Just a BIG thank you to everyone on this board for the incredible information and help on this awful condition.
Can you please recommend who is the best/right doctors / LLMD to see within NYC (Manhattan)? I saw Dr G in Central NJ but traveling to her is very difficult and I wasn't blown away with her plan on getting me well unless I misjudged. Not to mention the office was very difficult in dealing with in general and for follow-ups. If I had to go to NJ thought I would do it, just living here in the city would be much easier to see someone locally.
Also, if there are any support groups in Manhattan that meet especially for 20-40 age range that would be incredibly helpful too.
I've been dealing with diagnosed chronic lyme since 2004 and it has been a huge roller coaster despite on/off "treatment". I am now in my 30s and have a career in NYC since I've continued to push ahead with my life (god only knows how) despite my awful and debilitating symptoms, but within the last 7 months, things have gotten extremely bad and I really need to be aggressive with treatment. Quality of life has been so badly impacted. I had an ADR recently to a medicine which has either extremely aggravated the Lyme or compounded with it and life has been just unbearable.
Thank you so much
Posts: 85 | From United States | Registered: Jun 2015
| IP: Logged |
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease and its complex treatment!
Unfortunately, LLMDs are far and few between. 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":
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click on the pencil/paper icon, make your changes, then click "Edit post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
Thanks for the reply but unfortunately CT would be very difficult transportation wise. There has to be some folks in NYC or NJ that could help or others see? If anyone could PM me with some names that would be extremely helpful!
Posts: 85 | From United States | Registered: Jun 2015
| IP: Logged |
posted
Does anyone know of LLMDs in NY, NJ, PA who follow Dr B's protocol? I keep hearing his protocol is the one that has helped many late stage lyme people. Any ideas? PM would be helpful. I've gotten some names now and trying to decide who to go to for aggressive treatment.
Posts: 85 | From United States | Registered: Jun 2015
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I don't think there are any good lyme doctors in NYC--none that I know of that follow Burrascano either.
The 2 good lyme docs in NY state that follow Burrascano have such long wait lists that it will be a year before you can see the doctor.
There is nobody in NJ that I recommend except perhaps one doctor and I don't know if she follows Burrascano or not. NJ has some well known lyme doctors but the reports I have on them are horrible!
If you want aggressive Burrascano type treatment, I know a doctor in Maryland who could help you and you can get in with him in a few days. PM me if you want the name.
He will do telephone or Skype appointments after the first in-person appointment.
There are not that many U.S. doctors who will stick their neck out anymore and give Burrascano type treatment.
Since you have been sick so long, you really should consider this doctor. If you want, you can take a train from NYC to D.C. and then the subway to the doctor. That saves you the stress of the drive. You could hopefully do the trip in one day that way.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, I suggest you change the title of your thread now that you are looking for a Burrascano type doctor in NY, NJ, or PA.
That's a lot different from what the current title says.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Thanks - I wish I could stay within NYC for convenience, but I'm realizing I may have to go out of state. If you could PM me with more information, that would be really helpful. Is the Maryland one associated with Johns Hopkins? Curious to hear feedback on the NJ doctor you mentioned as well.
Thanks a lot!
Posts: 85 | From United States | Registered: Jun 2015
| IP: Logged |
posted
Thanks - I wish I could stay within NYC for convenience, but I'm realizing I may have to go out of state. If you could PM me with more information, that would be really helpful. Is the Maryland one associated with Johns Hopkins? Curious to hear feedback on the NJ doctor you mentioned as well.
Thanks a lot!
Posts: 85 | From United States | Registered: Jun 2015
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
There are no LLMD's in NYC or NJ that are good especially for advanced cases, as TF stated. And any good LLMD will put you on what seems to be a overwhelming protocol. There's no quick fix to this condition. It will take time, lots of it, to see improvement and lot of it is trial and error to see how your body responds.
The longer you have left this condition to linger the harder the chances are of recovering. In NY State Dr. H is one of the best. There are a few good ones in Maryland, as TF stated.
The good ones are few and far between and many of us have travelled long distances to get treatment. Unfortunately, that's just how the situation is currently.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic