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Lyme Disease: A Right of Passage

Ticks don't care if you're an Islander, a seasonal resident or a day-tripper!

As I've mentioned in past columns, I am not a full-timer on the Island, but I do own a small residence in Oak Bluffs, my own little dream-come-true! Over the years, there's been some scary stuff associated with this idyllic island—that is, enough to deter even the most infatuated visitor. 

What am I talking about? Oh, the shark sightings, the tularemia-carrying rabbits, the rampant poison ivy, predicted tsunamis and, worst-of-all, the Lyme-disease-carrying deer ticks! President Obama: Do you really want to come here?

All kidding aside, it was only three years ago that I had my first, and hopefully last, bout with Lyme Disease! Here is my story, which is a little unusual and hopefully may be instructive to others.

First of all, let me say that I never had the tell-tale bulls-eye rash. Not in the traditional sense, at least. What I did have, and this was only remembered in retrospect, was a small area on my hip that was a different color from my skin. It looked a little like cellulitis, except it wasn't tender to the touch or even painful. It looked a little like sunburn, but was in an area that my bathing suit would've covered. Let's just say, I noticed its presence, thought a little about it and then promply ignored it. It was not circular, and had no defined boundaries. But, you guessed it, that was my bullseye!

The time of year was September. We had come to Martha's Vineyard with my son who was conservatory-bound, and as his school didn't start until October, it gave us a chance to vacation a little later in the season. I did at one point do a little gardening, but I had my hair tied up and under a hat, long pants and long sleeves on, and didn't venture into any deep woods, just my own yard. There were no apparent tick bites, no itching or nagging soreness on my body.

Fast forward to October, and the mass move of furniture, suitcases, books etc to mid-town Manhattan. I was particularly excited as we were staying in New York for almost a week and would get to explore the city with my son, prior to his exodus from the nest! I had so many plans! We had booked a nice, historical bed and breakfast in Bedford-Stuyvesant, so that we would be able to park the car on the street and take the Metro back and forth, exploring both Brooklyn and Manhattan. It was pretty hot and the train was a bit stifling but the first day went without a hitch.

By the second day, I was starting to feel a little tired, a little draggy and my neck started aching at the base of my skull and emitting upwards. It was kind of an incessant dull ache.

That evening, our second at the B&B, I started to get a headache, so I took some Tylenol and went to bed early, something totally out of character for me when I am in NYC. By 1 a.m., I awoke with the most agonizing neck and headache that I've ever had. We're talking  holding-my-head-and-rocking-and-saying—"Ow-Ow-Ow" kind of pain. Now, I might mention that I already have Rheumatoid Arthritis. Yup, I got the juvenile form of it when I was 19. I am no stranger to pain, but this was something different.

I told my husband I needed to go to an ER, because I thought I was either having a major arthritis flare-up, or had thrown out my neck somehow. We went to the closest hospital to the B&B, got really lousy service with a long wait time and were sent home with the muscle relaxant Flexeri, and the diagnosis of a "probable pulled muscle".

I spent the next two days, trying to help my son move, popping Flexerils left and right. By day's end I was a very spacy and sleepy sick person, barely able to walk up and down the stairs that led to the subway. I was dragging my body around, and the pain was still there!

That night, another round of an ER occured as I felt, in my gut, that I did not have a pulled muscle—it was something much worse. Again, I went through another "work-up." X-rays this time, with no result. I was almost out of Flexeril and Tylenol and, even worse, was ready to go home. This was totally out of my norm, for not only do I never want to leave New York when I'm there, but I was also OK with leaving my only son, "my baby," behind ahead of time.

The night before we left, I had called my rheumatologist (yes, I have his cell phone—one of the priviledges of being a 25-year patient) and he told me to come home and go to the Boston Medical Center's ER as soon as I got back. Again, in a Boston ER,I was given a non-specific diagnosis, some pain killers and sent on my miserable way.

The turning point came when I again called my rheumatologist (God bless him) insisting that I must be having some neck- and head-specific joint flare, and he fit me into the schedule. As I sat up on the examining table, he went to confer with his associate, a doctor who is incidentally a Lyme Disease expert. He told me to smile. When I did, he noticed that one side of my mouth did not raise up as high as the other. "She might have Lyme Disease," the doctor said. "Why don't you do the titre on her?"

The titre takes a number of days to come back, so as a precaution, they put me on the antibiotic for Lyme Disease and told me they would call me when the result came in. A few days later, the doc called to say I was positive for Lyme! I stayed on the Doxicycline for one month, started feeling better almost immediately and my partial facial paralysis (which was ever so slight in the first place) went away. Follow-up after the month was over deemed me as cured!

So, what is my point? Well, I had no indication of a tick bite, no bulls-eye and did not become sick for over a month. But there was no denying that I was very, very sick! Strangely enough, because I had rheumatoid arthritis, I did not feel the achiness in my joints, because I always have it to some extent.

But there was no denying that headache—almost like a spinal headache, probably like a meningitis headache. I think the exhaustion and fatigue came on first and then the excrutiating pain.

