Questions for Dr Seo

**pberggren1** · 03-10-2011, 04:45 PM

Awesome work there Dr. Sangye!

**Sangye** · 03-10-2011, 04:50 PM

Thanks, Phil. I give Dr Seo a lot of credit for taking the time to answer all my questions. He's unbelievably busy and always answers my questions thoroughly. He and I share an appreciation for quality research and for evidence-based medicine.

**pberggren1** · 03-10-2011, 04:53 PM

My doc is the same way. He is very compassionate and always anwers all of my questions and we e-mail back and forth as well. He is a researcher himself. This okra sounding drug may be what we need. I hope it works but it will be years before any of us could go on it.

**chrisTIn@** · 03-10-2011, 08:52 PM

Originally Posted by Sangye

I give Dr Seo a lot of credit...
...He and I share an appreciation for quality research and for evidence-based medicine.

I appreciate quality research too.

Thank you very much for asking the question about LDN
and reporting dr. Seo's answer here, Sangye.

**Sangye** · 03-11-2011, 03:39 AM

Phil, like I said in my update thread, the okra-something drug is probably only going to be used for those of us who don't tolerate rtx very well. He was very reluctant to give many details about it.

**Sangye** · 03-11-2011, 04:20 AM

It might sound strange to some, but I woke up really happy today thinking about this new treatment plan. It brings me peace knowing that I don't have to continue to "crash and burn" for months before then losing another 6 wks to rtx treatments. I didn't realize how much anxiety I had over it-- always wondering "Is the rtx still working? Should we re-treat yet? Can I tough it out longer? How long should I hold out? Did I let it go too far and now the Wegs dog is fully awake?"

Thank goodness for Dr Seo.

**freakyschizogirl** · 03-11-2011, 07:31 AM

Originally Posted by Sangye

5) Causes of Wegs?
He said they still have no idea about a cause and no one seems to be getting closer to figuring it out.

Silica is strongly linked to Wegs, but is not 100% causal. That is, many Weggies have a history of silica exposure, but not all people who are exposed to silica develop Wegs. Only a very small percentage do. Also, there is no evidence that if someone does have silica-induced Wegs that further exposure will be harmful to them. He said "the cat is already out of the bag."

There is zero evidence that Wegs is genetic. There is also no evidence that Wegs is more likely to occur if there is a family history of AI diseases. Wegs occurs in AI-afflicted families at the same rate as in non AI-afflicted families.

I had no idea about the Silica exposure. Did Dr Seo specify what sort of exposure it was? Like injestion or environmental?

I was also interested with the genetic links, epecially since i come from a family immuno-compromised as it were. My granddad had a form of Lupus, my mum has RA and then theres little old me, lol.

Strange that Wegs is so indescriminate of who it chooses.