ceftriaxone dilemma

[NotALS!]

I was diagnosed with early onset ALS 3/10. I was also diagnosed with clinical lyme 4/10. I have been on IV ceftriaxone for 10 months and my atrophy has not progressed since starting the drug.

My current lyme doc wants to take me off the drug and try oral meds. He wants to see if the ALS returns. I'm also seeing a lyme/als PA from a clinic in CO who says stay on the ceftriaxone indefinately.

I'd love to believe I don't have ALS and ditch the picc line but am very wary of ALS returning. There are different forms of the disease and mine seems to have started because of an undiagnosed lyme infection.

What should I do?

 

[joelc]

Don't quit taking it. It seems to be working, don't go off it just to satisfy some doctors curiosity. Just my 2 cents.

 

[laurel]

I agree with Joel. Stay on it.
Laurel

 

[tdamess]

an old saying -- if it is not broke dont't fix it ...... don't even chance going off it

 

[serenade]

Don't go off IV the pill will not be a high enough dose. If it is working don't mess with it.

 

[NotALS!]

Its good to have a few doctors to compare opinions. My lyme doctors can't even agree on treatment. The one in CO that has years of experience treating ALS/lyme patients advises staying on the iv rocephin indefinately. My NY lyme dr wanted to take me off the iv and try orals since I was doing well (or so he said).

When I mentioned the CO dr's advice to the NY dr, he said "I can't continue iv treatments for this long in NY". So it really wasn't a treatment plan based on my needs, it was more to protect himself.

I plan to follow the CO dr's protocol and get a Hickman catheter. She said to plan on being on rocephin the rest of my life. I'm thankful that its working so far. Thanks for your opinions.

 

[tdamess]

good thats what i wanted to hear

 

[kelly]

Is your New York Doctor in Hyde Park?

 

[NotALS!]

No, he is Dr Cameron in Mt Kisco.

 

[LizT]

so your dr wanted to take you off a med and put you on something else because you were doing well on the original med?
RED FLAG. Sounds like a quack to me.

 

[Miss]

If it is decided that ceftriaxone is a viable treatment for ALS, I have heard that they will try and develop an oral form. I would wait and see if that happens before going off of it. Why risk a return/progression of ALS symptoms!

 

[NotALS!]

Turns out that I had to discontinue the rocephin due to a picc staph infection. I still have diahrrea after a month so now I'm going to a GI doc for tests. I am noticeably weaker since stopping the rocephin. I only hope my body can tolerate it again.