Would like opinions and or advice on Lunasin trial

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scaredwifetx

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CALS
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Hello everyone! I haven't posted much lately due to work and a very busy schedule. However, I do value the knowledge and opinions of everyone here. I need some advice.

Several months ago I responded to Dr Bedlack on something he had on the net. I sent him an email and was amazed that he replied the next day which was a Saturday. He also promised to put Steve on the list for the Lunasin trial. I went about life and forgot about it.

Yesterday, I received an email stating that Steve has been chosen for the trial. Now for the advice.
Steve would have to fund his own way there from Texas and would need to go there three times in a year. I would need to go with him which means time off work and plane tickets for me unless we can drive him there which is a long trip. Steve is also in the Tirasemtiv trial and not sure what that will mean.

I have ready the stickies, researched on the Internet, watched Dr Bedlack video and still am not sure if there is enough evidence of improvement with this drug to justify the time and expense to get in the study. We would jump at the chance if there was enough proof to justify it. I do admire Dr. Bedlack and would love to have Steve under any type of his care even if it's for a trial. I also feel very fortunate that we have a chance for any of his trials. It's the expense, time and getting Steves hopes up for nothing.

Advice, thoughts, and experience will be greatly appreciated. I am torn as what to do.
 
Firstly I would be finding out if he can be on Tirasemtiv and Lunasin trials at the same time.

Really a hard choice ahead if he can be!
 
The tirasemtiv trial protocol, as would most, excludes experimental compound dosing w/ in 30d or five half lives of the tirasemtiv dose. You can confirm, but likely lunasin falls into that bucket.
 
Even without all the other issues I personally would choose tirasemtiv over lunasin. I agree Dr B is great. I am not sure how strongly he believes in lunasin. Check the NEALS ALS consortium site. They archive their webinars and I think it was on one of them I heard him talk about how lunasin was chosen to test
 
Thanks everyone. Steve does not know if he is actually getting the Tirasemtiv since it's a blind study and he hasn't seen any results so he would drop out of that trial if needed. We were more interested to know if there are any positive results from the Lunasin protocol. I have not heard anything promising from this study so hearing from the CALS and PALS. I also thought Dr B was very impressed with the Lunasin.
 
Seems to me that since Lunasin is available on the open market, and the trial info states which three products they use, why couldn't anyone try the trial on their own? When I heard about the trial I went online, signed up - it's what I call MLM - you have to buy it under someone. I have started taking it. Just don't know the dosing protocol for the trial. Guarantee the purchase would be less expensive than the travel costs! Plus that way you know you are not in placebo group. Is there a way to find out the protocol? If not, why not in the case of a publicly available supplement? Sounds like Bedlack is pretty pumped about the possibilities.
 
As previously stated, a cheaper lunasin than the MLM brand is available on Amazon. I wouldn't drop out of the tira trial just to try lunasin.
 
Thanks Laurie and Kenshatz. This helps us make a good decision.
 
Kenschatz, found this on clinicaltrials.gov. I have not looked that much into this, does the below dosing make sense?

Study Arm (s)
•Experimental: Lunasin regimen
The Lunasin regimen consists of:
◦LunaRich X Capsules (12 capsules per day)
◦ Reliv NOW - a mixture of 'vitamins, minerals and super-powered antioxidants' (3 scoops per day)
◦Pro-Vantage - a mixture of 'soy protein, medium chain triglycerides, creatine, CoQ10 and supercharged amino acids' (2 scoops per day)
It will be suggested that patients open the LunaRich X capsules and mix the contents of these as well as the other 2 ingredients in water to make a shake. If patients do not tolerate advancing to the next dosage, they will be asked to drop back to the highest dosage they could tolerate.

•Active Comparator: Historical controls
For each enrolled participant, matched historical controls will be identified from the PatientsLikeMe database. Participants will be matched according to their ALSFRS-R progression rate before they start on the Lunasin regimen (estimated by assuming their score was normal at 48 on the date of symptom onset).

Intervention: Other: Historical control
 
Hi Kenshatz, I copied some info into a reply but it would not post, said it went to a moderator. Whoops, hope I did not do anything wrong. Anyway, check out clinicaltrials.gov and look at the Lunasin trial there, it gives the dosing.
 
Matt has received an email saying he's next up for the Lunasin trial. He's not signed up for anything else so this is a no brainer for us, especially since we are only 90 minutes away.

I'm stoked!
Becky
 
That's great Becky. I hope it goes well. We would love to take a road trip there but you have to agree to go at least three times. We have decided to stay in the trial we are in since we agreed to it. I guess no road trip and no meeting Dr. B
 
That's great Becky. I hope it goes well. We would love to take a road trip there but you have to agree to go at least three times. We have decided to stay in the trial we are in since we agreed to it. I guess no road trip and no meeting Dr. B

I am writing on behalf of my sister diagnosed in April 2015. She is currently not able to move hands and feet but she has been taking Lunasin and Provantage and Now in the dosage described in previous postings. She started it in January 2016 when she was able to move her left hand and to walk on her own. Unfortunately she lost these abilities in the last 4 weeks although she is taking Lunasin. So we are not seeing any improvement. This is just for an information, however the choice is yours. Good luck!
 
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