A Nurse Recounts Her Cousin’s Creutzfeldt-Jakob Diagnosis and Recovery

How did you find out about your cousin's illness and what was going on with him?

Patrick lives in Connecticut by himself.

Single male, s- late 60s at the time. Brilliant guy, worked on Wall Street, then left and beca- became an educator in a private school in Connecticut. Um, brilliant scratch golfer, does the New York Times crossword puzzle in pen, five minutes, no questions asked. And I mean, just a brilliant guy all the way

around. Physically fit, on top of everything.

So she said, "He has mad cow disease." I said, "Uh, he, he'd be on the front page of the New York Times if he had mad cow.

We don't have that in our country." When they told us he only had five months to live, I said, "When was that?" She said, "About five months ago." I said, "You gotta be kidding me." I said, "Well, you're calling me now?" Then I said, "Yes,

I can. I'll be there on Friday." So I hung 1,000 milligrams plus the 10cc, which is the maximum dose of the DMSO, and did that every day, uh, for three days in a row. We did that for four weeks.

Now, when I got there, he was cognitively gone.

I mean, he, he, half of his brothers and sisters, he could not remember.

Did not remember the name of his dog. But he would walk around, arms at his sides like they weighed 1,000 pounds. They didn't swing or move, and he walked like he was limbically devoid.

No... You know, if he turned his head, it was like his whole body turned.

He was a robot. And no affect, no conversation, and just a look like somebody was looking at you from inside of him, but it was not on the outside. It was devastating. And, um, you know, you look at that as a nurse and you say to yourself, "When your brain gets to that stage, the likelihood of you walking out of the Wicked West

is really remote. Really remote." Yeah. And I just didn't even think about it.

I just put my nose down, did what I needed to do.

And every week when I would go back, he would be a little bit better, a little bit better, a little bit better. He's remembering people.

He now has a little bit of an affect. He's now eating.

You know, he remembers the dog. You know, things are coming back.

And he was positive cerebral spinal fluid for Creutzfeldt-Jakob on CAT scan. They could see the puddle in his brain, and they referred to it as a puddle.

Yeah. And so he was totally diagnosed. You know, the symptomatology, CAT scan, x-ray, you name it.

Sent him home, didn't even put him on anything.

Not even so much as a Benadryl. Wow. Not even anti-seizure medicine in case that might happen.

"Go home and get your affairs in order. Thanks for coming." And honestly, there's only about three doctors in the United States that will even deal with Creutzfeldt-Jakob.

There's nowhere to go. It's brutal. Yeah.

They took pictures of him when he got to the ER.

He came down and he's like, "Patrick, is that you?" He said, "Hi, Doctor."

And he's like, which he'd not been able to do.

And he's looking at him like, "I must have misdiagnosed him." I'm like, "Uh, uh, uh, excuse me. No, you didn't.

Any chance you think the vitamin C and the DMSO..." He looked at me before I could even finish DMSO, and he's like, "No.

And don't bother bringing it up again." So he says to my cousin, "Do you mind if I write you up for the New England Journal of Neurology?"

And he's like, "Sure." He said, "Are you gonna put in there about vitamin C?" He said, "No." I said, "Then you better wait for the, uh, article that comes in after you." He cruises around today. No incidents or issues.

He's not on any medication. He conducts his life.

He's retired, living in Palm Beach, playing golf, back to scratch.

And how many years was that? Five or six years ago.

Yeah. And he's crystal clean