HELP-need to find LLMD

[LindaMW]

I am trying to figure out my sons Igenex western blot and everything I keep reading says to talk with a LLMD. I have tried searching on lyme sites and emailing anyone I can find and have had not luck.

 

Does anyone know how to find one in this area?

 

According to CDC and Igenex he is negative for lyme but on both Igg and Igm band 41 is positive and band 39 is IND. He is still displaying fatigue and memory loss and general brain fog. He started back to school last week and was fine and this week he is back on the couch. We have been fighting this Pandas battle for two years and still not getting to the bottom of everything. Strep, mycoP and who knows what else. There is still something going on in his body.

 

Pleae if anyone knows of how I can find one or can recommend one, I would really appreciate it. My head is pounding so hard from either crying or searching the internet.

 

 

[msimon3]

Sadly, the state of Lyme testing is such that one Western Blot may not mean much. Please note that the WB test is measuring antibodies for 1-2 variants of 1 of 36 species of Borrelia. A negative test doesn't necessarily mean you don't have Lyme disease, but instead means that not enough antibodies were measured to show a positive. In dogs and mice, Lyme has been proven to be immunosuppressive and therefore a WB on these animals would show a negative. The difficulty is that a single positive or negative test doesn't prove much, and you need an LLMD to make a clinical assessment.

 

If you reply with your location, perhaps members can message you with their recommendations.

 

We used this resource in the past:

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

 

We also sought out the help of doctors who are affiliated with ILADS. While I am not aware of ILADS maintaining a registry of doctors, I think you will find the major LLMD's have exhibited at ILADS conferences in the past, and you can see some snippets of their presentations here: http://www.ilads.org/media/videohome.php

Edited September 4, 2013 by msimon3

[LindaMW]

Sorry I put our location in the title but it shows up small.

 

We are in Pittsburgh, PA.

[LNN]

You can go to http://lymenet.org/ and join their flash discussions (on the left of the screen). Then go to the section "Seeking a Doctor" and people can offer suggestions for your area.

 

In the meantime, for the fatigue, you can have his thyroid and cortisol levels checked as well as his B12 and zinc levels - that would be covered by insurance. Sublingual methylB12 and CoQ10 have both helped my daughter with fatigue issues, as has addressing her methylation issues. Zinc really helped my son's brain fog and phopshatidylserine (sold as PS100 on amazon) has helped with focus.

 

FWIW - my DD had similar "maybe but not slam dunk" Igenex labs. We were already treating my son for lyme (he had much clearer labs pointing to lyme than she did) so our LLMD put my DD on 6 months of bactrim + zith. She improved in some symptoms but not in fatigue. When I discovered methylation and we started treating her specific genetic issues, that's when we were finally able to get her energy levels back up this summer. (sublingual methylB12 and CoQ10 were the supps that helped her the most in terms of energy).

[pr40]

I usually mention diet so I'll add that to the mix. People that have autoimmune issues tend to benefit from a selective diet as a part of treatment. And I mean that diet complements the treatments suggested above.