What’s Happened
After a long escalating series of intermittent symptoms, last January Sini ended up in the ER because she couldn’t breathe, was experiencing extreme heart palpitations (not anxiety), and an intense pressure and tingling in her arms. She was also dealing with extreme exhaustion, a days-long migraine headache, and mental confusion. Three days at Beth Israel revealed zero answers about what was going on; the doctors ran tests, shrugged, and sent her home. Her symptoms continued and worsened, with new ones adding almost every day. After a month of misdiagnoses and uncertainty, she was diagnosed (by a specialist) with late-stage Lyme disease.
This was initially confusing. Most of us know Lyme as something that is easily treated with a short course of antibiotics. And acute Lyme is. But if it isn’t caught, it becomes a whole other nightmare – an insidious bacterial infection (most comparable to syphilis) that infiltrates all body systems, and has the capacity to hide from antibiotic treatment in the large joints, heart and brain, only to reemerge and reproduce for years and years. It’s frequently misdiagnosed, and the testing for the disease in late stages is catastrophically unreliable (do you suspect that our medical establishment is corrupted by corporate interests and in league with big pharma and insurance companies, but unsure exactly how? Well, you’re right). There are a bunch of links below this message where you can find more information about late-stage Lyme, and its coinfections.
Sini –more than anyone we’ve ever met – has the capacity to work and function through all kinds of obstacles and discomforts. This illness has debilitated her. She regularly suffers from a list of 65 symptoms, including neuropathic brain fog, arthritic joint pain (she intermittently needs a cane to walk), extreme fatigue, air hunger, migraines, blurred vision, rashes, and more than you need to see listed here. The disease flares, and in the short (relative) respites between flares, she works grueling hours trying to squeeze in as much work as she can toward finishing The Punk Singer.
Sini’s Treatment
For the past 15 months, her doctor has had her on heavy and rotating doses of antibiotics, supplements, malaria syrups – so many things. We have reached a point where the only really promising treatment was the insertion of a PICC line (tubing that goes in her arm, and travels to just above her heart) to administer high doses of IV antibiotics, in concert with a cocktail of oral medicines. This treatment is extremely expensive (the reason she waited so long to try it). Her insurance covers only 28 days of treatment, and then it all becomes out-of pocket. Sini has completed that first month, and the treatment is helping. Her doctors insist that she most likely needs six to nine months of treatment. Between her doctor visits, medicines, and medical supplies, the full cost of her treatment going forward will be at least $12,000.
$12,000 is a lot of money. Sini doesn’t have it, we don’t have it, and Sini’s family doesn’t have it. Sini is loathe to ask for help (especially after running last year’s successful Kickstarter campaign for the film), and so we are taking over. We have set up this campaign to try and raise the funds for her treatment. It’s a 60-day campaign, and we are hoping to offer a performance event at the 30-day mark to celebrate the people who’ve pledged, and to raise awareness about the ongoing campaign. Any amount helps!
Other Ways You Can Help
Some people just can’t contribute financially, and we totally understand! But that doesn’t mean you can’t help:
- Please get the word out and make some noise about our campaign. There’s a lot of people out there who have been touched by Sini’s work, who may not know her, or any of us, personally. The wider we spread the news of the campaign, the more likely it will reach them.
- Volunteer to help plan and/or participate in the mid-way performance event. We need help securing a venue, booking talent, and otherwise working out the logistics. You can email Melissa (Sini’s girlfriend) about this: melissafebos@gmail.com
- Check yourself, and your loved ones, for ticks!!! The unseasonably warm winter has created a huge surge in the tick population – you do not want to contract Lyme; trust us.
Thank you so very much for taking the time to read our campaign page and supporting Sini!!!
Love,
Melissa Febos & Tammy Rae Carland
with
Samuael Topiary, BN Pasek, Johanna Fateman, Michelle Tea, Tara Jepsen, Victoria Libertore, Nicole Lanzillotto, Anna Jacobs, Kyoko Nakamaru, Moira Morel, Natalie Agee, Cooper Lee Bombardier, Shelly Oria, Susan Herr, Shannon Lynch, Charlotte Biltekoff, Anne Hall, and Sarah Gina Jones.
MORE INFO ABOUT LYME:
www.ilads.org (Info about Lyme disease and its co-infections)
www.lymedisease.org (More info)
www.underourskin.com (This is a documentary about Lyme, and it's about the only one, and really good)
www.lymeinthecoconut.wordpress.com (Kyoko Nakamaru’s blog about her Lyme war)
http://www.youtube.com/watch?v=reqyYSAFb9I (an excerpt from Dr. Phil’s recent show on Lyme)
http://www.huffingtonpost.com/leo-galland-md/lyme-disease_b_1456396.html (An article by one of Sini’s doctors about how to prevent Lyme)
