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dutchman09
@dutchman09

Posts: 9
Joined: Oct 02, 2018

In Search of Relief

Posted by @dutchman09, Thu, Oct 11 6:00pm

About 10 months ago I started feeling a pain in the second toe on my left foot. As time progressed my wife noticed my toe was turning dark/black in spots. More time progressed and my feet started feeling hot, numb and cold after a hot shower but the discoloration went away. My Cardiologist suggested seeing a Neurologist in the same building as her office. I waited 2 ½ months for an appointment because they said they would put me on a cancellation list (which they never did.) The day of the appointment I waited 1½ hours past my appointment time. When I questioned the office clerk I was brought into an examining room and waited another 45 minutes for a doctor to see me. He made a few preliminary tests with a tuning fork and a needle and decided to test me on a computer a week later. Two weeks after the test I had to call his office to ask for the results. The diagnosis was a chronic axonal sensorimotor polyneuropathy with a moderate degree of carpal tunnel syndrome. For whatever reason they only tested my right arm, hand and right leg and foot. Nothing on my left side. I was then told my follow up appointment would be 4 months down the road! I filled out a medical release form and requested my records.

I then went to a Chiropractor who claimed to treat Neuropathy with a pulsating inferred laser. After 13 ½ hour visits at $110.00 each I purchased a hand held inferred laser with which my wife is treating me every evening. I am trying to receive a prescription for the Rebuilder Model 2407 Electronic Nerve Stimulator but the Clinic in rural Three Points Az. has just reopened October 1st and cannot find a doctor to place on staff.

I recently saw an excellent special on PBS about the history of the Mayo Clinic and a very good friend of mine who lives in Minnesota has a daughter who is a Cardiac charge nurse at the Mayo Clinic in Rochester, Mn. My lab tests from Aug. 15 show my BG as 101 and my Cholesterol as 129 yet I’ve been prescribed Crestor 5 mg nightly since my heart attack in 2010 which I’ve learned that prolonged use of a statin can lead to Peripheral Neuropathy. I have never taken any prescribed drugs for pre-diabeties or diabetes. I have all test results including the codes for the Rebuilder to be reimbursed by Medicare. Has anyone else heard of or actually used the Rebuilder Model 2407?

REPLY

Hello @dutchman09, welcome to Connect. I have idiopathic small fiber peripheral neuropathy in both feet and slightly above the ankles. I'm fortunate in that I only have numbness and some tingling as symptoms. I don't have any pain with it. In looking for "fixes" for my neuropathy I tried a lot of topicals and a few devices with little success. What I did learn is that there are a lot of companies and others making a lot of money off of people with neuropathy symptoms. I purchased a Zopec DT-1200 Electrotherapy system which claimed it helped neuropathy and had lots of good testimonials but it didn't work for me. I have heard of the Rebuilder but think it's just another one of those things (IMHO). I did find an article talking about it:

Recognizing Dubious Health Devices
https://sciencebasedmedicine.org/recognizing-dubious-health-devices/

I try to do research on any new treatments for myself before making any decisions. Here are a few of the sites I use:

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I'm also a big believer in not taking statins because I have neuropathy and statins can cause neuropathy.

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/

Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1

Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

@dutchman09, do you have any other symptoms of neuropathy other than your left foot? Mine did start in the toes but on both feet.

John

Hello John:
First let me thank you very much for your timely reply and quantity of informative links. I am particularly interested in "Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy" since my Cardiologist has me on Crestor for the past eight years and I do not believe I have diabetes because over a year ago my then primary care physician said I no longer had to test my glucose daily and a recent August 15th blood test showed my Glucose result as 101 and my Cholesterol result as 129 .

This past June I was diagnosed with chronic axonal sensorimotor polyneuropathy which is now affecting both feet and beginning to affect my hands. However as stated in my original post, both the Neurologist and the Chiropractor were not open to prescribing me an electronic nerve stimulator. One only believed in prescription drugs and the other felt threatened by the devise. You have given me a wealth of articals to review and I am genuinely grateful.

@dutchman09

Hello John:
First let me thank you very much for your timely reply and quantity of informative links. I am particularly interested in "Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy" since my Cardiologist has me on Crestor for the past eight years and I do not believe I have diabetes because over a year ago my then primary care physician said I no longer had to test my glucose daily and a recent August 15th blood test showed my Glucose result as 101 and my Cholesterol result as 129 .

