Lyme Disease Community
LLMD in New York City / State for UK Patient
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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LLMD in New York City / State for UK Patient

Hi all,

I’ve been reading this forum for the last few years and It’s been a fantastic source of info as well as support on coping with this disease and it’s many complexities - thanks to everyone so far who has helped me along the way.

I’m currently living in London, UK and currently exploring ILADS, LLMDs in the US. I’m currently seeing a Dr in the UK from a Hospital that specialises in the Treatment of Lyme, and she is very aware of the latest treatments as she spent a year working in the US, shadowing leading LLMDs.

Due to changes in my ability to continue treatment over here with suitable specialist (they’re only a handful in the UK), I’m looking to the US.

I’m looking at the New York area as it’s closer to the UK in terms of flights as well as I know people who live in New York City which helps with accommodation.

Does anyone know of any LLMDs who practice ILADS methods in the New York state / city region? It would be particularly useful if they are used to accommodating long distance patients in their treatments plans, consultations etc.

Many thanks and I look forward to hearing from you.

Adey



----Tests ------
GreatPlans OAT 07/10/2011 - Awaiting Interpretation
Doctors Data Comprehensive Stool Analysis 19/10/2011  - Low Secretary IgA
InfectoLabs / BCA Clinic 17/08/2011 - Ellispot - Positive, Weak Borderline | CD 57 - 21 (100 - 300)
Western Blot - 29/09/2009 - Igenex Igm - 31 IND, 34+, 41+, 58+ | Igenex Igg - 31 IND, 34 IND, 39 IND, 41++, 58++,
---Treatment----
10/2009 - 10/2010 - Cefuroxime,Tinadazole, Azithromycin, Zithromax, Doxycilline + Rifampicinin
10/2010 - 10/2011 - Klindhar methods to treat Mercury, Mycoplasma, Toxoplasma, Herpes, Ascaris, Chickenpox
----Symptoms ---
Chronically reduced cognition, constant head pressure / swelling, poor memory, depersonalisation, tender scalp, speech problems, limb weakness / numbness, fatigue, spirochete floaters in vision, nausea
Related Discussions
  • Chronic Lyme (21 replies):
    Is it a doctors choice not to believe in chronic lyme......[more]
7 Comments Post a Comment
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Contact Danial Cameron in Mount Kisco or Rania Rifai Loewenberg in Katonah, NY
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Welcome.  I can't recommend any specific MDs in the NYC area (I am across the country in California), but if you search online for --

LLMD new york city

-- you will find many links to message boards and organizations that may have referral functions.  

NYC is a notoriously expensive place for everything including medical care, so you may want to also look nearby such as in Connecticut, which is an hour's train ride from NYC.

I would also suggest looking at the ILADS [dot] org website to see if you can find mention of members there and then search for them online to see what kind of comments you may find.

Columbia University in NYC (on the Upper West Side of Manhattan) has a renowned Lyme research center, but I am not clear on whether they also have a clinic, but it would be worth looking into.

Sometimes it takes a month or more to get an initial appointment with an LLMD because they are in such demand, so making your choice and booking an appointment well before you plan to travel is advisable.

I have also just searched online for --

llmd europe

-- and found some interesting leads.  It may be an easier trip for you for follow up appointments to hop the Eurostar than British Air.  Also your LLMD in the US might be concerned that you are so far away if problems pop up during treatment and you have no established relationship with a copacetic MD in UK.  

All good wishes to you, and if you would, let us know how you proceed --
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Thanks for the recommendations.  I don't know either of them, but have read about Cameron and have a favorable impression; have not read about the other doc.
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You should google both the Lymes and the results. I'm sorry, I don't know anyone in New York! But I have learned more about test results I've had by googling them. Good luck and God bless!
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There is a lot going on underground in NY because it is so controversial. The insurances don't pay for much so your suggestion to got to Conn. is brilliant.
It is good that the Lyme Drs do all speak with each other and pass along info as they learn but the aren't great at communicating with the public. Cameron likes the limelight so he's an exception but he plays it a bit safe. He has to.
I am impressed with all the help and knowledge you are sharing. It is a great deed you are doing.
I am convinced many of these bugs were created in laboratories and that's why they are so unrelenting - not naturally occurring.
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Another passing thought ... not sure if you are aware, but US medical doctors (MDs = physicians) are licensed by the state where they practice (New York, Connecticut, etc.), not by a national governing body.

That is why it is easier to find a Lyme specialist in some states than others, because the medical boards in some states (like Texas) are controlled by Lyme deniers, and they make it difficult to impossible for a broadminded MD to treat Lyme as s/he sees fit.

Someone remind me who the well-known LLMDs are who have recently been run out of practice in which states ... I don't keep a running tally in my head, but it might be important to adey124 in deciding where to look for help.
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You comment above:  "I am convinced many of these bugs were created in laboratories and that's why they are so unrelenting - not naturally occurring."

I am inclined to side more with Napoleon:  "Never ascribe to malice that which is adequately explained by incompetence."  Meaning the incompetence of the Lyme-denying MDs holed up at the IDSA.
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