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Hi zandvoort. Thanks for starting this topic - I have thought about this a lot.

I was misdiagnosed and undiagnosed. I only saw 9 or 10 doctors before being properly diagnosed. Others here saw many more doctors in search for answers before they were finally diagnosed!

I will definitely educate the doctors who didn't catch my Lyme. I just pray that I do it with grace.

Somedays I feel like driving to thier office and showing them what thier misdiagnosis looks like - fever, weight gain, sloppy grooming, fatigue, hair loss, bad vision, no balance, etc! Other days I feel like calling a lawyer and finding out if I can sue and for how much and then handing all the money over to the Lyme Disease Association or some other non-profit advocay group.

I know those aren't the answers, but I get so upset thinking that somewhere, there's another person going through what I went through! What if it's a single mom like me?? What if it's a person who was never really sick a day in thier lives before like me and easily ignored thier early symptoms? What if it's some poor kid whose family doesn't believe them, or doesn't know about Lyme, or has never heard of it's many symptoms?

Grrr. It makes me so upset.

I hope I can draft a calm, short, letter and simply educate them. I'll have to wait till I'm healthy enough to do that and when I've calmed down a bit from my anger over having this happen to me at all.

I will also educate anyone who will listen. Just about anywhere I go and almost anyone I talk to, people always know someone who has Lyme and went through a similiar experience of being misdiagnosed or not getting a high enough dose of medicine fast enough and for a long enough period of time.

Someday, you will hear a news report about a crazy lady and her kids who calmly chained themselves to the doors of the CDC, ILIADS (sp?) or any other agency/committe with the power to change treatment and testing standards of this crazy backwards disease.

Well, that crazy lady will be me. My kids told me they would be proud to be arrested for civil disobedience or causing a public nuisance if it means that just 1 person doesn't have to go through what we went through.

I don't know what the root cause is - why on earth can't testing standards be improved? Why can't we be treated longer than 3 weeks and have our insurance companies pay for it?

In the long run, it will save money to treat us properly the first time, instead of going broke, or losing our homes to pay for our own medicine or going from one specialist to another in search of a cause.

This is not a 3rd world country (not that I mean any ill will to any country or mean to talk down about any other country) - this is the U. S of A. for pete's sake!

If we can't get medicine here, well then something smells like a lot of baloney!

A long time ago when I was health and full of vitality and energy, I worked as a project manager for a big company. They used to say that "I had a pair that clanked". As a woman, I took that as the biggest compliment.

Oh God I can't wait to be like again!

The insurance company that didn't cover my doctor bills and drug costs, the doctors that dismissed me, laughed at me, ignored me and the tests that came back negative (ELISA) --- well, they chose the wrong woman to mess with! I pray that I can get back to pitbull mode and do something about this.

I did test CDC positive, so my current insurance company is paying for my IV Rocephin. But what happens after a few weeks when they cut me off because some beaurocrat says I'm cured???

I hope I didn't spend too much time on my soapbox, but this is a sore spot with me and I hope I recover enough so that I can be a sore spot for some agency someday.

Thanks for starting this thread. I hope it motivates all of us to educate, educate, educate!

Peace and health to you,

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