Old 10-27-2009, 12:55 PM #1 (permalink)
New Member
 
Join Date: 2009
City: Mountain View
State: CA
Country: US
Diagnosed: 05/2009
Interest: I am interested in learning about ALS/MND.
Posts: 30
Momma is on a distinguished road
Momma Momma is offline
New Member
Join Date: 2009
City: Mountain View
State: CA
Country: US
Diagnosed: 05/2009
Interest: I am interested in learning about ALS/MND.
Posts: 30
Momma is on a distinguished road
Default Ceftriaxone

Hi all,
I hope you are all doing as well as you can be. I wanted you all to know that I started the study using Ceftriaxone two weeks ago. I had a Hickman cathedar put in my chest and I have the drug administered twice a day. At first I was reluctant because having 5 kids, I wasn't sure how much of a life style change it would be. But, as it turns out, this is easy. I'm so glad I did it. It's still too early to tell if it's making any difference or not for me, but I will tell you this, it has helped me tremendously in my attitude and feeling like I'm fighting and not just waiting around for the next thing to fail. I will keep you all posted on my progress and I promise to be honest with you all as to not raise any false hope. That's the last thing we all need...right.

Let's fight this together. There is strength in numbers : )

If you have any questions I would be happy to answer any of them.

Stay Positive and hold on tight to the ones you love.

Momma
Momma is offline  
Old 10-27-2009, 02:02 PM #2 (permalink)
John1's Avatar
Very Helpful Member
 
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,030
John1 is on a distinguished road
John1 John1 is offline
Very Helpful Member
John1's Avatar
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,030
John1 is on a distinguished road
Default Re: Ceftriaxone

Thank you Momma and good for you for going ahead with the trial. You're helping us all.

I look forward to you updates with crossed fingers.

John
John1 is offline  
Old 10-27-2009, 03:06 PM #3 (permalink)
serenade's Avatar
Member
 
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
serenade serenade is offline
Member
serenade's Avatar
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
Default Re: Ceftriaxone

Fantastic news! I go tomorrow about the trail! Your post made me feel better! My hubby says you have "the right attitude" the post also made him smile

Judy
serenade is offline  
Old 10-27-2009, 06:11 PM #4 (permalink)
tdamess's Avatar
Very Helpful Member
 
Join Date: 2009
City: halifax
State: ma.
Country: US
Diagnosed: 07/2009
Interest: I am a family member of someone with ALS/MND.
Posts: 1,293
tdamess is on a distinguished road
tdamess tdamess is offline
Very Helpful Member
tdamess's Avatar
Join Date: 2009
City: halifax
State: ma.
Country: US
Diagnosed: 07/2009
Interest: I am a family member of someone with ALS/MND.
Posts: 1,293
tdamess is on a distinguished road
Default Re: Ceftriaxone

i thank you also . best of luck
tdamess is offline  
Old 10-27-2009, 07:58 PM #5 (permalink)
New Member
 
Join Date: 2008
City: portola valley
State: ca
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 85
beverly rees is on a distinguished road
beverly rees beverly rees is offline
New Member
Join Date: 2008
City: portola valley
State: ca
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 85
beverly rees is on a distinguished road
Default Re: Ceftriaxone

Dear Momma,
Thank you so much for your willingness to do this study. You are helping all of us and will keep you in our prayers that this treatment will be successful. Bev
beverly rees is offline  
Old 10-28-2009, 02:09 PM #6 (permalink)
serenade's Avatar
Member
 
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
serenade serenade is offline
Member
serenade's Avatar
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
Default Re: Ceftriaxone

I went to my appointment at the ALS clinic for the ceftriaxone trial today. I got to see the Hickman catheter on a plastic dummy and was given a cd on how to use IV port and keep it clean. Next step is testing, training and placement of the Hickman, if all goes well I will start the trial. Very frustrating always waiting for something to happen only to get scheduled for another appointment. aghhhh!#*^#@*
serenade is offline  
Old 10-29-2009, 09:57 PM #7 (permalink)
New Member (Say Hi)
 
