Creepshow

I'm full of bugs. 

My body is a huge planet, or maybe an entire solar system, and it's colonized by bacteria. They live in their little huddles, their apartment buildings, and when threatened, dig deeper, underground, into tissues. 

OK--I'm dating myself, I know, but do you remember a horror movie in the early 1980s called, "Creepshow" based on stories by Stephen King?  Now I never, ever liked horror films and I have no idea why I went to see this movie. Images from it still play in my mind all these years later. 

But one picture that continues to stand out, if I choose to think of it, is that of cockroaches crawling out of a man's body. 

Ewwww.

On second thought, am I like that? Full of yucky stuff?

Could one tiny tick bite actually do that to a person? Infect me with zillions of life forms?

Are you smarter than a fifth grader? Because the answer is....YES!

They're not cockroaches in my body...no, but they're scary enough. And they MORPH! 

When the tick first attaches, its saliva, complete with Lyme spirochetes and co-infections, is transmitted into the person's blood.  According to the CDC it will take from 36-48 hours for borrellia (Lyme Disease) to be transmitted. But those of us in the Lyme community, as well as Lyme Literate doctors (LLMDs) know that is a fallacy. For a three-year old treated by Dr. Jones, it took about 20 minutes or less. And some co-infections are transmitted immediately.

Perhaps I was bitten as a child. My mother remembers removing many ticks from me, but my parents didn't know about Lyme Disease in those days. I spent much of my childhood playing in the woods, making forts, picking leaves (they were "money!") and jumping into piles of freshly raked leaves. Lying back on the grass and gazing at the deep blue sky, the snowy clouds. Rolling down clover-covered hills.

Yikes. Idyllic? Umm, in a world without bugs, yes. 

Both my kids have been diagnosed with Lyme. Did I give it to them? Who knows. Again, the CDC will not publish anything yet that says that Lyme can be congenital. But if you do your research, you'll find that it can be. In fact, many people believe that it can also be sexually transmitted. After all, it comes in spirochete form, just as syphilis does. 

So, the Lyme is in my body. It's in corkscrew form but then it converts into biofilms and what University of New Haven researcher Dr. Eva Sapi calls, "round bodies." It's an intelligent, tough little bugger that has survived for thousands of years. 

Kill it.

Get it out.

Granted we have bacteria in our body that is beneficial. We don't live in isolation. But borrellia and company are parastical. They give nothing back. They're takers. No reciprocity in this relationship. I want to unfriend Lyme and Co.

That being said, I'm one of the lucky ones. I am fatigued at times. I get headaches lately. Stress comes over me, feeling like a sweater knitted with nettles that is suddenly shrunk on me so that I end up on the floor, my knees hugged to my chest.

Maybe I have a little brain fog and maybe that's just me, my pre-menopausal age, or who knows what. 

But that's it. I bicycled twenty miles this morning and then went shopping.

My son has joint pain and major neurocognitive symptoms. He's had a hard time sleeping for nights now and spent much of this brilliant day curled up on the sofa. A friend of mine thought she'd end up in a wheelchair from Lyme until she had IVIG treatments. She still keeps a cane handy, just in case.

Lyme kills. Lyme causes suicides. Lyme ends careers, marriages, lives. 

So, why me? Why do I have it? And why is my body strong enough to fight it--so much so that enough bands show up on the Western Blot to prove it to the CDC?

Why don't you have it? Aye...there's the rub. Maybe you do.

I would never have tested myself except that my son has been so sick. I thought my fatigue was...well, I didn't know. My doctor once asked if I wanted antidepressants for it (No!) I was later to sent to a rheumotologist (all negative.) Never did they give me a Western Blot for Lyme, and never once did I know enough to ask.

I'll bet there are millions of people walking around with Lyme Disease, with spirochetes and round bodies and biofilms clustering in their bodies, making themselves Oh-So-Cozy. Some people just never get sick; their immune systems are strong enough to combat it all. 

A recent trip to a new internist revealed that she orders a Lyme Test for each patient upon their annual physical, and finds that many people have Lyme. They thought they had arthritis. Or depression. Never realized it was Lyme. Now I didn't ask if she orders the ELISA (worthless!) or the Western Blot (much better.) I didn't want to get into a medical discussion, given that after a year and a half of reading articles and patient comments, I know more about Lyme Disease than your average infectious disease doctor. And if there's one thing many doctors and nurses don't like, it's the patient telling them what they should know, however nicely.

That's pretty sad, huh? That I, who never went to medical school, know more about Lyme Disease (and PANDAS!) than most doctors? What does that say about our society?

So, where do I go from here? I guess I'm living in a real-life Creepshow. What Stephen King could do with this! 

It's fighting time. Hit them with your best shot, Samento and Banderol!

Furthermore, if someone as brilliant and active as Dr. Eva Sapi can suffer through Lyme and then proceed to be one of our foremost scientists, I can do what I must do! 

I'll write about it.