cephtriaxone trial

[SavoringLife]

As I understand it, high liver enzymes mean that there is too much stress on the liver trying to clean the toxins (in this case high-dosage antiobiotics) from the blood. If they remain high for an extended period, then permanent liver damage could occur.

 

[Katie C]

Just a comment on the placebo... I just checked out literature, and at least at UCSF, it will be 2/3 actual med, 1/3 placebo

 

[tdamess]

they need to find a way to help the liver detoxify, something that can absorbe it taken with it, wouldn't that be nice

 

[joelc]

There are a lot of good natural products for detoxifying your liver. If you are interested in one send me a PM.

 

[psiep]

To SavoringLife, what does the SB 509 trial consist of? And has his liver been checked again recently; did it recover after being off cephtriaxone?

 

[Almasch]

My husband went to Cleveland Clinic to confirm his ALS diagnosis and they confirmed it. We asked about the clinical trial with Ceftriaxone and they have not yet started their trial, guess they don't have permission yet. There is a clinical trial started at the Ohio State Univ. Medical Center, Columbus, OH and I think my husband qualifies but we are not sure we want to do this. We may start in March when we return from Fl. as we go there for the winter. I know that breathing must be 60% or better. His is 62%. Age doesn't matter as he is 78.

Alma

 

[tdamess]

that's good if he gets to do it please keep us updated, and other who know more will give you some thoughts of thiers on this and that should help you decide

 

[RoadKill]

Trying to do it but the doctor who put the hickman catheter in screwed up. Big time.

I collapsed and was unconscious for half an hour in a puddle of blood this morning. Catheter screw up. I became semi conscious and knew I would die if I didn't get to my phone. I called a friend and said, "I'm bleeding out. I need help." He said, "I can't talk now. I'm getting ready for work." Then I called someone else. Then I lost consciousness again.

Ambulance. Emergency room.

Doctor has offered to replace the screwed up installation. Emergency room rigged it so I don't bleed out again. I will have to replace the carpet in my hall and bedroom. It looks like a crime scene.

 

[hopingforcure]

Oh my goodness. I am so sorry that happened... I am so upset that a someone could be so unkind. I live about 80 miles from Baltimore, and I know several members who live in your area, please reach out to us, never try to do things alone. I have a very kind family, and they will reach out to help anyone who is in need. Please let us know if you need someone to go with you or need assistance. Please keep us informed how you are doing. You cannot go this alone, you are not Roadkill, you are a important person, please do not forget that ever.

 

[peter57]

OMG,
Words fail me.

Hang in there Roadkill there are people out there that are only too willing to help you, like hoping said you are an important person.

Peter

 

[BarryG]

"He said, "I can't talk now. I'm getting ready for work."

With friends like that....

I hope you are ok now and take Hoping up on her offer, she means it. We are all here to do whatever we can for each other.

 

[Micheline_h]

wow...i hope you are doing well now. Thats horrible, how,why...like peter said words fail me too. Hang in there

 

[tdamess]

so sorry , you want me to come there and beat-up the person who put it in you wrong.. no really so sorry what an awful thing to go Thur , wishing you the best from here on ,

 

[RoadKill]

Thanks everybody.

ALS has pretty much shattered my very thin veneer of imperturbability.

I just remember the distinct thought that if I don't get to my phone I'm going to die. And then not having the strength to move and thinking, I'm going to die here.

I am going to stop hoping to die of something other than ALS.

 

[PamelaSue]

I was given the "opportunity" to screen for this trial in September. I turned it down (in fact I didn't even respond to the offer) for 2 reasons:

1. There is a placebo involved
2. I live alone (no spouse, partner or caregiver)

I think it is unconscionable to ask someone to submit to a surgical procedure, with all the inherent risks of complications (yes, I read Roadkill's posts) without 100% assurance that the test drug will be administered. In addition, the physical and emotional trauma of a trial of this length and quality of life altering deployment should not be attempted alone. I know that I could not, would not put myself through that.