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Any one have lyme meningitis?

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Posted 10/17/2015 11:42 AM (GMT 0)
How long did it take for the headaches to disappear?

Do you have any permanent after effects?

How long did you have it before you were diagnosed (started treatment)?

Why do they classify it as viral when lyme is a bacteria? Is it because it's considered non-infectious?
It doesn't make since. Viral is self limiting, lyme is not.
Posted 10/17/2015 11:55 AM (GMT 0)
They say it's viral because they don't (won't) recognize the bacteria that is responsible for the meningitis/encephalitis.

Because they don't recognize it, they assume it must not exist and therefore must be the only other thing they know to cause the symptoms.

You are lucky not to simply have a diagnosis of psychological illness, which is what they tried to foist on K.

K's symptoms of encephalitis gradually resolved with continuing bartonella treatment. Perhaps 1 year in.
Posted 10/17/2015 12:11 PM (GMT 0)
Was K on IV infusions?

Were they able to get a positive lyme diagnoses from the spinal fluid cultures?

It's not me who has it. My 13 year old son has it.
Posted 10/17/2015 1:22 PM (GMT 0)
K only took oral abx. We only found out later that herbs actually work better for us.

She also didn't have a spinal fluid culture. LLMDs don't regularly do that - they prefer Igenex or other testing along with clinical diagnosis.

Our LLMD clinically diagnosed K with bartonella right away and said it was responsible for her PANS/PANDAS and encephalitis symptoms. It was. The LLMD however, didn't get the presence of babesia right. K tested negative for both microti and duncani and didn't really respond to malarone. It was only trialling CSA that brought out the babs herx and subsequent babesia clinical diagnosis.

I personally don't think that lyme is the important organism to look for in the more seriously compromised individuals. Look for coinfections and treat them.
Posted 10/17/2015 3:08 PM (GMT 0)
I had it 2 months ago. I had just been diagnosed with Lyme but contracted it right before I started treatment. The headaches lasted about a week. The Dr. said it would be gone in 7-10 days and she was correct. about 10 days later I was back to my "normal" Lyme self. ;)

Hope your son feels better soon!
Posted 10/17/2015 4:07 PM (GMT 0)
I get meningitis symptoms every time I get Lyme and then start treatment. It's part of my first herx, and boy is it horrid. Migraines always accompany the meningitis for me.

I have not had any lingering symptoms, even though I never sought out medical treatment for the meningitis itself.
Posted 10/17/2015 4:16 PM (GMT 0)
Thanks rebekahm. His headaches have been daily for over a month now. We've noticed that after a half hour of blue screen exposure will bring on a migraine. This morning he was watching his brother play on the Xbox, he's now in his room with a migraine.

Hopefully, Monday he will back at school part time. I'm worried about the headaches. A lot of school work is done on the computer. I'm going to see if the teachers can give him the same material in printed form.

The ID doctor is already saying he has post lyme syndrome. I will be making an appointment with my LLND for him on Monday, before his midline is removed.
Posted 10/17/2015 4:23 PM (GMT 0)
Traveler, the lyme is in your CSF?
Posted 10/17/2015 5:09 PM (GMT 0)
It was never verified, but I had been infected for 40 yrs and had all the symptoms of it being in my CSF. I had every one of the symptoms in the Master Symptom List for Lyme (found in the New to Lyme? thread) except for the more serious heart issues and any male only issues - plus I had seizures and black outs.
Posted 10/18/2015 7:27 AM (GMT 0)
My son (12 yrs old) had the worst migraines that I have seen--ever. He can take pain, lots of it, it became part of every day life. He had all symptoms of encephalitis/meningitis. His migraines were so severe that he wanted to bang his heads on the walls or floors to make the pressure go away. He still gets headaches once in a while after a few months of abx (orals), but he no longer gets migraines.

He also used to get grand mal seizures. They too resolved after starting treatment. We are at a downturn and I will post more in a different post if you are interested to learn more about his condition.
Posted 10/18/2015 5:23 PM (GMT 0)
Hi Simela!!
I'm so sorry that you are back here posting, but I am glad you chose to come back here!!

I would definitely like to hear more about your son - and my deepest sympathies go out to him!!
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