Once again, it is time for action. The PA Senate is primed to consider a bill that could protect doctors from sanctions, educate the public, and otherwise provide support for improving information about and treatment for Lyme disease in this state. If you read this blog and live in Pennsylvania, please help us!
Notice that I did not say you have to have Lyme disease. Even if you are healthy, PLEASE let your senator know (or the one nearest to you on a committee that can influence what happens to this bill). Lots of useful information about who to contact and how can be found on the LymeActionPA website.
Below the fold is the letter I just emailed in support of this bill. We need you to help with the same. Please do it now, before it’s too late and the bill is dropped.
Cc: firstname.lastname@example.org, email@example.com
Dear Senator White,
I understand you recently attended a hearing about Senate Bill 1199, the Lyme and Related Tick-Borne Disease Education, Prevention and Treatment Act. I am pleased to know that you are learning about Lyme disease, because it is very important to me to see an increase in awareness in Western PA on the topic.
I myself contracted Lyme Disease right in the middle of Pittsburgh, in Frick Park, sometime in 2006. I don’t know the exact date because my illness came on gradually, and it took over a year until I was diagnosed. By that time I had verbal decline and confusion, clumsiness, pounding headaches, great fatigue, and many other symptoms that made it very difficult for me to continue fully in my position as a pre-tenure professor or as a parent. I was diagnosed by a massage therapist (none of my physicians even thought of testing for Lyme, though in the end I was fully CDC positive). I was treated by UPMC docs who told me 6 weeks of IV antibiotics was more than enough even though I was symptomatic still at the end. I then had to travel out of state (to NY) to find an experienced treating doc. I was in treatment for almost 2 years, during which time I had to go on disability (part time), use a cane, reduce my travel, and at one point was even considering a wheelchair. I slowly recovered, and at the end I went into remission. In the meantime, my son became ill and was also misdiagnosed. He is also being treated in the NY area now. The good news is that I am full time again, and became a tenured faculty member yesterday! You can read about my ongoing experience with Lyme on my blog: https://gotlyme.wordpress.com
I am glad that my story does not end in tragedy, but there are so many ways in which it could have gone better. Better educational materials might have helped me avoid exposing myself and my son (my daughter was just diagnosed as well, but that may have been congenital). Better educational materials for doctors about the prevalence in PA might have led to an earlier diagnosis. If doctors could treat long term without fear of reprisal, maybe more doctors in the area would have the experience necessary to help people with complex cases like my own. Imagine if my original docs had simply extended my treatment by a month or two, until I was asymptomatic. It might have spared me the next 2 years of pain! Also, although I had read widely, I had to search to find even one doctor willing to talk reasonably with me about the pros and cons of long term vs short term antibiotics for treating lyme. As a result, after my IV treatment ended, it took me 6 months of trying to read and learn about the medical side of this to make the decision to go back into treatment.
Thank you for reading my story. Now read this: I spent the time to write this primarily because I want to ask you to consider the bill for a public hearing. This bill is very important to me and many other folks in PA. Lyme disease is only spreading, and its impact is serious. Not only that, but it is a tragedy that a city as rich in medical knowledge as Pittsburgh does not have one doctor with experience treating cases like mine, cases which continue to become more and more prevalent. Pittsburgh loses an important part of its workforce when people can no longer do their jobs. It loses financially when we have to travel elsewhere for treatment. And it loses prestige when its scientists fail to lead the leap forward in the treatment and understanding of this condition. Scientists elsewhere are over-turning dated, narrow information about Lyme disease. Why are we so far behind?
Jennifer Mankoff, Associate Professor firstname.lastname@example.org
NSH 2504A, x268-1295, Human Computer Interaction Institute, CMU
Lyme blog: gotlyme.wordpress.com