Is Lyme disease in missouri?

[Laurabeavers]

I live in the St. Louis area. I was a dog groomer for years. At one point I de ticked a dog that was loaded with seed ticks. That night my ear started throbbing and I woke up with blood on my pillow. I went to the dr and was told outer ear infection and given drops. Soon after I became very I'll, weakness, widespread pain and low grade fever and my ear was still throbbing and bleeding. After 4 mos of feeling I'll and given drops for the third time I insisted I had a tick in my ear and wasn't leaving until it was removed and a nurse flushed  a dead rotten tick out with a water pick! I was then tested for Lyme and came back positive for Lyme and erlichiosis. I switched drs of course, he proceeded to tell me mo. Had no Lyme disease, he tested me again... Positive! I was put on 6 weeks of doxycycline. That was in 2001 and I have never recovered and am on disability and STILL being told I never had Lyme disease!!!!  HELP!!

[JackieCalifornia]

Welcome to MedHelp Lyme!  Not exactly a party kind of event, but it has its own good aspects ... like getting rid of Lyme!  Good for you for plowing ahead.

I'm not medically trained, but from what I read, doxycycline (doxy for short) can be quite effective against a Lyme infection ... BUT only if the infection is diagnosed fairly soon.  Many of us do not ever know when we were bitten by any of the various infections everywhere, and I am one of those:  saw no rash or tick, but had a nasty case of Lyme and babesiosis (another infection that often accompanies Lyme bacteria.  

There is a miserable split in the medical community about Lyme and its fellow travellers ('co-infections' as a group, as babesiosis was for me).  Many docs do not yet understand Lyme or believe that it is anything but rare, hard to get and easy to cure.  NOT.

The doc you saw sounds like one of the traditionalists, so I would get copies of all the tests that were run (if any were done) and go find a Lyme specialist for a second opinion.  It took me more than a few docs before one *finally* ran a reliable Lyme test, which came back positive! ... except the doc said (this is a quote):  "Oh, you can't possibly have Lyme!  I have patients with Lyme ... and they are all ... near death."

I still feel badly for that doc's patients, who may still be stumbling around with Lyme, but I had had an old friend who had Lyme some years before, and I understood immediately that Lyme was nothing to scoff at.  

I just searched online for:

                                     lyme disease st. louis mo

and got quite a few very interesting links that indicate your area is not ignoring the situation.  I would contact them and also snoop around on the net for other wise MDs, and also look for patient-focused organizations such as

     www [dot] lymenet [dot] org/SupportGroups/UnitedStates/Missouri/ ...

     "The St. Louis Lyme Foundation, is a non-profit all volunteer organization serving the St. Louis area, Eastern Missouri, and South West Illinois."

Groups like this often have members who have dealt with Lyme and know where the good Lyme docs are to go to.

Bottom line:  the internet is your friend.  The more you look around, the more you will discover in your area.

In a few more years, the confusion in the medical community over Lyme will be done, but for now, it's more of a group effort among us, the patients, and the wise MDs who think big thoughts on this topic.  I wandered around for about a year not know why I felt so lousy, and when the 20th MD I saw tested me for Lyme (since I had been tested for everything else!), the dear doc said gently, "Oh, you can't possibly have Lyme.  I have patients with Lyme ... and they are all ... near death."  GOOD GRIEF!!  

Luckily, I had an old friend in another part of the country who had had Lyme, so when I heard that word, I knew to go straight to a good Lyme doc.  I was diagnosed by a splendid MD here in California, got another family member tested and diagnosed also, and we are fine now, years after infection and treatment.

We were not given doxycycline because we had had symptoms for quite a while, and once Lyme burrows in, doxy often isn't terribly effective.  However, Lyme often has companion infections that do respond to doxycycline, so it does have its place.  There are other antibiotics that treat additional infections, so there are ways to deal with the whole mess.  What really matters is THE DOC.

There is a voluntary organization for docs, International Lyme and Associated Diseases Society (ILADS, pronounced EYE-lads for short), which is a voluntary organization for docs and other medical personnel who have a special interest in Lyme.  My own Lyme doc is a member of ILADS, and while there is no foolproof way to know if a doc who *claims* to be a Lyme specialist really is one, a doc who is an ILADS member is a good start.

In your situation, I would

    -- contact    ILADS [dot] org    for the names of Lyme docs on the ILADS roster in your area, and

    -- also snoop around online for MDs near you who mention Lyme (tho many stay underground due to the split in the medical community), and

    -- also for patient-focused groups who deal with Lyme themselves or in their families.  

If one doc or group doesn't suit, then look around a bit more.  

Keep us posted!  Best wishes --