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


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Posted by TickMenace (Member # 51811) on :
 
Hey guys. Seeking a doctor in NYC who is a LLMD for late stage.

Can anyone suggest a few options? Prefer a private message with great doc rather than simply off the ILADs database.

Suspect I have had Lyme + Co-infection symptoms for 10 years. These became more severe and widespread in symptoms the last 1 year. Severe in last three months. Recent testing confirms likely neurolyme + positive co-infections.

I have an LLMD Neurologist in NYC, but he wants another LLMD to serve as the point person for regular treatment protocols such as antiobiotics, supplements and to go that route before we attempt IVIG therapy.

So far I've tested positive for antibodies:

Anaplasma, aka HGA
Reactive/Exposure to 9 bands of Lyme

I did "negative" on the two-tier CDC Western Blot tests and I was "negative" on the C6, so far.

I did test "abnormal" for two neurological tests commonly seen in late stage neurborelliosis and other nervous system disorders:

Tilt table test - abnormal
EKG nerve function - abnormal
Awaiting leg biopsy results

The failure of the two tests above along with tick-born Anaplasma infection suggests neurolyme with demylinating neuropathy.

I'm responding very well to a tetracycline & a azithromycin combination therapy (best I have felt in years 3 wks in), low dose, and am 90% sure I had herx reactions the first few weeks, which further confirms an infectious disease such as Lyme.

I'm seeking an LLMD in NYC who can serve as my front-line doctor to assist my Neurologist and for further co-infection testing that we may have missed, he is not well versed in co-infections.

Anyone reading this who would like a Neurolyme MD, can message me and I'll pass along his info.

Thank you and I'm so happy to finally have clues to my 10 years of strange and increasing symptoms.
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Hi TickMeace - Welcome to Lymenet.

We do not recommend doctors. We simply provide more options for patients to get the best treatment possible. A Doctor/ Patient relationship is unique. One must choose carefully. I suggest you connect with your area's Lyme Support Group to get patient feedback from your area's LLMD'S successes;

https://rawlsmd.com/lyme-support/united-states/new-york/nyc-lyme-disease-support-group

A good LLMD will follow basic principles according to the Lyme Diagnostic Guide;

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

You can request a LLMD through ILADS 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/

There are really GREAT LLMD'S in NYC and NYState. Most don't take take insurance, out-of-pocket costs are excessive. Here's why;

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/25539?

We are so glad you finally have answers!
I will send you a pm. Good luck to you.
 
Posted by Rumigirl (Member # 15091) on :
 
There is a NYC Lyme Support Group that meets monthly. They are very knowledgeable and supportive: NYC Lyme Support Group

I would strongly suggest going there and discussing your situation with members. There is also an online forum for people who have gone to the group once.

NY state also has an online forum, click on the Support Groups on the upper left.

It is good that you are starting on the path to improve. We all need support as we go along.
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet!

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. They would know better about NY.

Some more resources for you (including Support Groups info):
http://nyclymesupport.org/

http://whatislyme.com/lyme-in-new-york/

www.empirestatelymediseaseassociation.org

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

Read the books written by Dr. H, the top LLMD 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 it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8
 


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