This is topic Seeking Doctor, Long Island NY in forum Seeking a Doctor at LymeNet Flash.


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Posted by NYgirl8161 (Member # 52136) on :
 
I have had 3 lyme tests in 2 yrs and all came back neg. I have every symptom now of chronic lyme and would like to see a doctor that specializes in Lyme.
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Welcome to lymenet NYgirl8161

Could you please get a copy of your previous Lyme test results? Very important. Could save you money for future specialized testing. Many LLMD's will diagnosis you on certain reactive bands from your past test results,

Many LLMD's don't participate with insurances companies. Here's why;
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

You need to get your finances in order as your 1st visit with LLMD will be the most costliest, appointments can last up to 3 hours. Be sure to bring results of all testing done, all procedures, all providers, all medications, all symptoms, diet. Write down everything during your appointment in a journal so you can refer back to it.

Connect with your local Lyme support group. Members have first-hand experience and feed-back on your area's LLMD's. Any referrals for LLMD's should be throughly researched. You can google for patient reviews. Here is your local Lyme support group;;
https://m.facebook.com/Lilalongislandlymeassociation/about/

You can request a LLMD through ILADS (International Lyme and Associated Disease) here;
https://www.ilads.org/patient-care/provider-search/

You can request a LLMD through Global Lyme Alliance here;
https://globallymealliance.org/education-awareness/find-medical-professional/

These are easy e-mail formats you fill out and a return E-mail will be sent to you.

You should also watch "Lyme and Reason" to gain knowledge of the nature of Tick Borne Infections, here;
https://m.youtube.com/watch?v=YL-fBeEd6LI

You should also watch "Under Our Skin" about the struggles Lyme patients face while trying to get diagnosised and treated for Tick Borne Infections, here;
https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1&client=mv-google

There is so much to learn but LYMENET members will help you. Any questions you may have, please post in open forum and a lymenet member will answer. Be sure to utilize Lymenet's 'search' function located in the middle of the home page. There is no other website that covers all things Lyme posted by actual Lyme patient's experiences and suggestions.

I will send you a private message.
Good luck on your healing journey.
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet! PM sent for NYC.

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 NY Lyme Support Groups at:

http://whatislyme.com/lyme-in-new-york/
www.empirestatelymediseaseassociation.org

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

Link for NYC Lyme Support Group:

http://www.nyclymesupport.org/

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

Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy them used online.

View "Under Our Skin"
https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1&client=mv-google

and "Under Our Skin2: Emergence"
https://drive.google.com/open?id=1iAzRksyHfSNWBGsHcugYl9a8WQ9TnDCW
 


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