Hi Lit Love,

All I can say is that for us, it was wonderful. It was so wonderful that I swore that I would dedicate an hour every week to put the word out on message boards, because I lived through this horrible thing with my daughter, and my sister only found out about it by accident after probably several hundreds of hours of internet research (she was scouring message boards in addition to research papers, and came across a sentence asking if anyone had heard of the Calmare treatment). It really concerned me that it was so hard for her (and she's an excellent researcher!) to find out about this treatment - if she had decided to go to bed a little earlier that night, she might not have stumbled across that one line, and she wouldn't have researched it and found out that major players like Mayo are working with it, and we wouldn't have gone to New Jersey and had such fabulous results, and my daughter would have been living with a spinal stimulator trial setup right now. Instead, my daughter is walking. WALKING! She isn't pain-free, because she's so messed up from 9 months in a surgery boot, but the RSD pain component is gone, and she is improving daily.

I joined 2 boards, and have since found out that there have been some suspect posts about Calmare. One admin (not here) was pretty snippy about it. I think any kind of deception is abhorrent, and it's a real shame that (apparently) there was some deception going on with this. However, you guys don't know me, and for all you know I could be deceiving, too. All I can do is continue to post here and share our lives with you all, since we all have this awful disease in common and can be a help and a comfort to one another, and hope that you can see that this is not a deception.

There will be three (I think) major studies coming out in the next couple of months, so hopefully insurances will start covering it, especially since it's a lot cheaper than any other treatment. I'm hoping that it will be the new first-line defense against RSD, because it's certainly less invasive and painful than any other treatment.

And frankly, possibly another reason that people post and then disappear is that it works - they feel that they don't have it anymore, so they don't need to post. God willing, my daughter will stay in remission long-term. When we first got home, I almost felt guilty posting with people with active RSD, when my daughter was doing so well. But then I realized that we just never know, and she still has so many side-effects from the treatments and the disease, so it would be OK to join and post and share with others about the many side-issues that we still face. And I can share about her experience with the spinal blocks and the Bier blocks and the meds and pt and all sorts of things, and also learn from other people (the hyperbaric oxygen whatever thing was new to me - I hope my daughter doesn't need it, but she might - who knows?)

So all I can do is post and share my personal experience and answer questions and read about other people's experiences and give and receive hugs and help, and hope that people believe me. This is not a disease that gets "cured" - the best case is that it goes into life-long remission - so I will continue to post, at least until my daughter is in remission so long that it really isn't helpful anymore and Calmare gets more well-known than it is now.