Calmare therapy for neuropathic and chronic pain

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Hi to all!

Was wondering if anyone has heard of "Calmare" treatment for neuropathic and chronic pain for cancer patients? My oncologist will be introducing this treatment option into her office and was wondering if I'd be interested. I still suffer from chemo induced neuropathy as a result of using Ixempra; despite having finished chemo. over a year ago.

Would appreciate feedback of any kind.

Thanks in advance!

Comments

  • LevMyshkin
    LevMyshkin Member Posts: 1
    edited March 2011

    These treatments are used in quite a few locations around the US, including for CIPN at Walter Reed Army Medical Center.  Would you be kind enough to state which office you are going to that may be adopting it?

  • rrtzmd
    rrtzmd Member Posts: 8
    edited March 2011

    ...the "Calmare" is nothing but a quack medical device...it functions as a TENS device and is approved as such...the people trying to sell the thing, however, have come up a physiologically impossible line of nonsense about how it "scrambles" signals along "artificial" neurons as well as other claims that are simply science fiction...if you're interested, I provide greater details in my responses to an article posted here:

    seekingalpha.com/article/228645-competitive-technologies-more-frequent-sales-to-come?source=qp_article

     ...I also mention some of the shenanigans the company has tried to pull in conning people tto believe this thing has some merit...whatever effects it produces are purely placebo...it is NOT covered by insurance...and some of the clinics offering it are charging up to 250 bucks per treatment -- a treatment lasts only 30-60 minutes and a minimum of ten are usually recommended...at least one clinic -- one, I believe, associated with Sharp Health -- demands cash payment up front -- no credit cards accepted...if you have the cash and still want to try it, I suggest you request a money-back if not satisified guarantee... 

  • carcharm
    carcharm Member Posts: 486
    edited March 2011

    I've never heard of calmare but I have had the tens unit therapy and it did help my pain from my broken ankle. It's a subtle change that allowed me to be less rigid. If nothing else it was a form of massage for my contracted scars.

  • Sable43
    Sable43 Member Posts: 91
    edited March 2011

    To rrtzmd

    I've read your negative posts on other sites that mentions Calmare treatment. I don't know what your agenda is but there are reports of people who've had success with this therapy and I wanted to know if anyone had either heard of it or received treatment from this type of pain management. I feel it necessary to inform women of any alternatives if it can be of help; what may work for some may not necessarily work for others. It's the primary reason I joined this site, seeking advice and opinions of others that might be of help to me. I happen to actually suffer from neuropathy as do many women on this site and I'm sure they appreciate any mention of alternative therapies available. 

    I'm curious as to why you look at this as a "quack device" when reports and testimonials have been positive? I was looking forward to treatment; a means to end my pain. Apparently you've done what you were set out to do which is cast doubt on what might be a promising means of treatment for many people who suffer from cancer pain and chemo induced neuropathy.

    I thought the purpose of this site was to provide options to those seeking help. Not purposely undermine what could have been a thoughtful and in-depth conversation about an alternative treatment.

    "No" I don't own stock in the company and "No" I don't have several hundred dollars in my pocket to fork over at a moment's notice. But I have hope; hope that I won't have to continue taking pain meds in order to function during the day and to go to sleep at night. I lost my job as a result of being unable to tolerate the pain; which required me to be on my feet for several hours during my shift. I'm willing to look for answers and am relying on my doctor to help me.

    I question your real reasons for trolling this site and wonder if you're a medical professional with something to gain or an ax to grind.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2011
  • Sable43
    Sable43 Member Posts: 91
    edited March 2011

    To 1Athena1 and all on the site,

     It is my fault for when I started a new topic I inadvertently put it in this section when I should have put it in the alternative therapy area. I apologize for my mistake and will delete my inquiry.

  • apple
    apple Member Posts: 7,799
    edited March 2011

    Sable.. you really needn't apologize.  First you have a 'topic stalker sockpuppet', then you get a scolding.  I hope you find out some information.  It sounds really interesting.

  • Sable43
    Sable43 Member Posts: 91
    edited March 2011

    Thanks apple!

    I think I've been had though for the information the first post "LevMyshkin" requested I gave to him/her in a private message w/o checking out their profile. I find it ironic that the first two posts were within an hour of each other and neither share a profile for having breast cancer.

    I feel incredibly stupid on top of everything else when all I wanted to do was offer help; let others know that there may be a new alternative treatment out there for us.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2011
  • Sable43
    Sable43 Member Posts: 91
    edited March 2011

    To 1Athena1,

    Thank you for your suggestion; very helpful and I've taken it to heart. I sent a message to the moderator in hopes she can help me. I really think this thread might be of some use to someone if not all of us.

