TOUCHED BY LYME: There's Lyme in them thar zip codes
A steady stream of responses has flowed into my email box regarding my previous blog post ``No Lyme in (your zip code here).'' A collage of your answers:
I was bitten by a tick on a hike in Tiburon (Marin County). Although I removed the tick and took it to my doctor, she refused not only to test me, but to test the tick. (There is NO Lyme disease in California, AND, this is not the right kind of tick, was her response). Nine years and many strange symptoms later I was diagnosed with Lyme, bartonella, babesia and ehrlichia.
I live in Monterey County and used to hike quite regularly in the surrounding hills which were infested with ticks. One day I stopped counting the number I brushed off my pants after it reached 100. Later, when I mentioned to my lawyer that I had chronic Lyme, he said, "There is no Lyme in California.''
I am a vet tech, and I got bitten in Gold Run, in the foothills of the Sierra....Almost every dog that comes into our clinic tests positive for exposure to Lyme.
I was definitely in San Francisco when I was bitten and later discovered a nymph tick walking away from the bite site. It may have been from an afternoon of gardening a few days earlier. My primary doctor said I didn't need to worry, but within 2- 3 weeks I had multiple symptoms of Lyme. A year later, I captured an Ixodes nymph tick on my glove while pruning a shrub in San Francisco, in the suburban West of Twin Peaks area, an area with lawns and gardens, trees, hedges, and plenty of birds, rodents and other wildlife.
I have a friend who was bitten in the City of San Bernardino and developed a bull's-eye rash on his scalp. He was denied treatment because "THERE IS NO LYME DISEASE IN SAN BERNARDINO.'' My brother was bitten in Riverside County, lived in San Bernardino County and denied treatment because "THERE IS NO LYME DISEASE IN SOUTHERN CALIFORNIA.'' I was denied testing and treatment for babesia recently while hospitalized because the ID docs did not "BELIEVE" in it. It is too rare and could not possibly be causing my fever, anemia, and drenching sweats.
Sonoma. San Diego. Sequoia National Forest. Big Sur. Alpine County. San Luis Obispo. Butte County. Mt. Diablo State Park. Las Trampas Regional Park in Alamo. Plumas County. Vista. Placer County. Auburn. Folsom Lake. Orange County. Nevada County. In the Sierras during a camping trip. Hiking in the California redwoods. In Humboldt County, on my own property. Cuyamaca Mountains. Santa Barbara. Solana Beach. Mammoth Lakes. Nisene Marks Park in Santa Cruz County. Los Angeles County.
I contracted Lyme disease in 2007, while I was hiking off trail in the San Bernardino Mountains...When I finally get to see the ER doctor, my pain and inflammation is so bad that I cannot even sit on the gurney to talk to the doctor. My knees are horribly swollen, the left knee so bad that I can't bend it to sit on the edge of the gurney. So I tell the ER doctor how suddenly this all happened. I tell him of my exposure to ticks and suspicion of Lyme. His response: "There is no Lyme disease in California. You have osteo-arthritis.'' A second doctor: "There is no Lyme west of the Rocky Mountains." A third doctor: ``You have rheumatoid arthritis." Later, an LLMD confirmed I had Lyme.
If you know you caught Lyme in California, please send me your story at [email protected]. Put ``Lyme in California'' in the subject line. I will collate all responses and present it to state health officials at next month's state Lyme Disease Advisory Committee meeting in Sacramento. Join the movement. Let's put a stop to this nonsense.
Posted by jewels (Member # 18892) on :
It would be nice to do this for every state in the USA.
Too bad you can't do a class action suit some how.
Thank you for taking the time to do this.
Posted by jblral (Member # 8836) on :
It's something that state support groups could do. Just needs somebody to collect and collatet he information.
Posted by scared08 (Member # 14695) on :
I have no doubt that I was infected the the Napa Valley in Calif. 18 years ago. However I tested neg., eventhough my case was sooo test-book, it's not even funny.
The rash was at the scalp line, bottom of feet, soles of hands. However I was camping again when the rashes and first sx developed!!!! So I do not have documentation if the rashes, but I do of everything else.
Do you still wany my story for this purpose????
