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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » LLMD in PA/NJ

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Author Topic: LLMD in PA/NJ
bananasplit14
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Member # 45859

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I've been under the treatment of LLMD Dr S in NJ for the past year and a half. He was referred by a friend with Lyme who is now symptom free. However, I am not seeing much improvement at all with Dr S.

I was diagnosed with Lyme through the Igenex lab, and Dr S diagnosed me with co-infections Babesia and Bartonella based on my symptoms and responses to treatment.

Dr S does not spend much time with me in appointments and does not like to answer my questions about the disease and my treatment, so I'm looking for a new LLMD or at least a second opinion. I am located in the Philadelphia area and am looking for a LLMD in Pennsylvania or New Jersey. I am willing to travel farther if the LLMD is worth it!

I am also wondering what qualifies someone to be a LLMD. Are all LLMDs members of the ILADS? How do I know which LLMDs are considered leaders in their field? I want to be able to know that I am choosing a good LLMD and am receiving effective treatment!

Please help! Thanks!!

Posts: 4 | From Philadelphia | Registered: May 2015  |  IP: Logged | Report this post to a Moderator
TF
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See Support Groups on the left side of the page. Contact those nearby to get personal recommendations for lyme doctors.

"LLMD" is not a recognized medical specialty. So, anybody can say they treat lyme. Some doctors limit their medical practice to just lyme disease or just lyme and some related illness. That is what I call a lyme specialist. They are seeing lyme patients all day long and really develop expertise in this disease.

Lyme docs are not all members of ILADS. There is no set treatment for lyme disease, so some docs use just herbs, some use only low doses of antibiotics, some "do their own thing" and some follow the Burrascano protocol or some other protocol.

So, you need to find out ahead of time how a doctor treats. If you want the Burrascano protocol, go to a doctor who follows it. That is the protocol that got me well (meaning rid of lyme) and also 5 of my personal friends.

Ask around at a lot of support groups, websites, etc. The more you find out about the doc at the start the better.

It is difficult to pick your first lyme doctor since you don't know that much about lyme. So, many people end up switching doctors as time goes on.

Get recommendations from folks on this board. Fly the doc's name by this board. Get as much input as possible. Find out who is getting people well.

And, be willing to travel.

The best lyme docs often have long waiting lists.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Welcome to Lymenet! PM sent for PA & MD.

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 to see a LLMD by doing this.

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

Maybe they can help.

Some more resources for you (including Support Groups info):
www.lyme-aware.org/pennsylvania.html

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

The top LLMD, Dr. H, has written a new book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on www.hulu.com

[ 07-02-2015, 10:18 AM: Message edited by: hopingandpraying ]

Posts: 8983 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
TF
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To understand what good treatment looks like, read and STUDY the Burrascano Lyme Treatment Guidelines found here:

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

This document will give you an education on the diseases that you have.

Compare your doc's treatment to what is said in this document. Then, you will know how well you are being treated.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
bananasplit14
Junior Member
Member # 45859

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Wow, thank you so so much for that article TF!!! I finally got around to reading it today and it is exactly what I was looking for!

I started getting in touch with a local support group and am hoping to find a new LLMD through those connections.

In the meantime I'm just trying to hang in there...

Posts: 4 | From Philadelphia | Registered: May 2015  |  IP: Logged | Report this post to a Moderator
   

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