Join Date: 2009
City: Uniontown
State: OH
Country: US
Diagnosed: 11/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 9
h37skipper is on a distinguished road
h37skipper h37skipper is offline
New Member (Say Hi)
Join Date: 2009
City: Uniontown
State: OH
Country: US
Diagnosed: 11/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 9
h37skipper is on a distinguished road
Default Re: Ceftriaxone

Thanks "Momma". Wife Maura just received the protocol for doing ceftriaxone "off-label". That is our PCP and neuroligist will administer the drug outside of the trial. Our hope is that we can slow or stop the progression before a tracheostomy/ventilator becomes a necessity. Your experience gives Maura more confidence in the decision. Now to find a way to pay for it.

Please keep us posted about issues with all the daily requirements of administering the drug. Our prayers are with all of yo.
h37skipper is offline  
Old 10-29-2009, 10:13 PM #8 (permalink)
hopingforcure's Avatar
Very Helpful Member
 
Join Date: 2008
City: Any
State: USA
Country: US
Diagnosed: 09/2007
Posts: 1,435
hopingforcure is on a distinguished road
hopingforcure hopingforcure is offline
Very Helpful Member
hopingforcure's Avatar
Join Date: 2008
City: Any
State: USA
Country: US
Diagnosed: 09/2007
Posts: 1,435
hopingforcure is on a distinguished road
Default Re: Ceftriaxone

Wow great news Maura is such a pretty name. Keep us posted, we will all be sending all our support your way.
hopingforcure is offline  
Old 10-30-2009, 11:28 AM #9 (permalink)
serenade's Avatar
Member
 
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
serenade serenade is offline
Member
serenade's Avatar
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
Default Re: Ceftriaxone

Just got the call going for the Ceftriaxone screening on tuesday. 2-3 more weeks for the Hickman cath and to start the trial. Woo hoo! I am excited!

Good luck Maura and Momma keep us posted on your progress!

Judy
serenade is offline  
Old 10-30-2009, 01:07 PM #10 (permalink)
t34gib's Avatar
Member
 
Join Date: 2009
City: Fort Pierce
State: FL
Country: US
Diagnosed: 12/2008
Interest: Bulbar onset diagnosed 12/2008
Posts: 234
t34gib is on a distinguished road
t34gib t34gib is offline
Member
t34gib's Avatar
Join Date: 2009
City: Fort Pierce
State: FL
Country: US
Diagnosed: 12/2008
Interest: Bulbar onset diagnosed 12/2008
Posts: 234
t34gib is on a distinguished road
Default Re: Ceftriaxone

I wanted to go into the study but was denied because "I am not bad enough" Only Bulbar symptoms. Thank you for doing the trial. I know it is invasive and very difficult for some people to do. I will do whatever I can do stop this disease from slamming anyone else.
NancyS
t34gib is offline  
Old 10-30-2009, 06:28 PM #11 (permalink)
serenade's Avatar
Member
 
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
serenade serenade is offline
Member
serenade's Avatar
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
Default Re: Ceftriaxone

Nancy,

I have heard that before " I am not bad enough" maybe these trials would be more effective in the earlier stages. I am sorry they won't accept you, I would try somewhere else and see who else is doing it! I am going to give it my best shot and pray I get the Ceftriaxone, I would love to see it stop this dreaded ALS in it's tracks and change all of our lives! But is hasn't been done yet! but maybe... "THIS IS IT" sounds like a title for a movie. lol
serenade is offline  
Old 10-30-2009, 11:36 PM #12 (permalink)
Member
 
Join Date: 2009
City: Fairfield
State: Montana
Country: US
Diagnosed: 12/2008
Interest: I have been diagnosed with ALS.
Posts: 322
Big Mike is on a distinguished road
Big Mike Big Mike is offline
Member
Join Date: 2009
City: Fairfield
State: Montana
Country: US
Diagnosed: 12/2008
Interest: I have been diagnosed with ALS.
Posts: 322
Big Mike is on a distinguished road
Default Re: Ceftriaxone

