Topic: "how did YOU get Lyme? Do you spend a lot of time in the woods?"
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Do you get a lot of questions like this??
I live in PA where the ticks are frantically bloodthirsty and the lyme diagnosis goes up up up faster than any other state ( I am pretty sure I heard this on the news?) and still people continue to ask me "how did YOU get THAT?????"
Where does everyone live?? in a bubble??
I just don't get it. I mean, I can't tell a person I was dx with a tick borne disease without them telling me they know someone that "had it", so how that heck doesn't everyone know you can get this beast from other things than a tick?
or that its sexually transmitted? or that my (our) state is right at the top? or that there are many other things you get from ticks?
I have an acquaintance that has every tick disease symptom and has gardened her entire life, kneeling in mulch, that refuses to think she could have lyme because she has never seen a tick. She thinks only people with dogs as pets get lyme.
There is a family member who suddenly came down with a terrible life threatening illness along with just as sudden symptoms of doctor knows what right after a tick bit last summer, but she refuses to even think about lyme, saying, "I am not going to add THAT on my plate now!"
my own parents that live in a place that killed all the deer because everyone was getting sick years ago refusing to even listen to me and my experience and think the Eliza is enough. meanwhile they get sicker and sicker.
And how many times have YOU heard , "it's age related" ????? referring to aches, pains, and changes in all organly function- I really HATE that one! gggrrrrrr
These are all reasons why I have been ignoring the lyme. maybe that is why I have cut my time here too along with my other reasons posted in another thread. - feeling better and getting more done
It seems like 90% of people I know/meet will listen to at least a little about lyme but they are sitll so closed off to the reality.
I am just so tired of trying to warn people and still no one getting it. well maybe the 10% are. I just wish there were more of those!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I got it when I was about 8 years old, most likely. I'm pretty tired of talking about it myself. Now I'm tired of talking about MCAS.
Many in my area know about Lyme .. but then some are really shocked to hear how ill it can make you. I have a friend whose adult son nearly died from it. He was in ICU for days.
I was Lymed in Texas though, not here in MO.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I actually fit the stereotype - got Lymed in a woodsy area with deer.
I too am surprised by how little people understand about it.
The consolation for me, however, is that by bringing up the topic, I am catching people with it who didn't know what their symptoms mean, so that's a good thing, and one reason why I continue to discuss it!
[ 01-16-2018, 09:36 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Yes Lisa, misinformation about Lyme is still rampant unfortunately.
The blame lays square on the CDC's shoulders. Until they STOP spewing their garage and START doing their job, I will not stop educating and advocating.
I work with the public. I got sick and have been missing in action from my job for 15 months. I did not disclose why I left except to my boss. I wanted it to remain private.
I returned to work a few days a month. Many well-wishers, hugs, genuine compassion. It was an easy decision to disclose my journey. I HAD to right a wrong. That simple.
I got bite while sleeping in bed with my dogs. I got baby bullseye rash, not 5cm according to CDC standards. I did not have 5 bands on western book, only 3 bands. I did not have tick attached for 24 hours, it bit me on hand.
I do not have fibromyalgia, MS, traverse mylagia, psychiatric disease, ect. . . 3 years and 19 doctors to get diagnosised with Tick Borne Infections.
As long as my story is the norm (which it is), don't be surprised to see and find my Lyme brochures located in stores, bathrooms, cabs, store-front windows, on trees in parks, in libraries, and my local county health department.
Lyme disease is NOT some form of rare disease. It's an epidemic !
In this day of age, with social media, we can really make a difference. We are SO close. I would love to put my time and energy into something more joyful but not until there is insurance covered Lyme treatment for everyone.
Keep treating, keep fighting, just keep standing 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
PS .. I grew up in Houston .. but was bitten on our property about 90 miles away. All wooded, with deer.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I got bitten in my own garden.
Not even, I got first bitten by the front door, after walking less than 10 steps to pick the post (Switzerland).
Classic case: 2 weeks after bite, EM rash starts, and grows a bit every day, until it grows exponentially fast.
My daughter got bitten in Belgium, at the border with France, at the countryside house of her grandfather.
My husband went there since he was a very small child, feels like forever, and never had seen a tick in his life.
She got ill even before we found the tick still biting her scalp. So tiny, people could barely believe it had legs and walked (after I pulled it out to prove it had been a tick bite!)
