posted
We're looking for a doctor anywhere in in the New York City area. We have the name of one doctor who was recommended by ILADS, but aren't sure how to find out more about him. Any advice is appreciated.
Thank you!
Posts: 28 | From NY | Registered: Feb 2016
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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.
Unfortunately, LLMDs are far and few between. You need to go where they are.
In order to find a good LLMD, you need to get personal references. An ILADS referral does not mean they are good ones.
You can write a new post in "Seeking a Doctor" and title it, "Need Feedback on Dr. _ (last name initial only) in _ (state, not city/town per Lymenet rules. People will send you information through Private Messages (PMs).
**Please read this post regarding contacting ILADS which was written by a very knowledgeable poster on Lymenet:
"Just want to warn you that ILADS knows nothing about the doctors whose names they give out. They will give out the name of any doctor who wants his or her name given out.
It doesn't mean the doctor is good or even that the doctor believes in chronic Lyme or believes that a person can have Lyme and have a negative Lyme test. It is simply a referral service operated by ILADS. They treat all doctors equally.
So, this is NOT a good way to get a doctor's name. Many have gotten lousy doctors this way and come on this board and complained about it. I have heard that ILADS is now aware of the problem, but they don't know what to do about it.
So, you need to get input from other Lyme patients and Lyme support groups about any doctor who is recommended by ILADS. You can post in "Seeking a Doctor" forum using just the first letter of the doc's last name and the state.
Or, you can call all the Lyme support groups near you. See Support Groups on the left side of the Lymenet page.
When you contact the support groups, ask them what doctors they recommend and who is having success curing patients.
You must do a lot of research before going to a Lyme doctor. No sense learning the hard way. Don't want you to waste your time and money.
New folks often don't know that they need to do a lot of work up front before picking their first Lyme doctor. So, they often pick a lousy first Lyme doctor.
We can help you avoid such a mistake."
Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I don't recommend ANY of the lyme doctors in New York City. And, others on LymeNet feel the same way.
Just know that ILADS does NOT recommend any doctors. Instead, they operate a doctor referral service. Any doctor who wants to use it can use it by taking a short ILADS lyme course. Then, his name will be added to the ILADS list of doctors.
Then, when folks write to ILADs for doctors' names, ILADS will send out the names of the doctors closest to the requestor.
So, when you get a doctor's name from ILADS, all it means is that that doctor signed up with ILADS. ILADS knows NOTHING about the doctor. The doctor may have never treated any person for lyme disease. The doctor may not believe in chronic lyme disease. etc etc.
So, I hope you can see that this is a service that doctors like to take advantage of because it can send new patients their way. It means nothing at all about the doctor.
You MUST get patient reports from people who have gone to that doctor.
To get patient feedback, you can post the first initial of the doctor's last name and the state the doctor is in (not the city). So, you can say "Need info on Dr. B in New York" for example.
Start a new post and do this. We who have been around for a while will know who you are talking about and we will send you info on that doctor.
But, as I say, there is nobody in NYC that I would recommend. It is best to be willing to travel to get good lyme treatment. At least half of all patients go out of state for good care, and many have to fly to see their doctors.
So, just know that GOOD lyme doctors are few and far between. Decide what states you would be willing to travel to in order to get good care.
The best doctors often are not taking new patients or have a 6 month or 1 year wait to get in.
If you are willing to travel to the D.C. area once every 3 months, you can get in quickly with the doctor I recommend. He will do telephone appointments with you the other months. So, the traveling is infrequent. People from New York, Canada, Florida, Texas, etc. are going to him and are very happy with him.
Let me know if you want the name.
And, if you want to write to me privately and give me the name of the NYC doctor you are considering, I will tell you what I know about him. I have collected a lot of patient reports on lyme docs on the east coast. Just click on the envelope icon above my post to send me a private message.
p.s., hopingandpraying is quoting me above regarding getting doctors' names from ILADS and how to go about getting info on doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
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