Kickas.org Forums Treatments, Drugs and Alternatives Alternatives and ALCHEMISTS Montana, here I come!!

What a strange two weeks it has been. I have been taking LDN and celebrex for 4 months now. Two weeks ago I began feeling a tiny bit of stiffness in my mid back. Before I knew it WHAMMO, I have a 2 inch section of my spine that will no longer bend. It is in my mid back. If I arch my back hard, it feels like am getting poked with a stick. Panick. I didn't have any fusing until this. I was scared that it had happened so quickly. So I had an appt. with my Rheumy and he said, "yes it probably is a fusion." Well in my mind, I had told myself the next step if LDN didn't do enough, was to try Simponi, the new once a month biologic. The Rheumy said, "Probably not." He says simponi is very similar to enbrel, and I am allergic to enbrel.

I'm the kind of person who needs a plan in dire circumstances such as these and said Rheumy pulled the rug out from under my PLAN. So late last night I stumbled upon some Montana Radon mine posts and with much finagling and sweet talking today we are heading to Montana so I can do the Radon therapy Oct 2 through Oct 11. I even think another KA-er "H20girl" is going to be there for some of that time. I am psyched. I'll let you know how it goes!!

-Donette

D... this rheumy sounds crazy and silly. The whole point of tnf's is to stop the process and if you aint got no fusion yet... to prevent it... so you should be trying each and every one til ya find one that is not allergic for you.... it' s exactly what i've been going through 'cept I already have fusion from SI's up about 5 inches, SI damage, and my neck is throwin out syndesmophytes trying to do the same thing....you want and your doc should want to prevent this by all and any means availiable. the chemical/biological make up of enbrel as far as i understand is not the same as simponi at all...simponi is more related to humira, which is what i am now trying. one week so far and no reactions and some 30%? improvement in symptoms. You remember enbrel went wrong for me too, in a very similar allergic way....And if humira goes bad then i will try remicade etc etc. Just makes me angry cause i want the best for you...and i don't think that one reaction to one tnf should write off the rest. Have fun i the Radon baths... hope you don't come back glowing green with superpowers or with a few extra toes...haha. anyways.. have the best time.. will miss ya!! Rob

Actually superpowers would be ok...

Hey Donette,

I live in Montana!!! I have not heard of these radon baths before so am curious! Where specifically are you going? If you have this tx, will it in any way prevent you from or delay any other form of tx upon your return home?

My concern for you is as Rob said that please don't give up on other tx's, it necessary change your rheumy!!

I and my daughter see a very good rheumy in Billings. I rcv remicade infusions there and it is changing my life to the better-unbelievable how fast it is working! It would be great for you too maybe-is it an option?

I wish you loads and loads of luck and well being - enjoy the beautiful state! Let us know when you return, I'm curious!! Thx

I agree that I should try all the tnf's, at least you would think the decision would be up to me, anyway. This Rheumy "says" he is open. But in all honestly he is open as long as you let him make all the decisions. Sometimes it seems like it throws these Rheumy's off to all of a sudden have a young, opinionated, well-read on her disease, (did I mention opinionated??? ) kind of patient, verses the kind that says, "OK Doctor, thank you Doctor."

I HOPE HOPE HOPE this radon thing works for me. What will be interesting to see is if my crp goes down after the treatment like the research says it can. I did have all new labs drawn last week. That will be interesting.

New toes? That would be awesome, as long as they don't hurt from AS like my original 10 do!!! Superpowers would be cool. Hopefully I don't accidentally shoot a lazer beam out my eye on my return visit to the rheumy.

Yikes, I feel really bad for you and your neck. My neck is bar none the most painful place I have had AS. I read a book by an Aussi PT named Robin Mackenzie back when I was still trying to figure out a Dx. He has a whole slew of neck and back stretches/exercises. I still do the neck ones a couple of times everyday. They really help me.

Here's wishing your spondylophomytes don't find each other!!

-Donette

Hey Mama,

It is in Boulder, MT www.radonmine.com

This Health mine is just for breathing radon not bathing but you can soak in the Boulder Hot Springs (not sure of radon content there). If you read older posts here in the Alternatives forum like from h20girl and sbrian, they have been there. h20girl's blog has good info too. She documents her entire first 10 day stay in 2006. The best one is in Yachymov, Austria. It is a radon spa, with soaks, massages, PT etc. That is unfortunately a little to far for a family vacation for us!!

I TOTALLY thought I would be continuing to try the biologics. My rheumy is apparently gun shy, or afraid of a lawsuit, I'm not sure. My biggest prob is that the next rheumy is 4 hours away and I have little kids, so traveling far for doc appts is a real pain.

To my knowledge radon therapy does not limit your future treatments. They do say to wait 3-6 weeks for the full effect of the radon to kick in. We are making a family trip out of it as my kids are out of school for potato harvest. Yikes, all 5 of us in a camper for 10 days. It will be an adventure!! We're going from Oct 2 through Oct 11.

