Newest update - my daughter's remissions are still staying at about 6 months. They had started at 3 months, then increased slowly to 6 months, but have stayed at 6 months the last few times. But we'll take 6 months, for sure!!

She came out of remission right on schedule (I was just thinking "hasn't it been about 6 months yet?" and looked at my calendar, and it was just 6 months) and crazily enough, BOTH machines in Arizona were getting serviced, so we had to drive to Utah. We asked our original (and the best, IMHO) doctor, the one in NJ, to fax the pad placements over to the Utah guy, and he did, so they used the same pad placements and she responded nicely and got back into remission after 5 treatments.

I'm done with the cancer treatments now and everything was clear in my post-chemo visit, and I'm due for my 3-month check-up in a couple of weeks. I got my blood test done, and they'll tell me the results (God willing, I'll be clear!!). I developed post-chemo neuropathy in my feet, and I think I will try out Calmare on my feet (that's what it was originally developed for, IIRC).

Anyway, she's back in remission and starting on her last semester of high school, still drug-free and out of pain during her remissions. That's my latest update, and hopefully the next remission will be longer than these last ones. Also, I have the energy now to start the insurance fight and try to get our new insurance to cover the Calmare treatments. I'll just use the same 3-page letter I wrote to our last insurance company, and hope it works, too. I was very encouraged that our last insurance company agreed to cover the treatments, and I'm seeing some other companies have started covering it here and there too.

Update for those interested - my daughter is getting the Calmare treatments again. This last remission lasted about 5 1/2 months again. We were hoping for longer this time, but we'll take what we can get! and 5 1/2 months without pain or drugs is just so wonderful.

We were able to get in for treatments really quickly this time, so she might only need 3 "booster" treatments this time around, instead of 4. Thank goodness, the machines have finished being serviced and are back in Arizona, so we only need to drive an hour for the treatments instead of going all the way to Utah!

(whoops - she just came in and said there was a little pain starting, so it looks like we'll need that fourth treatment)

Anyway, the treatment is continuing to work very well for her, and thank goodness, the dr. is planning on keeping the machine because he's been very happy with it. Her last 3 remissions have lasted about 5 1/2 months (the first few lasted about 3 months). I think I'll start the fight with my insurance company to get it covered. I actually won the fight with Blue Cross, but a month later, we changed insurance companies! So now I'll have to start the fight with Aetna. I guess I'll just start with the same 4-page letter and go from there!

Gentle hugs, prayers and good wishes for those fighting this disease!! I'll continue posting updates whenever I get more news.

So glad to hear your daughter did well with Calamare. I have seen Dr. D'Amato in RI. It was very helpful for me. Not a complete remission, but my quality of life has greatly improved.

As far as insurance coverage, just keep trying. I am on workman's comp. My insurance had never payed for Calamare before. With the help of a great lawyer, pain specialist, and Dr. D'Amato I was eventually able to get it fully covered (including paying for my hotel stay while I was there). I even spoke to the CEO of the insurance company on several occasions. Once it was finally approved the CEO sent five senior insurance executives to visit the facility and speak to me during a treatment. Someone has to be the first to get a new treatment covered. I'm glad I was able to pave the way for someone else.

I'm very glad to hear that you had a significant improvement!! and also that the insurance company looked into the treatment with such senior employees. I'm SO glad to hear of anyone with RSD having an improvement with any treatment!

That's so encouraging to hear of your success with the insurance company. I picked up the papers I needed to start the claim today, and am going to start the fight!

Some more info I found out today - I checked back on the clinical trials webpage, and three trials have now been completed. Most of them are for chemo-induced peripheral neuropathy (which I have now after going thru my cancer treatments ) but there is also one for back pain and one for shingles. It's really encouraging to see the studies starting to branch out into different areas. That will help with insurance company battles, too. You can look at the studies by going to clinicaltrials.gov and searching for "scrambler".

The back pain trial had great results. It was a double blind study. The Calmare patients had an approximately 40% reduction in pain, while the sham treatment patients didn't have any improvement. That's pretty significant! The sample size was small, but at least we're making some progress in getting studies done, and it should keep building. I think it's a great idea to do testing for shingles treatment - I hope that works!

Two chemo-induced peripheral neuropathy studies had results, too, but I don't understand how to read the results. I have a degree in computers/math, not medicine, and I just don't understand the format they used to show the results. The back pain study was really clear, but these studies just didn't give enough info for me to make sense of the results. I think I'll call the Mayo clinic (one of the sponsors) to see if they can explain it to me, or maybe someone here can read the studies and explain it to us.

When I get some time off from my daughter's medical issues, I think I'll try Calmare for my chemo-induced peripheral neuropathy, especially if I succeed in getting Calmare covered for my daughter.

No treatment works for everyone, but this one sure worked well for my daughter, and I'm glad to hear it helped you!

For those who have responded well to Calmare therapy, does the redness & swelling decrease while in remission? Also did the muscle spasms stop?

Trying to get a better idea of what remission with calmare means.

Thank you!

I have been suffering with RSD/CRPS for 26 years today, this day *exactly* and I have yet to "understand" what remission means. Is it that you plateau? That the symptoms stop getting worse, but you don't get better either? Is it that?

SloRian,
I live in Santa Fe, NM and have new onset RSD after a minor ankle fracture 8 weeks ago. I have a long complicated history of neuroimmune diseases and need to travel by RV so I can control my diet and other things or the trip will be counterproductive. It would mean a lot to me to know who you had a good experience with in Arizona, or even Utah. I'm so happy for you that you found something that helps your daughter. I have a sick daughter too and nothing makes me happier than her improvement.
Warmly,
Jamie

P.S. I just joined this forum and it won't let me post my email address and I don't see how to send you a private message. Can you figure out how to contact me privately? Or reply with the town. Is it in Mesa?