Lyme Disease Support Group

In theory, one would think that ID doctors would be knowledgable about lyme disease. Most ID docs do not believe there is such a thing as chronic lyme. I have heard of a few good experiences- Lyme Literate Infectious Disease MD's!

When my daughter had a positive Elisa, and we were awaiting the Western Blot results, her pediatrician referred us to a pediatric ID doctor. We travelled to this highly esteemed university medical institution with high hopes. THE MOMENT the doctor walked in the examiniation room, it was apparent that he was dismissing us and any concerns of lyme. He avoided talking about lyme. However, he went out on a limb and made a clinical diagnosis of past whooping cough- based on our description of a cough she had some months ago, with no lab work to confirm! And, he said that mono symptoms (post mono-syndrome?) could last for months and even years. When we were exiting the room, I asked, so, do you think my daughter has chronic fatigue or firbromyalgia? He did not hesitate to reply, "CFS and fibromyalgia are excuses for middle aged women to not get out of bed!" I then asked, in a quivering voice (at my whit's end!), what he would do if his child frequently awoke with severe pains and unable to walk. He said he would immediately rush his child to the emergency room.

It was a very unsatisfying doctor's visit, to say the least. Through word of mouth, I suggest that you ask to see if someone knows of a LL ID doc up your way. Then, and only then, would I recommend seeing an ID dr for lyme!

Sorry so long!

Wow. That is incredibly messed up and Frightening. Thanks for the story. I have just gotten insurance and looking at all the doctors in the network. Im pretty sure I am not going to find an LLMD that takes my insurance and considering I am unemployed, I am trying to make the most affordable decision

I'm in southeastern Michigan, and my LLMD is an ID doctor. But he isn't your average ID doc. I don't even know of any other LLMD in this area (but I've heard plenty of horror stories of people going to the highly esteemed Univ of Mich and being misdiagnosed).
I think it all depends on the doctor. My doctor is one of those rare docs who wants to know "Why?" When I talked to him about fibromyalgia his only comment was that "there is no such a disease -- there's always a cause." He has done lots of research on Chronic Fatigue Syndrome, and he's the go-to guy for all the docs in the area who can't figure out what's wrong with their patients. I'm so glad to have him as my LLMD.
Honestly, I think it's just plain hard to find a really good doctor of any sort.

You would think they would wouldn't you? Unfortunately they are on the ban wagon that says Lyme can be treated with one months worth of antibiotic.
I would advise you to stay away and trust your LLMD more. I don't even want to tell you what I was told by one just let me tell you they are part off some of our problems where doctors are concerned.

Do you think it makes a difference if this is a ID in Connecticut? Our state just signed a bill to allow for extended treatments of abx foe Lyme

I just don't think it's right to lump all doctors together. Maybe you could call and talk to a nurse (more likely just a medical office assistant) and ask about the doctor's protocol for Lyme, or if he's treated Lyme.
Do you have a Lyme support group near you? That would be a good place to get a recommendation. Any friends who are doctors or nurses or who work in the hospitals there? They are good sources, too.
I was really fortunate when I got sick, b/c we were attending a church where the pastor's wife had Lyme, and she's the one who recommended my doc. This is back when Lyme was the last thing in the world we imagined it could be. We went to him for his reputation for being an excellent diagnostician.

That reminds me, though, that the pastor's wife found this doctor by googling Chronic Fatigue. He had written a number of articles about it. So maybe looking in an untypical direction may lead you somewhere.

Matt, how far is Boston from you? My current LLMD is also an ID; I was referred to him by my neuro LLMD, who was wonderful.

The doctor I'm seeing now, is in the Under Our Skin movie - one of the good guys.

I've heard good and bad stories about ID docs...I think most of them will test you though and will work with you.

Sorry to hear about your daughter's experience Moreel. Good comeback though.

I think the problem with getting treatment is that it's controversial - both the diagnosis -- no reliable test -- and treatment -- when does it/should it end and at what levels can one tolerate. Except for symptoms how does one know the infection is gone. And if the infection is gone, should antibiotics at that point be used to palliate those symptoms (if the infection is gone.)

Im a couple hours outside of Boston.

There is a real good (by his credentials) ID in my insurance network. I think my ND is doing a good job choosing treatments but part of me wants to get other opinions. I still am finishing up the first straight month of antibiotics, so its not like im not getting any treatment. But diagnosing coinfections i know is important to healing.

One good thing about ID's is that they know quite a bit about all the different kinds of bacteria and viruses and their life cycles. As a result, they can give you real answers and explanations to questions like "can a rife machine kill bacteria? Why or why not?", "can certain bacteria actually use enough of my oxygen that I would notice it?", "if I use heat or pressure therapy, would I kill off the trillions of other good bacteria that live in my gut?".

I guess I'm saying is they like it when you ask them stuff they know. Never tell them your read something on the internet. Tell them you heard something from a friend. Better yet, bring a friend and have them ask!