Friday, 04 May 2012 00:00I just finished reading the letter from the office of the governor in the Manhasset Press [April 26] entitled “Vacation in New York This Summer.” I feel there was extremely important information not mentioned. Yes, New York is a beautiful state, however, please read on and be careful this spring and summer season as you head east or to various other places along the Eastern Coast whether for a vacation or to watch your child participate in a sport on a field.
I had just turned 50, training to run a half marathon, and had passed my physical in May 2011 with flying colors. Then in August 2011 this all drastically changed. After completing a seven-mile run, I headed to the grocery store. While shopping, I was hit with a sudden pain in my legs, with extreme pain in my knees and numbness in my feet. It seemed to pass, however, over the next week I began having many strange and disturbing things happen to my body. I lost total feeling in my feet, had extreme pain in my knees; making it hard to walk up and down stairs, pins and needles up and down my legs, ear pain, muscle spasms that could be seen pulsating on the outside of my skin, jaw pain, teeth pain, skin rashes – and this was only the beginning. As time continued, so did my symptoms, causing pain that I have never, ever experienced before and could not accurately explain to any one person.
As this was unfolding, so began the doctor’s visits (about 20 doctors in all), CAT scans, MRIs, spinal tap, all in attempts to find out what was happening to me. After much anguish and misinformation the diagnosis was Lyme disease.
I never saw a tick on me, and I never developed the so-called bull’s eye rash. The blood tests came back indeterminate for Lyme, not meeting the CDC criteria for Lyme disease, however, in reality, there are no true blood tests to prove Lyme disease. The test is for the antibodies to Lyme bacteria that many never develop, or by the time you are tested for Lyme, the antibodies have either not been produced by your body or already left your system. Serologic tests are not expected to become positive until several weeks after the tick bite so the timing for a blood test has to be exact which is nearly an impossible feat.
Instead, if you develop unusual symptoms and pain that you cannot explain and seem to perplex your doctor, you need to find a Lyme literate doctor, a physician able to diagnose you based upon your symptoms. Through my experience I discovered many doctors are not educated in Lyme disease which will result in a loss of precious treatment time along with misdiagnosis – a virus, possible multiple sclerosis, fibromyalgia, rheumatoid arthritis, and the list goes on and on. Upon contracting Lyme, time is of the essence. If treated with proper antibiotics in a timely fashion, it can be contained and possibly quickly cured. If left to run rampant in your system, it can and will cause extreme damage and pain and may be with you for a long time.
The Wall Street Journal has noted that this is going to be a terrible Lyme disease season due to the warmth we have experienced this past winter. The warmer weather has prevented the tick die-off that usually occurs during the winter months.
Lyme disease is actually an epidemic that goes under-reported from the Center for Disease Control due to the lack of proper testing to prove the true number of cases in the United States. There are steps you can take to avoid a tick bite particularly in eastern New York, New Jersey and Connecticut where ticks are a huge problem.
1. Spray your property with insecticides that target the rodents that carry ticks (mice). Spray the perimeter of your lawn at any areas adjacent to woods and underbrush. Treat shrubs near the house that may serve as a habitat for small animals. The best time to do this is late spring and early fall.
2. Wear long pants when possible. Wear light colored clothing so ticks will be easier to spot. Smooth materials are harder for ticks to grab onto, such as a windbreaker. Ticks can be the size of a poppy seed so you really have to look for them.
3. Tick repellents that contain “permethrin” are meant to be sprayed onto clothing. Insect repellents that contain “DEET” can be sprayed directly onto your arms, legs and around the neck. Do not use any repellent over wide areas of the body, as they can be absorbed causing toxicity, especially in younger children. Repellents evaporate quickly and need to be reapplied.
4. Ticks are intolerant of being dried out. After being outdoors, place clothes in the dryer for a few minutes to kill any ticks that may be present.
5. Complete a full-body check on yourself once you return from any outdoor activities and shower after being outdoors for any length of time.
My good news is I have found a great team of doctors, have an amazingly supportive family, great friends, a few angels, and the grace of the good Lord. I still have a journey ahead of me, but am very slowly improving. I have been very private about this journey, however, I share this in the hope you read this and take note of what you can do this spring/summer to have a wonderful, healthy, outdoor season and avoid this horror that I, along with many, many others, have come to know as “Lyme Disease.”