Diagnosing Chronic Lyme Disease

[Audrey_M]

I'm crisscrossing this forum and the MS forum. I've had neuro symptoms since July 2002 and am now on my 3rd neuo, one who specializes in MS and demyelinating disease. My MRIs from 2007 and 2010 show multiple brain lesions (pix posted in my profie), however the new neuro says that the lesions are not typical for MS and she is triyng to rule out other possibilities, including Lyme.

I think one thing that may have triggered her to suspect this is that in late May 2002, I had a high fever (102) and thought I had a viral infection. Saw my internist in September and then was referred to a neurologist. In his reports, he stated several times that he planned to run a Western blot test for Lyme, but never did.

Had a Western Blot in 2007 and then again a week ago. No reactive bands at all, which is not unusual if the exposure was so long before. Awaiting results from LP done 2 days ago, but understand they are not always reliable. If the LP and spinal MRI (next week) do not show MS, what tests out there can help to diagnose chronic Lyme?

The only time that I have been on antibiotics during this time was for a sinus infection in 2007. I was prescribed Zithromax, which did not cure the infection, but flonase helped to clear the sinuses so that the infection went away. I felt no better or worse while on the Zithromax (i.e., no Herx).

If there are no conclusive test results for any possible diagnosis, what would you do? Consider asking to go on abx for 4 weeks to see if there are any changes?

Audrey

PS- blood tests came back negative for syphillis- lucky for my ex, because he would have been dead meat!

[wonko]

I had to see an ILADS-trained LLMD before getting diagnosed.  I was negative several times on the ELISA, which allows doctors following the IDSA-guidelines to deny further testing.

My spinal fluid, collecting during an LP to rule out MS, was also negative for Lyme.

I had non-specific white matter lesions on MRI, non-enhancing, and a largely neurological presentation.  (Later on I developed joint problems, but not until almost a year of pursuing a diagnosis.)

When I finally did get an Igenex Western blot, it had only a couple of bands on it, not enough for a CDC-positive result.  However, combined with my symptoms and history, my LLMD gave me a clinical diagnosis.  I've responded wonderfully to long-term treatment, which in the end is all that really matters to me.

I agree with the above, if you have MS or suspected MS, I would thoroughly work to rule out Lyme, especially given your location.  I saw 4 neurologists in 2008, each of which was certain it wasn't Lyme but none of which was willing to dx me with anything else.  Instead, I was put on a "wait and see" program, told to repeat my MRI every six months and to "pray" that it wasn't MS.  For me, seeking an LLMD was the only way to get my dx and treatment for Lyme and co-infections, it seemed no one else would seriously consider it.

[gwcurt]

When MS is diagnosed it is usually in one of 3 versions, possible, probable, or definitive. MS like Lupus and many other diseases are difficult to diagnose until they have fully manifested themselves.  I know you want answers. If it were me and there was a chance of Lyme disease I guess I would pursue this with all energy since I think there is the best treatment for Lyme.  While you are pursuing this remember to get exercise and activity to your best ability. It will ultimately help you in the long run more then you can imagine. Good Luck

[JackieCalifornia]

Audrey,

Sorry to hear what you've been through, but your spirit sounds strong, esp. your PS above.  Ha.

I've read your other postings today, and you've been through a lot with your son's Lyme already, so you are (unfortunately) well prepared to deal with your situation, compared to where most people begin.

Are you seeing an LLMD?  It sounds like you may not be.  As you may already know from your son's experience, neurologists are not believers.  I saw one before I found an LLMD and it was worse than useless -- it was demoralizing.

There is a concept called an 'antibiotic challenge' that (if I understand correctly) entails a short course of abx, which stirs the immune system to get active against the Lyme bacteria, and then to run the antibody tests for Lyme again.  It's a method that can produce useful data.

You should also be tested for common coinfections like bartonella, Ehrlichiosis, babesiosis, etc, if you have not been.

But my very first action would be to get myself to an LLMD.  Let us know what you do and how it goes.

Best wishes!  Be aggressive!!