  • rrtzmd
    rrtzmd Member Posts: 8
    edited March 2011

    ..."when reports and testamonials have been positive?"....first, there are HUNDREDS of quack devices currently being marketed throughout the country and, invariably, they ALL have positive reports and "testamonials"...even ignoring that one wouldn't expect companies to publicize negative reports and testamonials, placebo effects are real and can be very powerful...

    ...as regards my "real reasons," I was particularly offended when studying CTT -- the company that markets the Calmare -- as a potential investment and discovered a history of recurring, blatant fraud...just one example -- the company announced a 10 million dollar contract with a company called Innovative Medical Therapies...it turns out the company was nothing but a front set up by a relative of the CEO for the purpose of pumping the company's stock; not a single order nor a single dime was collected from that company...

    ...even more appalling was the idiotic claims made by the company and the calmare's inventor -- Giusseppe Marineo -- regarding how the machine supposedly functioned...it was pure science fiction -- none of it supported by currently accepted physiological principles...then I looked at Marineo's website:

     www.deltard.com/eng/leggi.php?id=1460&

    ...where he claims he can cure cirrhosis, the effects of "old age," and even scars using electric currents!...it's all utter nonsense!...I have no ax to grind...I'm simply offended that these shysters would even consider trying put something so grossly bogus over on me...as I said, trying the thing won't hurt you but I simply would suggest getting some sort of money back if not satisfied guarantee up front...I'm a licensed MD...if you doubt my assessment of the calmare, download from calmarett.com some of the material describing how it works and show them to any neurologist or available neuroscientist... 

  • apple
    apple Member Posts: 7,799
    edited March 2011

    very interesting rrtzmd.. this device or treatment is not something i would normally be interested in.  I was pleased when my son's foot bones healed after ultrasound therapy but have no idea if the ultrasound or time contributed to the healing.  (i was kind of surprised at your #1 post.. but i suppose you have our best interest mind maybe).

    hay Athena.. no need to apologize the scolder.Smile

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited March 2011

    Wow, the wonders of technology (being able to move this thread). I will delete my posts now. Cheers all.

  • Sable43
    Sable43 Member Posts: 91
    edited March 2011

    I had my first session today and was pleased. Maybe it was a placebo effect but I received a positive result. My right wrist pain is alleviated although not gone away but the numbness and pain in my legs and feet still exists.

    I'm willing to see this thing all the way through. As I mentioned before, experiences and options should be shared on this forum; not just opinions. I feel unless you've walked in my shoes, and know what my body has been through, don't hate on the treatment. Again what works for one may not work for others but if this therapy can give me back a little of what I lost, I'll take it. I can never get my left breast back.

  • TCT
    TCT Member Posts: 1
    edited March 2011

    rrtzmd, It appears you have some strong words for the Calmere device.  I am curious if you had looked at the data that supports this device and the number of patients you have treated with Calmere therapy?  I have personally seen the therapy applied to five patients who were in a trial of the therapy in the Northeast and at this point in time (8 visits into the protocol), 4 of the patients have had a considerable amount of pain reduction and one had slight improvement.  All patients were long term pain patients that fit the criteria for this clinical intervention.  Hopefully I will have one of the treating Medical Doctors involved in the "in-office trial" comment on this blog to give you more clinical insight. Hope this helps.    Condemnation without investigation is the height of Ignorance- Albert Einstein.  Dave from NYC 

  • doctorjack
    doctorjack Member Posts: 2
    edited March 2011

    I am a physical medicine doctor managing neuropathic pain for the last 25 years with off label neurological drugs, mood altering narcotics and therapies such as TENS. I have used the calmare device on ten patients in the last few weeks. I have no financial interest in this company and my only interest was to see if this device could be helpful to my patients. Our present tools are weak at best. Thus far, there has been a 70% response rate which is by far better than most of the drugs. This is not a TENS unit. Lack of insurance coverage certainly does not indicate whether a modality will be helpful. By now, most patients are well aware that the insurance company goal is only NOT to spend money. So if we are dpending on them for future innovation, we are being foolish. This treatment may not be for everyone. Your physician should discuss your problem and treatment approaches with you. I beleive the cost is reasonable considering the manpower to apply the procedure and the development cost of the device. Furthermore, when most of my patients have already reached their prescription "donut hole" in March, their share of the prescription medication cost exceeds this intervention. JACK D'ANGELO,M.D.

  • doctorjack
    doctorjack Member Posts: 2
    edited March 2011

    I dont doubt your veracity or your concerns over inadequate testing.

    My concern as a clinician is not the history of the company, as most of the successful companies in the world, have shady pasts.

    My concern is simply,"can this help my patient."

    If it is as successful as our present treatment plans, then why wouldnt we want to know and try to help those suffering.

