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Joined: Apr 2008
Posts: 217
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
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I have also posted a few studies in this forum showing indeed that the treatment does do some good.

It is easy to understand people's reactions - its the same reaction I get from people when I tell them I try to get 70% of my calories from fat... It just doesn't matter how many papers I have read and how much I have checked things out - anything that illicts an emotional response in someone closes the door on any possibility of rational argument. Of course there is always the obvious "its my business" response...

I have read that low levels of radiation could actually be stimulating some part of the immune system, which would probably lower the probability of getting cancer anyway. I would say the risks from the meds are actually far greater - if she has a chance of lowering her meds she will be better off.

So - tell us who else is down there in the mines with you?


**************** Really Feel life. Every second. One breath and one sound at a time. Joy is always there, waiting on the other side of your mind.
Megan #302491 06/18/08 12:48 PM
Joined: Sep 2005
Posts: 141
Journeyman_AS_Kicker
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...then I must be a raving lunatic! Hey Megan,sorry to hear you're not getting the support you deserve.

Anyway, I am reading your posts regularly and am excited to hear how you are doing and can't wait to hear what the next 12 months will bring you. At the moment I'm on vacation in Florida-visiting my family for the first time in 3 years. Not only was I able to survive a 15 hour non-stop flight from Dubai to Atlanta without even a twinge of pain or stiffness, but I'm walking the beach everyday-swimming for hours--shopping---all this thanks to the 3 weeks I spent in Jachymov (no pain, no inflammation, no meds).
You're doing the right thing-it will be worth it, trust me!

BTW-the radon treatments at Jachymov always make me flare as well as make me really fatigued. For most people the inflammation and pain only goes away long after the treatment (4-8 weeks later)--I know I've said all this before, but it's important to keep this in mind when you're feeling like crap and stuck in a cave (or stark naked in a stainless steel tub in the middle of Western Bohemia) thinking to yourself "what the hell???????"....

All the best!
Luigi (BTW...this is a heavily edited version of a PM--it was bounced back because it said you've over-extened your PM quota)

Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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hi megan,

i think i'd try it if it weren't so far away.
anything that just might work is worth it.

the comparison to a CAT scan was a good comparison.
i didn't know that, but that certainly puts it in perspective.

good luck and keep updating us,

sue

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Hi Megan,

We all have to be advocate for our own well being. It takes courage and determination to do what you are doing. Don't let anyone else to tell you otherwise.

Ali

Joined: Apr 2002
Posts: 3,607
Megan Offline OP
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Well... Brad and I were definitely the youngest down here. lol By at least a few decades. Ah well, they think I'm cute, it's good for my ego. They sure thought Brad was a strapping young fellow too. It's too bad we didn't overlap our stays by more than a couple hours!
It's actually been pretty fun hearing stories of success and other random tales. Today there's about 12 people who are "doing time" in the mine and the radon room. Probably the busiest day I've seen yet.

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Megan Offline OP
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Luigi - that is fantastic news! I need to hear stories like that right now. Have a great time visiting with your family. They must be so excited to see you doing so well.

And yes, I did have the "what the hell..?" moment myself the other day, sitting in my winter hat, 3 sweaters, and a blanket, alone in a cave. Kinda spooky.

(PS - Cleared out my inbox - thanks for the heads-up!)

Joined: Sep 2001
Posts: 1,661
Platinum_AS_Kicker
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Platinum_AS_Kicker
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Great response Megan. None of the decisions we're forced to make are taken lightly in search of relief and quality of life. Unfurling the long insert and reading the fine print that comes with enbrel or humira is a sobering decision to make before deciding to inject but it's a very personal decision. When the world was flat, the naysayers told Columbus he was a fool for sailing off the edge of the earth.



This bunny Kicks AS !
Megan #302497 06/19/08 01:33 AM
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Megan Offline OP
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Yesterday I put in 8 hours and today I should be looking at about 10, for a grand total of 33 hours so far. 5 days to go; half way there! Spending more time in the radon room upstairs now, as I get cold and lonely downstairs in the mine.
Nothing going on except some serious insomnia. Not exactly helping with the crabbiness. Grr.
Glen will be back here tomorrow, so that will undoubtedly improve my mood! Although he's pretty sick, so I'm not sure people (including myself) will want to be in a confined space with him. There are a few of us here on biologics.

Joined: Nov 2003
Posts: 8,190
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Hi Sweetie,

Just wanted to tell you that I am thinking about you!

I am keeping up with your posts and excited to see if this helps you.

I miss talking to you, but we will catch up when you get back home and get things settled.

Miss you much!

Lisa


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

Joined: Sep 2001
Posts: 2,192
Major_AS_Kicker
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Major_AS_Kicker
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Posts: 2,192
What did other people come to the mine for? Are they all autoimmune diseases? I guess I am just wondering if it would help AS, and the MS that I have.

Good luck with your treatment, and thanks for keeping us informed.


Steve Orchard, Running from AS & MS
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