Forbes Article: "What One Entrepreneur Taught Me About Inspiration and Appreciation"

[slayadragon]

Entrpreneur Joey Tuan is interviewed about his experiences getting to mostly recovered status from ME/CFS in Forbes.

>Joey divulged that he suffered from a serious health condition that, at its worst, prevented him from walking or standing for more than a few minutes at a time and impaired his ability to read. And to make things worse, his condition is poorly understood with no FDA-approved treatment.

>He had to do his own research into non-conventional treatments and spent over $200,000 trying different drugs and alternative cures, but without much success.

>It wasn’t until the winter of 2011 when he had a breakthrough. Joey learned that some patients with similar conditions recovered shortly after camping in the desert. Without much to lose, Joey decided to give it a shot.

>What happened next was nothing short of a miracle. Within a month, Joey felt better and went from death’s door to hiking every day.

>And as it turns out, his time at the desert paved the way for something more than him getting better. Joey told me that he owes his recovery to the patients who shared their experiences with him. This inspired him to start his own company, so he can provide others with the same opportunity given to him: the chance to connect with people with similar conditions to share and learn from each other.

http://www.forbes.com/sites/jerryja...taught-me-about-inspiration-and-appreciation/

 

[Dufresne]

It's too bad he's no longer posting on PR. I think his testimonial on mold avoidance is especially valuable. He has as much online credibility as anyone out there. He suffered an acute, viral onset and was eventually diagnosed by Dr Peterson who, as I understand it, only treats people that fell ill this way. So he's the real deal. And with everything he tried, all the money he spent, what made the biggest difference was extreme avoidance. He still suffers from the disease, he's just not nearly as disabled. It would be great if he'd connect the dots for those out there that haven't followed his story, the best part of which was told in an anonymous blog.

His endorsement is one of the reasons I eventually made my own pilgrimage to the desert where I discovered for myself that environmental biotoxins play a huge part in my disease.

 

[slayadragon]

How are you doing now, Dufresne?

 

[Dufresne]

How are you doing now, Dufresne?

I'm back home now and staying in a cleaner environment. As a result my EMF sensitivity is about a tenth of what it was in the other place (it was zero in Death Valley, even while driving or in front of the computer). Also I'm able to benefit from taking some pharmaceuticals for the first time in about four years. This phenomenon of drugs not working while one's in a bad environment is something I've only ever heard you speak about, as well as a patient of Dr Nagy. Anyway it has led to my discovering Baclofen. Unfortunately my sensitivities persist and my PEM threshold continues to decrease.

I'm considering another trip to the desert to see if I can't reach that point of little to no PEM. Unfortunately I didn't manage to put together more than about ten days at a time of strict avoidance while there last year. I was re-exposed when I used a different thermal shirt out of a package I'd bought before leaving. This was good in that it convinced me of the night and day effect this stuff has; the electrical sensitivity came right back and so did this sort of nervous energy I'm prone to. I've a lot to say about this but it probably wouldn't make much sense to anybody reading so I'll refrain from doing so. Suffice it to say that the reaction to biotoxins can lead to further oxidative stress in the nervous system and excitotoxicity.

My chemical sensitivities flared up while practicing extreme avoidance. As I understand it, sometimes these get better and sometimes they get worse. I believe Joey and Janis B both had this occur and persist with no eventual abatement. In my case I've really good reason to believe this is due to a bug that when it loses its mainstay of my reaction to mold it then cranks up its efforts to sensitize me to whatever it can. I don't really react to chemicals up here. I can even wear cologne if I choose to. But in the desert this would cause massive problems. I was unable to use a tent or a sleeping bag, which made for some cold nights and desperate brainstorming.

 

[slayadragon]

Happy to hear that the pharmaceuticals are helping you in an improved environment, Dufresne.

Based on what I have seen, i don't think that chemical sensitivities or biotoxin sensitivities tend to go down unless people manage to successfully detoxify some stuff from their bodies. And even then, improvements in reactivity tend to lag behind the detox considerably.

But detox can make people feel worse before they feel better, as the toxins are released. So if people are focused on a particular short-term goal (such as launching a new company), they can be reluctant to do too much of it.

Increasingly I am impressed with the ability of the Gerson program to prompt detox and eventually allow people to move to wellness. It takes a lot of effort for the food preparation, and I'm also not convinced that all the components (such as no-fat, no-salt or all-vegan) are needed or even desirable for this disease. Even a modified version seems to be very helpful for people.

I've also seen some cases of people who did full Yasko (under Amy Yasko's supervision) for a year and then a while later got to mostly recovered status (including able to tolerate more exposures). They did not necessarily credit Yasko for that, but since I've yet to see people decrease reactivities long-term without a lot of detox, and since they did remark on the amount of toxins that were removed from their bodies, I tend to think that the treatment was at least somewhat of a factor.

I've seen scattered cases of people who have been helped by a more simplified version of Yasko's program (such as the one advocated by the late Rich van K), but much less so. And things like binders and saunas only help for severely ill people if they are in a very good location with a low enough level of exposure to be feeling really good (such as you experienced in the desert), I increasingly think.

Happy to hear your report regardless!

Lisa

 

[slayadragon]

Joey shares some more of his story regarding avoidance.

 

[Dufresne]

Joey shares some more of his story regarding avoidance.

I had pretty much the same conversation with my own mother. Talking to her about how I wanted things taken care of after I'd passed. I doubt she took me all that seriously; years of foggy, emotionally charged descriptions of bizarre symptoms and desperate regimens had basically convinced my family I was nuts. But now after a couple breakthroughs I feel mostly clearheaded and optimistic. I've a handle on things and I'm actually deriving some satisfaction out of life. Discovering the biotoxin component of my disease was huge.

 

[Firestormm]

It's too bad he's no longer posting on PR. I think his testimonial on mold avoidance is especially valuable. He has as much online credibility as anyone out there. He suffered an acute, viral onset and was eventually diagnosed by Dr Peterson who, as I understand it, only treats people that fell ill this way. So he's the real deal. And with everything he tried, all the money he spent, what made the biggest difference was extreme avoidance. He still suffers from the disease, he's just not nearly as disabled. It would be great if he'd connect the dots for those out there that haven't followed his story, the best part of which was told in an anonymous blog.

His endorsement is one of the reasons I eventually made my own pilgrimage to the desert where I discovered for myself that environmental biotoxins play a huge part in my disease.

Joey is posting on Phoenix as "mojoey": http://forums.phoenixrising.me/index.php?threads/healclick.27620/#post-422500