Guest Column

Lyme disease spelled out

What would you do if you were told by your doctor you’d been “cured” of your disease, while any lingering symptoms are chalked up to the aches and pains of daily living, except new and worsening symptoms kept increasing?

Of course you would go back to the doctor or try a different doctor, especially if your symptoms were severe, like seizures, paralysis or dementia.

Trying to maintain daily life becomes difficult, if not impossible.

Sitting across the desk from your doctor, you pray for answers and help. If that doctor treated you as a malingerer, outrageously suggesting you had a need for attention and made up, somehow, the interrupted brain waves that show on EEGs, blood that looks like half-set jello, seizures, neuropathy, tremors, et cetera when you couldn’t possibly, what would you do?

This is the terrifying reality for thousands of chronic Lyme patients in America today, and not just in New England.

As advocates and activists, we are meeting more chronic Lyme patients all the time, right here on the Key. They have been abused and forgotten by doctors taught to deny chronic Lyme, taught that these debilitated patients should be scorned as “Lyme Loonies” and brushed aside.

One of the many diseases that Lyme imitates is multiple sclerosis, and Washington state has the highest numbers of MS cases in the country. Having lesions on the brain is actually a condition, rather than a disease in itself. A chronic Lyme patient for more than 16 years now, Anna (my daughter) was told by a neurologist at University of Washington Medical Center: “You could say you have MS.”

There is simply too much evidence supporting the persistence of Lyme after short-course antibiotic treatment. Biofilms (think of them as a sort of safe, gated community made from mucus, where bacteria can hide undetected by the body’s immune system) have been documented. The presence of biofilms, filmed with thousands of spirochetes, indicates an active infection.

Meanwhile, giving testimony in Olympia against recognizing this evidence, a state health department spokesperson tried to declare that we didn’t even have deer ticks in this state.  Thankfully, she was corrected by a committee member. Yet the Bill has been watered down now to be about studying the studies of the effects of long-term antibiotic use in Lyme patients.

It’s time to educate ourselves about Lyme, its prevention and the controversy surrounding diagnosis and treatment.

Learn to protect yourself against tick bites, tucking pants into socks, putting clothes in the dryer for 20 minutes after your hike and, most importantly, check one another for ticks after outdoor activity.

A “tick tool” can be purchased to hang on your key chain, or just use tweezers to gently remove them.  Never listen to the fads about using Vaseline, alcohol or anything else. A great site for education is whatislyme.com.

Ask your doctor, what they know about Lyme disease, then ask them to learn more. If not, with case numbers on the rise in Washington, and doctors’ ignorance, the question “What would you do” could become all too frighteningly real.