This past June I was diagnosed with chronic axonal sensorimotor polyneuropathy which is now affecting both feet and beginning to affect my hands. However as stated in my original post, both the Neurologist and the Chiropractor were not open to prescribing me an electronic nerve stimulator. One only believed in prescription drugs and the other felt threatened by the devise. You have given me a wealth of articals to review and I am genuinely grateful.

Jump to this post

Hi @dutchman09, I'm glad the information was helpful and even more happy that you are being a strong advocate for your own health. The way the healthcare industry is going a person really needs to advocate and work with the doctors to come up with a treatment plan. Here is a patient story I ran across earlier that might be helpful.

Breaking Away From Pain With the Help of ‘The Scrambler’
https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Also the site with a little more information on the device:
https://www.st-team.eu/

Keep learning as much as you can about your condition, it can't hurt and it most likely will help you work better with the doctors on a treatment that works for you.

John

@johnbishop

Hi @dutchman09, I'm glad the information was helpful and even more happy that you are being a strong advocate for your own health. The way the healthcare industry is going a person really needs to advocate and work with the doctors to come up with a treatment plan. Here is a patient story I ran across earlier that might be helpful.

Breaking Away From Pain With the Help of ‘The Scrambler’
https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Also the site with a little more information on the device:
https://www.st-team.eu/

Keep learning as much as you can about your condition, it can't hurt and it most likely will help you work better with the doctors on a treatment that works for you.

John

Jump to this post

Thank you again, John, you've been most helpful.

@johnbishop

Hello @dutchman09, welcome to Connect. I have idiopathic small fiber peripheral neuropathy in both feet and slightly above the ankles. I'm fortunate in that I only have numbness and some tingling as symptoms. I don't have any pain with it. In looking for "fixes" for my neuropathy I tried a lot of topicals and a few devices with little success. What I did learn is that there are a lot of companies and others making a lot of money off of people with neuropathy symptoms. I purchased a Zopec DT-1200 Electrotherapy system which claimed it helped neuropathy and had lots of good testimonials but it didn't work for me. I have heard of the Rebuilder but think it's just another one of those things (IMHO). I did find an article talking about it:

Recognizing Dubious Health Devices
https://sciencebasedmedicine.org/recognizing-dubious-health-devices/

I try to do research on any new treatments for myself before making any decisions. Here are a few of the sites I use:

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

I'm also a big believer in not taking statins because I have neuropathy and statins can cause neuropathy.

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/

Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1

Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8

@dutchman09, do you have any other symptoms of neuropathy other than your left foot? Mine did start in the toes but on both feet.

John

Jump to this post

Hi very interesting information. Have you tried low level laser 650nw? I found it nearly eliminated the numbness from my feet and toes in only 2 weeks.

@holhealthcare

Hi very interesting information. Have you tried low level laser 650nw? I found it nearly eliminated the numbness from my feet and toes in only 2 weeks.

Jump to this post

Hi @holhealthcare, I have not tried low level laser therapy myself although I have looked into it. I just personally don't want to pay a lot of money for something that may or may not work based on discussions I've had with the treatment center offering the low level laser therapy. I have a friend that had many treatments and feels it has helped them but is pretty subjective and different for each person. It's good to hear that it has nearly eliminated the numbness for you. Do you also have pain with your neuropathy? There is good information regarding the low level therapy for pain issues.

The Use of Low Level Laser Therapy (LLLT) For Musculoskeletal Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4743666/

I have been thinking about getting one of the new SaunaSpace single units which is a near infrared light therapy device.
https://saunaspace.com/shop/near-infrared-single-light-panel/

John

@johnbishop

Hi @holhealthcare, I have not tried low level laser therapy myself although I have looked into it. I just personally don't want to pay a lot of money for something that may or may not work based on discussions I've had with the treatment center offering the low level laser therapy. I have a friend that had many treatments and feels it has helped them but is pretty subjective and different for each person. It's good to hear that it has nearly eliminated the numbness for you. Do you also have pain with your neuropathy? There is good information regarding the low level therapy for pain issues.

