I went to have my blood drawn this morning, as requested by the very competent nurse practitioner who put me on antibiotics for a month. She was quite candid with me, she couldn’t be positive it was Lyme, the tests for Lyme are notoriously unreliable but if it was Lyme, it needed to be treated quickly and so I have been  on antibiotics for more than a week now.  I have regained most of my strength, the rash is gone, I feel strong and good. I think she made a good decision, gave me good advice.

In America, an illness is no longer something between a person and their doctor – doctoring has changed, insurance companies and pharmaceuticals are the elephants in the room along with government regulators. The Internet has made illnesses like Lyme a cultural, even community event where all kinds of information is disseminated with little regard to process or truth.

The most interesting thing about Lyme for me – it is a fairly boring and unappetizing disease in and of itself, the tick thing – is the response of other people. I am relatively open about my life, so I get a lot of opinions, responses and advice. It seems everyone has a strong opinion about Lyme and most echo the thoughts of Karen who assured me on Facebook just today that antibiotics only suppress the disease, it will come back stronger. Get on a RIfe machine, she urged. This was not stated as an opinion, but as an absolute fact. A Rife machine, I discovered, is an electromagnetic device invented in the nine-twenties which emits radio signals that, some researchers suggest, can destroy harmful bacteria. Although many people with Lyme are convinced that Rife therapy is helping them, there is little or no scientific or empirical evidence to suggest that it works.

I already have an Ipad, an Iphone, an Ipad, a video and still camera. I’m not  bringing any more electromagnetic signals into my house.

When you get something like Lyme, you have to navigate not only the medical bureaucracy but the Apocalyptic view of illness, that is the easily accessed view online that any disease is horrible, doctors know nothing about it, they are all in a conspiracy to hide the truth, and you will suffer from it for the rest of your life, there are all sorts of remedies that absolutely work that they will never tell you about. No online community or site ever seems to say “we don’t know.”. They always know, whether they do or they don’t. Doctors and nurses now routinely beg patients not to go online and research their diseases. My nurse asked me the same thing. And of course we are all inclined to mistrust our doctors and nurses, there is so much money and bureaucracy in medicine they don’t generally even trust themselves. The patient has a tough job.

Sensitivity is a good thing, and we are becoming an ever more sensitive culture to people who suffer from illnesses like Lyme but I am always struck by how eager people are to share how much they suffer and to assure you that you will suffer with them. As with animal advocacy groups, you will never hear online that things can and do work out, that every animal is not abused, or in the human context, that a lot of people recover from illnesses like Lyme and live quite normal lives. Something in many of us wants to share the common experience of suffering and victimization.  I have had this impulse in my life, I am happy to be shed of it.

This week, by chance, The New Yorker Magazine – the literal technological and cultural opposite of an online medical forum – ran an article by Michael Specter which pointed out that Lyme Disease is the most commonly reported tick-borne illness in the United States, and is growing rapidly. In 2009, the C.D.C. reported thirty-eight thousand cases, three times more than in l991 and researchers believe the actual number of sufferers is five to ten times higher.

But the most interesting thing about Lyme Disease is not what is known about it, but what isn’t. Nearly everything about Lyme, writes Specter, “-the symptoms, the diagnosis, the prevalence, the behavior of the borrelia spirochete after it infects the body, and the correct approach to treatment – is contested bitterly and publicly.” Even the definition of Lyme disease, and the terminology used to describe it, has fuelled years of acrimonious debate. ”

The conventional medical assessment – the one I believe – is straight-forward: in most cases, the tick bite causes a skin rash (I had one, this sent me to the doctor), called erythema migrans, which is easily (although not always)  identified by it’s bulls-eye. If left untreated, the bacteria can spread to muscles, joints, the heart and even the brain. Because ticks are so small, bites are often undetected, and the bacteria often spreads.  Public-health officials are in almost universal agreement that a few weeks of antibiotic treatment will almost always wipe out the infection, and that statistically,  relapses are rare. No one has yet mentioned that on my Facebook Page or in the many dire and almost tragically sympathetic and commiserating e-mails I received.

For many people, especially those who didn’t notice the bites or whose doctors didn’t diagnose it, the situation is much more complicated. I feel for them, my own brush with Lyme has been painful and sobering, I wish it on no one.

But it is clear that little is known about Lyme disease, which is anything but simple to diagnose and treat. It is also true that Apocalyptic notions of illness and disease that are epidemic on the Internet are rarely accurate or useful and often inspire panic and the spread of false information. If I believed a tenth of the messages I received about Lyme I would have plunged into the Battenkill River immediately and spared Maria my existence. Frightening people is not a loving or useful thing to do. Fortunately, I have been on the receiving end of so many Apocalyptic warnings about so many things I mostly just shake my head and smile.

This all brings me back to Henry David Thoreau who reminds me that experiences like Lyme – and so many others – are personal and individual. We are individual beings, experience the world in individual ways.

If somebody asks me about the victims of Lyme disease, I will say I can only speak for myself, and hopefully be honest. My wish for them is that they, like most people, recover quickly and permanently. My experience is not yours. If you get it, I have absolutely no idea how serious or treatable it might be for you. What worked for me may not work for you. This, in my mind, is humility and authenticity.  As for understanding Lyme Disease, I’ll pass on the online support groups, the e-mails and the Facebook alarms. I’ll go with my nurse practitioner, a tough and direct person who sees it every day, and I’ll go with the New Yorker. They still have fact checkers, and I have yet to encounter one online.