Sunday, March 15, 2009

Lyme in the Media

Lyme has been in the news lately -- though unfortunately due to tragic reasons, a case where there was a shooting and the shooter is reported to have neurological Lyme:
http://www.usatoday.com/news/nation/2009-03-08-church-shooting_N.htm
What's been interesting is tracking how often the Infectious Diseases Society of America (IDSA) keeps being quoted (and offering interviews) to deny that Lyme could produce severe neuro psychiatric symptoms. Well, having lived with Xian through the worst of her neurological issues, to me it doesn't seem implausible. The denials from the IDSA camp seem to be of the "they doth protest too much" variety.

Whether it's related at all, the producers of Under Our Skin have sent releases to Lyme organizations mentioning this:

On The Marc Media Update_*: *UNDER OUR SKIN, *the documentary that
investigates the untold truth of Lyme disease,* * will be featured on
"The Doctors", a nationally syndicated TV show, taped in LA.

They are asking for people to submit questions about Lyme disease for their panel of
doctors to talk about on the show. They also want to hear your stories.
Please ask them to do an entire show, not just a segment on UNDER OUR
SKIN and the seriousness of Lyme disease. If you have not seen
the show - check your local listings. It's syndicated so it is on
different times and different channels depending on where you live.
Please spread the word and ask people to write in. The taping is next
week so there is not much time. Thanks again for your support. Here
is the link: *http://tinyurl. com/arhjpg

----

I really hope that the show presents a balanced perspective and includes stories that might help people before the point that Xian had to get to.

Things don't look too optimistic for the Toronto Lyme specialist referral. The other Alberta family was unable to get an appointment for their son, and the reason was because he was out of province. So, now wondering about how we'll get Xian's treatment to the point where she's fully well and unlikely to relapse. It seems the alternative is a lot more time spent in Seattle and a lot more money spent on meds out of pocket. It's too bad Edmonton isn't a border town, as at least that aspect would be easier. Quite a few of the Vancouver Island and Vancouver folks get their medications in Bellingham when they can't get Canadian doctors to support treatment. Have been hearing some 'buzz' about a class action suit that some Vancouver Island parents are spearheading (their daughter has been in Connecticut for months, getting treated after being dismissed in BC -- here's a link to her story:
http://www.bclocalnews.com/vancouver_island_south/sookenewsmirror/news/41033109.html

Unfortunately, to this point it seems that nothing else has made much of a difference and when kids like Xian who are responding to treatment in ways that are nothing short of miraculous have no guarantees of treatment to the point of full recovery, I start to think that legal action is maybe the only way, sadly.

Feeling rather grumpy about our recent issues with the pediatrician, especially when the medication being pulsed (and which we can only get half of what the Lyme doctor wanted) does seem to be getting rid of some symptoms. I know if Xian had TB or cancer she'd get more than adequate care, but because it's Lyme (and no doctor will even name it that) the only way she will get barely adequate treatment is for me to continue to fight for her. And what will happen to the other kiddos who are unlucky enought to meet up with a tick this spring? Sighhhhhhh

1 comment:

Susan said...

I finally found your blog again...It is good to see progress, but oh so frustrating to deal with the medical establishment. I'm doing the same here with Autumn...who is showing developmental issues that may be medical, may be educational, and no two people agree on cause, diagnosis, or treatment. SOOOooo frustrating.

Question: Could you have the Washington doctor write your prescription to be filled in Washington and shipped to Canada? I know there is some contraversy surrounding this, but without health coverage, I've often had to go overseas/out of country to get my meds affordably. Just a thought...

Wishing you the best,
Susan
Mother to Autumn and Jakob (5)