Her tummy symptoms started in about 24 hours after the bite, and it just got worse, developed into joint pain, headaches, GI symptoms, food allergies, etc.
We got bitten dozens of times since then. Literally dozens of times and found even more ticks still waking on our clothes or skin (before biting).
If that first bite did not make me sick, subsequent ones would certainly have.
Now we still get bitten (average for me 5 times a year) and for my daughter about 3 x a year, but we no longer fall ill with lyme symptoms...
We still fight food allergies, I still fight my annual candida (comes and goes), and that's it.
Only now I believe, it's not only the ticks causing illness. It's tick + immune system together, in my own experience.
Otherwise, we would be still sick with lyme, non-stop, and all neighbors too. But we aren't, and they aren't.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Me? NO Rash at all, but caught the tick in my ankle 48hours after running to get my 11yr old away from a wild horse, at my cousin's home in Mountain Grove, MO.
At 72 hours, I found a second tick (and felt so stupid for not checking the other ankle).
Clongen Labs DNA tested them and I put the results on my Ticked Off Literally blog.
Visiting mom in Ellington, MO, my chihuahua got 4 deer ticks on mom's front lawn, on a leash just long enough to potty.
Yosemite hiking for weeks each summer started it, years ago & most likely got me many ticks I never saw.
I was so shocked at what I was learning that I made the video, "7 Lyme Facts That Would Have Saved Me" (not monetized)
...showing all the things NO ONE TOLD us.
The perfect photo of My Tick was the first tick I ever saw in person, and my induction into the world of Lyme.
Poor people in the South are dying every day, never knowing.
With TWO Strains from over 1k mikes apart, and co-infections, I went into renal failure and couldn't walk for months.
Now I'm stable, but can't stop sweating. It is *insane* as it keeps me locked indoors, washing, changing and cooling down any time I move too much.
Here's the problem I face with educating:
Before they are sick, People Won't Listen.
AFTER...well it's all but too late.
When I see some poverty-stricken person, clearly dying from Lyme, I keep my mouth shut, because I can't help, so knowing the truth has not set me free.
I wrote it all in a one-page blog (Ticked Off Literally), as it was unfolding, because I just couldn't believe what I was seeing and learning, as my Sony DSC-H5 macro-zoom camera, literally saved my life. I couldn't even see the tick until I took a zoom pic.
Brussels, I know what you mean. Every time I go to the lake house where they are biting all the time, not everyone there is even sick! It's baffling.
I LOVED reading all your stories here! Thank you guys for sharing. <3
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
When I was 7 months pregnant with my son I was just going to bed and something- I think my guardian angel- told me to look down my nightgown.
I lifted the neck hole up and looked down and there it was! on my left breast digging into my pre-delivery boob. of course I was hysterical and made my husband take t out in the heat of July with the windows open and neighbors close, hahaaa
At that time, 20 years ago, they didn't know even what they know now and so the midwives gave me 4 days of something that didn't work but made me super ill. As soon as my son was born I went down hill from there. It wasn't til 35 drs and like 15 years later I finally got some real help.
I have no idea where I got that tick. but like I said, I live in PA.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I think I got a tick from one of our cats...They always were getting ticks. I never found the tick that actually made me sick, but I found others afterward. I could have gotten it from the yard or anytime outside really.
I never really knew how bad lyme disease was until I got it. I was never careful about ticks and always in and out of the woods. I think a could have been bitten by a tick years before. I seemed to be declining in health the last 3 or 4 years before I got sick.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I think I got it hiking through tall grass, but I was also in a cypress swamp that same day.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8876 | From Illinois | Registered: Aug 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my son just told me he found 2 ticks on his body (not attached) last week. and my daughter has a bite inbetween her toes!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Murfreesboro tn. exploring an old southern mansion. overgrown wooded lot. must have been 8 to 10 I think. can't remember.
rebit years later, 25 years or so. camping in texas somewhere.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Mammoth Cave National Park KY.
Locals call them seed ticks.
Seeded with Lyme disease is what they are.
MADDOG
Posts: 3995 | From Ohio | Registered: Oct 2000
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posted
37 years ago I went on an 11 mile backpacking trip in the wilderness on Vancouver Island on a college break. It was one year before W.Berdorfer discovered the Lyme spirochete. I planned to travel the world, working in the field of public health. Instead I'm still here, struggling to get out of bed everyday.. and along the way I passed it on to my daughter, who at 23 is in bed, relapsed.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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