Hi oscarlonzo,
I see that this is your first post - could you share your personal experience with RSD? I have some responses for the rest of your post, which I'll put up when I get a few minutes.


Hi Deenamoo,
I'm SO glad to hear that it worked well for you!!! It's so great to hear of ANY treatment working, because this disease is so awful It's also helpful to hear when something doesn't work, because that just adds to our knowledge. I'd love to hear some updates from you as you have any, because personally, I like to hear information about a variety of treatments. My daughter has been in remission for a month now after the Calmare treatments, but she's having a LOT of fatigue still, kind of like the fatigue after the initial treatments. Are you having the fatigue issues still? Also, could you share a little more about what your RSD situation was before the treatments? Where did it start, what started it, did it spread, etc.

It's funny that you mention that you can feel cold again - that's one thing that my daughter was amazed at. One day I heard the bathtub running for a couple of minutes, then stop. My daughter came downstairs and said that she was running cold water on her foot just for the sheer pleasure of being able to feel cold on her foot again, instead of burning!

Hi Oscarlonzo,
I'm wondering where you found out the info you posted. Was it published somewhere?
Thanks,
Lori

No, it was not published. I was doing research on the company that sells the device and I noted that a study allegedly being conducted by Dr. Toby Campbell was at least six months overdue. Since the study had started over two years ago and involved only 30 patients, I found it odd that it would be so late.

Upon reviewing the "clinicaltrials" website, I discovered that Dr. Campbell had in fact removed his name from the study about a year ago. I was able to contact the engineer who was working with him to try to develop the "sham" device and he filled me in on the other details.

Fortunately for me, my "personal experience" with RSD is limited to what I have read posted by others.

I was drawn to RSD, in particular, by "a retired French prof -- retired due to disablity, not age, and certainly not by choice" who has a delightful blog called "elle est belle la seine la seine elle est belle."

There she has posted several times about the calmare -- the most recent one entitled "CALMARE: Help Stop This Scam!"

*admin edit*

Apparently, Dr. Campbell decided to present what data he had collected at ASCO. The board doesn't allow hot-linking so you'll have to google "Abstract No:
9635" at the 2013 ASCO meeting if you wish to read it.

He apparently did 14 of the planned 30 subjects before withdrawing from the study.

And his "sham output is neither a TENS nor MC5A and is designed to be nontherapeutic..." -- likely a reflection of the difficulty designing a "sham" for randomly generated electric shocks.

Even so, his final conclusion was "MC5A was not significantly different from sham therapy for the primary outcome."

In other words, the calmare was no better than a "nontherapeutic" buzz.

It looks like this is the blog that oscarlonzo is referring to: http://prof-de-rien.blogspot.com/201...this-scam.html, and this is the ASCO website, but I searched for the abstract he referred to and was unable to find it: http://abstracts2.asco.org/

This post is with my mrsD hat on....

Here is a link to the 2013 paper:

http://abstracts2.asco.org/AbstView_132_115259.html

It is a very very small study IMO.

The topic is chemo induced neuropathy, not RSD per se.

Note that originally the calmare did not include RSD as one of the conditions it treated.

Google "calmarett" and "treatmentprotocol**" and you'll find a list of conditions that the promoters claimed it could treat:

"Post-Surgical Neuropathic Pain (PSNP)
Post-Herpetic Neuralgia
(Sciatic and Lumbar Pain)
Narrow Canal Syndrome SCS
(Putative neuropathic pain)
Failed Back Surgery Syndrome (FBSS)
Pudendal Neuropathy
Brachial Plexus Neuropathy
Low Back Pain
Phantom Limb Pain Syndrome"

They also claimed they could treat pain associated with a variety of "ONCOLOGIC PAIN INDICATIONS" and listed pretty much every kind of cancer there is.

However, the ONLY blinded, randomized, and controlled study that has EVER been done with the device is Dr. Campbell's study of CIPN.

And when faced with a truly scientifically valid test, the calmare failed miserably.

The size of the test is irrelevant for the simple reason that the seven patients in the test group demonstrated zero effect.

He really didn't need to go any further -- the handwriting was on the wall. Seven in a row showed no benefit so why spend time, money, and effort trying to track down someone it might eventually work on?

But even without the study, anyone considering the therapy should consider whether it's reasonable that a single device applying a current through surface electrodes attached to the skin could possibly treat every kind of pain from every kind of source.

And, of course, as best I can tell, the therapy doesn't come with a money back if not satisified guarantee. So if it doesn't work, you can bid adieu to your give or take $2000.

As the saying goes, "buyer beware."

oscar, there are quite a few errors in the things you're saying. Unfortunately I can't get to them quickly, because my daughter is in the middle of finals here in Arizona, and supporting her is a higher priority. However, this one was so easy to refute that I'm taking a minute to do so.

The doctor I went to, plus the 3 other doctors at clinics that I've called so far, will ALL reimburse you for any treatments not used. Typically the protocol is 10 treatments, and some ask for payment up front (not unusual for non-insurance-covered treatments; every kind of non-insurance-covered treatment I've ever had requires this) while others will offer a discount for payment up front. But ALL of them will reimburse you for treatments not used.

Also, ALL of them say that you will know by the first treatment, or second at the latest, if it will work for you or not, so there is NO REASON for a person to continue treatment and "lose" $2000 if it isn't working.

If by "doesn't work", you are talking about if it comes back sometime after the treatments (for the many people that it has helped tremendously, including my daughter and myself), they tell you UP FRONT that if it works, you might need some "booster" treatments, but the difference is that because you'll come in before your pain levels are high, you'll need less treatments. And NOTHING, including all the treatments that my daughter went through before Calmare, came with a "satisfaction guaranteed or your money back". Calmare is no different.

So I hope that clears up one of the errors in your post.

*admin edit* You say it seems strange that people come to discussion boards and make long posts praising it. However, I don't think it's strange, because that's what I did when my daughter was put into remission after the treatment, and I saw her walking normally down the hallway at the hotel for the first time in 10 months. I was absolutely THRILLED, and I wanted to share it with others that may not have heard about the treatment. What I think is REALLY strange is that people that don't have RSD, and that don't seem to even know anyone with RSD, are so invested in popping up at the first mention of Calmare and posting very similar negative talking points about it (this is happening on several boards). Now THAT seems strange to me.

*admin edit*

Anyway, GTG pick up my daughter, but I'll get to the other points that have problems in your multiple posts when I get a chance.

Well, of course, it seems only reasonable that they "reimburse" the patient for any treatments not taken -- although, in that case, it seems odd to demand full payment up front, doesn't it?

As far as any claim they can tell you within only a few treatments whether it will help, that doesn't appear to protect protect the consumer if the practitioner turns out to be wrong.

If the practitioner misjudges and the patient ultimately gets no benefit, will the patient still be stuck with the $2000 cost?

By the way, did you ever stop and ask them WHY it costs $2000.

After all, the device itself undergoes nil wear and tear during therapy -- it just generates voltages beneath the electrodes.

The only real expense to the provider is the cost of the electrodes and that's only a few dollars.

So why not simply offer a money back if not satisfied guarantee?

Surely satisfied customers would be thrilled to pay if the therapy worked and relieved their pain.

And if one or turned out to be a "chiseler" now and then, the practitioner would sustain minimal loss.

It seems perfectly reasonable to me.

I removes the risk from the consumer entirely while exposing the provider to minimal financial damage.

And a miraculous painkilling device like the calmare surely would attract swarms of customers under such risk free conditions, wouldn't it?