I was dxd with ALS on 3/10. I found Dr C in NY and he has me on ceftriaxone, for 6 months now. No other meds except uridisol and I take milk thistle too.
I felt much better initially but now my neck has gotten very weak. My shoulders have some atrophy and my arms are still weak but my legs came back very strongly.
Dr. C just told me he couldn't keep treating me with ceftriaxone without my going to another neuro. Help!!!
I don't want to be told I have ALS again, I can't bear it. The ceftriaxone has helped so much and I'm allergic to it so if I stop it will be a long difficult battle to get used to it again.
Should I see another llmd? Mine isn't treating the coinfections and I'm still so sick. I can't tolerate many meds.
** edited to remove doctor's city and protocol dosages **
[ 10-13-2010, 07:37 PM: Message edited by: sixgoofykids ]
Posted by sixgoofykids (Member # 11141) on :
I would see another LLMD.
Posted by Lymetoo (Member # 743) on :
Find an LLMD who won't ask you to see a neuro to get more treatment.
I pray you will find some help!!! Posted by seekhelp (Member # 15067) on :
YES, please try to get another opinion and help!
Posted by tamboski (Member # 23331) on :
go to the neuro if u can get mri etc never know what they find
ceftxne doesnt cover everything that can cause thiiiis
Posted by TerryK (Member # 8552) on :
The doctor who had ALS and got better had babesia too. I'd find another ILADS LLMD who will treat co-infections clinically. I would do whatever you need to do to stay on IV even as you look for another LLMD so you don't lose any ground or allow the ALS presentation to progress.
I would ask around for an LLMD who has treatment experience and success with the ALS presentation. Use your local group resources and ask METALLICBLUE if he has any reports of someone like that.
There was a poster here a few years ago that posted a lot about ALS. Search the archives for info about ALS if yoy haven't already. Her name was CaliforniaLyme.
Wishing you great success in finding the best LLMD for your situation.
Posted by lou (Member # 81) on :
If I were you, when looking for another doc, do not use the word ALS. This has scared off some docs. Just talk about the symptoms and your response to treatment.
Posted by nefferdun (Member # 20157) on :
I agree to get another LLMD. Some of them are a lot better than others. Good luck.
Posted by Paul Mall (Member # 27581) on :
sent you a PM
Posted by nellers78 (Member # 26774) on :
I say you need to follow your gut. If your gut is telling you that being sent to the other specialist, that the Lyme is what you're dealing with, you should go see another LLMD. I'm only 3 months into treatment and I've already been on more than one abx. Everything that I know about this disease thusfar, it seems you have to be on a vatiety of abx to get better.
Posted by little_olive (Member # 28063) on :
An LLMD who doesn't treat coinfections is not even a real LLMD in my book, because you cannot get rid of Lyme disease while you have coinfections!
See a "real" one!
Posted by stork (Member # 24167) on :
Sad to hear that Dr. C continues to not treat co-infections clinically. Babesia treatment has been a key part of my recovery and I never tested positive for it. Had the distinctive headache though.
Posted by TerryK (Member # 8552) on :
Not to scare you and you probably already know this but from the reading I've done, time is of the essence with this presentation.
There may not be a lot of time to try different things which is why finding someone who knows a lot about treating this could be very important.
Terry I'm not a doctor
Posted by Tracy9 (Member # 7521) on :
Considering they can only test for two strains of Babesia and there are more than two strains, not treating it clinically is ridiculous.
Posted by Rumigirl (Member # 15091) on :
I sent you a PM with two referrals. Try and get an appt ASAP with at least the first referral, and probably the second, also. If you have to, beg to get an appt with them and soon.
In the meantime, beg your current dr to keep you on ceftriaxone until you can see someone new. It's negligence if he drops you without treating you while you find someone new, it seems to me. But don't threaten with this word, however.
Posted by TS96 (Member # 14048) on :
Yes you need to call one of the previous refferals given to you. I pm'd you one yesterday.
Let us know how your doing.
Posted by trigal2 (Member # 20578) on :
Maybe do both. Get another NL opinion and a new LLMD who will agree to continue to treat you with abx.'s.
I am glad my LLMD sent me to a NL because I did have a very serious neurological/brain condition that was unrelated to lyme - yes, completely unrelated to lyme. I also had neuro. lyme at the same time.
Never a bad thing to cover all bases because not everything is lyme and you can have more then one thing going on at the same time. TG
Posted by ctlyme (Member # 9022) on :
I was on IV rocephine for 8 months from on ID doctor in Ma.The problem however is that she is also not a big believer in co-infections.
I see a doctor now in Ct who will treat co-infections and has worked with another Neuro to have IV part of the treatment but he alone will not be able to help with IV's.
t PM me if you want her info.
Posted by kday (Member # 22234) on :
I think you should follow his advice and see a neurologist especially with a diagnosis of ALS.
Are you saying he can continue treating as long as you see a neurologist? That sounds fair enough. No?
Posted by littlebit27 (Member # 24477) on :
Yes, I agree with most everyone else. You need a second opinion. And I would think you would need a second opinion from another LLMD because aren't we supposed to stop and add new meds once in a while.
Because of the cyst form and because of co-s? I mean I would think that after six months if you've hit a plateu and are no longer getting better but in fact getting worse.
If you need recommendations for your state send me a PM>
Posted by lou (Member # 81) on :
In your state, having that second consult is the norm. That is because of a law passed in CT about insurance payment.
But if you go to a neurologist, be sure to go to one that is lyme acquainted and recommended by a lyme doctor. Otherwise, this could backfire.
Posted by randibear (Member # 11290) on :
i was told that lyme manifests as many other illnesses, however, i understand your concern.
i'd be scared too, but i think i would find another doc and get that second opinion.
surely there are tests that definitely can confirm either als or the lyme.
Posted by IckyTicky (Member # 21466) on :
With ALS...I've read that your muscle function NEVER gets better, no matter what you do. So the fact that your legs got better tells me you don't have ALS... but "ALS-like" symptoms... caused by Lyme. So my advice would be to see the neurologist (ask him to recommend a Lyme friendly one for you so that your LLMD will continue to treat you. Don't tell the neuro. that you have been dx with ALS, but even if the neuro says "ALS" you know that it is not TRUE ALS. Because you saw muscle improvement during Lyme treatment. True ALS does not do that.
Posted by IckyTicky (Member # 21466) on :
and I wanted to add that I have been on abx treatment for almost three years.. all with monotherapy (one abx at a time). And I've gotten better from that. It does NOT always have to be multiple abx. Although I do agree that you need Babs treatment and an LLMD willing to address that.
Posted by anjiell (Member # 28322) on :
how do you know you are allergic to ceftin?i have a hard time with that antibiotic to.
![[group hug]](graemlins/grouphug.gif)