Don't forget that the KNS drug is going into phase 3 next year. A LOT of promise circulating around that drug right now!
Big Mike is offline  
Old 11-16-2009, 05:03 PM #13 (permalink)
New Member
 
Join Date: 2009
City: McHenry
State: Illinois
Country: US
Diagnosed: 07/2004
Interest: I lost a loved one to ALS/MND.
Posts: 16
lmaire is on a distinguished road
lmaire lmaire is offline
New Member
Join Date: 2009
City: McHenry
State: Illinois
Country: US
Diagnosed: 07/2004
Interest: I lost a loved one to ALS/MND.
Posts: 16
lmaire is on a distinguished road
Default Re: Ceftriaxone

Besides having ALS, my husband was diagnosed with Lyme disease (had to get this diagnosis for Ceftriaxone). He had a port put in and we administered the IV at home. Therefore, we were able to get the ceftriaxone thru our insurance he was on it for a minimum of about two years. We did not see any huge change, but, there is a chance it may have prolonged his life. He had the disease for 5 years until passing away in January. I am glad that finally there are trials with this med we had to go to great lengths to get it. We traveled to Colorado from Illinois once a year for a check up with the Dr. that prescribed. We were able to have the meds shipped to us at a discounted rate from Contract Pharmacy in Colorado Springs. I hope this works well for you and others in the future.
lmaire is offline  
Old 11-19-2009, 01:32 PM #14 (permalink)
New Member (Say Hi)
 
Join Date: 2009
City: Florence
State: MA
Country: US
Diagnosed: 07/2009
Interest: I have been diagnosed with ALS.
Posts: 1
Jdurf1 is on a distinguished road
Jdurf1 Jdurf1 is offline
New Member (Say Hi)
Join Date: 2009
City: Florence
State: MA
Country: US
Diagnosed: 07/2009
Interest: I have been diagnosed with ALS.
Posts: 1
Jdurf1 is on a distinguished road
Default Re: Ceftriaxone

I'm Jim. Started the Cef trial 1 month ago. Hard to tell if the progression has slowed down but I do feel better and no more bedtime at 7:30. One caution is to not forget to take your ursodiol, I grew some gallstones so pulling back the dosage a little until they dissolve.
Jdurf1 is offline  
Old 11-19-2009, 05:57 PM #15 (permalink)
serenade's Avatar
Member
 
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
serenade serenade is offline
Member
serenade's Avatar
Join Date: 2009
City: Zelienople
State: pa
Country: US
Diagnosed: 04/2009
Interest: I have been diagnosed with ALS.
Posts: 291
serenade is on a distinguished road
Default Re: Ceftriaxone

Just returned from a day at the hospital, had the hickman cath put in, and many hours of training for myself and my hubby. Tomorrow will be the first dose of ceftriaxone or placebo.
serenade is offline  
Closed Thread

Tags
ceftriaxone, early, hope, kids, life, love, questions, wanted


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Still on ceftriaxone? lpcarr ALS Drug Trials 7 08-13-2012 09:22 PM
Ceftriaxone momap53 ALS Drug Trials 4 11-03-2011 12:57 PM
ceftriaxone dilemma NotALS! Stories of Hope 11 01-22-2011 12:19 AM
Ceftriaxone Jerome ALS Drug Trials 28 01-19-2011 09:31 PM
Dose of Ceftriaxone SophiaShao ALS Drug Trials 7 09-28-2010 10:54 AM
Feeling better on Ceftriaxone NotALS! ALS Drug Trials 11 09-01-2010 11:54 PM
Ceftriaxone Barbie4 ALS Drug Trials 83 05-10-2010 10:23 PM
Ceftriaxone Question kevinw ALS Drug Trials 30 10-17-2009 02:46 PM
Has anyone tried Ceftriaxone? SavoringLife People With ALS - "PALS" 7 06-29-2009 09:48 PM
Ceftriaxone may help with ALS Lorie ALS Research News 2 05-25-2007 05:33 PM


All times are GMT -5. The time now is 09:08 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016