Way back when (1990 i think) my whole shbang with Lyme started with meningitis. After being diagnosed, I was treated with 2 weeks of Rocephin (hey, I was treated by Sigal in NJ, who knew?).
About 6 months later, I had all the same symptoms. My PCP called Sigal for retreatment and he said they didn't do that. My doc replied, "If I had a patient with a sinus infection come back with a recurrence after abx treatment, I wouldn't tell them, 'We don't do that' I would treat them until they were well." Sigal replied again that they didn't retreat.
My PCP hung up and put his head on his desk. When he looked up he said, "I'm glad this is you and not me! And we need to find you someone else who can treat this."
I eventually made my way to an LLMD in NY where I was retreated for a longer period of time on IV and then some orals for good measure. The meningitis was gone until another recurrence in 1997 (so no meningitis for about 5-6 years).
I think re-doing your IV is a good way to go. Meningitis sucks big time in so many ways. But do know that I did get rid of it (good enough to go from barely able to walk and read to going to grad school for PhD, so good treatment really does help the meningtis). Gosh, I really wish you the best.
~DM
BB....call your dr ASAP! Don't let it get the upper hand on you!
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oops!
Lymetutu
Sorry to hear of your many symptoms again. My best to you & family w/their lyme too.
Betty G.
I was treated with IV rocephin for 10 days for meningitis, then oral zithromax which I continue to take.
In the beginning (years ago), my symptoms were meningitis-like. It was chronic for the duration, but no one suggested lyme or meningitis. In retrospect, now that I've experienced the E-V-I-L meningitis, I have reason to wonder if I didn't have a low-grade, chronic form for years.
My lyme PCR came back negative on the 10th day in the hospital, and it's the only reason they released me. They told us initially lyme meningitis is serious business and I was looking at an extended stay if my PCR ended up being positive for lyme. Sicker than snot and they sent me home. Tried convincing us that I had a headache from the spinal tap. Bunk.
I have a written Rx for IV from Dr. C, but no one will fill it here. Go figure. My other, more local LLMD (2 hrs. away) told me he would help get me hooked up after I get him a copy of the order. Definitely plan on following through with it. I can feel this creeping up on me as sure as I'm sitting here.
Betty, thanks for cheering me on! Hubby and son are doing spectacular! Sure hope you continue to do well. The banner . . . if I'd have seen one during my dark days, I'd have contacted the owner in a heartbeat!
Love,
BB
Good to see you and your flashy pants!
Yes.. my stuff relapsed. Nasty too.
Have you been treated for babesiosis?
Hope you get help soon...
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If you get the choice to sit it out or dance...
Here's a study to confirm what you already know...
Angie
1: Wien Klin Wochenschr 1999 Dec 10;111(22-23):961-3
Lyme meningitis: a one-year follow up controlled study.
Cimperman J, Maraspin V, Lotric-Furlan S, Ruzic-Sabljic E, Strle F.
Department of Infectious Diseases, University Medical Centre, Ljubljana, Slovenia.
Thirty-six patients with Lyme meningitis diagnosed at the Department of Infectious Diseases, University Medical Centre, Ljubljana in 1993 and 1994 were enrolled in a prospective study. All patients had lymphocytic meningitis, negative serum IgM antibody titres to tick-borne encephalitis virus and met at least one of the following four criteria: i) isolation of Borrelia burgdorferi sensu lato from cerebrospinal fluid (2 patients), ii) intrathecal borrelial antibody production (22 patients) iii) seroconversion to borrelial antigens (3 patients) and/or iv) erythema migrans in the period of four months prior to the onset of neurological involvement (21 patients). All patients underwent antibiotic treatment and were followed up for one year. The results of our study revealed that Lyme meningitis frequently occurs without meningeal signs and is often accompanied by additional neurological and/or other manifestations of Lyme borreliosis. During the first year after antibiotic treatment, minor and major manifestations of Lyme borreliosis persisted or occurred for the first time in several patients. They were not infrequent even at the examination performed one year after therapy.
Publication Types:
* Clinical Trial
PMID: 10666809 [PubMed - indexed for MEDLINE]
The symptoms you describe could be Babesia which can be responsible for treatment failure down the line....ask your LLMD about testing or treatment for this.
I have had these symptoms and bad meningitis and have Babesia and Bartonella.
BW
Emma