I had been hoping Lucy would post something on her blog about this! If she did before I missed it.

Don’t gloss over this.

This is the first “Update” Sidney posted, and she has posted many to answer a lot of questions.

“Some of you are already asking about why I’m not on medicaid or covered by disability, and really, I should be, but like most patients with advanced lyme disease, I am not. I am making efforts to gain coverage, but the odds of doing so are poor at best. The politics surrounding lyme disease and the guidelines used by the IDSA and the CDC mean that medical coverage is routinely denied to sufferers of advanced or chronic lyme, and disability is almost never granted despite the very real disabilities that occur among sufferers.

The important points about the controversy and the problems with the guidelines are explained by the experts at LymeDisease.org better than I ever could, so please go read their brief page Why We Protest Against The IDSA, and while you are there, I’d be grateful if you’d take a couple moments to sign their petition requesting that the guidelines be changed to reflect real science.

The controversy pages (there are lots, if you just plug “lyme controversy” into google) usually refer to “chronic” lyme disease. I currently have advanced lyme disease. Chronic lyme disease is when a person has been treated for lyme, but the infection remains and there is a relapse of symptoms after treatment, creating further permanent damage and requiring another round of antibiotic treatment. I don’t want to end up with chronic lyme, and I’d much rather just stay on the antibiotics long enough to take care of the infection with the first round of treatments, even if the treatment time is very extended.

If you want further proof of the lack of medical coverage for lyme disease, plug “lyme cost” into Google and see what you get. It’s the rare lucky soul who is covered for full treatment, not the norm.”

I was left speechless to hear about how a person could be stuck with such a horrible disease just because of a little technicality.  It actually scares me. Scares me a lot. What happens if a person can’t afford treatment? What will happen to Sidney, just one of many, if she can’t afford all the treatment she needs?   I plan on contributing (cutting it so close I know!) because corsetry is an interest of mine. I love the information provided by Lucy, and I had also learned a lot from Sidney Eileen’s website.

I also plan to look into what I can do to support anyone with Lyme Disease. Most especially in the area of how it’s classified, so that it will be easier for a lot of people to get help with it, rather than having to pay thousands and thousands out of pocket just in hopes that you don’t end up with permanent damage.   I plan on being very on this topic indeed.