After being diagnosed with Lyme, I wanted to share my story with others
So that maybe, just maybe they would know we have Lyme here and not go through
What I did to get diagnosed.
My goal was one person a week.
I got two live ones yesterday who asked about symptoms, tests, etc.
One lady who had been diagnosed with Fibromyalgia and yet
The doctors weren't really sure about that diagnosis.
I have not always made my goal....Sometimes just too sick to explain.
Just wanted to see if others were spreading the word.
Hugs,
Geneal
Posted by mushroomman06 (Member # 13088) on :
Yes, I do my best to bring about the awareness and the the changes to ones life from LYME. The people that I approach enjoy the many outdoor activities that I do and they are in the prime area for that tick bite. So many have had ticks attached to them and because no rash occured assume they are fine,this is so untrue and many are shocked after I offer the knowledge that I have learned since starting my long up hill battle.
Posted by Geneal (Member # 10375) on :
Isn't it amazing that we all run the risk (everybody) in our own back yards,
Yet all I knew about Lyme prior to diagnosis was that it was a tick borne disease
And it occurred in the Northeast.
I am guilty of once being ignorant too.
No longer....I think spreading the word is a grass roots effort.
The more we educate, the more people learn and recognize the potential hazards,
The more pressure we put on the system.
There is power in numbers.
AIDs taught me that.
Hugs,
Geneal
Posted by cookiegirl (Member # 15226) on :
My sister has struggled with life-long migraines and severe depression/anxiety for much of her life.
I suggested she get tested (even though testing is inaccurate, I know).
She laughed, acknowledged she probably has it...
...then stated she didn't want to know because she didn't want to deal with the regimen I've had to start.
Education can only go so far. I just pray she never gets sicker.
Posted by map1131 (Member # 2022) on :
The phone just rang last night. My husband's uncle called and he had been deer/nymph tick bite at the lake house 4 days ago.
Cutting grass and later that night taking a shower, he happened to spot the tick on his elbow. He said it was the littlest son on gun. He just didn't realize after 70 yrs that ticks come in that size?
This uncle has many health issues and didn't want to chance anything. Wanted to talk to the lady that found out about all this lyme & stuff the hard way.
He's got an appt with doc Friday when doc comes back into office. His elbow has already started reacting to the tick bite. Hard knot swelling.
After I explained the tick was on there long enough to spit his guts into him and asked him what kind of stuff do you think that tick had in his gut? He said he didn't even want to think where that nasty sob had been.
He understood he didn't want to wait for sx to start. His said his doc knew his body couldn't handle a bacteria of any kind.
It makes me feel good about my preaching and teaching when someone knows to call me and ask questions early on. I would rather they call me preventively than call me down the road when it's gone to far.
If ticks make them think of me and they call me, that's okay. I didn't go down this road since '99 just for me. It's a blessing to help others.
Pam
Posted by MaryL (Member # 11997) on :
My husband keeps Lyme brochures in his office waiting room & has a "Lyme" file with many different articles that he passes out. He just talked again to someone today & gave them literature because his preteen had been bitten by a tick & was sick.
Any new person he meets he makes sure to tell them the whole family has Lyme & if they show any interest, he tries to hook them up with our local state organization & gives them literature.
My son (6th grade) did a presentation on Lyme disease for his science class & we showed a video that we made from several "Mystery Diagnosis" shows that aired on TV. He handed out tick removal kits to the kids in his class.
We traveled to the governor's office & met with the lieutenant governor in our state to testify about our family's experience with Lyme. My son was in a wheelchair at the time but he made it too.
The more people who hear "Lyme disease" the harder it will be to ignore us. Let's be like the AIDS folks & really make people aware of us!
Posted by Geneal (Member # 10375) on :
We are all doing such a good job.
I also recommend Lymenet to anyone who really wants to learn more.
You guys are just great.
Hugs,
Geneal
Posted by just don (Member # 1129) on :
To ALL,,
Your all doing a GREAT job!!! Keep it up,,problem is 'well' people dont want to hear this,,,,
and sick people are sometimes too sick to comprehend.
But no one with sxs gets past me without a passing thought,,what if it is???
MaryL,,,I think I 'saw' you at a lyme meeting(the ONLY one I made it too so far) In S.C. Iowa. it was the talk by Dr. O from maryland!!(a few years back)
I didnt talk to you but remember specificly either you or your clone??? Blonde is beautiful ya know!!(am I correct???)
Think somebody mentioned your husband being a vet!! Course there are MORE than one in YOUR state!!
Its HARDER to talk lyme here,,,NOT as many people effected with it,,,but enough ,,and MANY more that dont know what they have!!
When I get moved, thought maybe I would drop in to the fibro support meeting and drop a bomb of,,,"Do you really KNOW whats wrong with you???" "Ever 'consider' lyme??"
I think there is a CFS support group too,,,same deal!! I think THAT is where we can have the LARGEST impact,,,with the truely sick and struggling sect!!
