New to lyme part II

I posted on this forum about a month ago.
I had been bitten by a tic and had the big rash.
Since then the migraine headaches have persisted and now I have a little trouble concentrating and spitting out what Im trying to say.
I have had blood test that have came back negative. MRI's of my head to try to determine if their were issues with the lining of my brain and they all came back fine.
They headaches are still here and they are planning on doing a spinal tap in two days.
A lot of Dr.'s in this area say you cant get lymes here in my area. My Dr. who is one of the top Neurologist in the state says you can.
My question is... has anyone had the lumbar puncture for lymes and if so what exactly are they looking for?
just curios if anyone has any experience with this.
Thanks for your help!
I know that Im a little vague but seems that everything is vague right now.
Eric P

Hi Eric,

If I were you, I would not waste time with the neuro and spinal tap and get yourself to a LLMD (Lyme Literate Medical Doctor). When I first got sick with Lyme, I spent a lot of time working with an ID doctor and Neurologist. I eventually consented to have the Lumbar Puncture not to diagnose Lyme but to rule out MS. I have a lot of neurological issues with neuropathy and motor control. If you know you were bitten and developed a rash, there is a very good chance that your symptoms are Lyme related.

When I had the lumbar puncture, they did test my spinal fluid for Lyme, however I had already been previously diagnosed with Lyme with positive results on my Western Blot. I would skip the spinal and get yourself to a LLMD. Good Luck!

Eric:

I agree with the others, you should not waste anymore time on tests.  I think if you get the rash, as I understand it, is proof enough you have Lyme--I may be wrong, but I remember reading an article where the LLMD did not even test his patient, he took a look at the rash and said "That's enough proof"

Don't waste anymore time, I got worse, by trying to figure this out and trusting my old PCP.  As it turns out, my tests were +, he just did not know how to read them!  Get an LLMD, you will save $$ in the long run.  If you get worse, you will spend more for treatement and the treatement may not be as successful.  The sooner you start treatement, the better.  Insurance does not cover long term antibiotics treatement, so you will not save that much AND you will actually risk spending more, if you get worse in the mean time.

My first treatement (given by PCP #1) was 3 weeks--not enough!  I've relapsed in less than a year.  A pcp may not give you enough medicine, and you may feel better at the end, but that doesn't mean all the spirochets have been distroyed.  If some will be still inside you, you may relapse.

Today, my new PCP put me on abx for 4 wks, until I can find an LLMD.  They are all on vacation, it seems. 
Of course, the above is just my oppinion, based on my research with this desease, as I have struggled for answers for a couple of years--which is what brought me here.

Good luck!

Eric, When you say you got the 'big rash' do you mean you got a bull's eye rash? This is very important, because if you did get a bull's eye rash, then you have contracted Lyme.

Not everyone w/ Lyme got the rash. However, a bull's eye rash ALWAYS diagnoses LYme. Nothing else causes a bull's eye rash. ALL Drs are supposed to know this!

If you got some other type of 'big rash', and you are ill, then you need to be tested/ treated for Rocky Mt Spotte Fever ASAP!

Rash...lighter in the middle darker toward the outside,spot in the middle where the tic was that I found.
about 2.5 inches in diameter.
Was it a perfect bullseye...No.
Family physician took one look at it and said "bad news.. that is a sing on lyme"
21 days of doxy. Mederol Dose pak...finished.
Symptoms have not let up. I had a few good days in the middle of the steroid pak but didn't last.
Test up till now have been negative including RMSV.
Neurologist is planning on doing a lumbar tap thursday morning.
That is where I am at.
Thanks everyone for your help...Keep it coming!
Eric

I am in Missouri.
Eric

Have you actually been treated yet? It sounds like you are doing everything but and the longer you go the more entrenched the bacteria get. Get to an LLMD. Bullseye = lyme. Period.

Steroids push the tick-borne infections into the tissues & out of the blood stream. These tests only test the blood, so If you have taken steroids the antibodies that these tests rely on will not be found in your blood unless you get re-infected from what I have read.

I live in the area of the Ar. & Mo. state line and although I have not seen him ( can't make that long of a trip on a regular basis), the LLMD that GWB spoke of has a great reputation.

You REALLY need to be seen by a qualified LLMD. Don't wait for this to go into 'Late Stage LD' before you finally get the appropriate treatment!
There are a fairly large handful of us here that live with a the Late Stage infection, and I don't believe that even one of us is happy with the way things went.

It's also a LOT harder to rid the body of a late stage infection.

That is my impression, too. You had the typical bullseye rash. I never got it, but the presence of it, means you have Lyme. The longer you wait, the longer you will need treatemen, making it more expensive at the end... The rash is enough proof!

Great help everyone!
My biggest symptom right now is an explosive headache every morning. In 5 weeks I have probably gone 5 days without. Did any of you have these headaches? Even though I have had MRI of my head my mind still wonders if I have something other than lymes. My wife assures me that it would be to great of a coincidence that I found a tick on myself, had a bullseye rash and then the headaches show up to be something else.
Eric

Anyone have experience with the headaches?
Not your normal headaches...what I imagine a migraine would be like.
Eric

Eric:
I've had my share of headaches... Specially when I bent to pick something from the floor or to do laundry. I agree with what the other have said, get an LLMD. It will cost you more later. My PCP gave me 1 mo of abx because I could not see an LLMD right away. There is no easy way to get to the other end of the tunnel. My previous PCP said I don't have lyme, that my tests came + because I have had it. My new PCP correctly interpreted the tests being +. I've posted a link today about how you can read your own tests. I was misinformed for 1 year! I know take matter in my own hands--it is my life! Some PCPs are clueless! Have your wife do some reasearch and she will understand. Don't wait too long! Someone I know is in a wheelchair from lyme and co-infections, lost his $70,000 job and is now on dissability. He's gotten so bad that he can't answer my emails, he's having a family member type them in. I was in denial when I first came here, but through research, I realized it is not a joke, this thing is serious, and it will dissable you if you let it! Just my oppinion, take it or leave it!

Again has anyone here had a Spinal tap to determine if they had lymes.
Thanks
Eric