I've had untreated lyme disease since 1999. Just started treatment Feb.2007. Everyone knows I have lyme disease, but they don't understand the severity of it. They've done no research on their own. They think what I have is more of an annoyance than a "real disease."

This is frustrating enough, but I've recently started having more severe cognitive problems that are affecting my work AND my ability to socialize. Our meetings always involve a group of women, meeting for dinner, talking -- as all women do -- all while supposedly watching a really bad reality TV show (it's all very tongue and cheek). Talk about informational and noise overload! I feel like I'm the only kid in class that doesn't get the problem; like I'm in a room of people laughing, having fun, and speaking in foreign language.

So. Now I don't want to socialize with them at all. But I don't want to just "drop out." I'd like to actually tell them exactly what is going on -- and here's the kicker -- in a way that they will finally GET it!

How do you accurately and concisely describe lyme disease? Is it even possible?

Do you email them and send a link that gives a good description? Lots of good links out there. Do you chart and graph your good and bad days? Handouts? Slides? Power Point? Are mimes helpful?

At some point, I became facetious up there

Thanks in advance for all your ideas.

LT

I am sorry you have been sick for so long, but it is good you have been diagnosed and are getting treated. It is also good you have a sense of humor--this will help tremendously!

Are you seeing a knowledgeable doctor? Have you been tested for all the co-infections ticks can transmit?

It can be hard for friends and family to understand how serious tick-borne illnesses can be and that it can take time to recover.

I suggest that at one of your get-togethers with your friends, you explain what you are dealing with. Lyme disease is the second fastest growing infectious disease in the US after AIDS and the number one vector-borne disease in the US. Not only will you be educating your friends about what you are going through, you are arming them with information to protect themselves, their families, and their pets. If you need some resources, feel free to email me.

I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

I suggest that you send the movie trailer of the upcoming documentary on Lyme called "Under Our Skin" at http://www.lymediseasefilm.com/ You could send this link out and/or what it with your friends present. It is a very powerful clip.

Good luck with your treatment!

We'll see what I can muster up to say at the next get-together (actually it's tonight, but I'm going to bail tonight).

Thanks for responding.

LT

I have explained the whole thing to people and a few months later they say,,,"Are you STILL sick with THAT???" And whats that you have again???

make an effort to retain all the friends you can, you never have enough.

Sounds like you are a pretty young person so friends are sooooo important!! But if they bail,,,maybe they werent so good of friend to start with!!--just don--