Too many "CLOSED" minds but IF you can make one wonder and THINK,,might be amazed.
Again your ALL amazing educators of potential lyme patients,,,keep up the GREAT work!! Spread the "LOVE"!!!hopefully--just don--
Posted by bettyg (Member # 6147) on :
maryL,
how many of you met w/Patti Judge when you went to lt. governor's office?
What kind of a reception did you get? DID THEY FOLLOWUP ON ANYTHING WITH YOU ALL?? -------------------------------------------
what a great idea your hubby has of having them in his waiting room!!
did other members of lda of iowa get involved and calling dc last friday and monday on phone marathon to get HR 741 and S1708 SCHEDULED for a hearing? we need so many MORE calls there to our IOWA REPS. and calling the 3 VIP CHAIRS of this committee SITTING on our lyme bill.
Posted by MysteryGirl44 (Member # 10201) on :
Yes, I have a Lyme Disease awareness MySpace and I feel like it has helped me do good. The link to it is in my signature. I always carry around the two panflits from the Lyme Disease Association ans Tickmarks because you just never know who you might talk to. For example, I was talking to a lady yesterday about how I have Lyme and she told me that her dog has Lyme and Rocky Mountain Spotted Fever and sometimes he couldn't walk. It made me sad that she really didn't know much about the diseases, but hopefully I was able to help.
Posted by Curiouser (Member # 14128) on :
Since I don't get out much, I tend to do more armchair education. I'm on a lot of various health forums and most regulars know I have lyme.
The nice thing is when someone comes on and their symptoms sound lyme-ish (from my own story and links I've posted), sometimes one of the regs will send me a note to go talk to the person.
I send them a link to the essay "When to suspect lyme disease". I don't want to push so I let the person take it from there.
I've had some success with this approach. A few folks have even gotten tested. And I haven't even been doing this for very long.
By posting my story and spreading awareness that way, I'm slowly making some headway and helping others.
Posted by bettyg (Member # 6147) on :
victoria, please post your LYME WALK LINK HERE for all those who have NOT taken the time to read it since it will be happening in THREE WEEKS!! Posted by victoria (Member # 11267) on :
Want to educate people but don't know how? Or maybe you don't get out of the house enough to actually educate them!
Here is a free opportunity to submit your story absolutely free and help others understand.
Yes my Aunt was just diagnosed with MS. But she has gone to several specialists and they didnt all agree. So I sent her a bunch of lyme vs MS info and now she has an appointment with my LLMD. Posted by lymemommy (Member # 12495) on :
Just this past weekend I had an ackward educatioanl opportunity, at my younger son's birthday party.
One of our guests, around age 10, came up to me and asked, Why isn't (our 5 year old) eating anything? Is it because he got bit by a tick, cause he told me that he got bit by one? Does he have Lyme? Is he contagious? What are the symptoms?
I took a breath, thought about what I could say without upseting our guest and her dad, who was standing across the room, then responded, Yes, he has lyme, no, he isn't contagious. You can only get lyme from a tick. If you ever see a tick on you, you should tell your parents right away.
My son isn't eating, because sometimes his tummy hurts real bad, and it's hard for him to eat. Yes, this is because of the lyme.
She asked what his "good medications' are (apparantly that's what my son calls them) and I explained what they were. She wanted to know if he would always be sick, and i explained that it takes a long time to make lyme go away.
Before she went home, I let her dad know that she gave me the third degree, and how I responded. I think he appreciated the heads up.
I tried to give answers that were honest, age appropriate, but not too scary.
the whole experience has made me think more about what may be coming down the road for my son, as he gets older and his peers start to learn more about health issues.
deep sigh.....
Take care. kp
Posted by Geneal (Member # 10375) on :
Warriors one and all.
You are all so brave and dedicated.
I wish someone had told me....but it has to start somewhere with someone.
I hate to say "Thanks to me" but 12/13 neighbors with Lyme would have never
Thought to look for it had I not been diagnosed and given them symptoms lists to go by.
My blessing to be sure.
Hugs,
Geneal
Posted by Robin123 (Member # 9197) on :
Geneal - so all your neighbors have Lyme too?
I am now flyering events here. I type up a small write-up for each, with one for people who live here (the local news) and one for those who don't.
It really helps just to be able to hand people typed-up info with a brief description of what's going on, what to do to protect, and helpful websites.
People's awareness runs the whole gamut between knowing about Lyme, generally because they know someone with it who usually isn't doing too well, to people who have no clue this is spreading.
And every once in a while, unfortunately, that repetition back to me of the symptoms I am describing from the person, who up to that point had not realized that they might have the symptoms of Lyme/co's. And then we have quite a discussion.
Posted by Geneal (Member # 10375) on :
Yes, all of my neighbors except one have Lyme.
Most are CDC positive.
All see my LLMD although two of them are in a severe state of denial.
I've been thinking of heading up a support group, but with two small children it is
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