The Use of Low Level Laser Therapy (LLLT) For Musculoskeletal Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4743666/

I have been thinking about getting one of the new SaunaSpace single units which is a near infrared light therapy device.
https://saunaspace.com/shop/near-infrared-single-light-panel/

John

Jump to this post

I purchased this low level laser device (from a slightly less expensive site) and my wife uses it on my feet and hands for 15 minutes each, every night. I use it on my hands and she attaches it to a camera tripod to use on my feet while lying on the couch. It has three different light intensities, solid and pulsating light rays and can be timed from 15 to 60 minutes. Here is a video about this Laser device: https://healthcaremarts.com/products/low-level-laser-therapy-device-hand-held.

@johnbishop

Hi @holhealthcare, I have not tried low level laser therapy myself although I have looked into it. I just personally don't want to pay a lot of money for something that may or may not work based on discussions I've had with the treatment center offering the low level laser therapy. I have a friend that had many treatments and feels it has helped them but is pretty subjective and different for each person. It's good to hear that it has nearly eliminated the numbness for you. Do you also have pain with your neuropathy? There is good information regarding the low level therapy for pain issues.

The Use of Low Level Laser Therapy (LLLT) For Musculoskeletal Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4743666/

I have been thinking about getting one of the new SaunaSpace single units which is a near infrared light therapy device.
https://saunaspace.com/shop/near-infrared-single-light-panel/

John

Jump to this post

Mine is Domer Technology. It is an excellent device I also use in my clinic.
I had terrible pain and burning toes and plantar foot. I used Chamomile German and a jade roller on it. The pain and burning went away. That's 3 years ago. I was left with the numbness. Feet feel about normal now.

@dutchman09

I purchased this low level laser device (from a slightly less expensive site) and my wife uses it on my feet and hands for 15 minutes each, every night. I use it on my hands and she attaches it to a camera tripod to use on my feet while lying on the couch. It has three different light intensities, solid and pulsating light rays and can be timed from 15 to 60 minutes. Here is a video about this Laser device: https://healthcaremarts.com/products/low-level-laser-therapy-device-hand-held.

Jump to this post

That's also the one I use for myself and in my clinic.

@johnbishop

Hi @holhealthcare, I have not tried low level laser therapy myself although I have looked into it. I just personally don't want to pay a lot of money for something that may or may not work based on discussions I've had with the treatment center offering the low level laser therapy. I have a friend that had many treatments and feels it has helped them but is pretty subjective and different for each person. It's good to hear that it has nearly eliminated the numbness for you. Do you also have pain with your neuropathy? There is good information regarding the low level therapy for pain issues.

The Use of Low Level Laser Therapy (LLLT) For Musculoskeletal Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4743666/

I have been thinking about getting one of the new SaunaSpace single units which is a near infrared light therapy device.
https://saunaspace.com/shop/near-infrared-single-light-panel/

John

Jump to this post

Hi @johnbishop – thanks a lot for your comments on lllt and the publication, one I have not had in my collection as yet – I would like to add another one or two studies on low-level laser therapy, also caled photobiomodulation. On most recent studies, partially not as yet published, I understand that the applied dose per cm2 tissue which was usually from 1 to 5 joules seems to be consierably higher. So those laser lighter type output power of 1 to 5 mW would take quite some time if such recommended doses should be reached.
Also I share your intention on getting one of those low cost one-man-sauna, I found a lot of relatively low cost units on amazon.de, the german version, there again it may be interesting to see what infra red heat lamps they are using, as the absorption of water in the human cells depends on the wavelength used in the infra red spectrum. I am trying to add the link on water absorption of light. Mostly the manufacturers do not state the wave length of their heat lamps but should be able to disclose if one inquires. I think that the wavelength should be below 2000nm so there is some transmisison of light in subcutaneous tissue structures which could, like laser light, stimulate the repair of peripheral nerve damages.

water_spectrum_2

Shared files

anders LSM 2014 rabbit nerve injury Kopie (anders-LSM-2014-rabbit-nerve-injury-Kopie.pdf)

LLLT-PostOperative-Nesioonpour fracture RCT Kopie (LLLT-PostOperative-Nesioonpour-fracture-RCT-Kopie.pdf)

