Friday, May 24, 2013

Observing "Lyme Disease Awareness Month" in Virginia

I almost forgot to note that May is "Lyme Disease Awareness Month" in the great State of Virginia. The symbol for Lyme awareness is a lime green ribbon. Hmmmm. I guess I've never been much into the "Lyme-lime" thing. It seems (to me anyway) like an uncomfortable color, and I'm not looking for any more discomfort than I already have.

I heard that the governor's mansion was lit up one night the color of "lime" as part of this promotion.

Wow. Its a little late for me, unfortunately, but its progress, I guess. Slowly, the ice is breaking and people are discovering that this is a complicated problem. Its one of numerous complicated problems that may drive the medical profession to new levels of attention and creativity. Eventually.

Virginia is waking up, mostly because Lyme disease is clearly rampant here in its most obvious form. So people know to check their kids for ticks after they've been playing in the grass or the woods. People know to keep their eyes open for the acute symptoms that sometimes signal the infection. Doctors do the basic tests, and now they are required by state law to tell patients that these tests are... umm... not necessarily accurate. Huh? Oh dear....

Virginians are waking up to the fact that, for some people, Lyme and other tick borne illnesses can cause long term serious problems. There is still a lot of disagreement, however, about what should be done to help them. And a lot of ignorance.

My idea is that the symbol for "Lyme disease awareness" ought to look something like this:




Running from patient to patient, many doctors don't have much time for individual cases. They want to see the rash, get the test results, and write the prescription. Its fast and busy treatment for a fast and busy world.

Who wants to even think about nasty, tricky bacteria that refuse to die?

Anyway, it would appear that lots of folks are able to "beat it" with the standard prompt antibiotic treatment. Others never experience these symptoms at all, as far as they know. But there are some who end up in a struggle with a whole spectrum of health problems that range from annoying to debilitating to lethal. I know these people, and I know their stories.

I am one of these people.

But I would be a bad poster boy for "Chronic Lyme disease" because of all my other health problems. We spent more than ten years and kerfwaddles of money both inside and outside the conventional medical box, trying to make me better. In the last several years we seem to have found a delicate balance of lifestyle, stress levels, medication, diet, and a whole bag of tricks that keep me (most of the time) in the "sorta okay" range.

For now, we are going with this balance, which requires plenty of care and attention to maintain. In the present moment, it is a condition that my wife and I can embrace, along with our family, as we move forward. And I am challenged to find creative ways to put my talents to use for the good, within the limitations of what remains a complex physical and mental disability. The Lyme bacteria are only part of my problem.

But Chronic Lyme has other faces.

There are plenty of normal, lively people who play sports and are full of energy and blooming mental health, until they really get hit hard with this strange-disabling-thing-that-doesn't-go-away. Then they embark upon "the Odyssey" of denial and misdiagnosis, and treatments and therapies of many diverse kinds. They have many weird adventures as they try to return to their former good health. Some people, however, also encounter cutting-edge science and heroic, pioneering medical professionals who are developing models of medical practice that make the particular human person the center of their attention.

Awareness of the person is what we all need most.

2 comments:

Kathy said...

Three years we were trying to get the conventional medical crowd to recognize the debilitating effects of Lyme Disease on my daughter (now 12). Finally, I changed doctors and asked at her annual physical for her to be retested for Lyme (which had come up positive three years prior, was treated, stayed at bay for about 3 months and returned with incredible fury). The test came back positive...and here we are fighting the battle against it again! Prayers and due diligence, balance and perseverance...that's all we can do. God bless you, John.

John Janaro said...

I'm very sorry to hear about this. Its a hard battle. I pray for your daughter and all of you, and I hope she will be able to get the necessary treatment for a sufficient amount of time to put it into remission for good.