Feeling better on Ceftriaxone

[NotALS!]

I'm a new member so I hope I'm posting this question correctly. I was diagnosed with ALS few months ago but have been on IV ceftriaxone and am feeling much better.

I've regained strength in my legs, swallowing has much improved but the muscle atrophy in my shoulders is about the same. Improvement has been slow but definate.

Does this mean I don't have ALS? I'm afraid to go back to a nuero. Has anyone else gotten better on antibiotics and then relapsed?

I'm being treated for clinical Lyme disease, I've never tested positive but have been sick for 5 years since a bad horsefly bite.

 

[Al]

Interesting question. There quite a few drug trials going on right now with this drug. Supposedly it will slow progression of ALS. Can't say whether you have it or not but feeling better is a good sign. If you look in our Research forum there is lots to read.

AL.

 

[sadiemae]

Clinical Trial Ceftriaxone in Subjects With ALS - Full Text View - ClinicalTrials.gov

 

[purpleheart]

well, I would say that the medication is definitely helping. But I would consult your doctor on this question. Cetriaxone might be just putting a bandaid on the situation. Would your progress stop if you stopped taking it?

 

[jspec]

Let's hope you have Lyme's and not ALS. There is definitely an overlap in some symptoms. How long have you been on the antibiotic? Please look up posts by limegreenphysicist to see what crazy things lyme disease can do to a person. If you have Lyme's, then you should be able to rebuild the atrophied muscles.

Do you really live in Lyme, CT? Just curious.

 

[limegreenphysicist]

Hi all,

Im glad to hear that you are improving on Rocephin. I was on it for awhile and finally got a negative Lyme titer after being positive for active infection for two years. I would def see you neuro bc if you are getting better thats a good sign. I have mononeuritis multiplex secondary to Lyme Disease and I have improved a lot with treatment. And if you have multiplex you will have a dirty EMG in random places, I also have brisk reflexes without pathological clonus or Babinski. We should trade stories..sounds like you are a me...

About the atrophy..mine has started to fill in a bit after the twitching stopped finally. Most likely you will have residual atrophy from now on just make sure you keep light exercise if you choose to try and build your muscle back. I went all out in the gym the other day and found that hand atrophied more. Tis life

Miss you guys lots!

 

[Kirk]

thanks for the link sadimae. i may look into this further

 

[sadiemae]

Kirk, Looks like they are doing it in Dallas and Houston. They ask for a one year commitment, and you have to go in once a month. In the first month there are a lot of visits however. The main problem they have had is gall bladder problems.

 

[Momma]

I was diagnosed with ALS in May, 2009. I have been on ceftriaxone for 11 months. I have noticed I have stayed healthy and not had to deal with any colds or flu's so that helps. I have progressed from walking with a cane and leg supports to using a power chair most of the time but I can still take afew steps with support. My hands are now being affected but on the whole I would say I'm doing OK.

God Bless

 

[NotALS!]

Momma, are you taking anything besides ceftriaxone?

 

[NotALS!]

LimeGreenPhysicist - what is mononeuritis multiplex ? I have had an abnormal EMG. My neuro said I'm in the early stage of ALS and noone in their Yale practice has ever recovered. I wouldn't advise anyone going to Yale for Lyme or ALS treatment. They are very close minded.

Yes, I do live near Lyme, CT. Guess I don't have much chance at avoiding Lyme.

 

[NotALS!]

purpleheart - I am so afraid of going off the ceftriaxone in case I have ALS. This drug has a side effect of inhibiting glutemate which destroys nerve cells. That is why they are testing it for ALS. I might not have Lyme at all. My llmd says its a wait and see situation. He thinks it will take a few years. Ugh! I will worry the rest of my life.