We reviewed that I had positive negative under the Quest lyme test. He then asked for my spinal tap test results. I said that the only one I had one done in 1998 and it was negative for lyme. Quest did the analysis then.

He said that Quest is not that reliable for spinal taps and he uses another lab, Immunex.

So I did a spinal tap last night and he gave me two extra tubes so that if any of my lyme doctors wanted to do a spinal tap analysis, they could.

He said that might lyme might be perpheral in nature, if the spinal tap came back negative for lyme, and that minocycline would help cure the virus. If the lyme got into my CNS, I would need to go on a program of IV drugs.

I was pleasantly surprised by how he responded to the information that I presented to him. He did not dispute anything but took steps to get to the bottom of this mess.

I guess that not all mainsteam doctors are ducks.

I remember seeing a post/article that there is only a 20% chance of a spinal tap catching a lyme infection.

Most important to go by your symptoms. If you have a lot of neuro symptoms, you should be treated accordingly.

While my experience with non-LLMDs has been less than satisfying, I have to agree that you can't generalize against all the regular docs.

The docs who are stubborn, think they know everything, and don't listen to you are probably bad all-around.

Those who take you seriously and at least keep an open mind are the good ones. If, instead of dismissing me as a panic-attack victim, a non-llmd told me "I really don't know much about lyme," I would respect him/her much more.

Sounds like your neuro is open-minded, at least. But don't hold your breath for much info from your spinal tap. Some of our posters have had a positive test outta theirs. I didn't. You might see elevated proteins.

I did a spinal tap four months ago at MS doc's insistence. Made him (grudgingly) give me a tube for IGeneX. I swear he smirked at me when it came back negative. I did have elevated proteins and some other abnormal findings.

My MS doc still refuses to accept a DX of Lyme. He borders on unbelievable. I presented with classic neuro Lyme, screaming headaches nearly 24/7, related a bite with EM rash, and carried my brain MRI films demonstrating 11 frontal lobe lesions with radiologist's remarks "consistent with Lyme disease."

His response? "Your 'EM rash' may have been an allergic reaction. Ve just need to find vot is causing your headaches. Ve just need to find your triggers."

Later, he disregarded my CDC positive western blot (never heard of IGeneX).

You don't want to hear what he thinks about my LLMD treating me longer than 30 days. Oh, my. This, in SPITE of the fact that he himself completely misdiagnosed me! The cheek!

So, IMO, your neuro sounds like a saint.

Don't let him take the place of an LLMD but don't throw him out with the bathwater, fer sure!

Michelle

The EM rash should convince even the most lyme-ignorant doctor that you are infected with lyme.

If you have an EM rash, most docs will treat you right away, even before test results come back.

As for help with you headaches, I have found supplemental magnesium to really help. I've had weekly migraines for 15 years, but since I added Mg to my supplements, I am down to one every month or two, and I can even stop one as I feel it coming on if I get some Mg down in time.

Acidophilus can also help.

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Originally posted by JustMeInCT:

He said that might lyme might be perpheral in nature, if the spinal tap came back negative for lyme, and that minocycline would help cure the virus.

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What virus???

This guy actually has a brain! Wow! However, I do agree with johnny that the spinal tap has a 20% chance of showing positive.

Do you have an LLMD yet??

My neuro is so far gone that on my recent recheck with him, when I described my ongoing symptoms (to explain why I was still treating beyond 30 days of ABX), including actually getting lost a mile from my own house, he said, "That not Lyme; that sound like seizure from migraine." HUH??? Now I'm having a seizure while I'm driving?

I need to not have any more rechecks with this idiot before he takes away my license.

I haven't officially "fired" him only because may still need him for future brain workups, etc. -- but NOT for any input on Lyme disease!

JustME -- please do get an LLMD. No offense to your neuro, he sounds like an open minded and pleasant guy. But unless he treats a lot of Lyme patients, he is going to be out of his element.

Spinal taps to help diagnose MS are one thing but they're really not very diagnostic for Lyme. You already have all the "diagnostic" that you need and then some to start treatment. Your neuro likely won't keep you on treatment nearly long enough. Please consult with an LLMD -- keep your neuro in the loop too but get an expert. Your health is worth it!!!

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Originally posted by JustMeInCT:
One more thing; what is an EM rash?

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Hi JustMe!

EM="Erythema Migrans" - the classic reddish rash around a tickbite; sometimes shows up after you've been bitten. Not everyone gets it or even notices it.

A great lab to send your tube of spinal fluid to is IGeneX in Palo Alto, California.

I think you can find them at http://www.igenex.com -- call them up and they will send you a kit to put your tube in and tell you which spot to mark. Put your credit card number on the form, send it off in the prepaid FedEx pack on a Monday, and voila. You do need your doc to sign off on the authorization but it sounds like that will be a piece of cake.

I'm wishin you well!

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Originally posted by Michelle M:
JohnnyB, rest assured, I DO have an LLMD, and together we have a laugh at my neuro, who's well known at my LLMD's office.
....I need to not have any more rechecks with this idiot before he takes away my license.

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Good... I made the mistake of not researching enough in the beginning, and assumed it wasn't lyme- it was just in my head.

I keep worrying about the license stuff too.

If only I had known about IGENEX before getting the spinal tap. I would NEVER get one again unless absoultely necessary. The procedure itself went fine for me, but the headache... OMG.... I get migraines and they were like a day in the park compared to this one. Was basically lying down for an entire week afterward, just getting up for the bathroom.

Hope your tap went better!