Posted by jblral (Member # 8836) on :
Yes, if you believe you were infected in California, that's what I'm interested in hearing.
Posted by bettyg (Member # 6147) on :
joe,
food for thought here ... i'm not from california, but read your post anywhere!! nosey
you mentioned about every state doing this ... 2 suggestions:
1. phyllis mervine set up the 50 state lyme yahoo groups; perhaps something could be added there per state and asking for participation.
2. wisc's pj langhoff, author, has set something up on her www.lymeleague.com .
anyway it's for 50 states, and she has folk's personal stories on there.
she's too busy as an author and publishing her own books, but perhaps it could be a collecting area and then other folks put it together per STATE in which they live.
again, just suggestions ... Posted by abbyjo (Member # 16073) on :
My husband and I were infected in Ventura CA. I know of severeal people who got it in Ojai CA. I
tested positive for lyme after experiencing many scary neuro. and physical symptoms. My Dr.
said the labs couldn't be accurate because there is no Lyme in Ventura County. He also
added that he would have had it by now if it did exist. BTW, this was a Neurologist!!
Posted by Robin123 (Member # 9197) on :
Excellent work, jbl - I'm wondering if we could all have access to the collected statements, to be able to print out to take with us to doctor appts and give to them.
I take brochures with me now, but this would be a good addition.
Posted by theviewfromthecurb (Member # 10310) on :
i was first bit in 2002 in los gatos, california. off summit road about 1/2 mile from hwy 17. i know because it was my own yard.
and, after all i have been through during this horrible disease, a husband that cheated and stole every dime from me including my house and everything i ever had...
tonight, i want to die.
Posted by Robin123 (Member # 9197) on :
I hear you, view - this disease can take everything normal away from us - we end up having to live a different kind of life - that's what we discuss on here and give each other support for.
P'ming you...
Posted by Peedie (Member # 15355) on :
Hey View - I feel for you!!! It is difficult enough to deal with this illness - and now to deal with your spouse going bad!
You are better off without him. Please try to find support somewhere. Your parents, a brother or sister - a support group.
Don't try to do this all alone.
If you have no one - you have all of us here!!
BTW - I think there are laws in place in all states that say your husband has no right to take your home and everything you shared together!!
Maybe you should post for legal advise!
Best Wishes and Get Well -p
Posted by SForsgren (Member # 7686) on :
I was bitten in Sea Ranch CA
Posted by CD57 (Member # 11749) on :
N. Cal for me
Posted by Sheryl777 (Member # 17804) on :
I have no doubt I was infected while on a lengthy vacation in Sonoma County, CA on the coastal range.
Sheryl
Posted by susan pease (Member # 17476) on :
My two daughters were bitten on Cobb Mt.in Lake county CA in 1989. . . tested positive. I was bitten in 2000 in Chico CA. We all have arthritis etc.
Susan
Posted by Julie F. (Member # 15956) on :
Santa Clara County for me, and my brother, same backyard, 15 years apart.
My doctor's comment "It would be unheard of for two members of the same family to get lyme disease from the same exact place. In fact, that would be worth a scientific study."
Hmmm....still waiting for that study...
Posted by jblral (Member # 8836) on :
Thanks for these responses. Keep them coming!
Posted by Robin123 (Member # 9197) on :
Big Sur, CA - 1981.
Posted by scared08 (Member # 14695) on :
jblral,
I will post my entire story at the site you have listed. I am saving this thread so that I can make sure to post it.
Right now, I'm in a comtimual herx that i don't think is going to go away soon. but as soon as i can think and type more clearly, i will.
I admire you and thank you for what your doing!
Posted by scared08 (Member # 14695) on :
View,
I just wanted you to know that you are not a lone in how you feel!!!!! I know that may now make you feel better right now. But just by you posting on here a step in thje right dirctrection.
I noticed you don't have many posts but have been a member for quit a while; is that right?? View---please keep posting!!!!! Use us for your support, a place to yell and scream by writing here, so many have and are going through the same thing.
My husband is still here, but I have no doubt that it's ONLY because he can't afford bills without by disability check!!!! He has been in TWO AFFAIRS THAT I KNOW OF FOR SURE, ONE I CAUGHT HIM IN JUST A FEW MONTHS AGO, but of course he still continues to deny it.
