posted
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 **
posted
go to the neuro if u can get mri etc never know what they find
ceftxne doesnt cover everything that can cause thiiiis
Posts: 61 | From limbo | Registered: Nov 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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.
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree to get another LLMD. Some of them are a lot better than others. Good luck.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
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.
Posts: 256 | From Texas | Registered: Jun 2010
| IP: Logged |
posted
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!
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
| IP: Logged |
posted
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.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Considering they can only test for two strains of Babesia and there are more than two strains, not treating it clinically is ridiculous.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
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.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
| IP: Logged |
posted
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
Posts: 376 | From New Jersey | Registered: Jun 2009
| IP: Logged |
posted
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.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
| IP: Logged |
posted
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?
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
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
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.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
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.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
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.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
posted
how do you know you are allergic to ceftin?i have a hard time with that antibiotic to.
Posts: 125 | From western mass | Registered: Sep 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic