Davis/Dafoe story in Stanford Medicine magazine

[bobby]

http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html

Since Dafoe’s ambulance trip to the hospital in December, his parents have been trying to add nutritional supplements to his diet through a feeding tube implanted in his gut to wean him off the IV and add missing metabolites. So far, his body has rejected most attempts at adding food supplements; they cause unbearable stomach pain and nausea. But his parents remain hopeful.

“Looking at his lab tests, he’s unbelievably strong to have all these things wrong with him and still be alive,” Davis says.

“I have a lot of respect for him,” Davis says. He knows of other severely ill CFS patients who have killed themselves. But Dafoe is committed to doing whatever he can to help find a cure for CFS.

“He’s hoping to do this for everyone with CFS,” Davis says. Then he pauses. “I told him it would take a while.”

 

[Merry]

The story that Ron Davis tells about his own childhood is remarkable.

But Davis wants to take a moment to tell a story about his childhood. It’s a story of hope. As a boy, Davis used to buy chemicals at the local drugstore to make fuels for the rockets he’d shoot off in the field out back of his house in a rural area of Illinois. Though he had dyslexia, and his teachers and father told him he’d never be college material, he knew his brain could do some pretty cool stuff. At 14, he would sneak into the local college library at night to read chemistry and physics journals, and he’d get his older sister to teach him the advanced math she was learning in school, partly so he could make better fuel for better rockets, but mostly just for fun.

It was a chronic illness — one that left him bedbound for much of his childhood — that ultimately changed the course of his future, diverting him away from rocket science into medicine. Davis contracted a case of rheumatic fever when he was a year old that never really went away. It recurred maybe 200 times during his childhood in the form of strep throat, bringing with it high fevers, painful swollen joints and inflammation. Trapped in bed, Davis would play mind games to distract himself from the pain and the boredom. He’d dream up new three-dimensional worlds to escape into.

“I’d imagine myself being outside of my body,” he says. “Once I got there, I could go anywhere. It was so real. I could explore the room like an ant. I could slip inside the wall plug and explore the circuits. It must have been some kind of self-hypnosis. It required me to create images in 3-D. I’d rotate things in my brain. Anything spatial was always very easy for me.
“One day, I was absolutely miserable with a high fever. The country doctor came in with his little black bag and said, ‘I have something new.’ That sure made a big impression on me. He injected me with penicillin. Half an hour later, it was just like a miracle. I was completely better.

“I thought, oh my gosh, medicine can do this? And it’s a new technology. It set my course right then.”

 

[h3ro]

Interesting read for me. I'm getting scoped in a few weeks to decide what kind of feeding I'm going to get (PEG, NG or NJ). It's most likely to be a PEG if I don't have stomach inflammation.

 

[Merry]

Interesting read for me. I'm getting scoped in a few weeks to decide what kind of feeding I'm going to get (PEG, NG or NJ). It's most likely to be a PEG if I don't have stomach inflammation.

I had to look up what the acronyms stand for. A feeding tube. The horror of this illness. I'm sorry, @h3ro.

 

[h3ro]

I had to look up what the acronyms stand for. A feeding tube. The horror of this illness. I'm sorry, @h3ro.

Thank you.

 

[Rachel Riggs]

Does anyone else seriously worry about Dr. Ron Davis? I'm afraid he's going to have a heart attack or nervous breakdown. How much stress can a man take??? (worrying is my forte)

 

[h3ro]

Does anyone else seriously worry about Dr. Ron Davis? I'm afraid he's going to have a heart attack or nervous breakdown. How much stress can a man take??? (worrying is my forte)

Some people seem so much more impervious to stress and worry. I'm certainly not one of them.

 

[Rachel Riggs]

@h3ro Sadly, I am impervious to NOTHING

 

[Cort]

Some people seem so much more impervious to stress and worry. I'm certainly not one of them.

Ron actually had a heart problem and an operation late last year I think it was. He said he felt better afterwards and felt he was even thinking better. I had no idea he had those health issues as a child.

They are an interesting couple; there's a lot more to them than just science. They have diverse interests. He seems very resilient. He's pretty laid back - not an in your face kind of guy. Maybe that helps.

That's about as powerful a story as I've ever read..

The OMF as raised $4 million - an amazing amount! I would be really surprised if Ron's next grant application doesn't go through. We're in different times at the NIH....That should be more money for them.

 

[Cort]

@h3ro Sadly, I am impervious to NOTHING

 

[Rachel Riggs]

@Cort Exactly!! hahha

 

[Rachel Riggs]

Ron actually had a heart problem and an operation late last year I think it was. He said he felt better afterwards and felt he was even thinking better. I had no idea he had those health issues as a child.

They are an interesting couple; there's a lot more to them than just science. They have diverse interests. He seems very resilient. He's pretty laid back - not an in your face kind of guy. Maybe that helps.

That's about as powerful a story as I've ever read..

The OMF as raised $4 million - an amazing amount! I would be really surprised if Ron's next grant application doesn't go through. We're in different times at the NIH....That should be more money for them.

@Cort Yeah, I just think he's about the coolest guy there ever was
I hope they get to come out the other side of this thing and resume their lives -- though I don't know that any of us will resume the lives we once had...

 

[Rachel Riggs]

@Cort Did you notice this: http://medicalxpress.com/news/2016-05-chronic-fatigue-patients-suppress-emotions.html

 

[Merida]

What an amazing story. I just don't get this - families with great gifts and terrible illness - seemingly linked In some kind of Cosmic Conundrum. My family echoes this same scenerio. Anyone else?

May Ron Davis solve this enigma.