Being the consummate research fanatic that I am, when I was diagnosed with Lyme last week, I took it upon myself to learn all I could about this frustrating and debilitating disease. Frustrating because it is often undiagnosed - a negative Lyme test does not necessarily mean you do not have Lyme. And debilitating because, when it is not properly treated in its earliest stage, it can become a life-long ailment, slapping the sufferer with labels such as Chronic Fatigue Syndrome, Fibromyalgia, and actually leading to Rheumatoid Arthritis (RA). In fact, the disease was discovered in 1975 in Lyme, Connecticut , when an unusually large number of children were being diagnosed with RA.
Lyme disease is transmitted through the bite of a creature that is so tiny that, even when it is engorged, it is smaller than a peppercorn. The 2 that I found on my abdomen were so small that I scratched them off (not at all the proper way to remover them!) thinking they were - well - not anything that was alive. I thought they could be new moles and the scratch test was my dumb idea of making sure that's what they were. The blood that smushing them produced (another really dumb thing to do) tipped me off to their true identity. Too much information? Sorry, but I am trying to help you and nothing short of brutal honesty will do. The ticks that transmit Lyme are generally black-legged deer ticks and are smaller than a pin head before they feed. They can only transmit Lyme after they have had what is called their "blood meal", since they spit saliva into their victim when they do so. In other words, if you find a tick on you that is not engorged, you are more than likely safe. If you do find a tick fastened to you or a loved one, the proper way to remove it is by using a pair of tweezers and slowly pulling it off. Once you remove it, do not handle or smush it like I did, since you can transmit its "poisons" onto your skin by doing so.
About a week after I was bitten, I was in South Carolina with my son's baseball team and noticed that the area surrounding one of the bites had broken out in a pinpoint-type rash. It covered a pretty large area, but since there was no bulls-eye, Lyme disease was nowhere on my radar screen. Lesson #1: there will not always be a bulls-eye shaped rash with Lyme Disease. Sometimes there is no rash at all.
Within 10 days after getting home from South Carolina, I began to get pain in my joints, in particular in the hips and arms, especially the elbows. My first thought? Arthritis. After all, both my parents suffer from it. And even though neither one of them had any symptoms of the disease until they were in their 70's (or in his 80's for my dad), I still thought that's what it must be. Until the headaches and stiff neck, and body-wide itching kicked in. Then I was just confused. By the time the tell-tale fatigue and light-headedness had begun to rear their ugly head, I was sure I must have contracted some kind of nasty flu. Especially since, when I wasn't on Tylenol for the pain, I appeared to be running a fever as well. It was only after the 12th day of this "flu" that the thought of Lyme even entered my mind.
I awoke that day - 2 Saturdays ago - to find something hard and rather large on my back. Like the fool I had been with anything tick related, I did not ask for help but reached and pulled the thing off. Imagine my surprise when I saw that it was yet another tick! A big brown one this time, with a white spot on its back, It's little headless body was squirming in my hand as I dropped it into an empty medicine bottle for future analysis. And it was then that I made the call to my doctor to test me and the tick for Lyme.
Curiously, it wasn't the big brown fellow that gave me Lyme disease. That one was a Lone Star Tick and happens to be a carrier of a disease called Southern Tick-Associated Rash Illness (STARI). Please read carefully the symptoms of STARI - fatigue, headache, fever, and muscle pains. Sound familiar? It sounds a lot like Lyme without the neck stiffness and itching. And guess what? There is no test for STARI. Like Lyme, it responds beautifully to a 2-4 week regimen of Doxycycline, but the poor souls who are struck with it are often left to suffer it out. The good news with STARI is that, unlike Lyme, it does not usually cause any permanent or long-term damage if left untreated.
Back to Lyme, it is estimated that approximately 50% of people who have it test negative because they either test too early (it needs a good 6 weeks to season in your system) or, well, just because the test does not pick it up. Comforting, isn't it? And the other cruel fact about Lyme is that after a while, even if left untreated, all the nasty symptoms will disappear, leaving the unsuspecting victim with a feeling of false security. Untreated Lyme will normally rear its head again some 6 months later, with muscle pain or swelling in the knees or other large joints, heart problems, such as palpitations, and/or weakness in the muscles of the face. Still left untreated, a year or so later, the sufferer can develop muscle weakness, numbness and tingling, and/or speech problems. Not to mention the mental symptoms - mood changes and depression, to name a few.
Why am I telling you this? Because if you live in tick-ville as I do and suddenly develop the symptoms of Stage 1 Lyme and they last longer than any flu (and NO ONE ELSE in your family gets it), get thee to a doctor. If the muscle aches and neck stiffness become unbearable and the fatigue so bad that it feels like you are pushing a huge boulder uphill and getting nowhere, AND you have found a tick on you at any time in the recent past, get on a regimen of Doxycycline. If the test comes out negative, you can stop the treatment if you wish. What harm can it do? If symptoms return, get retested. In fact, because of the prevalence of false-negative test results, get retested frequently. Lyme is a horrible disease. (Remember, if the tick was a big brown one with a white spot on its back and you get the symptoms described above, there is no test to confirm STARI, but the Doxycycline will bring you relief). I am convinced that Lyme is often undiagnosed and that many of the people who have been diagnosed with illnesses such as Fibromylgia and Chronic Fatigue Syndrome may actually be suffering from it. I am beginning to believe that those diseases are not actually diseases in and of themselves but symptoms of a bigger disease (such as Lyme). I also believe that some cases of Rheumatoid Arthritis, especially in young people, were predicated by untreated Lyme disease. This was the conclusion that the researchers in Lyme, Connecticut came up with in 1975.
Unfortunately, because we did not have much of a winter this year in many parts of the Eastern United States, there are many more ticks out there than usual. And it doesn't just take a walk through the woods to get bitten. You can pick them up watching a game on a ball field, doing yard work, or by taking a walk through a tree-lined neighborhood. To prevent tick bites when engaging in these activities, wear light-colored clothing (so you can see if any ticks have landed on you) and tuck your shirt into your pants and your pants into your shoes. I love wearing soft, loose, blousy tops and capri pants when I take my walks. Well, not anymore! If I had a bee suit, I would wear it at this point. I do love my walks, but where I walk and what I wear when I walk will never be the same again.
I hope all is well with you. Until next time, walk safely and wisely and watch out for those nasty ticks!