A movie about Lyme, and some celebrities who have it...

Hello....

Having a great week so far... Last week I was in some pain, but this week, feeling lots better. When I first started dealing with lyme, it was many painful days with the occasional "good" one. Now it is more like many good days, with the occasional "bad" one, or the occasional difficult week. In other words, I feel I am continuing to get better all the time, with the occasional setback - much like the two steps forward and one step back concept.... except I think I'm closing-in on three steps forward and one step back. Although you have to remember that for me, a "good" day right now means one where I'm at a "3" or less on the pain scale. I still can't do yoga or kayak - my true measures of getting back to well-being - but I am ever so much better and a "3" or less pain day makes me so happy! Apparently, I am easily amused, but that's okay....

I will say that in women's group yesterday I was able to sit on the floor on my zafu, which I haven't sat on comfortably for a couple of years. This required me to bend my knees behind me to sit on the cushion, which is a type of round meditation pillow. I was able to be comfy that way for about 20 minutes, which felt like quite a big success. After going through this healing experience, there are so many things I'll never take for granted again, like simply being able to get down and sit on the floor....

One thing that's helped me feel better in general is that I have started taking 2 each C and salt tablets at a time, rather than three. I was trying to get away with taking these supplements fewer times in a day, but I have found I feel better when I take smaller doses, more times in the day. Live and learn...

Today a friend sent me some info about Samantha Stosur, a young Australian tennis player who was sidelined by lyme in 2007, and who is back in the game in a big way, knocking one of the Williams sisters out of the running at the French Open a couple of days ago (you can tell we don't watch TV; I don't know which Williams sister is playing; and I really do enjoy tennis). Fortunately for Ms. Stosur, it seems she was diagnosed early and received prompt treatment which has enabled her to be back at top form fairly quickly. High fives for her!

I've also noticed that there are other well-known people who have dealt or are dealing with lyme disease, including authors Amy Tan and Alice Walker, actors Richard Gere and Parker Posey, singers Daryll Hall and Pete Seeger, and I even saw in the article mentioned below that President Bush was somehow associated with lyme, but couldn't find a follow up link to it (and it didn't say which Bush - daddy or dubbya), so not too sure about that one, and it's really just too hard to resist the urge to say "that explains a lot".... but then maybe I can say that and get away with it since I have lyme, too! (one thing's for sure, you gotta have a sense of humor). I do pray that all of these folks, as well as all others who are dealing with lyme, will soon be transformed and well if they are not already.

I have also learned about a movie that was released a couple of years ago, and am about to order it from Netflix. Anyone out there seen it? It's called "Under Our Skin" - some type of expose' on lyme disease, including some of the conspiracy theories (I love a good conspiracy theory!). Here is a little article about it....

See you in a couple of days,

Sukie (see article below)


What’s wrong with them?
Lyme documentary gets Under Our Skin
By DEIRDRE FULTON | September 17, 2008
FIGHTING BACK: The battle against Lyme disease.


"Once bitten: The fight over what is — and what is not — Lyme disease," by Deirdre Fulton

President Bush had it. Irene from The Real World: Seattle had it. Novelist Amy Tan, musician Daryl Hall (of Hall & Oates), and actor Richard Gere have all had it. Here in the Northeast, you can't go around the block without running into someone who's fallen prey to Lyme disease, or who at least knows someone who has. Yet for all this ubiquity, there's an aspect of the disease that's remained largely hidden — until now.

Released earlier this year, Under Our Skin labors to bring "the Lyme controversy" into mainstream conversation. That controversy, discussed at length in the piece that accompanies this one, is nowhere close to being resolved. Nor is it easily understood, though director Andy Abrahams Wilson does a good job of boiling down the salient facts, albeit from a biased point of view.

Wilson became interested in Lyme disease after a friend struggled with neurological problems and was ultimately diagnosed with Lyme. He quickly recognized that beyond the basic facts, there exists a severe lack of credible information about the disease.

“I was shocked about what I thought I knew about Lyme disease,” he writes in his director’s statement. “How I hadn’t taken it seriously, and how I knew few others did either. I was shocked that something with such far-reaching, life-and-death implications went so unnoticed.

“As with most mysteries,” he continues, “I soon found that conspiracy theorists filled the void.”

Under Our Skin goes into some of those theories, primarily to investigate the persecution of “Lyme-literate” doctors who believe that long-term (sometimes intravenous) antibiotic therapy is called for in certain cases. The documentary delves into whether or not the Infectious Diseases Society of America Lyme disease panel harbored conflicts of interest or plain-old narrow-mindedness when it issued guidelines for diagnosing and treating the disease — guidelines that suggest chronic Lyme infections don’t occur, and that it is dangerous to treat Lyme disease with long-term antibiotic regimens (as many people in the film did).

But most importantly, Wilson’s film focuses on several sick people who say they suffer from chronic Lyme disease — and who have found doctors who agree with them. Their stories are dramatic, scary, and heartbreaking. When he flashes quickly from one to the next, letting them share what they’ve been told is wrong with them, or how they feel about their sickness, it’s extremely effective.

Most arresting is Mandy Hughes, a beautiful young woman who was “diagnosed” with chronic fatigue syndrome, multiple sclerosis, and dystonia before she tested positive for Lyme. In uncomfortably long, lingering shots, Wilson shows us Mandy’s good days — when she smiles and laughs about the absurdity of her condition — and her bad ones — having a seizure on the couch, attaching a tube of antibiotics to a port in her chest, or fretting that her husband will get sick of her sickness.

The only problem with Under Our Skin is an absence of climax; Wilson moves from the mystery of the illness, to the involvement of the doctors and insurance companies, to the question of whether or not Lyme can be transmitted through sex or from a mother to her fetus, but never moves through a complete story arc. But perhaps that’s the point — the true tale of this multifaceted illness is far from its resolution.




Read more: http://thephoenix.com/boston/news/68413-whats-wrong-with-them/#ixzz0ppxxquV9