Under Our Skin

I didn't know what was happening to me.

I thought I was gonna die.

He kept saying to us, "I have no idea what this is."

"I've never seen this before.

I've never heard of this before."

"We don't know what's wrong with you."

Dark and not seeing any light of recovery.

We have, I think, a horrible epidemic.

When enough people are sick,

it's gonna be, "Who's answering for this?"

What did you know? When did you know it?"

What kind of a breakdown or series of breakdowns

in the medical system can lead to a setting

where you have an illness

and people walking into their average doctors' offices

may or may not be likely to get effective treatment for it?

I would never, never have thought

that a bacteriological infection producing the havoc

that it produces can become so politicized.

The truth can be so brutally distorted.

When we moved to where we are now,

the people we bought the house from said to us,

"Be careful of Lyme disease."

And then we met all the neighbors.

Every house, for sure, had at least one case,

and many houses had...

All of the family had been infected.

All of them were sick.

Are you able to stand up, honey?

All right, I'm gonna shut this off

so we can take you back in the house, okay?

Okay. Okay.

All the articles basically state

that this really isn't that big of an epidemic

and that it doesn't really do that much to your body,

and that it's just a very easy, quick cure,

a couple weeks of antibiotics, and you're good to go.

Obviously, those people haven't actually seen what it does.

Pain, pain, pain, relentless pain.

No one would believe it.

I said to my best friend, I said, "Look at me right now."

Look at me. What do I look like?"

And he said, "You look great."

I said, "You cannot imagine the pain in my body right now."

My case was sort of cut-and-dry.

A, I was a park ranger.

B, I knew exactly when I was bitten,

and I saved the tick and brought it to my doctor.

C, I had a red rash,

and D, I had a rather classic case

of neurological Lyme disease with all the usual trimmings,

but I brought all that to the doctors,

and it took five doctors to figure it out.

"I don't think you're sick.

I don't think there's anything wrong with you."

Everybody's telling you it's in your head.

You know it's not in your head.

We don't think there's anything wrong with you.

"There is nothing wrong."

"We've done your labs.

Your labs are fine. You're fine."

"There's no medicine for someone like you.

"You're an attractive girl, and obviously,

you don't feel like you're getting enough attention."

This is my adrenaline now.

So if you want to see me get worse,

I'll just do one length, not even a lap, half a length.

I'll have to be hauled out like the catch of the day.

She's become very, very good at hiding symptoms.

It doesn't matter how bad she is.

I mean, the girl cannot get out of bed,

and her catchphrase is, "I'll do it myself."

- I can do it myself. - That's right.

I mean, she can do...

I can go grab something in 30 seconds,

or she can take four hours to crawl across the house,

and she will not let me go get it.

I know what my bad days are like,

and I do my best to try to prevent them,

so to know that I could get worse,

that's not something I'm looking forward to.

The unknown is pretty scary.

I live on the west side

of the northern Sierra Nevada in California.

I'm a writer now.

I was a park ranger for 21 years

until I got Lyme disease and had to quit.

It began with profound fatigue.

Then I developed stabbing and shooting pains.

I started having vision problems,

blurred vision,

and then came the memory loss and the cognitive problems.

And once, I drove to my office,

a place I'd commuted to for 13 years,

and stopped on the way home

and called my wife on the cell phone

and told her that I wasn't sure I could find my way home.

I just wasn't in good enough shape to drive,

couldn't remember how to do it.

If I hadn't had any kids, I might have killed myself.

My life was so uncomfortable to be in instead.

I don't know that I would have wanted to be here

had I not had stronger family connections, you know?

Kept me here.

I'm an event producer for U2 shows on tour.

I get to do the VIP parties for all the band's guests.

I've loved this band since I was a kid.

I mean, I had the freaking personalized license plate.

Everybody's in survival mode on tour.

It's insane. It's completely insane.

The hardest thing is, everybody thinks I'm normal.

At home, I was in bed and feeling just so sick,

and just searing, searing pain.

It got worse and worse,

and I started having pretty bad neurological problems.

I got to the point of just do or die,

just go for something

instead of sitting in my room, rotting in my bed.

Over the last 12 years,

I've been diagnosed off and on with lupus.

Chronic fatigue syndrome, Crohn's disease.

- Fibromyalgia. - Lupus, fibromyalgia, MS.

- Fibromyalgia. - Rheumatoid arthritis.

Doctors thought I had ADD.

- Chronic fatigue syndrome. - Chronic fatigue syndrome.

- Parkinson's disease. - Syphilis.

- Multiple sclerosis. - MS to ALS to nothing.

They were pulling anything

out of their hat they could think of.

Doctor after doctor after doctor after doctor

after doctor misdiagnosing her,

putting her on some medication that didn't work

and just thought we were both nuts.

There's evidence that Lyme disease

has been around for a long time, but here in the United States,

it was the early 1970s when a Connecticut mom

looked around her neighborhood

and noticed something was not quite right.

Well, I was frightened, really,

and doctors, you know, were insinuating

that it was all in my head.

In the '70s, we were all having strange symptoms,

headaches and stiff neck and swollen joints.

As I looked around the neighborhood,

I realized that there were others

that were having swollen knees and rashes.

Finally, when our symptoms just weren't going away,

I decided to call the state health department

and report this mysterious disease

that seemed to be coming to our area.

In 1981,

I discovered the causative agent of Lyme disease.

My discovery was published in the Science magazine

and considered as a breakthrough.

We didn't know how to treat it.

It was a newly described germ.

It looked like syphilis under the microscope,

but that's as far as we got.

We also didn't have any idea how widespread it was,

how much suffering it caused, and the controversies to come.

Lyme disease is caused by bacteria,

the Borrelia spirochete.

It's spiral-shaped, so it can drill through tissue

and get into just about any part of the body.

The most common form of transmission

is through the bite of several species of tick

commonly known as deer ticks.

There's bacteria inside the tick,

so when it bites you,

it just starts sucking up your blood

like Dracula would do.

While it's, like, sucking in the blood,

the bacteria will be released,

and then it just gets into the blood,

and it gets into your heart, and then your brain,

and then you have Lyme disease.

It'd seem like for every thing

that I'd read about it that it was harmful,

there was always something I'd read about it that said,

"No, no, no.

It's actually very easy to cure."

Well, when I saw this doctor, you know, he said,

"You've got a long road ahead of you."

I, Mandy, take you, Sean...

- To be my husband... - To be my husband...

- To have and to hold... - To have and to hold...

- In sickness and in health... - In sickness and in health...

- To love and to cherish... - To love and to cherish...

- Until death do us part. - Until death do us part.

There's no difference in how I feel about her now

and how I felt about her then.

We'll see if he says that

when I'm starting to get treatment

and I'm all...

I think, like a lot of people who've had Lyme disease,

I've been led to wonder why it's not being treated

with the kind of seriousness that it deserves.

This is not a rare disease.

It's thought of as a rare disease,

but in fact, there's nothing controversial about the fact