Friday, September 27, 2013

"Testimonials don't lie," and Other Lying Lies

For those people who keep contacting me in hopes of converting me to being a believer in the "testimonial" method of explaining the miracle of CALMARE / Scrambler Therapy for CRPS, I would like to share with you the type of "testimonial" video that does, but still only to a degree, have an impact on me.

This is Dr. Anthony Kirkpatrick, director of the only CRPS / RSD research center in the world so uniquely dedicated (The Reflex Sympathetic Dystrophy Treatment Center and Research Institute in Tampa, Florida) and his post 3-day continuous subanesthetic ketamine treatment interview with a patient with longstanding CRPS as well as sciatic nerve injury.

Subanesthetic ketamine treatments did not work for me, but I do not then go out and give negative "testimonial" diatribes about it.  I understand the science behind it, and knew going in that my protocol was not the optimum one (I couldn't reach the desired dose; I was fighting a very active osteomyelitis; I was going through a period of severe spasticity; plus, success in longterm sufferers is harder to achieve).

My insurance covered the treatments, something they won't do for CALMARE.  I did outpatient treatments, roughly 3-4 times a week.  At the end of this several month-long effort, we attempted to approximate Dr. Schwartzman's famed protocol, which he was kind enough to send me.  I even weaned myself off of methadone and percocet -- fast and by myself (not the recommended way, but I wanted to afford myself every chance of success, and Dr. Schwartzman wants all those glial cell endings available for reprogramming!).

My point is that the CALMARE snake oil pitches are vague and full of, frankly, nonsensical statements. Compare this video by Dr. Kirkpatrick with what is offered by Dr. D'Amato.  Then try and tell me, as a recent reader did in a comment, that "Testimonials don't lie."*  Puh-leeze.

3-Day Ketamine Treatment for Complex Regional Pain Syndrome
uploaded to YouTube by dockirkpatrick


Calmar Pain Relief Therapy - Nancy's Testimonial
uploaded to YouTube by CalmarPainReliefcpr·

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* Kelly Ann Sipes (Phillips) said...Actually Bianca, there is evidence that supports the Calmare/ST, and the workings of the "non pain" signals that are emmitted from the machine replacing the "painful" nerve signals(which is CRPS). All of this nerve pain and mis information of signals to the brain then trigger the autonomic response and wind up leading to the swelling and color changes, hair/nail growth and microvascular issues that cause the osteopenia. My daughter had the severe color changes and dystonia and when she was hooked up, after he found the correct placement of the leads and the correct "non pain signals", her color returned to normal and her toes are starting to become less dystonic. I have been in the medical profession for over 20 years and have never witnessed anything like it before.
There is no cure to CRPS only treatment and all the other therapies are for the most part invasive, have side effects and for our situation did not work. The blocks, the ketamine, the SCS, the medications....The negative far outweighted the slight amount of relief if any that she would get. You need to get to the root of the problem and that is the nerve pain and how the brain is "mis-interpreting" these terrible signals and causing the myriad of other issues. Dr. D has 2 books of testimonials of before and after treatment and gets permission from his patients to record their progress. He has had some patients that were bad, they looked as if they were going to loose a limb. It is hard to discount that 90% of his patients have improvement. That is a huge number, and scientific research or not clinical trials or not it is a moot point. It works. Testimonials don't lie. Not everyone will respond but 9/10 are not bad odds. I would reconsider and look into it. And before you go and bash someone and call people names and accuse them of something that they are not guilty of you should have your "research" done and done correctly. It would be ashame if someone was to base their treatment choices on your lack of personal experience.
Best of luck. [emphasis mine]
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This is where I am supposed to blithely slough off a remark like... "different strokes for different folks" or even, I dunno, "beauty is in the eye of the beholder." Or "a TENS unit by any other name would smell as fishy."

Instead, I think I'll post this cool graphic I stole from Daily Kos yesterday. I knew I'd want to use it one day but didn't think I'd be prodded to do so this soon!

© 2013 L. Ryan

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