Not having much luck with other LLMDs in the area. They don't take the insurance or are booked or just don't return calls!

I have heard of her but haven't been to see her. My LLMD in NY gave me her name and telephone number back when I was looking for a doctor to do IVs for me. I decided to go with a different doctor, though, because my LLMD at the time said that she would want to do all kinds of testing again which I'd already been through (twice) so I didn't want to deal with that again. I don't really know anything else about her. I have not heard of her from anyone else, either.

--Annie

Hope you're able to find an LLMD soon. And don't expect any of them to take insurance. Very few do....too many "strings" attached to that ins money!

Also, we don't post names of drs here.

Email me if you need more help with names. I have a list for MD, but don't know any of those drs or their reputations.

I wouldn't go near the place for the treatment of LD.

Most teaching hospitals or even the Mayo, are horrible for treatment of LD.

Believe me in the long run you'll be better off financial seeing a real LLMD.

I don't understand why these drs don't take the insurance??? Makes me wonder about them...

My inclination would be to trust MGH over a doctor who doesn't take insurance?

I know that everyone here has had great success with these doctors but, as an outsider, it makes me wonder if these doctors are really the quacks? (sorry)

I have read here that one of the drs uses herbs etc.....I just can't take that method of treatment seriously.....

Maybe I'm being too traditional but.....

The ALDF is NOT the one to trust. They believe in short treatment of Lyme, that blood tests should be positive if you have Lyme (not true a lot of the time), etc. The Lyme Disease Foundation and the Lyme Disease Association are the good ones. Their founders know first hand what Lyme can do and know the truth about this disease.

The doctors who don't take insurance are the good ones. In the past there have been a few okay ones in New England who have taken insurance but they were not nearly as good as the others. They are not quacks, they are simply aware of how much insurance becomes an issue when treating Lyme and don't want to have to deal with those issues. I have now been to five different (supposed) Lyme specialists and all of them aren't great, and they don't all work for everyone, but don't let yourself suffer for longer than you need to by going to a doctor who won't believe you and will treat you insufficiently.

If you need names of doctors in New England, let me know, I have a few names.

--Annie

Thank you for your reply.

Can you email me the names of the LLMDs you know in New England?

Thanks again for your help!

They said they would do another Lyme test (our ped. had given him the WB and he had some pos. anitbodies). Turns out they didin't even give him the WB; they gave him the ELISA which is proven to produce a lot of false negatives. Thet felt this confirmed their diagnosis of "growing pains."

Well, we went to Dr. J and he felt it was Lyme and a PCR unequivocally showed the presence of the DNA of the Lyme bacteria in his blood.

I would also disagree with your theory about drs who won't take ins. Do you have any idea of the stranglehold that ins. cos. have on ALL drs? Their rates, the procedures they are allowed to recommend and perform?

LLMDs are cutting edge in terms of their understanding and treatment of LD, and it involves visits over the course of several months (at least) and many months of abx ($$$ for the ins. co.) Sorry, I used to be a group sales rep for a national health ins. co., and I can promise you it's all about their bottom line.

All that being said, we have managed to get ins. coverage for both my son's and my visits to our LLMDs, who are out of network. This all just means that these LLMDs won't file claims and have not agreed to prefixed payments and protocols. Both of our drs. have been more than willing, though, to help me build my successful cases to get reimbursement.

The "diagnosis" of the ducks my son saw in Boston would have been responsible for rendering him possibly disabled down the road. I am a traditionalist in many ways--medicine included--but I have seen too much of what influences these drs. for all the wrong reasons, and i don't trust them. If you wnat to get well, see an LLMD.

I too have names of several LLMDs that I would recommend based on referrals I was given, my experience, and others' experiences with them.

By the way, I live north of Boston and travel to southern CT to see my dr.

Many, many of us travel long hours and sometimes days to see a real LLMD. While the majority will not have an LLMD at their backdoor, and have to travel great distances to see someone who does not give the standard two weeks of antibiotics and then tell you that you are cured and now all your problems are not Lyme related but post Lyme Syndrome.

That is what Dr. Steere at Mass Gen has written in several abstracts. If you want to see him, then go. If you want to attack this disease head-on, then see a real LLMD.

Dr. Steere is tied to the M-O-N-E-Y and whatever his agenda is, it is not tied to trying to aleviate the suffering of Chronic Lyme Disease patients.

We know how he stands and he stands against us!!!

Oh, and, BTW, there are a plethera of prescriptions out there being prescribed each and every day that the main ingredient is from an herb or a plant of some kind.

You really need to start reading.

Hit that search key up under Post New Topic and use the keywords, Camp A in the Topic Only and read just why we feel the way we do about Steere. I don't believe anyone who posts here would even think about seeing him as we know his past treatment, or not, of LD patients. Bad Idea, Bad Idea!!!

One more question....does anyone know of a comprehensive list someone on the internet of the tests that can/should be done for lyme disease....so I can ask these doctors what tests they do perform and compare to this list?

To better understand the situation, read "Camp A & Camp B" that Rosemary recommended. http://flash.lymenet.org/ubb/Forum1/HTML/018709.html

Unfortunately, the prestigious medical facilities seem to be good in treating everything BUT Lyme.
I have not heard of any successful cases coming out of these big name hospitals.

My neighbor just returned from Mayo, & her husband told me "every dr we saw laughed when we said we think she has Lyme disease. They said you don't have Lyme in South Carolina."

They're believing info that is NOT correct & it's preventing too many people from getting an accurate diagnosis & treatment.

My father was MIS-diagnosed with Alzheimer's because the drs here in South Carolina were influenced by the "wrong" camp.
By the time we got the diagnosis of Neuroborreliosis (Lyme affecting the brain) in New Jersey, the disease was so far advanced, we had a multitude of problems, & he died of complications from Lyme disease.

You've been given good advice about finding treatment for Lyme.

Keep in mind that this is a very complex illness.....similar in all patients, but at the same time, different in all patients.

When you go to a dr, you are buying his services.
I recommend you be evaluated by a Lyme Literate Med Dr (LLMD) who has a lot of "satisfied customers".

You've been given advice here from the best. I'm glad you're getting the picture now!
Check this out as well:

Hopkins misses Lyme diagnosis http://flash.lymenet.org/ubb/Forum1/HTML/024548.html

She went through several iV treatments and claims she is now cured. I know she did rocephin but I also know she lost her gall bladder.

But she hasn't had any symptoms. She was originally diagnosed with MS, anxiety, etc. Then a Maine doctor decided to do Western Blot, Igenex and it was positive.

Dr. F had her fax her test results down. She said she didn't want to waste my friend's time is she didn't think she had lyme.

So, this doctor worked for my friend but she did have positive labs. If your labs are positive it might be worth going there.