LymeNet Flash: Looking for LLMD in the NYC and Long Island area

This is topic Looking for LLMD in the NYC and Long Island area in forum Seeking a Doctor at LymeNet Flash.

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Posted by ancko (Member # 50561) on :

I am looking for a LLMD in NYC area or surrounding 50 mile radius. I live in Brooklyn right now without a car.

I was diagnosed with a lyme co-infection in 2009 when I was 19. I was on a PICC line for 6 weeks and was symptom free after the end of my treatment. in 2011, I started to have debilitating pelvic pain and leg pain. Then in early 2017, I started to have nerve pain in my feet and numbness in my hands. I never thought it was Lyme. I recently went to an ILAD doctor to be pro-active about a tick bite in Cape Cod, MA and he told me that I am not fully recovered and all of my nerve pain/muscular pain is because I was not properly treated for Lyme in 2009. So now, I want to work with someone who will help me finally resolve this.

Thanks for your help

Posted by hopingandpraying (Member # 9256) on :

Welcome to Lymenet! PM sent for CT.

You needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Unfortunately, LLMDs are far and few between,so you need to go where they are. At least half of all Lyme patients travel out-of-state for proper care.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/NewYorkLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):
http://www.nyclymesupport.org/

*NOTE: Another Lymenet poster provided the following important information about the NYC Lyme Support Group:

"I strongly urge you to go to the NYC Lyme Group ASAP, as they are very educated on the various local doctors so they can help you to figure out the best doctor for your situation, and suggest an alternative if that doctor is very booked up.

Also, they are very knowledgeable about treatment, etc. Not to mention supportive of you going through the process!! Which is very important, needless to say."

http://whatislyme.com/websites-and-support-groups-by-state/

www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Read the books written by the top LLMD, Dr. H titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.

Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posted by Tincup (Member # 5829) on :

You can also go to www.MarylandLyme.org and take a look at the menu on your left where it says "DOCTOR REFERRALS".

That should help you find someone. Good luck!