The reason I started this blog was to share my story in an effort to help educate people about the horrors of a disease that has gone largely unnoticed and has affected me greatly. In many ways this blog has been an outlet for me and has also helped me to connect with some truly wonderful people, which were both aspects that I hadn’t really foreseen before I started typing. I am grateful for all that I’ve learned throughout my illness, but I certainly would never have chosen this path for myself, and I cringe to think of how many others walk it with me, which is why awareness is so important. It’s important because this all could have been prevented.
Misconception about Lyme Disease is rampant among the government, insurance companies, medical community, media, and the public alike, and it’s going to take a massive amount of work to set things straight among these entities. I have full faith that we will see a huge shift in the next few years though. May is Lyme Disease Awareness Month, and I plan to take full advantage of this month to help educate, answer questions, and raise awareness for a disease that has become a silent epidemic.
Last year the CDC reported 300,000 new cases of Lyme, which is up 10 times from the amount that had previously been reported, and also does not include the tens of thousands of individuals who remain undiagnosed or misdiagnosed with various other illnesses such as, Rheumatoid Arthritis, Multiple Sclerosis, Lupus, Chronic Fatigue Syndrome, Fribromyalgia, and more. The escalated number of cases reported may have been news to the public at large, but Lyme patients have been calling for revised numbers for many years now. Just to put the 300,000 marker into perspective, the CDC has reported 50,000 new cases of HIV per year, and in 2013, there were 232,000 new cases of breast cancer reported. This makes Lyme Disease more prevalent than HIV and breast cancer combined. Yet, only $9 million dollars of government spending was allocated to Lyme Disease in 2014 as compared to the billions that are thrown into cancer and AIDS research.
A recent study suggests that chronic Lyme Disease patients experience a lower quality life than those with most other illnesses, stating that, “chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis… The survey also shows that patients with chronic Lyme disease have high disability and unemployment rates. Over forty percent of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% of patients report that they have received disability at some point in their illness. This compares with 6% of the US population who are unable to work due to illness.” (LymeDisease.org)
Despite mounting scientific evidence toward the sophisticated nature of the Lyme bacterium and it’s ability to withstand intensive treatments, the existence of a chronic form of infection (chronic Lyme Disease) is still disputed among many medical professionals, and this is the root of the incredible injustice in patients’ rights and treatment options in the US, Canada, Australia, Western Europe, and elsewhere. All the while, the rate of Lyme Disease continues to grow exponentially each year.
My heart breaks for all of those left in the trenches with this illness, myself included. When emergency rooms won’t see you and countless doctors dismiss you as simply being depressed, it can be a hard road to travel. By treating chronic Lyme Disease, brave doctors run the risk of having their licenses revoked or being sued by unobliging insurance companies for the long-term prescription use of antibiotics, a common treatment for chronic Lyme. Research is limited because funding is so little. More and more people are becoming sicker and sicker with every passing day, and people are dying. The need for more health advocates who are willing to treat this disease is crucial, and the need for awareness and immediate change is dire.
It is for all of these reasons and more that I’ll be publishing a few more posts this month to answer common questions about Lyme Disease as well as some tips for prevention. This disease can pick anyone- there is no genetic precursor, diet plan, or healthy living style that can protect you from the bite of a teeny tiny tick. So know that this could happen to someone you know and love, it could even happen to you, but I pray it’s not so, and that is the reason I write.