I'm glad to hear remicade is working for you. If the radon doesn't work (hoping it will) then maybe I'll have to start twisting my rheumy's arm or gettin' tough with him!!!! If I don't my parents are going to. Sheesh, I'm 35, but my mom says I'll always be her baby!

Good for you Donette -

I'm sitting in the Radon Room as we speak. I'm so looking forward to seeing you up here - we'll overlap for a couple of days anyway. We have 2 gen's of A.S'rs from our family here at the moment - my hubs, myself, my NYC daughter and my baby girl. There are probably about 4 other people w/AS up here at the moment (none are familiar w/the KickAS site).

One quick story that I heard yesterday from a guy w/AS was cute...J. comes at least once a year. His first time was several years ago and he couldn't move his neck or lift his arm. He put his time in at the Free Enterprise Health Mine but was disappointed when he left because he was still in about the same shape and thought maybe it just didn't work for him. He was back at home for a couple of months and one day walked up to his barn. The neighbors drove by and honked and waved. Out of some instinct he turned his neck (heard a loud cracking) and lifted his arm (heard another loud crack) and realized that he had just turned his neck AND lifted his arm to smile and wave. He ran home and his wife was inside thinking oh boy, he's really lost it this time, until she saw what he could do. He has been able to lift his arms, turn his neck and wave ever since.

Another lady I met could share my same medical charts - A.S., U.C., IBS., Fibromyalgia, asthma. She's been coming since 1994 w/nary a symptom left. Like me, she takes probiotics now - and a biannual mine visit.

I just took a hike up the hill w/my daughters. Beautiful weather at the moment and not too awfully crowded.

I think you'll love it.

See you soon. Let me know if you have any q's no matter how little or big.

Tshuss.

Thanks so much. I just got off the phone with a friend of my father-in-law (Marcelle and Bill Weldon) from Boise, Idaho and they have gone to the Free Enterprise Radon Mine every year for the past 17 years.

In August they met a 32 yr. old male named Shawn from Wichita, Kansas with AS. 4 years ago his docs told him "sorry, there is nothing else we can do for ya, go get on disability." He came back after 6 months, and now once per year and he says he feels so much better. He can hunt/fish with his 9 yr old son and is doing great.

I am so excited. I stopped taking my celebrex and LDN, just because I want to see what the mine does by itself. My new back fusion (lumbar) is ridiculously painful and I can't wait to get there on Oct 2. It's new and fresh and maybe still reversable with the therapy. Do your daughters have AS too?

Too bad the other ASers up there aren't using KA!! It has seriously saved my sanity and is the reason I found the FE Mine through your post and blog.

Dang I'm so sorry for your list of ailments. What is UC? I'm guessing ulcerative colitis. Girlfriend, you are running like superwoman and you have all of those ailments?? Can't wait to get to the mine. See you soon.

Good luck, hope it works great for ya!!
Shauna

Donette, I want to start out by saying I am NOT a Dr. but I have my doubts whether your pain is caused by fusion. For me AS presented itself in January and I found myself in physical therapy shortly thereafter (but completely undiagnosed at the time so the physical therapist did not know what she was treating, she just thought some back related problem). At that time arching my back backwards (the opposite of a cat bend) was soooooo painful. She would have me arch back over a rubber ball, or arch my back backwards, which I could NOT do without crying, she said it was as if part of my back was "stuck" (this is where the thorasic spine meets the lumbar (that is the part for me that was in incredible pain)). She worked on this part of the spine tirelessly (and again I was in incredible pain and she said we just had to keep "working"). Well anyway 9 months later and diagnosed with AS I am on Enbrel and the mobility in my spine is much, much better and much less painful. I have my suspicion that the lack of mobility was due to inflammation and NOT fusion, since I am more flexible now than 9 months ago. I know you can't take Enbrel, but can you try another biomed? As I understand it fusion takes much longer. Again, I am not a Dr. and I might be wrong, but I just wanted to share my experience with you as it might give you some comfort. I found that gentle yoga also helped a lot. I suspect you are having a flare in your spine right now. . .

Thanks gobruins2,

You're probably right. There is just this very "odd" feeling in my spine, a 2 inch section that won't bend back.
The doc said "no" to the other biologics because I was allergic to enbrel, that's why I'm heading to the radon mines in a couple of days. If I want to try the other bios, I'll have to head out of state to find another doc. Unfortunately Rheumys are few and far between in Idaho. Thanks for your words, it makes me want to keep trying to move anyway. My first flare in my spine, hmmmmmmmm. Can I just say "whaaaaaaaaaaaa."

Ugh, I thought I had it bad when just the rest of my body was flaring. This is really bad though.