What follows is a post from my blog, TOUCHED BY LYME, on the California Lyme Disease Association website. I'm hoping you folks will help me out by answering the questions at the end. I'll keep you posted on the responses I get. The blog can be accessed here: http://www.lymedisease.org/news/lyme_blog_1/index.1.html
TOUCHED BY LYME: No Lyme in (your zip code here)
Several years ago when my daughter first came down with mysterious disabling symptoms that no doctor could diagnose, my neighbor said, ``Sounds like it could be Lyme disease.'' I knew next to nothing about Lyme, but added it to my list of questions for the doctor.
As it happened, we had an appointment with a well-regarded specialist the next day. I asked him if we could test my daughter for Lyme.
Says he (crossing arms, looking stern): ``Absolutely not.''
Say I (surprised): ``Why not? You're testing her for everything else.''
Says he (glaring): ``Because she doesn't HAVE Lyme disease.''
Say I (perplexed): ``What makes you so sure of that?''
Says he (growling): ``There's no Lyme disease in Davis.''
Say I (even more perplexed): ``But she doesn't spend all her time in Davis. We hike, we camp, we travel abroad....''
Says he (with finality): ``There's no Lyme in Davis.'' (End of discussion.)
At the time, I thought this strange response was surely limited to this particular doctor, in this particular place. However, since then, I've heard countless eerily similar stories.
One was a woman I'll call Denise who several years ago caught Lyme back east. After a course of treatment, her health improved and she relocated to Turlock, California. Regrettably, a year or so after the move, Denise's Lyme symptoms returned. She went to her local doctor, and the conversation went something like this:
Says he: ``It can't be Lyme, because there's no Lyme in Turlock.''
Says she: ``I didn't catch it in Turlock. I caught it in Pennsylvania. Here are my lab results showing I was CDC positive.''
Says he (with finality): ``There's no Lyme in Turlock.'' (End of discussion.)
A couple of months ago, a new member of CaliforniaLyme posted a plaintive question: Did anybody in the group know for sure they'd caught Lyme in California? Her daughter was quite ill, the mom had reason to think it might be Lyme, but all the doctors they saw insisted it couldn't be Lyme because....(all together now) ``THERE'S NO LYME DISEASE IN CALIFORNIA.''
Within two days, that simple query brought 40 responses, with such divergent answers as Riverside County, Ventura, camping along the American River, Placer County, Lassen National Park, Malibu, Napa and Yosemite.
I'd like to cast the net a little wider, and ask the question again, in a few different ways. With apologies to readers in other parts of the country, for this one, I'd like all the responses to be California-related.
Not everyone knows where and when they were bitten. However, many people do. So, if you know the California location where you caught Lyme, please shoot me an email (even if you now live elsewhere.) If you are a Californian who knows you were bitten elsewhere (like visiting another state or country) tell me that, too. If you don't know where you were exposed, but you live in California, tell me that. If you have reason to believe you contracted it from your mother in utero (or gave it to your child the same way) and you now live in California (or did when you or the child were born) tell me that as well. Please put ``Lyme in California'' in the subject line, and send it to [email protected]. Feel free to add extra information if you want. (I won't reveal names or identifying details.)
I'll tabulate the results and report back in this space. I also plan to share this information with state and local health officials. It's time to put a stop to the absurd notion that Lyme disease isn't a serious problem right here in the Golden State.
Posted by massman (Member # 18116) on :
When the docs say that ask them if EVERYONE in town has been tested. If not, what they are saying is FALSE. And tell them that, too.
Posted by bettyg (Member # 6147) on :
this is for CALIF. FOLKS ONLY??
Posted by jblral (Member # 8836) on :
Yes, for this particular project, please only answer if there is a California connection. (Maybe in the future we could do something in a different area.)
Posted by jblral (Member # 8836) on :
I've been getting a lot of very interesting responses. I will be pulling it together in a report to submitted to state health officials next month. Anyone else with a California-related infection story to report?
Posted by mandy614 (Member # 16524) on :
I was definitely infected on the east coast either in FL or MD, but got really sick while living in CA.
I was told by two different doctors in San Luis Obispo county (93405) lyme disease did not exist in this county. I was misdiagnosed for over a year, probably longer.
Hope this helps.
Mandy
Posted by scared08 (Member # 14695) on :
Hi, I live in Georgia now and this is where I was finally dx. However, WITH-OUT A DOUBT I was infected in Calif.!!! I lived many years in the Napa Valley area and was bit several times.
I wenting camping in Clearlake and was bitten.
I remember once my children 11 and 10 at the time, coming home from fishing with their father. The first thing they told me was how they hit this tree and tons of 'baby spiders' feel on them. I don't know why, but I knew it was ticks. After making them run to the garage and strip, they both took baths, I scrubbed them both and found 2 ticks on my daughter and 3 on my son.
I find it soooo interesting and just plain ignorant for any DR. to make such a bold statement such as, "There is no Lyme...!!!" As I said to someone the other day, "Do they REALLY think that a Deer, Mouse, Deer Fly, or squirel really knows where the county line, the state line is??????"
What I find very interesting is when I was infected there were actually signs posted at every state park, or wooded area; WARNING----THERE HAVE BEEN CASES OF LYME DISEASE COMING FROM THE DEER TICK!!!!! Hhhhmmmmm This was 4 to 5 years before I was infected and I've had it for 18!!!!!!