Questions; Lunasin and Dr. Bedlack (Duke)

[tripete]

Since shortly after my diagnosis I feel that I have done a good job at accepting the terminal and destructive nature of this illness, stoic has been used to describe my acceptance of it. Recently there have been many post about the effectiveness of Lunasin in reversing the effects of this nightmare. These promising results are causing me to question my acceptance of this illness. My wife has been looking at Dr. Bedlack and his desire to reverse ALS and as he is the author of the Lunasin study it has raised a couple of questions in my mind.

My wife wants to pay the money to have me begin the regiment of the Lunasin study. The cost would be very difficult on us but she would like to try anything. She refuses to accept that this disease is terminal and I don't think she ever will.

So question #1: Has anyone noticed improved breathing numbers while doing the Lunasin regiment? As most of you know I was diagnosed as respiratory onset - the rarest type. If it does not help with the diaphragm and other breathing muscles then I do not see that it would be worth the large expense.

Question #2; My wife would like to try and get me in to see Dr. Bedlack at Duke. This would require us to travel from Pennsylvania to Duke (a 6 hour drive) which would be physically hard on me. If anyone sees Dr Bedlack, can you tell me if you believe there would be any benefit to me trying to see him? My doctors at Hershey are more interested in treating symptoms the truly trying to discover any answers.

Thank you for your help.

 

[KimT]

Pete,
I've read about improvements in FVC with Lunasin. Sean, who posts on this forum, was one.

https://www.alsforums.com/forum/als-research-news/33006-9-month-lunasin-update.html

 

[lgelb]

Hi, Pete,
I'm not going to weigh in any more on Lunasin per se, but I don't see the advantage of driving 6h to Duke. Vince has posted on his experiences there and as I recall, does not plan to return.

I understand your desire to see someone who is not resigned to the status quo, but that doesn't imply the ability to change your particular situation. And, keeping it real, the odds are that limiting BiPAP hours is doing more to impair your respiratory function than Lunasin could ever do to improve it, so that is an argument for not spending money you don't have on it.

I'm not criticizing your choice, just noting the branching logic from there.

You can know by reading the protocol itself, which is quite creative, that Dr. B. shares your feelings, without making the trip.

I trust that despite your wife's refusal to accept your condition as terminal, that you have ensured the necessary legal and financial structure is in place to support your and her past and future choices. I know you have been very concerned about her, and that concern makes it harder on you. At some point, her denial may crumble, and it would be good to have her closest family or friends "on call" against that traumatic realization.

Best,
Laurie

 

[tripete]

I have begun using the Lunasin Protocol. I keep it very simple I mix a little left over coffee and some milk with it in the Ninja Bullet. It taste good this way but does have the grittiness. The first few times I used it felt very bloated. That passed after about three days. It has caused constipation and yellow urine. I also do a "water therapy" protocol each day that keeps me very hydrated so I know it is not from lack of water.

I started it when I got home from my clinic appointment last Wednesday so that I would have their numbers as a baseline. None of the medical staff at Hershey where aware of it or the trial. Seemed like something they should know about. They where of course skeptical but did not try and deter me.

What led me to try it was Nuts wonderful stories about her husband regaining use of something he had lost. This indicates to me reversal. Reversal is what I am interested in not prolongining a miserable existence. I am thankful that the BiPap lets me sleep, but to where it during the day is just miserable. I do not like the way it feels or that it tethers me to a spot where I cannot move comfortably. For me the diffidently of breathing but not being tied to lets me have a higher quality of life than being tied down to it does.

My wife has decided I will try it for three months. She is putting a lot of hope in it and I am worried about that.

 

[KimT]

Peter, I'm praying that it works for you. I haven't started it yet because I have to correct an Iron and copper issue in my blood work. Hopefully, I'll begin on October 1.

 

[Nuts]

Pete, I so hope that you see good results from the Lunasin. So far it appears that a small percentage in the study have, so I understand your fear about your wife getting her hopes up.

Check out the videos in the "Started Lunasin Trial" thead. I finally got some video moved to UTube so that I could post it.

Becky