Lunasin results/reviews/issues

[azgirl]

Becky, that is so encouraging. You are correct, others would not understand that this is a really big deal.

I have been kind of down this week since it seemed like I was getting weaker again, unable to reliably move my hand on to The joystick and more unstable in the pool again. But then today, even after a poor night of sleep, I can suddenly again lift my hand and had a very good day in the pool. Something is definitely different in my body, and I just hope to follow in Matt's footsteps, or perhaps I should say leg movements!

Also, I continue to be able to do a stand and pivot transfer, with a lot of help that is, but two months ago it look like we were completely done with that move. Also, I continue to be able to do a stand and pivot transfer, with a lot of help that is, but two months ago it look like we were completely done with that move.

 

[affected]

so incredible Becky, I still have trouble getting my head around 'nerves dying' being untrue, paralysed yes, but the fact that nerves are regenerating and muscles can respond again is just such a blowout.

 

[azgirl]

Tilly, I believe the theory is that something in the supplement contributes to cell health which in our case means the motor neurons are somehow healing. That's my understanding of all I have read anyway. Crazy, I agree, and it is so weird to have any kind of improvement after so long.

 

[affected]

Kay it is truly exciting stuff. I just feel that the nerves were not dead at all, like we have always called them. They were not functioning at all for sure, but to me this is a huge breakthrough in understanding that if the process stopping the nerves working can be reversed, then a full cure is going to be possible.

I always believed, when Chris was with me, that even if they found a 'cure' it would not be for him because the nerves that had died were still dead and that halting the disease was all that could be hoped for. So I had a vision of him being 'cured' and then having to live with no speech, no swallow and no arms at the very best. I had a vision of a cure meaning it could be given to someone at an early diagnosis.

The results happening with lunasin however tell me that one day there truly will be a full cure that will return the person to full functionality. That is exciting beyond description!!!

 

[KimT]

I'm excited but sitting on my Lunasin because my free copper is high and there is a lot of copper in the protocol. I'm so torn about whether to try it or not.

 

[Nuts]

Tilley, we seem to be seeing a return of fasciculations first, followed later by movement. I also wonder just what is really happening. I know we are kind of walking the dog backwards....hoping to find that this works on some and then, I imagine, figuring out what happens and why.

Matt is having strong fasciculations in his thighs now, and I think they've increased in his arms (they had gotten very weak). My fingers are crossed that this means his arms will see improvement also.

LOL...the couple who lets Matt hunt on their land (he is the only one allowed to hunt there) told him tonight that if he comes back next year and is walking that he's out of there...no more hunting. We said we'd take that trade off! He's a very long way from even standing, but who knows.

Kay, I am so happy to read about your progress. How long have you been taking it? Six months seems to be a big turning point, so hang in there. Are you recording your progress on Patients Like Me? It's a great way to get your into recorded even if you aren't in the study.

Becky

 

[Bookay87]

I'm been taking the Lunacin for almost 8 weeks. I've noticed a increase in my ability to chew solid foods. And I have a lil more movement in my pointer finger on my left hand. I have mainly been all thumbs. My arms and legs seem weaker though I'm still able to walk and drive. I don't take the 12 capsules a day like the Duke protocol says I only do half. It's so expensive and I'm 5 months from receiving a disability check I make it stretch.

 

[azgirl]

Becky, I am almost at the two month mark. Like matt, The increased fasciculations seem to happen first, never thought I would be welcoming them back! I am recording progress on patients like me, and my doctor is also following the progress. Clinic is next month so we will see. Also have monthly data on my activity at ALS TDI. It is good to have some scientific data, as this all feels so strange.

I am so so happy for Matt! Let's all just hope it continues

 

[Nuts]

Kay, I feel the same about the fasciculations. How odd it is to celebrate what we once feared.

I don't expect this to be a cure, but I'll take anything we can get!!

 

[lmcdaniel54]

@Jocalyn8 I mix everything in one cup with 16 oz of warm water and shake til I do not see any more dry. The. It goes through my tube just fine

 

[affected]

Just so amazing.

I know what you mean - celebrating fasciculations now when they were such a dread, especially when they start somewhere new. Now to see them start obviously means some jerky signals are starting to get through again.

Please keep the updates coming in, what a joy to read any and every little victory from all of you!!!

 

[tripete]

One month in and no noticeable difference as I continue to decline in all areas. At first the cramps seemed less but then they picked back up. I will keep going as my wife bought another two month supply. Still feel guilty drinking all that money.

 

[Jocalyn8]

You mean the entire day's dose? In one cup or do you do the 16 oz 3 times a day.
Thx
Jocalyn

 

[Bookay87]

Curious are people using Lunarich or some other lunacin product?

 

[Nuts]

we are using Reliv's products: Lunarich, Now, and ProVantage.

Matt's newest favorite includes unsweetened cranberry juice, frozen mixed berries, and the powders. I also add the fiber powder his doc prescribed and a couple of ice cubes, then blend, blend, blend.