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» LymeNet Flash » Questions and Discussion » General Support » What was your knowledge of Lyme prior to your DX?

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Author Topic: What was your knowledge of Lyme prior to your DX?
cheezhead
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Had you ever heard of it?

I had but never thought much of it.

Did you think it was wide spread or more localized to specific areas?

I thought it was something you could only get if you spent a lot of time in the woods. Or if you lived in a rural areas.

Was it your belief that it was easily treated?

I assumed it was easily found with basic blood work, and was quickly treated.

Did you know of anyone with LD before you were infected?

I knew no one personaly.

If you knew about Lyme, what symptoms did you associate with it?

I had thought one would only have joint pain.

How about you.....

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Ocean
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I heard of it just a couple years before I got sick. It was just getting talked about in Ohio in the 90's and then my grandma pulled a tick off of her! She sent the tick to get it tested, it was negative. I thought she would die if she had gotten it. Then when I got so sick, I never suspected Lyme. I thought you got arthritis really bad and eventually you died. My doc tested me for Lyme with an Elisa in 1997. I thought, 'why is he doing this? I'm so tired and anxious and depressed with muscle twitches, I can't have Lyme, no arthritis!"

hahaha, fast forward a decade and misdiagnosis later!

I think most people have no knowledge of it, until they are forced to. I'm sure I wouldn't know much about it now had it not happened to me. I would have no idea how life robbing it really is.

Good post for thought!

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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kam
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I heard about it when I was camping across the US in the 70's.

I thought you just got the flu for a few days and that was it.

boy was I wrong.

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adamm
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I learned everything I needed to know right after my bite, but my parents, upon whom I relied for transportation, chose to believe the Pentagon over their own son. They still deny that I am ill.
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AP
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I'm part of the MTV generation... The only thing I knew about Lyme was that Irene from the Real World Seattle had it and had to leave the show.

When I was diagnosed, I laughed. I had no idea. A couple days later, I was in the hospital and doctors didn't think I'd make it out.

Taught me.

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

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bettyg
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my story is similiar to rest of you...


i'd heard of it; NEVER SAW TICK BEFORE, and i don't think i've seen one since my correct diagnosis 4.5 yrs. ago either.


i remember reading in local newspaper of a young 30 yr. old woman, GERI FORSEEN, sp, locally who had died of lyme disease. she was so pretty in her photo and i think 2 young children.


i remember a woman coming to our fibro support group where i was the leader and she stated she had LYME, and perhaps others of us did too.


i knew nothing of treatments until i went to a NON-advertised lyme support group where they were going to talk about fibro, cfs, ms, parkinson's, etc.


then speaker talked of all his fibro pain that he had in his lyme disease plus talked about 3-4 dozen herbs and what they were good for.


until then i didn't know about the travesty of OUT OF POCKET expenses causing the losses of:


jobs, spouses, children, health insurance, homes, bankruptcy, etc!! what an eye opener!


after being correctly diagnosed 34 yrs. later, discovered the LYME WAR EXISTED in my treatment process! [toilet] [tsk] [puke] [cussing]

NOT ANOTHER WAR PLUS $$$; why dear God??


i'd heard of rocky mt. spotted fever; never other co-infections of main ones.


my what a naive life we all had prior to chronic lyme and/or co-infection life that we all know today! [cussing]

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LisaS
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I never heard of it, even though I had even worked in a Drs office in arizona for awhile.

Until about three weeks or so before I was diagnosed with it, a co-worker who was taking care of the same patient I was (in his home) said wow I tried some probiotics and it's helping me lift my arms.

I was like what? What are probiotics and why can't you lift your arms. And she said cuz I have Lyme Disease. A week later she tried to commit suicide and then just got in her car with her oldest son and disappeared. Noone has heard from her since.

Three weeks later, after years of Drs and tests and ER visits I was diagnosed with lyme.

Yay.

--------------------
https://www.facebook.com/profile.php?id=1660435643

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pab
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In the late eighties, my dad got sick and no one knew what was wrong with him. He went to a few doctors and no one could decide what he had. Lyme disease was one of the possibilities and he didn't receive any treatment.

