So sorry you are having to deal with this!

Definately sounds like you have some on-going facial neuropathy going on. And Bell's can never be ruled out in early or late dissemminated Lyme.

The hearing sensitivity, numbness, tickling sensations and droopy eyebrows are all consistant w/ Bell's. Onset is usually fairly rapid (within a few days), one-sided and progressive.

At this juncture, more likely to be characterized as on-going neuropathy of facial nerves due to the Lyme rather than Bell's.

But, most important, do you have an LLMD?

And what lab were your tests sent to? Most general labs are notoriously bad for Lyme.

You mentioned you were seeing an ID soon but I'm worried you'll get the run-around, what with your current equivocal lab results and previous clinical diagnosis and treatment.

At best, I'm concerned a non-Lyme ID will order more tests to be sent to general lab facilities and send you off to a neurologist. Not necessarily bad things if you've got a differential diagnosis going on, but an utter waste of time, money and precious energy without a Lyme MD working on your case right away.

My suggestion, with your history and symptoms, would be to find an LLMD and/or a Neuro-LLMD right away. The neuro LLMD would be perfect because s/he can cover both the infection and neuro bases simultaneously.

Good luck and keep us posted!

My goodness, I just saw that you are in Scotland!

Yikes! I have no idea what the LLMD situation is over there. I do know we have some UK members who might be able to help and there are int'l resources but I'm not familiar.

I'll look into it and in the meantime I hope some other members will chime in.

Best regards,
andie, jc & julie
Lyme x 3

He knows that an inadequate course of antibiotics can knock out your antibody response and adversely affect later tests. And I have a copy of a letter from him to our doctor which says and I quote "As you know, ELISA tests can produce false negative results in some patients". Nice to know that there are a few medical people out there who don't think ELISA is infallible. He then goes on to say about my tests - "The equivocal WB blot tests are consistent with this patient's history and treatment (my totally inadequate 21 days Doxy at 200mg last year) and are suggestive of LD. This patient will benefit from reassessment and possible further anti-mircobial therapy." I think he means that he thinks I may still have LD despite the test being only equivocal.

So this is the letter that has triggered the referral to the ID consultant. I have already seen a neurologist and am scheduled for a non-urgent MRI as he could not find anything untoward. But my forehead numbness and drooping eyebrows were not present on the day he saw me - it comes for a few days and then disappears for a few days.

So I think I am already doing what I can here - but if the ID consultant proves difficult to deal with, then my next step is one of the few LLMDs in England. And if that fails??? You may see me on the other side of the pond yet!