As a rule, I avoid sharing personal experiences in this space, but I thought it might help after the last column about tick-borne disease. Having received considerable reaction from readers, personally and by e-mail, describing their truly heart-wrenching journeys, especially with Lyme, I wanted to tell you about some lessons I learned to spare others from falling into the abyss where many have described they now find themselves.
About 2002, the standard tick bite with the bullseye rash warned me enough to get a blood test, which came up positive for Lyme, with the standard four week regimen of antibiotics. This successful treatment had all to do with the good fortune of being aware of the bite, finding and removing the miniature devil, the telltale rash, and a blood test result that was definitive.
Let’s be mindful that it does not always work that way. The irony in being “lucky” when Lyme strikes is that you know you were hit, and have a prompt and accurate diagnosis. In this, my first case, I was able to get early treatment after only a few days of symptoms. The lesson here is to seek help ASAP. To delay is to play with fire.
Only a couple of years later, no tick bite showed itself, and no rash appeared, yet my symptoms this time came incredibly hard. My doctor’s office, unlike many then (and still too many now), had handled quite a few cases of tick-borne disease, sparing me the battle some patients are forced to wage just to get their medical care providers to take them seriously. So I described the almost disabling symptoms, and this blood test brought back a diagnosis of ehrlichiosis, a more dangerous, sometimes deadly tick ailment.
Though again I was favored with quick treatment, the ehrlichiosis bacterium took its cruel path just as fast, attacking the central nervous system to the point where, in a matter of days, I could barely walk even with the help of a cane. If the antibiotics, again for four weeks, had not kicked in when they did, they told me I might never have recovered. Again the compelling lesson — get help ASAP.
These two episodes certainly taught me to check for ticks, especially as I live on the North Fork and spend much time outdoors, as most of us do. With a dog as a family member, ticks enjoy a special vehicle of access to our home, and can be found crawling about. We had no idea of the speed of some tick species on foot. But worse are the tiny deer ticks that are close to impossible to see.
Then there came my routine physical last year where I asked for no specific reason that the blood work I was receiving anyway might as well include testing for tick-borne disease. While I had no symptoms at all, the surprise result was positive for Lyme, followed by the standard treatment. The lesson here: anytime you have blood work for any reason, ask that it include testing for tick-borne disease. Some medical staff may resist if you don’t complain of symptoms, but demand it anyway.
There is more I’ve learned from these ticks and their brutal handiwork: if some of the aching, flu-like symptoms of Lyme or the other tick-borne ailments come about, they certainly can vary in their intensity. Even today, some doctors know little about it, and have to be coaxed into testing for it. And here’s another mountain to climb — when the symptoms are there but the blood test is not positive, you may want to get the antibiotic treatment anyway, often against the doctor’s advice. Beware how frequent antibiotic therapy is in itself a health risk. This underscores the need to consult a physician with considerable experience in this area of practice.
So if you had frequent rides on the tickmobile as I’ve had, be mindful that little is known of the long-term effects of frequently contracting these illnesses. Some suggest that repeated exposure eventually cannot be treated effectively with any regimen. Chronic Lyme, on the other hand, is where timely treatment never happened after contracting it, usually with misdiagnosis, or no diagnosis at all. What may help for chronic Lyme is the extended, IV treatment discussed in the last column, but incredibly, it takes an almost providential combination of events to get that, including not only proper diagnosis, but also informed medical help and health insurance willing to cover it.
As have many others, I’ve been warned to make a drastic lifestyle change, to give up many outdoor activities, to spray frequently various chemicals indoors and out, to confine pets to the house and strictly controlled areas in the yard, to apply on myself constant layers of chemicals, and to get blood tests every three months, regardless of symptoms, rashes and other warning signs. This calls for adjustments that we all have to consider.
Above all, it’s not enough to check for ticks on yourself and your loved ones after you’ve been out. You have to get your blood tested as well, and often, even though such tests are themselves unreliable, so that you may have to push for treatment anyway. Until a truly effective vaccine is available, there are no safe alternatives.