This is topic Seeking LLMD in NY/NJ/CT in forum Seeking a Doctor at LymeNet Flash.


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Posted by purplepeach (Member # 46495) on :
 
Hi everyone -
I am seeking a LLMD in the NY/NJ/CT area. Upstate NY is fine also. Thanks so much

ETA: My situation is that I have been dx with Lyme though a CDC positive IgM. I also had a spinal tap done, which showed 3 bands (one Lyme specific - 23), but not enough to be "CDC positive". I also have a very low CD57 - 24.

The best offer I have gotten from docs in terms of treatmnent is one month IV Doxy. I fear this will not be enough treatment to cure my neuro lyme. Main symptoms are fatigues, inability to concentrate, brain fog, anxiety, depression. Worsening over past few years

[ 08-19-2015, 01:33 PM: Message edited by: purplepeach ]
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet! PM sent for CT & upstate NY.

You need 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. You need to go where they are.

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):
www.lyme-aware.org/new-york.html
www.empirestatelymediseaseassociation.org

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

Read the book written by Dr. H, the top Lyme-literate doctor, entitled, "Why Can't I Get Better?". It is 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 www.hulu.com
 


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