posted
I know I'm far from the only lyme patient to suffer from meningitis/encephalitis. But after five years of aggressive treatment to get neuro lyme under control, and having finally gotten rid of most major neuro symptoms, I got seriously ill with meningitis last July.
Problem is the meningitis won't STAY GONE this time. I am under the care of a good LLMD who has ramped up my antibiotic treatment repeatedly to address this problem.
My current regimen is four to six week cycles of IV Rocephin and IV Clindamycin, followed by four to six weeks of IV Zithromax and IV Clindamycin and Mepron. I also pulse with a week of Flagyl every fourth week. A course of IV Levaquin will probably be added soon.
For symptomatic relief, I am also on Diamox, Naproxen, Neurontin, Valium, phenergan, Aleve, and Oxycodone (Percocet without the tylenol).
My meningitis symptoms, when they flare up, include low grade fever, stiff painful neck, headache, severely exaggerated motion sickness, nausea, vomiting, vertigo, eye pain, and sensitivity to lights, sounds, touch, motion...just about everything. I have lost 35 pounds in the last six months.
When this first began last July, I was desperately ill for the first few weeks. I slept the clock around for the first two weeks, waking only to occasionally go to the bathroom or take meds or small meals in bed.
My local internist sent me to the ER at the beginning of this illness where I was given a spinal tap to rule out bacterial meningitis, which was negative, a head CT, which was normal, blood cultures, which were normal, and a truckload of other blood tests, which were for the most part unremarkable.
Oral antibiotics of all kinds were prescribed in the initial weeks, none of which I could keep down long enough to see if they'd work. I had a PICC line put in in October, and the IV meds do seem to help, but I continue to have cycles.
I have seen gradual improvement. Instead of being sick ALL the time, I now have periods where the meningitis symptoms nearly disappear for up to a week at a time, and then I will have a flareup that may last for just a day or two, or for a whole week or more. I am currently in a flareup that has lasted a full week, and it is not over yet.
I am no stranger to lyme. At one time or another, I have suffered just about every symptom imagineable. These cycles, though, are different than lyme cycles I have experienced in the past.
Has anyone else gone through anything like this? Advice??? Please???
I feel like my life is draining away!!
Posts: 962 | From Charleston | Registered: Jan 2002
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Just a thought - but with all the mega doses of Iv's have you considered "yeast" to be part of the culprit?
When I too suffered after mega doses of Iv's and orals for 7/8 yrs and suddenely there was no improvement, I took the yeast journey including diet.
It took yet 2 more yrs but I came out to be about 85%.
Posts: 374 | From NJ | Registered: Aug 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Maryland. I am so sorry to hear that you are suffering so.
You do not remark on co-infection status...
Really horrible brain pain sure makes me think of babesia.
It sounds as if you're covered well for lyme treatment. However, with babesia, even if you've been treated before (but especially if you haven't!), it's been found that even after repeated treatments, the brain of an autopsied patient contained five times as many babesial organisms as any other organ in the body.
I do believe it is capable of causing the symptoms you describe.
Just a lyme/babesia patient, not a doctor.. hope you find some relief!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks for your replies, Ladylee and Michelle. You both raise good questions. Yes, I have considered yeast, and done rounds of diflucan just in case. That did not seem to impact my symptoms.
And yes, I do have coinfections...in addition to Lyme, I also have bartonella and babesia, and had positive PCRs in past years for M fermentans. My first LLMD was convinced I had erlichia too, and treated me for that, though I did not have a positive test for that.
My current regimen is IV Clindamycin and IV Zithromax. I am about to add Mepron, which would address the possibility of a babesia recurrence.
Posts: 962 | From Charleston | Registered: Jan 2002
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posted
Bumping this up once more...has this never happened to anyone else??? I am hoping someone can help.
Posts: 962 | From Charleston | Registered: Jan 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote: I am about to add Mepron, which would address the possibility of a babesia recurrence.
Hi Maryland.
Not to be a bearer of bad news or anything, but this is at the absolute TOP of my suspicion list, 'specially if you tested positive for it and treated it once before.
How long did you treat it before, and how long has it been?
'Cause like lyme, babesia is frequently "the gift that keeps on giving."
I beat mine into submission with a couple months of treatment, but within a few months it was back.
I'm not saying it comes back for EVERYONE. However, the chances are really good!
I'd plan to "lay in" when you start treating and have some help around. Ask your doctor about adding artemisinin to a Mepron/Zith regimen as it improves efficacy, but go slow because it's tough.
And know that better days really will come.
And don't be a stranger 'round here!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
The first reaction is I am sorry you have been so sick.
Second reaction is that it feels like babesia is in the picture. Because it is a protazoal infection abx do not touch it which could perhaps explain the IV abx not knocking your infection down.
My son had severe pain from Babesia which is WAY down with the Mepron and Zith. I wish we would have treated that first. But the good news is it is getting better...
I don't want to oversimplify here. Seems like many of us have to discover and address a piece of the puzzle at a time and unfortunately there are many facets to address.
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