic, so about 9 - 10 lbs for the year. My FVC declined drastically, from 92% to 46% and I lost about 12 points off my ALS FRS score. If you cut those numbers in half my average for a six month period was a 5 lb loss, a 23% FVC loss, and a 6 point FRS loss.

After six months on Duke/McDuff Lunasin regimen, my stats are:

Weight: 190 lbs
FVC: 52%
ALS FRS : 26

I was of course hopeful at first that I would see drastic improvements like Mr. McDuff saw, and after my first weight gain in years and an improvement in my FVC I was definitely excited. After about four or five months though I was feeling disappointed that more was not happening. Last month however I met with my pulmonologist and he stated that I seem to have hit a plateau. So when I compared last years data to this years data I realized that even though I haven't had any major improvements, neither have I declined. I do realize however that plateaus are more common than once thought so basically my conclusion at the end of this six months is that I will keep going with the Lunasin for another six months and see if the plateau continues. Thought some folks might be interested…
 

bigmark1954

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Interesting......will you continue to use lunacin?
Good to hear sumpin from you Sean!!!!!!!
 

chally

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Good to hear your report Sean, that sounds promising to me. Keep on trucking! Chally
 

affected

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Sean it's so good to see that you are really tracking what you are taking and where you are at with the 'numbers'.

I think that this slowing is a wonderful thing, but I can understand you were kind of hoping for a more miraculous response. You have had a little improvement, and certainly are not where you may have predicted you would be without it.

Please do keep us updated as the next 6 months of taking it again unrolls.
 

LeprechaunSean

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Thanks guys, I will definitely update every so often. I consider myself an optimistic realist and while I would love to get better I would gladly settle for not getting worse. It would be great if we could all just will ourselves better but I don't think willpower will grow motor neurons. That being said I do believe having a positive attitude makes your quality of life much much better, and hopefully for me that will translate into the endurance I need to last long enough for a cure or therapy to show up. My personal goal is to make it to my son's graduation, and seeing as I've already made it five years and also decided to trache/vent if needed, I think it's doable.

As far as the Lunasin, I believe their is some real science behind it and given the fact that the Duke university trial is a year long I figure I should at least give it that much time. I have noticed if I miss a day I seem to have less energy. I try to stay away from statements about how I "feel" because they are so subjective but my "feeling" is that it is helping me. Time will be the ultimate test, if my plateau goes past 18 months I would consider that fairly conclusive. I know my Docs seem mostly impressed by my weight gain, apparently they don't see that very often.
 

Mtzu

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Sean,

Thanks for the update. It sounds promising. I might have to give it a try myself.

Michael
 

Music67

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I started it in Sept but nothing good happened so I stopped last month. My weight stayed the same which is fine. I have not lost any since I first got the disease. I did continue to lose strength in my only good arm and good leg. I have not noticed any increase rate of loss since I quit using lunasin. Bottom line is that it didn't affect me.

Sean, congratulations on your limited success.
 

hovihea

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Thanks for the update Sean. My husband started using Lunasin around September and we found that he regained strength in his neck right away. He did not like to take the full protocol so instead we do one scoop of both mixes and 4 capsules per day. We recently ran out and he has noticed a difference. Since we feed him through his peg tube I know that the difference he notices is real. I wish it came in a liquid format because the capsules are hard to dissolve the powder out of them.
 

Buckhorn

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Thanks for the update Sean. Wishing you well .....
 
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