    I personally feel our blind acceptance as a medical community in the data spewed out by pharmaceutical companies is appaling and we must and continue to ask for better alternatives.

  • stsmd1
    stsmd1 Member Posts: 1
    edited March 2011

    It is curious that this anonymous poster appears to be spending alot of time trying to dissuade any chronic pain sufferers from trying this Calmare technology.

    An inherent value of these type discussion boards is to share information on potential new treatments. This poster, rtzmd, apparently is everywhere on the Internet accusing the company who markets the medical device wih fraudulent activity and lying to the public. These charges are very serious and should be addressed through more legitimate channels such as the FTC, FDA and/or the SEC.

    Unfortunately for this anonymous poster, he/she would have to go public with his/her identity to stop the broader use of the Calmare pain relief technology by going through the proper channels.  The other problem is that his/her accusations are NEVER substantiated in all the postings on the internet that he/she has spent time putting up everywhere.

     He/she has been asked numerous times if he has spoken with any clinician/physician who is using the Calmare. NO was the answer. Have you spoken to any patients who used the Calmare? Again, NO. He does not need to talk to patients. He/she just knows that the technology is "snake oil". The FDA has not determined this and the device is approved for sale in the US.

    The sad thing is that there are those desperate chronic pain sufferers that may be convinced that no further questions on the Calmare is neccessary because, after all, some anonymous and proliific poster insists that it is a scam. My advice is contact the clinics that are using Calmare. Ask if they can give you the name of a patientt that is willing to take a call. Ask questions. Determine for yourself if the technology should be tried given your personal medical condition . But, PLEASE, do not give some alias the permission to rule your own due diliigence--and by not pursuing your interest in Calmare does give him that power.

     I have spoken to a number of  patients that have used the Calmare. Their personal experiences were all different. One patient did 10 treatments and had gone from a 8 to a 0 and was still a 0 after 75 days. She had chronic pain for 32 years and had back surgeries, epidurals, pain meds etc. She was never pain free in all those years, although she benefited from temporary relief--like going down on the pain scale from 8 to 5, only to go up again. She was ecstatic on the phone.

    Another patient had been pain free after Calmare for 45 days (at the time of my conversation witth him).  He had severely damaged discs in his back and was at a VAS pain scale of 7 when he started treatments.

    I spoke with the patient that had been struck by lighning and was on Good Morning America and The Early Show a couple of weeks ago. He has to go for treatments more frequently because the pain comes back sooner and slowly increases--but to say that the technology has NO effect on chronic pain is a flat out lie.

    I spoke to a patient with RSD--a sixteen year old gir--who has been helped. Never gets dow t pain free--but definitely a reduction in pain. And she has absolutely no alternative thereapy to her pain other than Calmare.

    Can these patients all be lying?  Could be. Can the two physicians that are using the Calmare that I spoke to--can they be lying because they use the technology?  Sure. But both physicians decided to purchase the Calmare units because they saw the pain relief in their patients. Could they still be lying? Maybe. But not likely.

    The Mayo Clinic is conducting clinicial studies on Calmare (check it out on the Mayo Clinic website). This poster that is spending all his time slamming the technology has posted that he/she did not think the Mayo Clinic's studies were properly constructed! I am not kidding. The Mayo Clinic, according to this poster, believes that Mayo needs help in constructing a clinical study.

     If this poster had any real interest in whether the technology works or does not work, he/she should be encouraging patients to try the technology and post back here on their experience. But he/she is trying (in my opinion, trying deperately) to discourage people to find out for themselves. If 30 patients tried Calmare and posted on various forums that the technology did not work at all, Calmare would fade away. But that has not happened. Why is that?

    There has to be a real reason for this poster to be posting on multiple boards--some pain treatment boards, some stock discussion boards. Why? Because he is concerned that people are wasting their money? Really?

    If you, as a chronic pain sufferer, are interested in the Calmare--do your research beyond just llistening to this poster. Don't take my word for it and do no take his//her word for it. 

    The real victims are those patients reading this that have chronic pain that delay their own discovery of the Calmare. If it is proven to work in more clinical studies and becomes insurance-approved, how angry would you be at this poster who had affected your decision to not explore Calmare in mroe detail? 

    How angry would you be at yourself for being manipulated?

  • Sable43
    Sable43 Member Posts: 91
    edited March 2011

    I wish to thank doctorjack, TCT, and stsmd1 for their comments! I have used this device for the past week as part of a trial as I have lived with chronic pain and neuropathy since ending chemo. with Ixempra.

    I have had pain reduction only for it to return, but this device might prove useful for so many and it angered me that the words of one person could stifle what might be a promising treatment for sufferers of chronic pain and chemo. related illnesses.

