Need Lyme Literate Doctor on Long Island

Welcome to the forum! There have been some LLMDs on LI mentioned on this forum before:

https://www.healingwell.com/community/default.aspx?f=30&m=3870749

https://www.healingwell.com/community/default.aspx?f=30&m=3812560

And several other threads, if you use the search bar and try "LLMD Long Island." Those threads also contain tips for contacting ILADS for LLMD recommendations.

If you are looking to do non-pharmaceutical treatment, then sometimes a Google Maps "search nearby" search for the word "holistic" can get you some leads for centers with herbalists or naturopaths, and "functional medicine" will find you some good folks, too. Traditional Chinese medicine is another route that people take. Many practitioners will not advertise that they treat Lyme (see below) so you should call and ask about their experiences and approaches. I have to assume that in your area there will be many people with experience, but they are unlikely to be in the mainstream MD world.

Note that we don't use the full names of doctors on this site because treating Lyme with long-term antibiotics (which many believe is necessary) has resulted in many LLMDs losing their licenses, so we use initials to protect them in case state licensing boards might be investigating.

This is one of the reasons for the obnoxious phenomenon you noticed, in which LLMDs cannot accept insurance and charge a lot of money. They often need to have a private practice and need to be able to use independent labs that have greater accuracy for Lyme and other tests (which some insurance and most hospitals do not allow) which means lots of extra expenses (staff, insurance, infrastructure, etc.). I have found a few LLMDs who do take insurance, but I definitely find many more who do not. The ones who do take insurance often are not able to order the tests they wish they could order, and they are not able to spend more than 15 minutes with patients per appointment. I saw an independent LLMD who charges $225 for a half hour, which is by far the least expensive I found in my area. I'm not saying don't bother hoping for an affordable and helpful LLMD, just that it's hard to find....

Of course, I totally share your frustration with the incredibly high fees! It's very upsetting. I have excellent insurance, and it just hasn't mattered at all except to cover a few MRIs. Almost all of my Lyme care has been out-of-pocket, to the tune of many thousands per year.

And sadly, yes, some folks are taking advantage of the desperation of the chronically ill - some seem to swindle us intentionally, but most just seem to be well-meaning but clueless. These are complex illnesses, and every case is very different, so even the best doctors aren't a sure bet. There are as many different treatment plans as there are patients!

Finding a therapist is a great idea. Maybe your local Lyme support group would have some recommendations?

And finally, thank you for helping your child! It's so challenging (even devastating) to have tick-borne illnesses, and it means the world when someone helps in a meaningful way. She's lucky to have a supportive family!

Hi DK42,

So sorry about your daughter and how hard it is to find a LLMD on Long Island (I lived on Long Island most of my life and moved over 10 years ago to Vermont). I remember how frustrated I was when I was sick because of all the doctors I saw were not lyme literate (with the exception of one doctor in Plainview who sent my blood to IgeneX) and prescribed Doxy which didn't help me but made me more sick (everyone reacts differently).

In any case, I am over 14 years healed. I heard of a book from another forum called Beating Lyme Disease by Dr. David Jernigan which I bought and followed the protocol in the book which worked for me (took about 1 year). I went undiagnosed for 5 years so I became chronic. Just because this protocol worked for me (and several other people I know) doesn't mean it will work for everyone.

Below is a free chapter from his book (if you want to buy his book I suggest calling the Biologix Center, formerly Hansa Center). The book has so much information in it!

https://conniestrasheim.org/blog/2017/5/2/dr-david-jernigan-shares-a-free-chapter-from-new-paradigms-in-lyme-disease-treatment

http://bit.ly/2pmykjh

I hope this helps a bit,
Denise