The local university of medicine recommended 2 rheumatologists in New Haven, CT. Doctor S. and Doctor McL.

Those who "claim" to specialize in lyme are not going to do long term abx as an ILADS member will. Read Camp A and Camp B article in "Links for new Members" then you will understand.
http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

I now have to travel out of state to get care, but it's so worth it for me. Finally, I am being taken care of by the right dr.

Over 19 years I went to Infectious disease drs., rheumatologists, endocrinologists, pain specialists, orthopedics, neurologists, cardiologists, nerve specialists, dentists, endodontists, gastroenterologists, and much more.

No one EVER suggested Lyme or would even consider such a cause for all of my ailments. Their final diagnosis was always psychiatric illness because of their ignorance, fear and/or lack of concern.

If you know that you have lyme don't waste your time and money unless you go to an LLMD (preferrably recommended by this board).

In my opinion, any Dr. who is willing to treat aggressively for Lyme and educates himself about the disease and is willing to listen to his patient is capable of treating for Lyme Disease.

There is NO CURE for Lyme Disease yet. What more does an LLMD know than any other Dr. who treats agressively for Lyme about this disease? It's like some elite cligue that has a market on Lyme Disease. In some cases this disease is a real cash cow for the elite few who are called Lyme Literate.

If you find a good MD who is willing to work with you and try different protocols, and you like him/her, then work with that person. I don't think anyone should tell you who to see or who not to see. YOU have to be comfortable with the Dr. you choose, whether he/she be called an LLMD or not by this board. What gives Lymenet the power to decide who is or isn't Lyme Literate.

Any MD is "allowed" to treat a patient for Lyme Disease. Do your homework and find an MD that is willing to work with you. You need to feel comfortable with the person and you don't need to be stressed out by MDs who don't take insurance or can only see you every six weeks or one that you have to travel 7,000 miles to see. There are plenty of good MDs out there who will work with you, on your terms and will listen to your research about Lyme. Educate yourself as much as you can about Lyme. This board is a good source for that.

Good luck.

The specialists I saw were rheumatologists at a famous Boston Hospital. They did not help me at all. Even worse they questioned whether I had Lyme, told me that if my medication wasn't working I needed to stop taking it, were rude & condescending and sent me a big bill. They were not interested in any symptoms other than swollen joints. The visit was a joke.

I subsequently saw an LLMD, Dr D. who asked me all the right questions and totally understood what I've been going through. He changed my medication to high dose Tetracycline (750mgs bid). Within a few days my brain fog lifted and I began to see real improvement. The improvement is continuing.

After my MD heard about the vastly different treatment I received and saw my improvement she began to understand that Lyme needs higher doses of antibiotics than what she was taught. It is possible that she will treat the next Lyme case differently. She doesn't see many Lyme cases though. Unless an MD sees lots of them and is open minded they'll probably be clueless.

If a MD treated lots of Lyme patients and knew what to do then they would be a Lyme Literate Medical Doctor, (LLMD).

My advice is find an LLMD quick, it takes time to get an appointment. In the meantime keep taking the Doxy & try to get more from your Doctor. If necessary go to another Dr. to get some more. Don't stop, here's why:

After my 28 "Doxy Cure" I got so sick within two days of stopping it that it took 3 months to get back to where I was before the 2 day break. Fortunately my MD kept giving me refills after I begged, brought her ILADS articles and insisted on continuing treatment.

Good luck.

h&s

I agree.

dq

Neither a conventional rheumatologist, nor a conventional "infect.dis." doc see, as there is a good chance that the snowball will survive 2 hours in the oven at 500 deg.F. before you'll obtain appropriate, and timely testing and treatment as defined by those with expertise in refractory lyme disease, and/or other tick-borne infections.

dq

[This message has been edited by DiffyQue (edited 07 January 2005).]

Oh, and DiffyQue, very good assessment. You know, since this person has been here so long and has posted so much, I can't help but wonder if this may be someone who participated in putting together that "study?"

Christelleny, not all doctors are created equal, even within a specialty. For that reason, I say that you "may" find an ID or rheumy that thinks outside the box, one that knows to treat a chronic, uncurable illness in just that manner, i.e. keep treating.

