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


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Posted by halcyonheart (Member # 45590) on :
 
Hello,

For the past few years I've been seeing Dr. C in NY, since he accepted my insurance. However, last month I was informed that he was no longer going to accept it; all patients would have to pay out of pocket. Since I live on disability, I can't afford it.

Does anyone know of a LLMD in NY that will accept Medicare? Or even in a bordering state that would accept NY Medicare? I live in the Albany area, but am willing to travel several hours to get there.

Thank you so much in advance.
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet!

PM sent with some suggestions for other states. You will have to call the doctors' offices to ask if the information is current about insurance.

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/NewYorkLyme/info

Maybe they can help.

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

www.empirestatelymediseaseassociation.org

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

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/

[ 04-19-2016, 10:58 AM: Message edited by: hopingandpraying ]
 
Posted by nicolenyc (Member # 43985) on :
 
I got the same kiss off letter from dr c, not even offering... 'in three months we will stop participating with your insurance' or 'here is the name of a physician you may wish to consider' or even 'here are three months of refills while you find a new llmd'. Nothing. Just - get out now!

He really prefers famous clients and now he's actively chasing that billionaire in the UK whose whole family has lyme.

I've been reading everything about and looking into all local area llmds and it seems statistically the ones who don't take insurance charge lots of money for treatment have a better success rate. The findings seem to point to if you have $$$ you get better and more effective care.

If you are disabled and poor you must look elsewhere, so there are more 'remedies' out there than stars in the sky from light machines to Chinese herbs, pacifications to make us feel better? Maybe. Success with alternative treatment? Many say yes.

We have no definitive parameters of success because the cloud of mystery and dogma works to maintain confusion and lack of clarity which keeps people in the dark and paying out.

As far as IV treatment or any proactive llmd care without cash - forget it.

The political difficulties and super secrecies seems to root back to money. Doctors might claim persecution from the insurance and medical industry but all the while they can (and do) charge a fortune. Yet it's the patients who suffer and get told 'its out of our hands'. I don't buy it anymore.

[ 04-23-2016, 02:03 PM: Message edited by: faithful777 ]
 
Posted by Lymetoo (Member # 743) on :
 
Financial help you may not be aware of:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/23463
 
Posted by hopingandpraying (Member # 9256) on :
 
nicolenyc - The Lyme Disease United Coalition has good information for financial resources on their website:

http://www.lduc.org/lyme-disease-resources

Scroll down for financial help, etc., available from several sources.

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%.
View on www.lymetap.com

"Help For You" link here...

https://sites.google.com/site/marylandlyme/help-for-you
 


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