I know he is still having an affair. There is NOTHNIG between us---NOTHING. Just room mates. If I had somewhere to go, I would leave in a heart beat!!!!
I'm going to PM you, but I wanted to post hererr too dause I know with me, I',m not always good at my PM's, I don't know why????
YOU HAVE RIGHTS!!!! there are programs and resources to help you. he cannot take everything!!!!! YOU CAN TAKE IT BACK!!!!!! you have to find the fight in you, it's there! find it and use it!
Also, I want you to know that just yestertaday i cried all day, i screamed out loud into a towel, just out of control. Why---Because I wanted to die!!!! AND I WAS MAD AS H**L THAT I COULDN'T DIE!!!! I prayed for God to take me, but sa you can see i'm still here.
I fight this often, but them other days I fight the disease which is what we need to fucus on! IT'S A HARD FIGHT, A LONG ONE, BUT ONE THAT CAN BE WON IF WE KEEP FIGHTING IT AND NOT GIVE INTO IT!!!!
I will pray continually for you. I pm'ing you
Posted by AndrewInCA (Member # 2010) on :
I was bitten on the coast just north of the town of Mendocino in October 2001. I started getting sick just five days later, and was partially paralyzed within three months.
My GP said "there is no Lyme disease in CA." The infectious disease specialist I saw at Stanford University Hospital admitted I had all the symptoms of Lyme and then wouldn't treat me when my symptoms worsened.
I tested positive and eventually found a caring LLMD who saved my life. I have been disabled by Lyme for over seven years now.
Posted by Peedie (Member # 15355) on :
For the record: My daughter and I - Anza, San Diego County 15 years ago. emailed story to jblral already.
Posted by jblral (Member # 8836) on :
Thanks, all. Keep these stories coming!
Posted by jblral (Member # 8836) on :
up
Posted by jblral (Member # 8836) on :
I appreciate all the responses I've gotten from Lymenetters--some here, others have emailed to me at the above-mentioned address. I'm still interested in hearing from anyone who wants to share their story.
Posted by Robin123 (Member # 9197) on :
jbl, if it counts to tell you what was told me:
Someone's son became ill with all our typical symptoms in the mid 80s. He used to ride his mountain bike through the hills of Marin. I was the first to tell her, last year, what her son might have.
Many Marin reports.
Recent Mendocino reports.
Yosemite/Camp Mather reports.
Kids bit at age one in parks in Pacifica.
Earliest reported California infection I've heard of: 1951, in Santa Barbara. Told to me by a Bay Arean to whom it happened.
Lyme fatality in San Francisco a couple years ago. Person was bitten in the '90s in Crissy Field, which is part of the GGNRA (national park service district).
How about the young man who ended up in a coma last year at SF General hospital here after pulling ticks off his dog in Marin? I understand he is still in the process of recovering.
Actually, I think I've heard about pretty much all over the state by now.
Posted by tickwhisperer (Member # 18676) on :
I'm 46 now and believe I was infected when I was 15 while living in Anaheim Hills in Orange County.
I was working on the golf course there picking up golf balls in the ravines, etc. Wish I had known about deer and ticks back then. Anyway, I became sick and developed a large lymph node on my neck, which was removed via biopsy. Test results revealed nothing.
Since then, lots of weird symptoms which culminated in 2007. Rubbery legs, neuropathy, brain fog, bloodshot eyes, muscle twitching, etc. CDC and Igenex positive Westernblots.
Even with the positive tests, doctors still look at me like i have a third eye. "There is no Lyme in Southern California," even though Orange County vector control found it in local ticks years ago!!
Posted by blinkie (Member # 14470) on :
I was infected in Napa Valley, Ca in 1998. I was also reinfected in 2006 while camping in Yosemite Valley.
I was told by my Dr that the embedded tick and surrounding rash was a spider bite. I didn't know I already had lyme at the time. But, after this second bite, I went downhill fast with a flu-like illness. I am sure this is when I also contracted babesia and bartonella as a host of new symptoms emerged, all related to babs and bart.
Posted by jblral (Member # 8836) on :
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