I have seen a few sites on the internet from rheumys who advocate the use of long term antibiotics in arthritic conditions because their beliefs are that the cause of the arthritis is due to firmly entrenched bacteria. They have seen improvement in some of their patients and have built their beliefs on their results. I think they are probably the exception, not the rule.

As for ID doctors, there are a few very rare ones who also believe in providing real, long-term treatment. I was fortunate enough to have found one years ago when I was improperly treated by a regular MD. The MD only gave me a short course of antibiotics and at a low dose then stopped desite the fact they acknowledged I still had meningitis. My meningitis case escalated into brain inflammation. If it had not been for finding an ID doctor with an interest in Lyme I would have died.

I don't know how serious your illness is right now. If it is low-lying then you may be able to find an MD that you can work with and, hopefully, teach. However, if it is severe, do not waste your time with the uneducated because they could easily make your situation worse just like they did with me in the beginning.

Best,

Yes, my nose was bent out of shape because the poster asked about seeing a rheumatologist or an Infectious Disease MD. People, repeatedly on this forum, throw stones at these types of specialists.

I take offense to this because I see an Infectious Disease MD who is very knowledgable in Lyme Disease.

My concern is that some people here are desperately looking for help and are told ONLY to see an LLMD. All I want to know is what are the credentials of an "LLMD"? And, who decides that?

My Dr. is not on the Lymenet list of LLMDs. However, he follows the ILADS guidelines, goes to the conferences and treats many, many Lyme patients aggressively and with success.

I think it is high time we cut some of the IDMDs a little slack. I find it insulting when I have been told I am seeing a Quack because he is not on some list. I also find it arrogant when a famous LLMD has his receptionist tell me he can't see me unless I show up with $750 in cash.

There are lots of good MDs out there who do treat agressively for Lyme. And, there are lots who do not. This new patient should search read up on Lyme and try to get the help she needs from whomever is willing to treat her according to the guidelines. As I said, and you can't disagree, there is no sure cure yet for Lyme. Hence, the guidelines are just that - guidelines.

I am not hateful or mentally ill, as you say. And your wish that I be buried is a little sick. I have been on this board for a long time and have contributed what I have learned from my own treatment and my own struggle with Lyme. And, as I said, this is a great board to learn from (or didn't you read that?). I am merely suggesting this new person educate herself and be open-minded, unlike some of you who think only a Lymenet certified LLMD can treat her.

Some people, many, do not have access to the great LLMDs. They are few.

You all should be more tolerant of those MDs who are willing to learn and treat aggressively.

If you have ever read any of my other posts you would know that I amsurely not a troll. Let's all try to be more open-minded and helpful, instead of discouraging people by telling them horror stories about certain types of MDs. That is a generalization that is not warranted.

BTW, I offered, on another thread, to help this person find an MD because I have seen and researched many of them in her location.

Have a nice day.

Best regards to all.

We used this as a place to start. Then, when we needed more help, we did call LDA and other organizations that recommended other doctors. At that point, we had made some progress w/treatment while covered by insurance, and paid for LLMD second opinions out of pocket.

I will say that there are dangers to everything we try. Our PCP is now tired of Lyme, since it isn't fully cured in 2 years, and is now balking. Seeing rheumatologists or infectious disease doctors or neurooligists or any specialist who is actively hostile to the very idea of chroni Lyme can cause big problems, legaly, financially and emotionally.

So if you do see a rheum. or ID doctor, I would at least check with the Lyme Disease Fdn. to see if the doctor is on their list, or ask the doctor right out, in a "meet the doctor" kind of appt., what their attitude is toward chronic Lyme.

p.s. Just noticed that you live in Stamford Ct. You are so close to several really good Lyme doctors. You would still have to pay a lot at first, but after the first appt. it would be less expensive, and you can do phone consults in place of appts. If I lived where you lived, I would try either Dr. P or this new Dr. S. The money would probably be worth it. Or you could travel to see Dr. D or another doctor covered by insurance.