Which dr. For PANS and Lyme?

[landamom]

Hello all,

We have an appointment set up to see Dr. J, an LLMD in CT but it isn't until October. We are looking to have a phone consult with someone who has experience with PANS and also Lyme as we believe (based on a CDC positive western blot) that that is the trigger for our DDs issues.

 

I was wondering if anyone has experience with either Dr. T. in NJ or Dr. K in Chicago? We have narrowed it to those two at this point because they both do phone consults and currently there is no one I can find here in NC.

 

Thanks in advance for your help!

[PowPow]

have you tried a local llmd? some of are very receptive to pans-lyme and also helpful treating.

[landamom]

There are very few LLMDs here that will see children. We've been seeing pretty much the only one and it has been a terrible experience, so we need to look elsewhere.

[cobbiemommy]

I don't think Dr. K does much with the Lyme, at least now when we saw him. I would try the other doc you mentioned.

[ptcgirl]

Sometimes Dr. J has cancellations. I know for our first appt I was able to get us in at the last minute (I believe the day before or two days before -- it was a while ago so I don't remember). You could try calling frequently to see if there is a possibility of that. Good luck!!! Seeing Dr. J is worth the wait. I can't imagine someone more knowledgeable. We did see a LLMD in Asheville who was really good, however. He was knowledgeable about Lyme and PANDAS/PANS. PM me if you want his name. : )

[landamom]

Hi ptcgirl! Thanks for the info about Dr. J. I know he is pretty much the best LLMD for kids in the country. Do you have any idea if he believes in the PANS aspect of it? Thanks!

[philamom]

Yes, he addresses Pans. Not really helpful with detox though- FYI.

 

Waiting for train to see him now. It's running hour late

[landamom]

philamom - ugh, I'm so sorry you got stuck with the trains... how frustrating! I hope you make it and everything goes well. Thanks for responding. Yep, I had gotten the tip regarding detox - very helpful to know!

[ptcgirl]

Hi ptcgirl! Thanks for the info about Dr. J. I know he is pretty much the best LLMD for kids in the country. Do you have any idea if he believes in the PANS aspect of it? Thanks!

Yes, he is quite literate on PANS. He and Dr B seem to have a good working relationship too.

[tpotter]

Dr. T. doesn't do much with Lyme, either. Dr. B. and Dr. J. work together (Dr. B. on PANDAS and immune deficiency, and Dr. J. on Lyme. But, Dr. B. will also take awhile to get into.

 

Detox is very important, so make sure you do it regularly. We have been using bentonite clay (1 tsp daily...we lowered the dose to make sure we could take it daily), and sometmes we use charcoal (if we're traveling, we tend to use that, instead, for obvious reasons.) Other people use other detox, and it is just important what works for you.

[bsimon3]

landamom, just PMed you.