I'm not telling you to be paranoid, but be on the alert for signs and symptoms that may not be on the usual lists issued on the Internet.

I'm also not trying to deter people from coming to the Vineyard, but the statistics show that one in five full-timers and one in 10 seasonal residents have contracted Lyme already. Make sure to cover yourselves with tick repellent and just be aware of your body. I probably should've gone to see the doctor for that strange discoloration of my hip right away, but thought I was being a hypochondriac.

Once you catch Lyme Disease, you can get it again; there is no immunity that results from having had it.

So now, when I come to the Island and walk across tall grass or contemplate a hike on one of the walking paths through the woods, do I pause before doing so? You betcha. Will ticks deter me from coming to Martha's Vineyard or even sell my precious house? No way! This island is too beautiful, serene and nurturing to ever part with it! Ticks be damned!

Fred Roven July 19, 2011 at 03:25 PM
Someone should probably have fact checked this article before posting. There is no test for Lyme that can show conclusively that someone has contracted a disese which comes in many forms from a deer tick. No qualified physician would ever use the phrase "positive for Lyme". As far as the deer tick, any blood sucking insect that has fed on an infected deer or on any other infected species can pass on a bacteria that will cause a rise in titre count that may or may not indicate the possibility of contracting one of a number of illnesses lumped into a diagnosis of possibility of Lyme. When people ask, I respond "just as you would not want to swim in the ocean if you have developed a fear of sharks, you would not walk in tall island grasses if you have developed a fear of the deer tick".
r j platt July 19, 2011 at 03:25 PM
thank you for sharing your story which is critical to all whether summer residents or year round in the last few years i have met and spoke with folks that had bouts with lyme disease we also reside at oak bluffs and noticed an abundance of rabbits in our yard myself took ill about 5 years ago with a strange illness which left me ill for weeks 3 trips to newton-wellesley and finally admitted with flu like systems to this day not sure what i had for 3 weeks. the deer population has increased trifold to a point you can see them during the morning and not daybreak. well not venturing out in the back yard anymore for fear of the skunks in the back,rabbits in the front and deer on the side. i remember a few years ago when construction workers took ill from tuleremia i passed away. hopefully this is a wake up call for us vineyarders to protect themselves when venturing out in the yard whether front or back. glad you are better
r j platt July 19, 2011 at 03:28 PM
are you medically qualified as i have heard the phrase used from others
Julie Wesolowski July 19, 2011 at 05:45 PM
Thanks for the discussion. Fred, I am recounting MY story and direct quotes from my doctor, who is a world reknowned Rheumatologist. Perhaps he just said "positive for Lyme as a shorthand--feeling that I didn't really need to know the details and just needed to get on the medicine. My column is an "opinion" not a news article and I am telling it in order to help people.
Trina Mascott July 19, 2011 at 07:04 PM
Some years ago, my husband and I spent two summer months in Oak Bluffs. We loved to walk, so I wore long sleeves, gloves, pants tucked into high sox, and hiking boots. Larry wore tank tops, shorts and sandals. We walked in the woods thick with high grasses. After a few weeks, I noticed a pink two-inch round spot on the back of my hip, but since it didn't have a bull's eye spot in the center, I ignored it. Two months later, I came down with Bell's Palsey. Fortunately, a doctor friend told me to be checked for Lyme. It was Lyme, I had the proper meds and was cured. But how did a tick get to my hip through my protective clothing? I finally came to the conclusion that it climbed up Larry, found his skin too tough, and at night, in bed, the little devil moved onto my more appealing skin (to a tick) and bit ME instead. My advice? Don't sleep with men who go around half-naked in tick territory. Trina Mascott
Vanessa Czarnecki July 19, 2011 at 10:25 PM
Ha! Very good advice!
Peter C. Fyler July 20, 2011 at 10:01 PM
Fred, I had chronic stage 2 Lyme for well over a decade before someone would acknowledge that had it. I had multiple symptoms and I practically could not walk when I started treatment. My titers were off the charts and my doctor/specialist said he had never seen a count that high. I was in intensive treatment for about 3 years. I am at a point now where my life is manageable but I will never be cured. My wife had Lyme a number of years ago and she could not move. It took her over 6 months of treatment to get better. Ironically, as I write this my wife was just diagnosed again this morning as having Lyme. She saw the tick, pulled it out and now she has a large red rash and many classic symptoms. Lyme is real and Lyme can be tested positive but you are certainly entitled to your opinion. Peter Fyler
Peter C. Fyler July 20, 2011 at 10:20 PM
Let me add one more comment to be fair to Fred. There may not be any conclusively positive test for Lyme, but as they say -- if it looks like a duck, walks like and quacks like a duck …
Dan Wolff July 12, 2012 at 03:28 AM
Hi I just wanted to let you know that there is finally an at-home tick testing kit that allows you to test with great accuracy the presence of the Lyme Disease bacteria in ticks. It is a great early warning tool! Please contact me at 1 855 TICK TEST or lymeticktest.com for more information. Dan Wolff

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