posted
Since my husband and I have both been diagnosed with TBDs, I seem to see lyme everywhere. I feel like a street preacher or town cryer and I think perhaps I'm disturbing people. However, so many of my friends and family are suffering from undiagnosed health problems that fit the TBD symptoms lists, that I feel I must convince them to get tested.
Am I alone here?
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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But I *do* know that my older sister, not just my younger sister and I, has lyme as well.
my older sister a different (arthritic) strain. history of conjunctivitis, chronic UTIs & sinus infections, in the last year a dx of RA, followed by heart pain and an ER visit with a dx of long QT interval.
A former friend: cluster(neurological) headaches, low testosterone, Sjogren's, depression/anxiety, history of digging deer ticks out of his back, and I'm sure other symptoms he never shared. and a new bite (after all these symptoms appeared) this year with a rash.
A co-worker diagnosed with "shingles without the rash" -- did not test positive for it or no test was performed, can't remember which--accompanied by electric-shock type pain.
Oh, and my former PCP contracted lyme this year.
At least 3 family members of co-workers have been diagnosed (chronic remains to be seen), 1 co-worker is suspected (shingles woman),
and male co-worker was diagnosed last summer. it was acute and he "recovered". He's had more than his fair share of doctor's appts this year so now I'm wondering....
and also a co-worker's friend hospitalized with meningitis of "unknown origin" last year.
It's craziness.
and it's not just with people I know. I OVERHEAR people talking.
The other day, walking through my workplace, I took a shortcut through another section of the office where corporate employee offices are located (I'm not acquainted w/that many ppl over there).
I walked by someone standing in the doorway "I've NEVER had a stiff neck like that EVER. I thought I had had a really stiff neck before until...the meningitis".
Then got off the bus (same day mind you), walking down the block, passing two 20-something boys and one emphatically stated "it effects ALL THE JOINTS!" as he gesticulated in a swooping motion up-and-down his body.
Sometimes I think the universe is trying to tell me something. Can't imagine what that is Posts: 571 | From Massachusetts | Registered: Oct 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
You are not alone at all.
I know many people who fit the profile exactly...all in different ways.
Some I have spoken to took me seriously, but said they honestly could never afford the out of pocket expenses to pursue it.....so, so sad.
Instead they just get meds for each individual symptom/problem like alot of people do...or they have other diagnoses like RA and are taking immune suppressing drugs, etc for that.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Yeah, I get torn between minding my own business and butting in, in hopes of actually helping someone.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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posted
Yes, I agree that it's all-important to let people know; just be aware that 60-70% test positive who have the disease, so it's treated clinically, by history and symptoms.
So I see it as an educating effort more than just a get-tested message, so that everyone starts to get an idea of what is going on. For every person you talk to, they may talk with many more. So go for it and see what approaches seem to work the best.
It's also helpful to be able to hand people a Lyme brochure, if you can get some.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Oh, that's a great idea; a lyme brochure. I wonder where I could get some?
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I just urged my sister-in-law yet AGAIN to get tested for Lyme and company.
She has had migraines for 17 years, and currently she has had a headache for 414 days.
She has been tested for everything else, had MRIs, CAT scans, and God knows what elsse, and she has been hospitalized numerous times.
A few months ago she had stroke symptoms--lost vision in one eye, weakness on one side and Bells palsy--the docs could not find any evidence of her having a stroke, so they brushed it off as a mental illness.
I have been on my brother to get her to my LLMD to be tested, but he hasn't done anything; now I talked directly to her.
She doesn't do much outside, but she has had cats all her life, so it is possible she had a tick bite at some point.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I agree. I was undiagnosed for a long time (like many!) and along the way I met a lot of other undiagnosed folks online.
I try to bring up Lyme in a non-fanatical way, but often times people are not receptive. It requires a light touch that I try to execute, but it's tough since obviously it's such a personal topic for me.
It does drive me nuts to think there are so many walking around with TBD but who are too close-minded to consider it possible just because of a negative ELISA or lack of a recalled tick bite.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I often make light-hearted comments at appropriate times on Facebook (like I ever fell light-hearted about what this damn disease has done to me).
It opens the door for people to ask if I have Lyme, how I found out, what my symptoms are, etc.
I'd like to think I've educated at least one person that way.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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