    I applaud all of you for placing the patient first and are not out seeking attention by standing on soap boxes w/o substantial proof or claims to dissuade others from finding alternative therapies.

  • rrtzmd
    rrtzmd Member Posts: 8
    edited March 2011

    ..."Condemnation without investigation is the height of ignorance."?...I can't argue with that...fortunately, in my case, I was well trained in anatomy, physiology, and the neurosciences and, consequently, feel quite comfortable "condemning" the "Calmare" to be a bonafide, grade A certified, QUACK medical device...ask ANYONE who tells you otherwise to pick up a neurophysiology book and find exactly which receptors the device is stimulating...I'm willing to bet he can't...because there are NO receptors that can respond to "scrambled" signals" applied through surface electrodes...consequently, it is PHYSICALLY IMPOSSIBLE to "target c-fiber pathways"...unless of course, Dr. Marineo discovered a new nociceptor sensitive to "zapping"...because the thermal, mechanical, and chemical nociceptors that DO EXIST will NOT respond...

    ...the sensory system for noxious stimuli is fairly simple --  a SPECIFIC temperature, chemical, or mechanical nociceptor is stimulated and it triggers an action potential in the peripheral nerve that it synapses with...that action potential travels to the superficial dorsal horn in the spinal cord where it transfers via synapse to a central nervous system neuron that sends the signal to specific neurons inside the thalamus of the brain...NOTHING gets through via c-fibers unless it stimulates a nociceptor first...there are NO nociceptors for transdermal voltage changes!...

    ...the most the Calmare can do is what every other TENS device does -- produce a voltage beneath the electrode sufficient to cause the underlying muscle to depolarize and contract, causing the patient to feel a little "twitch" and sometimes some heat if the voltage is high enough...believers in TENS try and argue that the "twitch" activates mechanical receptors and that the signals produced result in inhibition of c-fibers by a feedback mechanism suggested in the "gate theory" of pain...

    ...neurostimulation CAN control pain by inducing paresthesia but REQUIRES implantation of the electrodes directly into the spinal canal adjacent to the spinal cord...note that Medtronic does a good business with implanted stimulators but sold its TENS division around 20 years ago for all of 6 million dollars...which I think tells you what they think of TENS units...

    ...an older but nonetheless worthy article about implanted stimulators:

     www. myelitis.org/newsletters/newsletter5-1-08.htm

  • rrtzmd
    rrtzmd Member Posts: 8
    edited March 2011

    ..."I'm a physical medicine doctor who has been treating neuropathic pain for the last 25 years with off-label neurological drugs, mood altering narcotics, and TENS."...well, that may explain why you think the Calmare is "not a TENS unit."...nevertheless, as I explained in my previous post, it most certainly IS a TENS unit...moreover, it was submitted as such by CTT and subsequently was approved as such by the FDA...NONE of the research done so far has had an adequate control group to rule out a placebo effect...moreover, the ONE paper done in this country by Dr. Smith admitted, in effect, the Calmare was a FAILURE...he said there "was no consistent effect on other pain scales," "no difference in morphine oral-equivalent dose," and "no change in formal quality of life"...

    ...so a machine allegedly relieves pain but ONLY for a specific pain scale?...relieves pain but does NOT reduce analgesic use?...relieves pain but does NOT result in an improved quality of life?...maybe it's just me, but I would think that pain relief would show up on just about ANY  scale...and if someone's not in pain, then their analgsesic intake should DECREASE...and it they're not in pain, I would think they would report a much IMPROVED quality of life...right?...

  • rrtzmd
    rrtzmd Member Posts: 8
    edited March 2011

    ..."seeking attention by standing on soapboxes w/o substantial proof to dissuade others from seeking alternative therapies"???...well, I'm glad you appreciate my efforts to prevent you from being swindled...proof?...what proof do you want?...I could recommend you read Kandel and Scwartz's neuroscience textbook...would that be considered proof?...or how about this?...CTT showed the machine at ASCO last year -- or maybe the year before -- I can't recall...now a LOT of docs pass through ASCO every year, and one might presume that they don't like seeing their patients suffer; so you'd think they would have lined up to buy such a miraculous device...yet when you look around at clinics offering the device, who do you find?...an ob-gyn out in Utah, a primary doc in Rhode Island, a PT doc on Staten Island (apparently) and a few chiropractors...hmmmm...what's missing there?...maybe all those onc docs want to discourage their patients from seeking "alternative therapies"...

      ...personally, I'm all for alternate therapies...if standing neck deep in fresh cow manure made someone's day brighter, I would encourage them sincerely and wholeheartedly...I really don't care whether anyone uses the Calmare...I care only about the outrageous claims about it doing anything more than a TENS device...indeed, the day the ridiculous claims stop is the last day anyone will hear from me about it... 

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