has anyone besides luigi done it lately. I havent heard from him for a while. I am seriously considering going in jan. i figure it could give me up to a year of relief and by then mabe the stem cell transplant protocol could be done by dr. burt.

Hey Finnari- RC Pilot was there back in April. Let me know if you need any information!

Luigi

i sent you a message luigi

booked my stay jan.10-31.

anyone else want to come spend some time in the exciting town of jachymov in the middle of the winter getting naked in radon baths it would be great!!

Is this the one in Czech Republic?

I like the idea of this one in that you don't have to go down into the mines. To me, the least comfortable aspect of going into the Heilstollen was the train ride into the mountain. Something about a long slow ride into hot, humid, close quarters with non-english speaking people got to me a little.

I don’t think I can swing Jan 2011, but am seriously thinking about returning to Europe to give this a try. Please do keep us posted on how this goes for you.

I just booked my flight so I cant back out. Looking forward to it. Three week adventure!!

BTW it is the one in Czech. I choose it because of the experiences of luigi and the fact is has the highest concentration of radon.

Sounds like you have the right attitude to make an adventure out of this. I hope all goes well and look forward to your report.

Between here and a few other websites, it appears that only a handful of people have tried radon and posted. If your experience is anything like mine in Austria, you’ll see many people with AS. I probably saw more people with AS on my one little train ride in Austria than I’ve seen in my entire life in the USA times two. That’s not saying much considering I can still count all the people I’ve met with AS on my fingers. Anyhow, I’m pretty sure more European AS patients are treated per day with radon than AS patients post on these forums.

I guess my point is what seems fairly radical here is considered fairly normal over there.

how long did it work for you?

I only checked it out while on a ski trip. I went on one ‘exploratory’ visit into the mine. In order to be clinical, I think they recommended something like 7 exposures over a two week period. So I didn’t notice anything either way, although I was a little beat the afternoon after my visit. I’d thought I’d hike around town, but ended up taking a nap instead (that’s not like me).

I’ve contemplated about going back, but that would require me to save and plan a little. So far Enbrel, swimming, and some Celebrex seems to be working pretty good. If there was enough interest, I wouldn’t mind trying to organize a group trip there. Even if only a few American went at the same time it could be more enjoyable.

That’s one of the reasons I really interested in your feedback. There are so few data points to make a decision upon… even after seeing it firsthand. I know in the back of my mind I always have that option and wouldn’t hesitate to use it if everything else quits working. Although, I have to say… the skiing there is nothing to write home about.

Yea enbrel is a miracle medicine. I have been on it for 10 years but it has reduced it's effectiveness. I tried going off it this summer doing the NSD diet and it was a disaster. I have never been in so much pain. I am back on it and I say it works around 50 percent still. But my plan is to go off of it about a month before radon. I hope I dont suffer too much. But from the feedback of luigi and the evidence this could have the same effect that enbrel originally did.

but your right the committment is big. I am going for three weeks. that's a long time and a lot of money.

Hi Finnari - good to hear that you are giving Jackymov a go! It would be great if you could share your experiences and get some more personal accounts out there.

If anyone is interested in Radon thearapy from the point of view of someone with AS, feel free to check out my experience at the Gasteiner Heilstollen:

http://www.richpics.co.nz/Family-and-Friends/My-Radon-Experience/9902987_FBwhi

Happy to answer any questions.

Rich

Interesting that I asked the liason there to ask the doctor if I should stop taking my TNF inhibitor enbrel before I start there treatment. the answer was no it's fine to continue.

Not sure how I'm going to handle this yet. My feeling is to stop enbrel and go with this treatment and when it stops working to use enbrel as a stop gap measure before doing it again.

I was in jachymov last April may for the second time and planning to return in April 2011. After 3 weeks of treatments, the results were the same as in previous years: It took six weeks before any noticeable improvement and lasting for about 10 months. From the patients I've met(some have been going for treatments for 15 years) the degree of result depended also on one's lifestyle/diet and mental outlook. My fist time I experienced some serious flares after the treatments, and much less after my second time.

Good luck in January. I suggest you bring things that will keep you occupied and brush up on German. Give my best to Dr. Jindrich. He speaks good English.

Thanks RC I was hoping you would chime in. I'm glad they worked for you. Did you take any TNF inhibitors? or other meds?

Sorry for the delay in answering your question, because I've been out of town. The only medications I am taking now is some voltaren 75mg/day mainly for my swollen left foot. Other than that I am on vitamins, homeopathic and mineral supplements. In addition I am on a low starch no dairy product diet. I paln to return for my third year in the April/May time frame. Best of luck in Jachymov. Hope your treatments are as successful as mine and feel free to contact me if you have any additional questions. Best, RCP

Thanks RC. I actually saw your review of the hotel on a travel site. You mentioned the food was not the greatest. i eat a no wheat diet and am taking some of my own food.

Was there any restaraunt in town that you liked? Is there any entertainment/bars in town?

I am bringing my yoga mat, a lot of books/movies to occupy my time.

You can request special meals, however; it's not the greatest. Forget about restaurants in Jackymov. On has to take the bus to go into the town of Kalovary.

I leave Sunday for my three week treatment. It seems crazy I'm going to some eastern europe town to soak in radon baths but what the hell here I go.

Hey, best of luck. I'm based in Vienna, not far from Jachymov. There is a very active AS selfhelp group in Vienna and they regularly go to Jachymov together for a few days. They really like it there.

It is something I'd like to try one day also. Over here we are 'spoiled', as we have the radon mines (and a stay there can be paid by Austrian social services)and Jachyomov, both within easy reach.

Let us now how it went.

Christina

I was reading a report from an Aussie physio who runs an AS management programme here. She visited Bad Gastein and another radon mine when she was at a world AS conference...apparently in Germany every person with an AS diagnosis is entitled to a 2 week government-paid stay at a radon therapy resort - mine visits, massages, hydrotherapy and stretching / strengthening classes included!

Ich möchte ein deutscher Staatsbürger sein!

Several years later, and I'm researching the Gastein for myself. Your link no longer works, RichM, might you have this saved elsewhere? I'd love to read about your experiences!

Thanks so much,
Summer