@swiss

Hi @johnbishop – thanks a lot for your comments on lllt and the publication, one I have not had in my collection as yet – I would like to add another one or two studies on low-level laser therapy, also caled photobiomodulation. On most recent studies, partially not as yet published, I understand that the applied dose per cm2 tissue which was usually from 1 to 5 joules seems to be consierably higher. So those laser lighter type output power of 1 to 5 mW would take quite some time if such recommended doses should be reached.
Also I share your intention on getting one of those low cost one-man-sauna, I found a lot of relatively low cost units on amazon.de, the german version, there again it may be interesting to see what infra red heat lamps they are using, as the absorption of water in the human cells depends on the wavelength used in the infra red spectrum. I am trying to add the link on water absorption of light. Mostly the manufacturers do not state the wave length of their heat lamps but should be able to disclose if one inquires. I think that the wavelength should be below 2000nm so there is some transmisison of light in subcutaneous tissue structures which could, like laser light, stimulate the repair of peripheral nerve damages.

Jump to this post

Hi @swiss, thanks for the update and for the information and links. I think it's one of the pieces for helping the numbness I experience. I also think there is a cellular nutrition side that needs to be addressed which is one of the things I'm focused on doing now with supplements and vitamins.

@johnbishop

Hi @swiss, thanks for the update and for the information and links. I think it's one of the pieces for helping the numbness I experience. I also think there is a cellular nutrition side that needs to be addressed which is one of the things I'm focused on doing now with supplements and vitamins.

Jump to this post

Hi @johnbishop – I have been on the suggested nutrition for over one year by now, unfortunately the progression of my idiopathic, demyelinating PN of small fibres has not stopped nor reversed – I am continuing anyhow. But after realyl getting into the literature of Stem Cell Therapy, I will now travel to a Budapest (Hungary) Center for plastic surgery where they offer the S C Therapy with my own fat cells (via liposuction and centrifugal extraction of body own stem cells which are then reinjected into knees for my knee arthrosis and intravenous to address PN) – it is expensive and there is no guarantee. But with almost 80 years of age I have spent a furtune on all kind of ways and means to address my PN that it makes no big difference to try something new which is only just starting in Europe and where most countries do not allow SCT. We will see! Has anyone here done any SCT and what was the outcome?

Hi @swiss, I don’t believe anyone has reported or verified a successful stem cell treatment for Neuropathy yet but I would love to hear how yours goes if you have it done.

From what little I’ve read they haven’t broken the code yet for making stem cells the help the regeneration of the myelin sheath for nerve cells. There are a lot of clinics popping up around the U.S. professing to be able to treat PN but they are no FDA clinical trials yet which normally is where the treatments start.

@swiss

Hi @johnbishop – thanks a lot for your comments on lllt and the publication, one I have not had in my collection as yet – I would like to add another one or two studies on low-level laser therapy, also caled photobiomodulation. On most recent studies, partially not as yet published, I understand that the applied dose per cm2 tissue which was usually from 1 to 5 joules seems to be consierably higher. So those laser lighter type output power of 1 to 5 mW would take quite some time if such recommended doses should be reached.
Also I share your intention on getting one of those low cost one-man-sauna, I found a lot of relatively low cost units on amazon.de, the german version, there again it may be interesting to see what infra red heat lamps they are using, as the absorption of water in the human cells depends on the wavelength used in the infra red spectrum. I am trying to add the link on water absorption of light. Mostly the manufacturers do not state the wave length of their heat lamps but should be able to disclose if one inquires. I think that the wavelength should be below 2000nm so there is some transmisison of light in subcutaneous tissue structures which could, like laser light, stimulate the repair of peripheral nerve damages.

Jump to this post

My foot feels nearly normal. I think I remember what normal was after 7 years.
http://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

@holhealthcare

My foot feels nearly normal. I think I remember what normal was after 7 years.
http://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

Jump to this post

Hi @holhealthcare, thanks for posting the link for the LLLT treatment for PN. It does show promise and if it works for eliminating the pain part that would be a real plus. It's great that it works for you and your foot feels nearly normal. My feet were feeling almost normal after a couple of years on supplements but then I had to start using compressing socks for lymphedema. Now me feet feel really good when I take the compression socks off and not so good when I'm wearing them all day long. Still LLLT holds enough promise for me that I might investigate purchasing a small one I can use at home. I'm just extra cautious due to all the scam treatments out there for people with PN. I would prefer to see results from clinical trials and not rely on small subset studies when the cost is out of budget range. I am grateful for all members who share their personal experience. It helps me in my decision making ☺

John

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