If no one comes up with a specific recommendation for a Lyme doc, there are several ways to search for one:
1 -- email to
contact [at] ILADS [dot] org
and tell them your general location as you did above (x hours north of Indianapolis) and how far you can travel (also as you did above). They will email you back with names of ILADS members.
2 -- do a search online for
lyme disease indiana
and/or lyme disease ohio
or lyme disease cincinnati
or whatever other parameters you want to try -- many LLMD stay underground, so finding them is like an easter egg hunt.
Some of these links will be to local or state support groups, and they often have good information -- but as always, take it with a grain or two of salt, since Lyme is cutting-edge medicine, and grandpa always said sharp edges can be dangerous. If you see a doc that looks reasonable but seems a bit odd in person, try another doc. There are some oddballs out there.
Good luck, and let us know how it goes and how you do! Best wishses --
I contracted Lyme disease 24 yrs ago growing up out on eastern Long Island. Back then lyme was just being heard of and all the locals said it originated from Plum Island, where they do the animal testing out in open air pens.
Took a few years to figure out what was making me sick. Took a few more years for proper treatment. Was symptom free many years but relapsed after birth of my second child, my daughter had Bell's palsy and seizures confusion acting inappropriate, took awhile and many MD to figure out she had lyme.
I started with trouble swallowing, weakness down left arm stiff neck and irritable, was scared it was ALS, did not go to MD for fear they would diagnose ALS, said to myself hmmm my daughter has lyme maybe it's late stage lyme after reading the book Cure Unknown started myself on doxycycline within 2 weeks all the symptoms gone, stayed on a while. Now every so often will get some symptoms and go on doxy for a while and they go away. By the way my daughter is doing great now off all tx but I worry for her long term future health. I know lyme never really goes away.
Glad you found a way to cope with Lyme.
If you don't mind my saying so, you might consider seeing a Lyme specialist for both your daughter and yourself. To my understanding, doxycycline is not particular effective in a long-standing Lyme infection. It is the traditional choice for treatment immediately after a tickbite is known, but Lyme bacteria have a way of hiding in the body where doxy doesn't reach them. It takes a combination of antibiotics to finally root them out, but it takes a Lyme specialist who understands all this, as most docs do not. It sounds like your Lyme infection is kept in check most of the time by your immune system, but likely not cured -- tho I am not medically trained and certainly have no way of 'diagnosing' your situation. It's also possible you keep getting re-infected, given where you live.
I can't tell from your message whether your daughter has been diagnosed and treated or not, but please consider taking her to a Lyme specialist for evaluation. Children can be resilient, and their immune systems can keep infections in check for a long time, but that doesn't mean they are well. When I was diagnosed with Lyme and a co-infection of babesiosis, I insisted that my child be tested too, since we had recently been to all the same places on the East Coast in summer. Turns out the kid ALSO had Lyme and babesia, but the symptoms were not too bad because the immune system was holding them in check. The resilience of youth.
We were both treated by a Lyme specialist and are fine now. You might also consider seeing one -- it's what I would do, after my own dance with the bug.
Best wishes --
There are indeed some people who can never seem to get rid of Lyme. These are usually people who've had it for many years, and also people who have coinfections along with it. But there are plenty of people who do completely recover. I think the folk belief that you can never get rid of it comes from there being a whole lot of people out there who didn't get well on the IDSA's 3-4 week treatment guidelines. With sufficient treatment (the earlier the better), it can often be cured.
I also encourage you and your daughter to go to an ILADS LLMD. Even if you conclude that managing yours is your best approach, giving your daughter a chance to be completely cured sounds worth a try. Some short term hassles of antibiotics treatment is a whole lot better than a lifetime of battling Lyme. Just don't stop until an experienced LLMD says it's okay to stop. The most experienced ones say at least 8 weeks after cessation of all symptoms (excluding any permanent damage).
"ILADS LLMD" maybe just alphabet soup to you. If you need a decoder ring, let us know.
Have you found one yet? I am also looking. I am looking HARD for one and I am getting soooo frustrated! My name is Valerie Techentin ..find me on FB and I can inbox u since we cant put certain things on here. Have u found a doctor yet though?
There is a 'private message' function on this website, but it's not obvious.
They've buried it lately when they redesigned the site, but it still works fine, once you find it.
Go to the top of this screen
Click on 'My MedHelp'
Click on 'Messages'
Click on 'Compose'
You have to know the exact spelling of the person's screen name that you are sending to -- the 'to' box will not automatically fill in.
@Indigo--- Jackie mentioned the PM function. I'd like to add the reasons 'why', not just for you but for all members here.
The names of doctors that treat Lyme are best sent via a PM. Because of 'investigations' into doctors that have treated Lyme they're sorta gun-shy. And I don't blame them. (Some doctors are willingly in the public eye so you may notice some are mentioned here.)
Another reason for using the PM function is---- putting real names, addresses, phone numbers, email addys etc is usually discouraged. I will go further and say that I would never do that on a public forum. That's just my personal decision.
Using a picture (taken via cell phone at home) as an avatar allows anyone with just the tiniest bit of cyber knowledge to find where that person lives. Unless the GPS function is turned off on the cell phone.
Joke follows: So if a person is trying to elude the Federales----- don't do that! LOL
Tipped her off to mine, who is in the area she was looking for.