*Originally published 5/7/18*
Yesterday was my Lyme-a-versary! Six years. Wow. I never thought that I would still be sick six years later, but here I am. Instead of making this a sappy post about how much my life has changed and blah, blah, blah, I have decided to educate you. I have noticed in the past six years that there are many misconceptions out there about Lyme disease. So with the help of some of my Lymie pals, we are here to set the story straight.
• Everyone gets a bullseye rash. Not always, pals! Contrary to common belief, finding a bullseye rash, or tick for that matter, is not very common. Out of my support group of over 400 people, I would say maybe-maybe- 20 of them every saw a tick or a rash.
• Just because I have a good day, I am better. Lyme disease is a very tricky disease. One minute I can feel great, and literally two minutes later I am paralyzed. I say I live my life minute to minute because that is literally how the Lyme causes things to change. So no, just because I have a good day, does not mean that I am better.
• Lyme disease is uncommon. Nope! Lyme is way more common that you think. In fact, they just released a study saying that disease from ticks and mosquitoes are 3x more likely than in the past. So if they used to say 300,000 people get Lyme each year, that could mean the number is closer to 900,000.
• The tests are accurate. So, so inaccurate! In my opinion, the Lyme tests are so inaccurate they should just be discontinued. I know a woman who had a negative test in the morning, and a positive test in the evening. That is how inaccurate they are. The testing is so inaccurate that many states, including Maryland, have passed laws saying that doctors must inform patients that if they get a negative Lyme test, they can still have the disease.
• One round of antibiotics will cure you. Wrong. There is no cure for Lyme disease. And if the disease has reached the chronic stage, like mine, then it can take years of treatment to get well. The best analogy I was given is this: giving someone with chronic Lyme disease 2 weeks of antibiotics and saying they will be fine, is like giving someone with stage IV cancer 2 weeks of chemo and saying they will be fine.
• If you do not get symptoms right away, you are fine. If you see a tick or a rash, but do not get symptoms right away, you should still get on antibiotics. The Lyme can be hiding in your system just waiting for the perfect moment to attack. My doctors think that I had Lyme for up to 10 years before I started showing any symptoms. 10 years.
• You cannot die from Lyme disease. Unfortunately, false. The suicide rate with Lyme sufferers if staggeringly high. Living in constant pain with many people, including doctors, telling you you’re crazy, is unimaginable. In addition to deaths by suicide, though, Lyme patients can also die from their symptoms. I just read about a girl with Lyme who drowned in her tub because she had a Lyme-induced seizure. Lyme disease is a real, serious, life-threatening disease.
• Lyme is only in the northeast US. Heck no! Lyme disease has been found on 6 of 7 continents. They also recently tested some penguins that had the Lyme bacteria in them. In my support group, I have people from not only all 50 states, but 14 other countries as well. I once had a doctor say “do they think the ticks see the state border and say ‘oh crap we cannot pass into South Carolina y’all’?” No. Because that is insane. So if a doctor tells you that you cannot have Lyme because you “don’t have that here,” tell them ticks don’t care whether or not they are crossing a state border, or have a passport.
And finally, the most important misconception:
• It is Lymes disease. NO! Although I will admit I used to call it that before I got sick, but I quickly learned there is no ‘s’. In fact, someone recently said “you cannot have more than one Lyme disease, there is only one.” Lyme disease. Lyme disease. LYME disease.
Thank you to Megan, Greta, Katie, Marissa, and Brooke for the awesome misconceptions!
Now I hope these will no longer be misconceptions, and the world will continue to get more and more educated and aware of this crazy disease. Happy Lyme disease awareness month!
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