Dr. Nicolson - What hope is on the horizon for diagnosis & treatment of Lyme disease?

[Hope75]

My current diagnosis is very controversial from diagnosis to treatment, and it leaves patients like me in a cruel limbo.  All the while, I am suffering chronic pain in the form of peripheral neuropathy, as well as fatigue, joint pain, fasciculations, weakness, tremors, and too many more to mention.  My 2.5 year battle with these symptoms and search for a diagnosis has been exhausting.  I was interested to see a positive ELISA from Johns Hopkins when I requested my medical records as no mention had been made of it.  I called my local neurologist, who said that I had a negative Western Blot at a "conventional" lab, but I could get more testing done through a lab that specializes in Lyme diagnosis - Igenex.

Apparently, Igenex labs is the ultimate choice for those in Lyme limbo.  In stark contrast, the naysayers of the mere existence of "chronic" Lyme suggest that Igenex is unreliable and there are far too many false positives being reported from this lab.  I coughed up the $475 for a WB from Igenex, which yielded a CDC positive IgM result.  Everything else was indeterminate or negative, but the CDC positive IgM result, in and of itself, could supposedly hold water with any LLMD and possibly non-LLMDs.  

I've started the readings, the research and the advocacy for those in the earlier stages of their search for answers.  I am as exhausted as before my diagnosis.  I'm being treated with oral antibiotics as a conservative initial trial.  
In sum, is there any light at the end of the tunnel for those of us who only fit into the category of Lyme disease in the avenues of diagnosis and/or treatment?  The politics of the disease are overwhelming and can be compelling even in those of us who have seropositive results and congruent symptomology.  As I take my antibiotic for the night...I wonder if it will be the key to my health soon.

[Garth L Nicolson, PhD]

Unfortunately, most physicians who treat Lyme Disease know very little about the disease and especially about the co-infections associated with Lyme.  You were right to demand a test by Igenex Labs.  They are considered the gold standard for Lyme testing, and when their results are positive (as you described), especially by the more stringent CDC criteria, you can bet that you are really positive for Borrelia b.  The entire Lyme area is riddled with bad medical politics, so it is not uncommon to become frustrated at the apparent lack of response to your situation.  There are very few physicians who really know how to treat Lyme and associated infections, so the average physician will be very conservative in his/her approach.  The treatment is long-term, so don’t expect any miracle any time soon, and finding the right physician is essential.  I suggest you contact the International Lyme and Associated Diseases Society (www.ilads.org) for a list of literate practitioners who know how to treat Lyme in your area.  ProfGN

[wonko]

Thank you Prof. for this response.  Hope75's situation resonates with mine, though I'm a bit further along and already under the care of an ILADS LLMD.  

Thank you for ackowledging both the confusion surrounding Lyme and the need for long-term treatment.

[margypops]

I live in Temecula and am having trouble finding an LLMD for a test /diagnosis Is there one in Huntington Beach I can use?

[Garth L Nicolson, PhD]

I would contact the ILADS to find an expert in your area.  There are not many in CA, and most can be found in N. CA not S. CA.  ProfGN

[Hope75]

Thank you so much for your reply.  Your time and input is greatly appreciated!