In 1990, he had a heart attack. He had bypass surgery but he died shortly after the surgery.

His surgeon said his heart was damaged before the heart attack and Lyme disease would be a likely possibility.

Peggy

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

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Liz D
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When I was bitten in 84 I had never heard of lyme. When it came on my 'radar' I thought that if I had it I would know because my annual check ups/blood tests etc would have alerted my doc that something was wrong. Also my bullseye/dartboard rash was not near the tick bite so I never associated the two and even if I had I knew nothing about there being a rash.
Could I have been any more naive and incredibly stupid??
Liz D

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hiker53
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Being an avid hiker I knew to watch for ticks, but assumed the bull's eye rash was the indicator for lyme. I never saw the tick that bit me nor got the rash.

However, within a few weeks of hiking and getting some symptoms I knew I had lyme---only took 18 more months to convince a doctor!

I also incorrectly assumed a few rounds of antibiotics would cure it. [Mad]
Hiker53

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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AP
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quote:
Originally posted by hiker53:
I also incorrectly assumed a few rounds of antibiotics would cure it. [Mad]
Hiker53

Back when I trusted doctors, I believed 6 weeks of IV Rocephin would kill anything that had infected me. I believed them when they said the symptoms would fade after they took me off the Rocephin, that the white matter would fade, that I was good as new.

Look where I am 4 years later... This blows.

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

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JKM03
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I live in NY, when I was in school if we were going on a field trip into the woods, they would go through the whole "Tick check" with a buddy routine with us, tell us to wear white socks over long light colored pants, and to wear our hair braided with a baseball cap.

They'd say, "Check for ticks, kids! You don't want to get Lyme disease."

They never exactly told us what Lyme disease was...

Later in college I had a friend, she got Lyme disease on a camping trip. Her face swelled up like a balloon and she developed the rash. So, from that point on Lyme disease was a "rash and swelling sickness" in my mind.

20 years later, my oldest daughter is severely ill with this disease, she has seizures and other severe neuro. complications.

When our teachers told us, "You don't want to get Lyme disease!"...they knew what they were talking about!

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backintherain
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I grew up doing tick checks every summer night. But I wasn't that scared. And we never saw a deer tick in all those years. Later I heard that lyme was a very bad disease for which there was no cure. It basically ruins your life and you get it from deer ticks, which are practically invisible.

But then my boyfriend's brother got it, and he took some medicine and was fine. So, it didn't seem to be nearly as bad as I'd heard.

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kpoindexter
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I had heard of Lyme Disease, but it wasnt until I actually had a discussion with a good friend of mine who had lyme that I even began considering the possibilities that what I had was lyme.

Even after talking to her, I still denied it, even though many of the symptoms I have are identical to hers.

I think the denial came from the knowlege that her recovery was long and her symptoms had progressed what I think were far beyond mine.

I've always been the kind of person who has to convince himself of things before he will accept what others are saying.

Ken

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maryagdj
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I just heard about Lyme Disease today, and I don't have it but I think my mom does. She has been sick for a couple of years now, and has been diagnosed with Rhuematoid Arthritis, Fibromialsia, biecets, migrane phinomina bare with me on the spellings. She is still very sick and has been prescibed a hundred different medicines including prednisone which almost killed her last year because they put her on too much. I am soo sick of her being in pain and so is she, she has been suicidal at times and I don't know what else to do. Until today that is when I was watching a show called mystery diagnosis and a girl on there has all of the same symptoms as my mom and ended up being diagnosed with Lyme Disease. So all morning today I have been researching this disease and I'm getting really excited because its sounding a lot like what she might have. Oh and I'm not familiar with how to post this is my first time but if anybody has any advice I would greatly appreciate it.
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Geneal
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I'd heard of Lyme.

I knew the tick was the vector, but mistakenly thought

That it was only found in the North East of our great USA.

When I finally was diagnosed, I still didn't know much about it.

Now I feel like I know too much sometimes.

