Wednesday, December 5, 2012

Lyme Disease in BC

Alex Lippert, 2012
The four young people featured in this blog post all live in our community and suffer from chronic Lyme disease. They all continue to struggle to get the health care they need.

What is Lyme disease?
Lyme disease is spread by ticks, some no bigger than a speck of pepper. They travel from animal to animal, feeding off blood. The bites can be painless and leave only a tiny mark that may not last very long.

Ticks on Vancouver Island may infect people with Lyme disease and the consequences can be very serious. [VIHA] The first sign of infection is usually (but not always) a circular rash. Stage 1 common symptoms include: fatigue, chills, fever, headache, muscle and joint pain and swollen lymph nodes. If untreated, the second stage of the disease can last up to several months and include: central and peripheral nervous system disorders, multiple skin rashes, arthritis and arthritic symptoms, heart palpitations, extreme fatigue and general weakness. Stage 3 - Chronic Lyme - can begin days or weeks after infection and if untreated or improperly treated, can persist for years or indefinitely.

JL, 2012
Click here to read about what you can do to reduce your chances of contracting Lyme disease.

The Issue
I have serious concerns about how Lyme is diagnosed and treated in B.C. We currently follow the IDSA guidelines on Lyme disease. The provincial health officer, Dr. Perry Kendall has stated on the record that he believes a chronic form of Lyme disease does not exist. As CanLyme Board Member and former MLA David Cubberley argues, the available scientific studies do not support such a categorical statement.

This perspective contributes to the perpetuation of flawed policies in BC that prevent chronic Lyme sufferers from accessing treatment that could help them.

confidential report by Dr. Brian Schmidt of BC’s Provincial Health Services Authority, that released through a Freedom of Information request in 2010 states that there is “growing evidence that LD is a persistent infectious disease….” Lyme disease can persist after the IDSA treatment period and therefore longer courses of antibiotics may benefit those with persistent symptoms.

Nicole Bottles, 2012
The Impacts are real

Nicole Bottles
18 year old Nicole Bottles was diagnosed with Lyme several years ago. Her symptoms were subtle at first and then progressed to headaches, nausea, and  joint pain. The symptoms worsened to include dizziness, memory loss and muscle pain. She was diagnosed with chronic fatigue, asthma, pneumonia/bronchitis and tested for Lupus, arthritis, eating disorder and more. Despite the fact that she had over two-thirds of the classic symptoms of Lyme disease, Nicole and her family could not get medical doctors to seriously consider this as a possibility. 

Here is a statement from Nicole:

Even as I became sicker and sicker, not able to walk or remember things, and in excruciating pain, I was still being denied care in Canada. The doctors here had all but given up, and I was supposed to get on with my life and ‘start living with my disability’. My family physician actually threw up his hands in frustrating and said, “Well, all the tests come back negative and I’m not sure there’s anything else I can do…”. In a last-ditch effort, I was taken to see doctors, who would end up turning my life around, in Seattle, San Francisco, and finally Connecticut, where we lived for 10 months. There are very few Lyme-literate doctors (LLD’s) in North America, but I was very lucky to end up seeing several of them. I have no doubt in saying they saved my life, and have started to put me back on the path to health; I am ever grateful for their care and support. 

 You can read more about this remarkable young women on her blog, Bite Me.

Jean-Luc Giroux
Another young person suffering from Lyme disease is 26 year old Jean-Luc Giroux. He has suffered with Lyme disease for five years. His slideshow explains his journey and where he is at now.  

Alex Lippert 
23-year-old Alex Lippert isn't sure exactly when she was infected, but it was most likely when she was seven or eight. She lived in Southern Ontario at the time and spent her summers in Saanich. She loved riding horses and playing in the woods. Alex had many health challenges growing up, including painful and weak joints, and constant headaches. She also struggled with severe ADHD and chronic depression.

Alex graduated high school and began studying Aerospace Engineering at University in Florida in 2007. However, her health further deteriorated and she had to drop out after completing her first year and return home to Saanich.

At the end of 2009, she finally received some testing for Lyme disease and got positive results from a Elisa test. However, the BC medical system doesn’t recognize chronic Lyme and it does not allow doctors to prescribe comprehensive antibiotic treatment. This has forced many families into great financial hardship as they try to cover the costs themselves.

Alex’s family instead pursued and paid for treatment in the US, first in Washington and then in California. There have been some physical improvements, but Alex remains in constant pain and lives in a mental fog.

She and her family continues to fight for the care she desperately needs.