This is topic CT - In need of LLMD in forum Seeking a Doctor at LymeNet Flash.


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Posted by SarahMG (Member # 49173) on :
 
Hi to All,

I am in need of a LLMD. I am frequently asked if I have Lyme by doctors, but when I ask to be tested based upon my symptoms (I have every sign listed...), they all get very defensive and refuse to test.

One outright called me a hypochondriac because I was bit by three ticks at once and actually had a rash. She refused to treat me, and put in my notes I was paranoid and creating symptoms.

This has gone on long enough that my heart is starting to beat irregularly, I'm losing my memory, and my hands/feet tingle and hurt constantly.

Not to mention the near constant migraines.

Thanks for any help available.

[ 11-04-2016, 10:24 PM: Message edited by: SarahMG ]
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet! PM sent for CT.

Many have experienced the nastiness of ignorant practitioners just as you have, so you definitely are not alone! The bull's-eye rash is definitive for Lyme.

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

LLMDs are far and few between, unfortunately. You need to go where they are.

Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "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/ConnecticutLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/

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

The top LLMD, Dr.H, has written a 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 https://www.viewster.com/movie/1193-15367-000/under-our-skin/

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 t9im (Member # 25489) on :
 
Hi Sarah:

You can order the Western Blot test kit from Igenex but will need a MD to sign the paperwork (it is treated like a lab test which requires a licensed doctor signature) and you can then have the test done.

It will show if there are any reactive bands which indicates exposure only. Also if you don't have any reactive bands that doesn't mean you don't have it.
 


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