Ceftriaxone Clinical Trial

[lizzie11957]

I am participating in the Ceftriaxone Study at the Emory ALS Clinic in Atlanta. July 28 will be my 12 week visit. I have not had any adverse side affects and just this week have experience an increase in my ability to swallow. I have PBP and swallowing and speaking have been a tremendous struggle. I had the feeding tube placed this summer because I could only swallow very soft foods. Yesterday, I ate a peanut butter sandwich with milk for lunch and meatloaf for dinner. I don't know whether this is the drug, the placebo effect or the grace of God. But I'm feeling very grateful and hopeful for the first time in a very long time. May peace hope and the grace of God be with all of you. :grin:


"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain!"

 

[tomby]

Happy for you!

 

[susanf]

That is so great! I'm very HAPPY or you

 

[EGBAR]

That is fantastic, keep us informed. I am trying to get inot the next trial of testing at the Emory in Atlanta.

 

[lizzie11957]

Will do! My next appt. Is July 28. Still feeling much better and eating more normal foods. I can drink milk with no choking, but water is still difficult. At least this much improvement may keep me from losing weight.

 

[susanf]

That's wonderful! Keep us posted.
Susan

 

[KC2U2]

Great news, now can we get another blog? Love your writings:smile:

 

[lizzie11957]

Thanks! I think I'll do that!

 

[Georgia Peach]

I'm so glad that you see improvement in your ability to eat and swallow!

Thanks to your suggestion we are participating in the Emory study about changes we have seen since diagnosis. I heard a little of my husband's interview over the phone and I thought we must be talking about different people!

Perceptions are so different even between spouses when they think they know each other. He told her that he was experiencing some memory loss which he had never shared with me. She put in a request to Nicole for him to be evaluated for BiPAP. He's had some episodes of trouble breathing.

 

[lizzie11957]

I've also participated in that trial. The trouble is, I've always had a bad memory. I have to keep a calendar and write everything down.

I just heard from two other trial participants that they are reducing the enrollment requirement foe Ceftrixone from 600 to 500 patients. This means that they only need 43 more participants. Then, I suppose they analyze the data. One of the participants told me that once they have 500, the will call you one year from that date and tell you whether or not you have the real drug. What this all means? This trial is going to be moving very quickly.