Sunday, March 1, 2009

Trying to get public awareness...

I'm not really sure how many people are following Xian's blog at this point, but thought that it wouldn't hurt to post something here. Anyone who knows our story is aware of the devastation that Lyme disease brings, and our recent events as posted in the previous post indicate that there's still huge problems in terms of maintaining treatment. Here's what's been posted recently on a number of Lyme groups, including CanLyme---the group that's provided a lot for us in terms of support. I expect that the numbers count, so even just a line of support would help. Many adult Lyme sufferers are simply too ill to sit at a computer and there's some concern that there won't be the needed response. The stories listed on the comments pages are pretty tragic and there are more than a few that mirror Xian's story. Feel free to pass along this message---people need to know about this disease as it continues to spread, so that treatment can be pursued at the beginning, when treatment is much easier.


Oprah is deciding whether to do a show on Lyme THIS WEEK, and we need to fill her comment board ASAP. According to the show producer, emails directly to Oprah will NOT be read; you need to post here:

Having Oprah feature Lyme will help the new bill in Congress and it will pressure the new IDSA panel to do the right thing.

Note that there is a 200 word limit. The important thing is that you post a paragraph or two about your personal story, not how long it is.

Can we please ask you to post again asking Dr. Oz and Oprah to do a show on UNDER OUR SKIN, the documentary that exposes the truth about Lyme disease?? (There are only 129 posts up there now.)

Here is how:
Here is the link where you can post a message - if you are already a member of Oprah's community.

If you are not a member of the Oprah community, you will need to sign up first:
click on this link to sign up:

Once you have filled out the appropriate info -- easy stuff, name, username, email address, birth year -- then you will get an email to your email address: You'll get an email from Oprah's web people sending you an activation link that you will need to click on in order to get started. Then you can click on the above link and post your comments.

It sounds harder than it is, if you haven't done it before.
Thanks so much for your efforts.

Under Our Skin


If you haven't seen it -- Under Our Skin is a documentary on Lyme disease (if you search for it on Youtube you can find some of the trailers). It's now being show at some film festivals and will go to the theatres later in the spring.

My mom figures that Xian would make a good Oprah guest. And I'm now at the point where I say "whatever it takes" -- but something needs to be done. We're still living in a weird twilight zone where no one will speak those words (she has Lyme disease) and I'm made to feel like a crazy woman for trying to get the treatment and services that Xian needs.

No comments: