Sunday, June 13, 2010

Learn about Lyme

This is Nani Lauriano Luculescu, a.k.a. The Victorious Vixen (don’t you love that!). She’s a crafter I met online who is on a crusade to educate people about Lyme Disease, and to help fund a cure. Her dad has Lyme Disease, so this is personal. 

It’s personal for me, too, because my 12-year-old niece, Grace, has Lyme Disease. She was diagnosed last fall. She had a rash, but it wasn’t the typical Lyme bulls-eye rash, and her nurse practitioner brushed off my brother and sister-in-law’s request for a test and poo-pooed their legitimate questions. She said we didn’t have Lyme in North Carolina. She was wrong.

A few months later Grace was in the hospital for more than four days with infected knees. The doctors there thought she had a staph infection, because her white blood cell count was off the charts. They did emergency surgery to drain the fluid. But after four days, the cultures grew still grew nothing, and my brother and sister-in-law demanded a Lyme test. Grace’s doctor still said it was unnecessary. The test came back positive for stage 3 Lyme, with 8 positive bands. Grace’s case caused Wake County, N.C., to declare epidemic levels for Lyme. This should make Raleigh area doctors more aware of the situation, and more likely to test for Lyme if there is any suspicion of it at all.

If the nurse had tested her, or put her on antibiotics when they first went in about the rash and requested a Lyme test, it might have made a big difference. It took months for her to recover from the symptoms and the knee infection, but Grace is doing well right now. But Lyme is a serious disease that can affect people for a lifetime. And most people know so little about how to protect themselves.

That’s why a group called Lymenaide has produced these public service announcements:


Volunteers like Nani have been sending Lymenaide press kits to TV stations across North America, so I hope you’ll be seeing this PSA soon on your local stations.

To draw attention to this campaign, Nani is giving away one of her fabulous handmade wallets. This is the last in her Red, Black & White Optical Delusion wallet series:

Isn’t it fabulous? On Nani’s blog, you can see other PSAs, learn more about Lyme Disease, and leave a comment for a chance to win. You need to do it by 11:59 p.m. on Friday, June 18. Just follow the instructions in Nani’s post. 

Please … do it for Grace. 

8 comments:

  1. My son had lyme and was brushed off as having the flu. He just kept getting sicker and finally found a doctor that diagnosed him correctly. He said they caught it in time, any longer and he would have had permanent damage. So he was able to take the cillins and other pills and doing well now.

    Debbie

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  2. So glad to hear your son is doing well, Debbie!

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  3. Susan, thanks so much for sharing in our cause to prevent others from this very debilitating disease. I knew nothing about Lyme disease until my dad contracted it 3 years ago...boy has it been a major wake up call for our family.

    Debbie, I'm so glad that your son was able to get diagnosed in time...that is a critical part of being able to recover! Sadly, most mainstream doctors don't catch it in time.

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  4. I am taking antibiotics right now for Lyme. It is not my first time with Lyme - I live in CT and we have deer walking through the property every day - but it is the first time I've had the typical bullseye rash. So, be aware, you can have Lyme even without a rash!

    Good luck to everyone - it can be very nasty.

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  5. Hi. Thanks so much for posting this. I have been treating Lyme for 7 years, although it's pretty obvious I have had it since I was a little girl (undiagnosed). Interestingly, because I couldn't continue to work in my chosen profession due to Lyme, art found me, and now I have a new passion despite Lyme.
    All the best,
    Abby

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  6. Thanks for sharing that.
    Unfortunately it is all too common for the medical profession not to test for Lyme Disease.
    My sister-in-law contracted it when she was pregnant, was not properly diagnosed or treated till long after the initial symptoms, and my nephew (now deceased) was born with lots of complications

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  7. Great information....thanks for passing it along.

    Kelly

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  8. Personal for me too. My honey has had Lyme's for 9 years. Bitten by 5 ticks in one day. He does have permanent damage in some areas.
    Linda

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