Need an LLMD from NYC

Hi, guys.

I'm looking for an LLMD in NYC, can anyone recommend one? I've been hearing of a Dr. R in the forums, if anyone would send pm me details, that would be great.

Basically I've been having paresthesias around my periorbital area for a long time now, since September of 2015. I've also noticed that the left side of my face has slightly drooped and if I'm not paranoid or anything, it's weakening, but very gradually. I wasn't able to go to the doctor immediately because I didn't deem it that big of a deal during those times. I first went to an opthalmologist around October and everything was normal with my eyes. The first time I went to a neurologist was around January of this year. I've had many blood tests done in February from my neurologist and everything was normal - Myasthenia, etc. except for one thing which was the Lyme test which came up as equivocal and I came up positive for 2 out of 10 IgG and 1 IgM, but not enough to diagnose me as having Lyme. I also had an MRI done around my orbits to rule out MS - everything was normal. My neurologist said I don't have Lyme. And I agreed with that. He treated me for trigeminal neuralgia with oxcarbazepine which didn't help so I stopped taking it cause it only made me dizzy.

However it's been almost 8 months now and I still have the paresthesias and it's worsening - it's on the middle of my forehead now, I still think my left side of the face is slightly drooping and it's really difficult to keep my eyes open for a while to just hold a normal conversation. My eyesight has also become very blurry.

Around March of 2016 I couldn't get it out of my head that perhaps I still have Lyme disease. I thought about everything - stroke, tumor, Bell's palsy, etc. But I just needed confirmation that it wasn't Lyme. I went to my PCP who ran another blood test for Lyme but in all honesty I do not think he knew what he was doing (was Googling diagnostic tests during my appointment with him and using inaccurate sites like about.com) and seemed to have only ordered an IgM test and said I did not have Lyme.

I had the Lyme retested because I remember during the summer of last year we went on a road trip - Lake George, Rochester, Canada - and at one point we went on some hiking area and also I went to an interview in Ohio for like a day.

I need an opinion from a good LLMD rule Lyme out (or in) out of the way, because it's really become very difficult living with this. I'm in my 20's and I was healthy and in great condition until only one day when all my symptoms appeared. My parents and my PCP (essentially also my dad's PCP) think I'm being hypochondriac, but what I'm feeling is real. It's really hard to deal with this when I don't even really feel the support of my parents on this.

If it does turn out to be Lyme disease, does anyone know what kind of treatment would be used?

I do not recall having had a rash, experience any joint pain or any weakness, nor fever.
It's essentially just the paresthesias, very tired eyelids, blurry eyes, and unilateral weakness of my face.

Thanks, guys.

Oh - I see you do have your email option enabled...great!

Hey, cd3764. My bands were IgG - 41 KD and 66KD; IgM - 23 KD

Band 23 is specific for lyme...

HtoH welcome and I am so sorry you had to find us. But, when I found this place I was so elated! Finally I had someone to talk to and some valid, true answers.

Chapelle is a great source of personal information and I definitely would listen to her recommendation first.

If you want other options here they are and I have no personal information about them.

You can email the Tick-Borne Disease Alliance at [email protected] for LLMD referrals and you can go to tbdalliance.org to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month per email address. You have to register first. Here is the link:
module.lymediseaseassociation.org/referral/LogIn.php?setcookie=yes

ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And finally here is a resource I also know nothing about.

/sites.google.com/site/lymedoctors/new-york

Best of luck and I hope you stay in touch and let us know how you are doing.

Bump. Anyone?

I will help you by bumping it again this evening.

I am almost sure I gave you the info - but I may not have as I lose track of who is who sometimes! did we email eachother yet??

HtoH good luck on the insurance search. Far and few between.

hi there, are you sure?? Bc i went thru my emails and I replied to everyone - I looked up your email address and it doesn't show up in any of my messages? yes, sarah and I both go to the same Dr - she hasn't been on the forum in a while. Please do email me again - I am here to help. And to answer your question, yes, unfortunately, most of the good lyme drs don't take insurance. I have been trying to find one for 3 years just for future reference for others, with no luck.