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#302500 - 06/19/08 02:03 PM Re: To anyone else who wants to tell me I'm insane [Re: Orch]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
Hi Steve,
So far I have met people here for neuralgia, a few with rheumatoid arthritis, a few with AS, one with MS, one with eczema and a few others I'm not sure of. There seems to be a good number of healthy spouses who come along too. I've heard many stories of people using the mine to treat MS though.

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#302501 - 06/19/08 05:24 PM Re: Day 4/5 - Half Baked [Re: Megan]
drizzit Offline
Silver_AS_Kicker

Registered: 02/25/06
Posts: 1483
Loc: Montana
I will say you are putting in more time than I will if I go. I am only going for the minimum of 32 hours over 8-10 days. I see in Europe they do even less but the radon concentrations are much higher than in the mine in Montana.

Does Pat talk about the increased dose? Too bad there aren't some studies with dose information and a better guide.
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes

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#302502 - 06/20/08 08:13 PM Re: Day 4/5 - Half Baked [Re: drizzit]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
There really isn't enough clinical info to say what dose/hours are adequate. Sounds like it's pretty individual - not unlike trying to find the right meds for pain control. Pat suggested more hours for AS, and to just do what felt right. I agree, there needs to be more research into what dosages over what timelines are required.

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#302503 - 06/20/08 08:48 PM Day 6/7 [Re: Megan]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
Did 6 hours yesterday in two sittings (plus a few more short breaks) on day 6, and will put in another 8 hours today (two sittings, one underground, one in the radon room, plus a few breaks), for a grand total of 47 hours in 7 days.
Glen's been with me all day today, which is nice, except I'm still pretty crabby. I dropped down to 10mg prednisone, and I'm not sure if that's why I'm having more pain today, or if it's the side effect of the radon everyone talks about. Who knows. But I feel pretty bad. And I'm still not sleeping that well.

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#302504 - 06/22/08 10:20 PM Day 8/9 [Re: Megan]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
I feel like a caged animal.
Day 8, did two sessions of 4 hours.
Today (Day 9), I will have completed 3 hours in the early aft, and 4 hours this evening, to total 62 hours in 9 days. We took this afternoon off and did a short road trip to Elkhorn, an old ghost town.

Pain-wise, I'm not so hot. Still at 10mg pred and enbrel, but added celebrex and more t3s. Sleeping only with the help of zopiclone and muscle relaxants. I emailed a bunch of experts in the field, about taking prednisone while doing low dose radiation, but I haven't heard back yet.

People kept telling me you feel awful by day 2/3, so I was convinced I had either skipped that part, or was just one tough chickie. Until day 8, that is. It hit hard. I just re-read Pam's blog and noticed she wasn't doing so hot by day 8 either, so I will take this as an indicator of good things, and try to stay hopeful. (Really I just want to slam my head in the elevator door until I lose consciousness because I'm so bored and miserable. And if you think I'm miserable in my posts, you should seriously feel bad for Glen. He gets to witness this joy of a miserable beast I am. I'm sure he's thought about throwing me down the elevator shaft more than once today. lol) Oh it's a party here, let me tell you. What a test of character this is....

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#302505 - 06/23/08 10:50 AM Re: Another Mine Radon Report from Montana [Re: Megan]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 528
Loc: phoenix
I think it's great what you are doing. People need good feedback on different tx. modalities. I know I will consider doing radon if remicade fails me. for some reason I have more confidence in the european radon treatments. They have proven themselves to be beneficial over time.

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#302506 - 06/23/08 04:06 PM Day 10 - Time's up! :) 68 hours [Re: Megan]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
Day 10 - Well I had to get Glen to roll me out of bed and pretty much carry me to breakfast. Definitely worse now than when I started; I'm hoping this healing business starts soon. Flaring pretty bad, and very fatigued, although I slept last night quite well for the first time since being here.

A whole bunch of interesting characters showed up here today (repeats and newbies, from AS to RA to Lupus), which is unfortunate, since I've been mostly on my own, bored and lonely, for the past week. I must say, all the people I did get chatting with here, have been super interesting, and I think I would return just for chats with the people who come through here. That's been fun. You could seriously write a book on the people here, their stories, lives, wins and losses, dreams and accomplishments. I've met people who've been coming here for 20 years or more, and people who just started today. All very good people.

So G and I are putting in 5 hours today, in hopes of leaving here at dinnertime to make it home to Calgary very late tonight. Dying to sleep in my own bed and see how my kitty is doing. It's been an interesting trip. Hopefully this will work, and I'll be back next year for a refill! I will have totalled 68 hours by the time we get out of here tonight, which is exactly the same amount as Pam had on her trial run too.

Will post any progress as it happens...

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#302507 - 06/23/08 05:23 PM Re: Day 10 - Time's up! :) 68 hours [Re: Megan]
Angelmom Offline
Very_Addicted_to_AS_Kickin

Registered: 11/12/03
Posts: 8190
Loc: Oklahoma..where the wind comes...
Im here, with you, supporting you, cheering you, praying for you, thinking of you, hoping for you, dreaming for you....oh and for Glen too. Keep us updated!

Love ya girl, hoping and praying for the best.

Hugs,

Lisa
_________________________
Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.


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#302508 - 06/24/08 08:33 AM Re: Day 10 - Time's up! :) 68 hours [Re: Angelmom]
Orch Offline
Major_AS_Kicker

Registered: 09/05/01
Posts: 2192
Loc: Utah
I hope this does that trick, and the AS melts away. Thanks for giving us the updates. Let us know how it is going post mine. We may all want to make a trip there every year. We could have a party for people who used to be bothered by AS.

thanks
_________________________
Steve Orchard, Running from AS & MS

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#302509 - 07/02/08 09:07 AM 1 week Post-Radon Update [Re: Megan]
Megan Offline


Registered: 04/11/02
Posts: 3607
Loc: Canada
One week down. Still flaring pretty bad in every joint and on every medication I can get my hands on. I know it should only be a few weeks or less, and I should start feeling better!

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