When Dr. S. told me that I contracted Lyme at age 24, I felt compelled to search through all my photographs when I got home, to see just where I had been that year. I guess I had forgotten just how active and adventurous I once was, because I had travelled a LOT of places at that age: Bellingham, Portland twice, Seattle three times, the Gorge, Tacoma, Wenatchee, Vancouver, the Oregon coast and Vegas. Plus I played softball 3 seasons out of the year, in several cities. I could have been bit anywhere!
Last weekend I visited a new doctor here in Olympia, as an alternate route to pain management. He asked where I grew up and when I told him Eastern Washington, he questioned whether I had been around the Gorge. Apparently ticks are very prevalent there, and he has been made aware of many cases from that area. I couldn't help but think of my journey through time via photograph. I HAD been to the gorge that year! In 2005, a friend and I went to the Sasquatch festival. And let's just say there may have been enough alcohol consumed that weekend to not really notice whether or not I had been bit by a tick. ;)
Obviously it doesn't really matter much where it happened, but it does give me a piece of mind to know that I've narrowed it down a bit. I'm also glad I need to be on the lookout the next time I'm at a concert there! Because as you may or may not know, it's possible to contract the disease more than once.
My goal for this blog is to increase awareness about the dangers and prevalency of Lyme Disease and to help others who may have been misdiagnosed, or who can't figure out why they are so sick. I went through so many years of not knowing what was wrong with me, and spent way too much money and time on doctor visits, procedures and pills. I wish that on no one, and will do whatever I can to help anyone to avoid this same path.
Growing up in a town surrounded by sagebrush, I knew about ticks. I was aware of the warnings to wear long sleeves and pants, and to check your body for the little buggers after playing in the dry brush. But I had no idea of the harm they could bring. I don't think I even knew about Lyme disease back then. And even if I did, I'm pretty sure I would have considered myself invincible to such a thing.
The scary fact is, though, as aware as you might be about your surroundings - less than 50% of people who are bit are even aware that they were. The initial symptoms are very flu-like in nature, so many people pass it off as that. Ticks can be as small as the period at the end of this sentence, and who's going to spot that? They exist in all 50 states (and worldwide) and can be found in your backyard, parks, forests....literally everywhere. And now they are finding many other carriers of the disease - fleas, mosquitoes, and even spiders. Many doctors will tell you that Lyme doesn't exist in your area. Don't buy it!
To make matters worse, Lyme can be transmitted sexually, through organ donations, blood transfusions, and passed to your children. It is not uncommon for an entire household to test positive for Lyme, yet it's unlikely that two people will have identical symptoms. Lyme is become a HUGE epidemic, yet the only ones that really know a lot about it are the people who have it (or their loved ones), who have succumed to hours upon hours of research, because not even their doctors are up to speed on this horrific disease. (A dead giveaway is when your medical practictioner calls it "Lymes" Disease". This bugs me almost as much as it does when people call me Brianne or Briana. Ha!
I won't even begin to get into the politics of the disease and how hard the government and insurance companies are working to cover up the truth. Even the media is distorting our image of Lyme. We finally have celebrities that are revealing that they have been diagnosed, yet nearly every article or blurb you read, tells you that they were "cured" (THERE IS NO CURE HERE, PEOPLE) by a few rounds of antibiotics and rest. The only way that is possible is if it's caught right away, which almost NEVER happens. Although with celebrities, at least they have the money and connections to get the treatment they need right away, so I guess it's more likely with them than with the rest of us unfortunate souls.
Here's a link of some celebrities who have contracted Lyme, in case you're interested!
Think about George W. Bush. Articles everywhere indicate he was treated in 2006 for Lyme, but continue to talk about it as though it's a temporary disease. Now all of a sudden he has a "form of Parkinsons Disease" and is in a wheelchair. Coincidence? I don't think so. If you know enough about Lyme, it's easy to see that all the signs of him still having the disease are there. And all those speech blunders that he's so well known for during presidency? I'm not saying this is a fact for him, but Lyme can (and usually does) have that effect on your brain too.
Obviously I can get riled up about this, and you'll find that most people who have undergone years and years of hell with no answers, no help, and a bucket full of lies and ignorance probably feel the same way. Which brings me to my next point.
Instead of being bitter from being one of the unfortunate ones who went through so many years of being misdiagnosed and undiagnosed (well, at least I'm really trying not to be), I've decided to use my story to help those who are struggling in the same way. I've always felt a certain compassion for fellow mystery sickies, but recent events have compelled me to work even harder at using my miserable experience for the good of others.
Back in Idaho, during my 2nd week of treatment, I had a guy introduce himself to me in the waiting room, who happens to be related to a family from my hometown. He told me that my blog was the reason he was there. And come to find out, he had been misdiagnosed with MS for something like 10 years. As much as I hate to hear about another person falling victim to this disease (and be told they have something else for so long), I was so encouraged to know that my blog is what helped send him in the right direction.
I recently heard of a similar thing happening with one of my sibling's coworkers, who had actually donated to my fundraiser. She read my blog, decided to visit my doctor, and ended up being tested positive for Lyme. I've also gotten a lot of emails through my blog, and even someone who contacted me from a negative Yelp review from a doctor, in desperate need of relief from pain. There are so many people out there who need direction - help that they aren't getting from their doctors!
This is not being said to toot my own horn, although I am very pleased to know I have been able to use this negative thing in my life to help others. Instead, I want people to realize just how prevelant this disease has become. It's not something that is difficult to get, and easy to treat, much like doctors and the media are leading us to believe. You or someone you know could very well have it, or come to have it.
I also can't stress enough how frequently people are being misdiagnosed by doctors. As I've mentioned before, Lyme Disease is known as the "Great Imitator". With hundreds of different symptoms, no case the same, it's difficult for MD's to recognize. If you have test results that don't quite fit your symptoms, or if you've been diagnosed with any of the following, please know there is a chance you could actually have Lyme (this is only a partial list):
- Rheumatoid Arthritis (or any kind of arthritis)
- Fibromyalgia
- Raynaud's Syndrome
- Chronic Fatigue Syndrome
- GERD/Acid Reflux
- Multiple Sclerosis
- Lupus
- ALS
- Alzheimer's Disease
- Chron's Disease
- IBS
- Parkinson's Disease
- Sleep Disorders
- Thyroid Disorders
Most people are aware of these diseases, and even understand the seriousness of them. What they don't realize, is someone with Lyme can have the symptoms of ALL of these diseases. There has been a lot of research done, correlating Lyme Disease to those listed above. I'm not saying you definitely have Lyme if you have been diagnosed with any of these, but the possibility is definitely there.
Lastly, if you HAVE been tested for Lyme and were told you don't have it, don't give up. A negative test means nothing - I had to have THREE tests done before I got positive results. The standard blood tests that primary doctors order have been proven to be unreliable. If you have any kind of inkling that you may have Lyme, I highly encourage you to see an LLMD (Lyme Literate MD) who can get you going in the right direction. And of course, as always, don't hesitate to contact me with any questions, because I am more than happy to help!
