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lizzie11957

Active member
Joined
Nov 7, 2010
Messages
92
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Centerville
Finished the first screening yesterday. Lots of blood taken and questions asked. Started learning how to change the dressing and administer the meds. My husband and sister will be the prime caretakers. I think they're more afraid than I am. And, although I am a little afraid of the catheter placement and the insertion of a tube into my jugular vein, I know I'm doing something and that it's the right thing to do. This is bringing me peace right now. My understanding is that the main thing that is slowing this trial down is a lack of participation. They feel very confident about the drug, but it has to go through the standard trial process which means they need more volunteers. I'm not advocating anyone to do this trial. I know it is difficult. But if anyone is able, please go to your clinic and ask about it. I may not get better by being in this trial, I may even end up on the placebo, but doing nothing is just not an option. Just think, if there was a cure right now, it would have been because people volunteered to participate in these studies years ago.

[It's still pouring in my backyard - but I'll never stop dancing in the rain. [/I][/COLOR][/I] love, prayers and hugs to all. lizzie
 
My mom has been doing the clinical trial and we think it is a great idea because what if this could be a cure for many other people.
 
What trial is this exactly if you don't mind me asking?
 
Ceftriaxone - you take it twice a day via hick man catheter. It's in phase 3 and seems to be showing some positive results.
 
It's antibiotix. Could work to some degree if your ALS is caused by infections. I'd like to try it myself.
 
Gusflower, ALS is Not caused by infections, therefore it is not a criteria for getting on the study.
 
Some people have had positive reactions with Ceftraxione and one of theories of ALS is that it is caused by bacterial infections.

Theory type: Cause and cascade

In one sentence: Bacteria or bacterial toxins attack the nervous system.
 
Detailed Description: It is known that nerve cells called motor neurons die in the brains and spinal cords of people with amyotrophic lateral sclerosis (ALS). However, the cause of this cell death is unknown. Researchers think that increased levels of a chemical called "glutamate" may be related to the cell death. For this reason researchers want to study drugs that decrease glutamate levels near nerves. Ceftriaxone—a semi-synthetic, third generation cephalosporin antibiotic—may increase the level of a protein that decreases glutamate levels near nerves. Studies of ceftriaxone in the laboratory suggest that it may protect motor neurons from injury.

They believe that the compound COULD be neuroprotective. They are not using it because of it's antibiotic properties, to cure infections that may be causing ALS.

Fingers crossed it slows progression down.
 
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