Lyme Disease Support Group

I have found this on other sites also. One site you can make three queries in 30 days, and I went thru them in one day because our definition of Central NJ was different. .

I guess I am frustrated because I posted in Mid December for information on some doctors and had to use initials and to date I received one reply to my query.

I would love to have some place to go where I could ask...Has anyone dealt with Dr. Frankenburger from MyTown, NJ and what are your impressions.

I have had ONE recommendation from here, and one offer to help. I do have a friend whose husband goes to an Inf.Dis doctor for LYme and has been helped a great deal even aftr his second tick bite.

But it seems most participants on lyme forums say stay away from them and only go to LLMD....is that the case in general.

Is my assessment of the LLMD secrecy accurate or am I missing something.

Any answers addressing my query will be appreciated. I am still frustrated and confused with this and have not seen a doctor yet because of an eye injury and haven' been able to drive. for two m onths...

thanks again for any help.

Frank in NJ

Yes, sadly it is the real deal. Our Lyme doctors go against IDSA protocol. While this might not mean much to anyone who isn't in the medical profession, it means A HUGE DEAL to them.

You see, if a doctor is caught going against IDSA protocol, the insurance companies #1 don't have to pay for the treatments legally, because it's not what "the book" says to do.

In our case, "the book" is written incorrectly.

Also, insurance companies like to flag and put doctors out of business that don't do what big brother tells them to do, i.e. the IDSA.

This is why most LLMDs don't accept insurance anymore. It's just one more way to stay below the radar of big brother.

Also, LLMDs don't have their names advertised because if the insurance companies don't get them, the medical boards will. This happened just over these last several months with my own LLMD.

He was hounded by (really one person on the) med board, he had his license suspended, and then we were all lied to when it came time for his hearing. They said they reached an agreement, and no one showed up to support him.

Then, AFTER he had left the hearing, they suspended his license. He didn't even find out until the next day. It was awful. Then when it came time for the next hearing, we all got conflicting dates as to when it was.

They didn't want us there. They didn't want to media involved. They wanted to hang this doctor for --truly, doing the right thing -- which was not following IDSA guidelines.

Big brother is a lot more powerful than many of us want to believe.

If you haven't yet, please watch Under Our Skin. It's a terrific documentary, and you will be introduced to heros in the Lyme world... Doctors who are known by name, because they got "caught" treating people effectively for chronic Lyme.

The documentary is free on hulu, or it's also on Netflix.

I hope this helps you out. It's a huge deal for these docs to put their careers and livelihood on the line to treat us properly, and therefore we protect them by keeping them anonymous.

Have a great evening.

Frank