I am looking for an LLMD/PCP in either Nassau County (Western Long Island), New York (preferably in or near Great Neck, NY 11021, where there are hundreds of practicing physicians) or in NYC (Manhattan/Queens preferred). I tried getting a referral through ILADS but that was a bust!!
I was officially diagnosed in March 2016 with Chronic Lyme Disease but was started on antibiotics in February when I was first evaluated and bloodwork was drawn to be sent out to various labs for diagnosis. The LLMD who is currently treating me has a practice in a small town over an hour's drive north of where I live, and I have a large problem--I don't drive because of my Lyme Symptoms. I am desperately looking for a local LLMD whose office I can get to via taxi, Long Island Rail Road or Uber. I can get into Manhattan, too! I have called dozens of doctors who claim they treat Lyme disease only to find out that they only treat Acute Lyme. I have had undiagnosed and untreated Lyme symptoms that began when I was a teenager (age 13/14) and I am now in my late 40s--so undiagnosed and untreated for about 33 years. I think that qualifies as Chronic!! I have Neurologic Manifestations that are worsening with the antibiotic treatment.
Thanks for reading through this lengthy post. --LymeMom1969
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.
Btw - I know you are new to Lymenet, but 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 the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by Tincup (Member # 5829) on :
Hey there LymeMom1969,
So sorry to hear you've been ill for so long! And now transportation problems too! Ugh!
I see you are not a senior citizen, but if you are disabled from the Lyme disease you should contact the local senior centers in your area to see if they have volunteers or paid staff to take you to/from your doctors appointments.
If not, they may be able to direct you to some resources. Also, if you dial 311 on your phone anytime, 24/7, they can assist you by providing a lot of resources.
If worse comes to worse, you can go to www.MarylandLyme.org There you will see a Lyme treating Doctor Referral listing on the menu to your left.
That will give you contact information for traditional, natural and other kinds of health care providers from NY and all states that have them.
Hope you find someone to help you!
Good luck!
Posted by Musharin (Member # 48108) on :
Silly question, but, can I send a private message on this website to this person and give her an actual name ... As long as it's in the private message??
Posted by TF (Member # 14183) on :
Yes, Musharin. That is exactly how we want names given out.
Thanks for being willing to help other folks here.
Posted by TF (Member # 14183) on :
LymeMom, if you are happy with your doctor, I strongly suggest you try to solve the transporation problem rather than switch doctors.
I have been around for a long time. From what so many other patients have told me, there is nobody I would recommend in NYC and that includes Long Island.
Hopefully, you can find someone who will drive you to your doc for the right price, or the doc will do telephone appointments with you for a few months so that you don't have to drive there monthly. Or some similar solution.
If this doc is helping you, I encourage you to stay with him. Good lyme doctors are so few and far between that most people would think they died and went to heaven if their lyme doctor was just about a 1 hour drive away.
It is much harder to find a good lyme doctor than it is to find transportation to someone you like and who will treat you long-term.
At least half of all lyme patients go out of state for their lyme treatment and many have to fly. There are MANY states that have no lyme doctors at all.