Lucy of Lucy’s Corsetry is helping me with a crowdfunding campaign on Indiegogo to fund my treatment for advanced Lyme Disease.  Without help from people just like you, I won’t be able to afford treatment, and there will be nothing to stop the progression of the disease.  So please, if you can, chip in a little something, even if it’s just one dollar.  If you can’t, please take a moment to share the campaign with the people you know.

Our goal is $18,000, but we actually need a lot more than the goal.  If we reach goal, it will pay for roughly 6 months of just the IV antibiotic treatment.  That doesn’t include any of the supporting medications, monthly blood tests, doctor visits, or any miscellaneous expenses related to my illness.

None of my medical expenses are covered by insurance.

The politics of controversy around advanced lyme disease are a very difficult barrier to receiving adequate medical care for the treatment of advanced lyme.  “THE CURRENT IDSA LYME GUIDELINES MISREPRESENT SCIENCE AND RESTRICT ACCESS TO CARE.” – from Why We Protest Against The IDSA on LymeDisease.org.

I have not worked reliably or had much income in more than two years, and even before that I definitely qualified as a “starving artist”.  I have not worked for an employer since September of 2011.  At this point I am unable to work at all, even on my own business.

I am not married, and live with a very good friend who is a PhD candidate at UNLV.  That friend is supporting both of us, and barely makes ends meet on essential living expenses.

Some people have already asked 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.