Thursday, June 27, 2013

A rant about tick borne diseases

Though not as gruesome, not as immediately lethal for most people, tick borne disease is the AIDS epidemic of this decade. Lyme is horrible but by no means the only one, and probably not the worst. Here's a link to the CDC site that lists all known tick borne diseases.

Tick borne diseases are difficult to diagnose because symptoms vary wildly from person to person, also because they're hard to detect through blood tests even though that process has been refined in recent years. Lyme doesn't remain in the bloodstream for very long. The antibodies don't show up for weeks, or in those with compromised immune systems, months - or never. Blood tests are not an ideal way to diagnose these conditions. Once the infection settles into the body, it is very difficult and perhaps impossible to cure.

Even worse than the difficulties involved in diagnosis, no one agrees about how to treat these diseases. Some doctors think a simple round of antibiotics should do it. Even when their patients continue to suffer, if they don't find the spirochete in the blood, they refuse to believe the person is still sick.

This is one of the problems I have with modern medicine. If the numbers are right, the conclusion is that we're healthy, no matter how awful we feel. I bristle at the use of the word "psychosomatic," as it puts the blame on the patient, not on the doctor who can't figure out what's happening. Remember Chronic Fatigue Syndrome? One of my clients who was bedridden for years with CFS finally found a doctor in Seattle who diagnosed Lyme disease. She is currently on a five year course of antibiotics that are administered via a port like the ones they use for chemotherapy. She's back on her feet at last though still not well by any means. Her doctor also has her using a Rife machine, and swallowing handfuls of supplements. I hope she can recover. Before she got sick she was a journalist living in Guatamala. It's a horrifying story.

I'm on about Lyme and other tick borne diseases after reading this excellent New Yorker article.
Nearly everything about Lyme disease -- 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 fueled years of acrimonious debate. 
Lyme and the other tick borne diseases are evil. They are shape shifters that can look like a million other afflictions. Left untreated, the bacteria can spread to muscles, joints, the heart and the brain. And though many doctors swear it's easily treatable, the clinical reality for many people is that it is never cured.

Those who have it suffer terribly, those who are working on it are in violent disagreement about every aspect of the research. I've had clients who couldn't lie still on the table; their bodies jerked and writhed and yet their doctors insisted there was nothing wrong. I'm telling you, Lyme and the other tick borne diseases are evil. I don't use that word often. The soul of the disease is what's evil. I don't blame the ticks - they're just living out their lives. They're infected, too. The spirochetes themselves: evil.

Please, I am begging you, do NOT get infected. Be aware. When you're walking through grass or are out in the woods, tuck your pants into your socks, spritz yourself with DEET, wear a hat. When you come in from your walk, check yourself from head to toe. If you get bitten, save the tick and get to the doctor as soon as possible.

Do NOT wait for a bullseye rash to develop. In 25% of the people who are diagnosed, there was never a rash. If your doctor poo-poos your request to get on antibiotics, find another doctor.

There's no way I can be emphatic enough here. This is not something to be nonchalant about. This is serious. In the next few years we will hear a lot more about these diseases. The modern medical community will finally recognize how nefarious and long lasting these diseases are, how pervasive and difficult to diagnose and treat. When at last someone officially compares Lyme to the AIDS epidemic, I'll say, as I tend to often, Who said it first?

Do NOT get Lyme disease. Do not. That is all.


ain't for city gals said...

wow..scary. Ticks are somewhat rare in the desert and I am glad!

Reya Mellicker said...

Hope you're able to stay cool in the coming days. It's supposed to be scorching there tomorrow.