Was this test even worth the pain & Expense?

I have an Appt. at johns Hopkins Will I have any luck there.

quote:

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Originally posted by zing:
Spinal tap I must have transposed the letters AND thats not hard to to these days

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If your doctor is only looking for Lyme, this is probably one of the worst tests for it.

If he's also looking for other things, such as MS and degenerative brain disorders, it's probably worth it.

Very few people have a positive WB or PCR on the CSF. I'd say around 5% success rate. I had an SP and I spent 5 days in bed afterwards; the last 4 of them with a monster headache. All tests negative. I had a WB done on the CSF and on blood. Only the blood came back with a couple of positive WB bands. CSF was negative all over.

It's also a relatively expensive procedure, though your insurance company is likely to pay most of it. I had to pay almost $100 in copayments due to out-patient status during procedure.

I'm not a doctor, nor a medical specialist.

I see the search feature still is not back up running. This is so frustrating not to be able to easily pull up old posts!

I wish it would work today because you could type in "johns hopkins" and just with reading a few threads discover that you will probably get NOWHERE there. And that's if you're lucky.

They most likely will have you going completely down the wrong path and dissuade you from investigating lyme. I have seen too many post in the past about the negative climate there regarding lyme disease. They are part of the bigger problem that lyme patients face. The "if we don't diagnose it it isn't there routine".

I wish I could pull up some old threads for you to see. They are not lyme-friendly there and you may either be misdiagnosed OR diagnosed with lyme and severly undertreated.

Lyme patients have had the same problems with other large medical institutions, like Mayo, UPenn, etc. This is generalizing of course, but I know through experience (my own and others locally) that Infectious Disease docs or Neuros at Hershey Med would not know lyme if it knocked on the door and intoduced itself.

I'm sorry I cant be of more help right now but patients who get well are not doing it under the care of Johns Hopkins doctors.

Please read the last post by Tincup (with the word YIKES in the heading)

We might be close in proximity. Email me if you want

Sorry you're sick, keep reading and educating yourself and post in Seeking a Doctor to locate a lyme-literate doctor here in PA. I also have a list, just ask and I'll send. There is also a support group in southern York (Gettysburg, too) and I can give you that info too.

Best wishes,
Leslie

ps. Have you had the western blot (blood test) for lyme yet? Ask for that. In the (flawed) two-tiered testing that physicians do, it is the 2nd test. The ELISA is usually done first and, if positive, is confirmed with the western blot.

Lyme patients and LLMDs know that the ELISA is a poor screening tool. Ask to skip it and go right to the western blot, or request both test be done at the same time. My ELISA was + and so was my western blot. BUT< My husband's and son's ELISAs were NEGATIVE, but their western blots were positive.

A good book to begin reading is the Denise Lang book "Coping With Lyme Disease" 3rd edition. Also good:, "Everything You Need to Know About Lyme Disease and Other Tick-Borne Illnesses" by Karen Vanderhoof-Forschner.

We certainly have a ton of lyme around this part of PA. You are smart to be considering the possibility of lyme, especially if you're in York Co.

thought I had west nile, I couldn't even touch my tongue to my lips,lost the vision in one eye, Ect... I sure you all know... I was treated for 20 days & told

that was all i needed. I felt good & wasn't
pro-active about my treatment/ figured my
doc Knew what he was talking about (I know

that was a mistake). so here I am very ill can barely walk somedays an it happened so quick .

It sounds to me as if your illness was never properly treated. You should be checked for co-infections as well.

Not clear to me whether you already had this test or have it scheduled at Johns Hopkins.

Think this is not considered a good test for lyme because it very seldom finds it, even when it is there and other tests are positive. Therefore, invasive, expensive, and not much help in diagnosing the disease. That to me is the definition of a bad test. Lyme docs usually say that it is done to rule out other diseases, not diagnose lyme.

I did contact the Fredrick Md. group & got some info but I think I will stick to a Pa Dr. I found some one in my hometown who said he would treat me & he has a good reputation for not being mainstream so tomorrow I will take my Info that I have collected over the past 2 weeks and see if he follows Ilads / Dr Barrascano.

If I don't feel comfortable I have the list for Pa.LLMD to continue my search.

Kind of scary - a newbie w/ a newbie Doc

quote:

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Originally posted by zing:
Thanks for the info. i had a positive WB 2
years ago / had really bad symptons I

thought I had west nile, I couldn't even touch my tongue to my lips,lost the vision in one eye, Ect... I sure you all know... I was treated for 20 days & told

that was all i needed. I felt good & wasn't
pro-active about my treatment/ figured my
doc Knew what he was talking about (I know

that was a mistake). so here I am very ill can barely walk somedays an it happened so quick .

looking back I had alot of things showing up that all pointed to a reaccurance. how fast you learn when you can't get answers from your doc. fish I will e-mail you I am just down 81 about 45 mins I need a doctor

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