Hugs,

Geneal

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Peedie
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I knew nothing - nada - zip - thought it was something rare - something cured a long time ago and almost nonexistant, and absolutely somewhere else.
Stupid me.
-p

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soleil16
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Growing up, I was told to check for ticks and not walk through the grass barefoot. It always scared me, but I figured you'd see the tick and take medicine right away to cure Lyme disease.

By 7th grade, I was so sick all the time with 'flu' and stayed home from school a lot. I remember a fellow student took time off from school after being diagnosed with Lyme, the school had a fundraiser to help her family pay medical bills, and all I remember thinking was, "I probably feel so much more sick than her, and no one wants to help me!" I guess I was pretty selfish. But now that I know I have Lyme, I feel that she was pretty lucky to be diagnosed so quickly and have all that support.

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hshbmom
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I consider myself blessed.


About 25 years ago...my neice contracted Lyme around age 4, but was undiagnosed until she was about 14. You can imagine the rest of the story.


She nearly died many times. The physicians accused her mother of many ugly things. They also accused this very ill young lady of faking her illness. At one point she couldn't get out of bed, couldn't stand any noise or light. We had to whisper to talk to her.


She weighed about 70 pounds because her food wouldn't digest...when she was about 16. She got strictures in her digestive tract.


Thank God she learned of Dr. B in NY. She would be dead if it hadn't been for him. She and her mom took many Angel Flights to see him. She had a central line for IV therapy.


I was bit by a tick and developed a rash in June 2006. I went to doctor the next morning and started antibiotics within 48 hours of seeing the rash. I knew not to take this lightly, but my physician dismissed my concern. He was wrong!


I found a dermatologist who knew the consequences of this disease and gave me another Rx for doxy.


I was in a LLMD's office within 2 weeks and when they saw my rash photos, said it was definately Lyme. The rest is history.

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lymemommy
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As a kid, all I had heard about lyme was that it was some nasty illness that kids in the Southern (central) part of NJ were getting. But that we didn't have to worry where we lived, because our ticks didn't have it.

Despite living in a highly endemic area for my whole life, I did not know a single symptom of lyme, outside of the fact that you got it from a tick.

And like so many others here, I'm sure that the lack of knowledge delayed diagnosis.

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MissMari
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Want to hear a good one?

I'm a former nurse and clinical lab scientist (specialty: microbiology), eventually spending my years teaching allied health courses at colleges and tech schools.

I "heard" all of the usual things about Lyme:

"The Bullseye Rash" (I even had some classic pictures of it in my textbooks),

"The Tick" that caused it (more pictures in textbooks), though some claimed it was smaller than a poppyseed, others said it was large,

"The Symptoms": joint pain and swelling, fatigue, stiff neck. And..... that was about it.

"The Treatment": a couple of doses of doxycycline and one was good to go!

I believe I was infected in 1995, no tick on me, but where I was living the grass was full of them.

PROBLEMS:

"The Bullseye Rash": My original rash was not a "bullseye" -- it was about 3 inches in diameter on my arm and a very angry red.

Since I was not living in a "high risk state" at the time (PA), everyone, self included thought: "infected insect or spider bite" and I poured on the cortisone cream. And it went away.

A few years later after MORE similar rashes (and gallons of cortisone cream), more "spider bites" (boy, they sure liked me!), etc. I finally had a rash on my thigh as large as the palm of my hand. Can everyone say "DUH????!!!"

"The Tick": Didnt have one on me that I found at first. Later years I picked 'em off, brushed 'em off, and found one in my comb. They all looked alike to me.

"The Symptoms": At first, I just felt lousy --- headache, crappy, tired. Fast forward: so many symptoms now ya dont wanna know.

"The Treatment": Cortisone cream did not help. :-) A few weeks of doxycycline about 5 years later did for about 10 minutes.

CONCLUSION: All I learned about Lyme meant diddly even to a "medical professional" like me, and if anything, allowed me to even mess myself up more since what I "knew" was inaccurate.

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

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cheezhead
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MissMari summed it up in a nut shell.

The point I was hoping to point out is that main street America is still in the blind about this devastating disease.

Until more medical professionals learn the truth, more will continue to suffer.

Brandon

Posts: 55 | From S.E. Wisconsin | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
   

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