Expert: Carol - 8/1/2006

Question
My friend was dx'd with ALS 11/05 and 18 mo before had Bell's Palsy and now has also been dx'd with Horner's disease.  We are very interested in which laboratorys in the US do the best testing for Lyme.  I had corresponded with several people who had all used one specific lab which was suppose to specialize in Lyme disease testing.  We can't believe that there isn't a connection between all these neurological dxs and whenever we do searches for any of them, Lyme disease is always mentioned.


Pam Barr

Answer
Hi, Pam....From what you've described, I would certainly pursue the Lyme angle.  I, personally, believe there is a connection between Lyme and these neurological afflictions; if not specifically Lyme, then some other micro-organisms that have yet to be identified.

The best lab for processing a Lyme test is Igenex in CA.  (See www.igenex.com)  The only thing is, one can have a flaming case of Lyme disease and have a negative test result no matter where the test is processed.  Doctors do not know and refuse to believe this.

The only recourse there is, is to find a Lyme specialist.  A Lyme specialist knows that the bacteria can evade detection in both blood and spinal fluid and every test that exists for Lyme. There is also the added complication of the co-infections for which one should be tested.  Their symptoms can overlap with Lyme and not all respond to the same antibiotics.  A Lyme specialist can sort all of this out AND he will treat a patient with negative test results.  If the patient improves, then he will continue to treat with antibiotics.

There have been cases where people have been misdiagnosed with ALS when it was really Lyme.  One man was clear down to the feeding tube when he found out he had Lyme.  He was given antibiotics and made a full recovery.

I would encourage your friend to find a Lyme specialist and get tested for Lyme and the co-infections.  To find one, go to www.LymeNet.org  and register.  The forums are under Flash Discussion.  There is a forum called Seeking A Doctor. Post there with his city and state and someone will email you privately. There is a policy not to post drs' names on the site due to privacy issues.   This is peak season so there may be a bit of a wait for an appointment. If so, ask to get on the cancellation list for the chance to be seen sooner.

Good luck and please let me know if I can answer anymore questions you might have.  I'm glad to help.

Carol