Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

Alternative medicine


#1

Hello everybody,

thank you for letting me join your group.

I'm recovering from MFS. It’s been two years and the latest EMG still shows no activity in sensory nerves, although I have made quite some progress. I was hoping to get some info from members that have tried out any kind of alternative approach (meaning anything beside immunoglobulin treatment, physiotherapy and B complex). I've tried quite a few things, none of them had any big effect, but I don’t know how my recovery would go without them.

This is my list:

- Biotherapy (once a week for three months)

- Bioresonancetherapy (for over a year, dealing with Candida, bacteria, amalgam...)

- Acupuncture, including Chinese herbs (26 times)

- food changes: green juices (all the time), got tested for food intolerance (showed wheat, cow milk), tried paleo diet for a month (I really didn’t like it), taking B complex and Omega 3 daily

- Reflexotherapy of the feet (once a week for four months)

- magnetotherapy pillow (2-3 times a day for three months)

- Reconnection (three therapies)

- getting a dog :)

Please share your experience :)


#2

I did H2O2, Ozone, & Ultraviolet Blood Irradiation (UBI) all IV … like u said, not sure how to compare without that. I had 5treatments, and maybe should do more, but I ended up happier trying 6more IVIg treatments,… one a month now… I wish u the best!! Did u see the latest Johns Hopkins news about the truth about the CDCs recommendations re: the flu shot?.. makes me mad that the CDC claims one thing, but there’s no studies that truly substantiate their claims for suggesting the very young and the elderly should get the flu shot… or any of us for that matter. I got them for 5 yrs because the hospital i work at makes us or thwy threaten we have to wear a mask from Nov to April. Well, never will I ever get one again! Mask or no mask!
Good luck on getting all the support you need!!!


#3

First I was told I would never be able to walk again.That was a shocker. Then someone I knew came to see me a propose a system to try.It was a "Light Therapy". This was using a light system made up from specially manufactured bulbs from Germany. This is not Infrared.This technology was first tried by NASA twenty some years ago. I really believed using this system twice a day for about 15 minutes each session advanced my recovery. I was a total quadriplegic when the sessions began and approximately two and a half weeks later I began having movement in my hand/fingers arms and my legs. I could actually feel something was happening after each session. I think the light system caused blood to circulate. The sensation I felt was indescribable. The pains I had also seemed to subside somewhat. I stopped taking all kinds of pain medicine after using this system. I began feeling a whole lot better after stopping the medicine and kept on using the light system for three more months. At that point I was able to stand for a couple of minutes and within a month was walking using a walker and was able to leave the house to go to Physical Therapy. I'm really doing great now. My neurologist discharged me from his care. My primary care doctor is "amazed" how far I've come. This is my Alternative Therapy and should I have a relapse, I will use that system again.


#4

My reply is to Kathy Cooper. I will never again be able to take a flu shot. I along with a long list of peoiple I have met on facebook got GBS from a flu shot. Prior to that, I was a very healthy 54 year old woman. I had taken flu shots for years without any problems. That changed on 10/24/13! Within 2 weeks after getting my flu shot, I was having pins and needle sensations in the back of my legs. Then it traveled to my arms. By 12/31, I was paralyzed and could not get out of bed. I was hospitalized for 9 days in January. At that point, I could not shower myself, walk without a walker or even cut my own food for that matter. I am now doing a lot for myself but still cannot drive or work. My extremities are still numb after 5 IVIG treatments. I can now walk 1.50 miles a day. I tried to drive but because of the numbness,I can still not differentiate between the brake and the gas pedals. Anyone who has gotten GBS should not take a flu shot! I am so sorry that I did. I am pursuing damages through the federal vaccination court and am fighting to get disability. All of my physical therapy has been done by me as I cannot afford insurance.


#5

Hi, Kathy,

thank you for your replay. I'm sorry I took so long for the feedback, last week I've been trying a new bioenergy therapist.

I totally agree on the flu shot or any kind of vaccination whatsoever. I hear stories of little children that have autism because of childrens vaccination. Even my mom's dog died of it.

Take care!

Kathy Cooper said:

I did H2O2, Ozone, & Ultraviolet Blood Irradiation (UBI) all IV ... like u said, not sure how to compare without that. I had 5treatments, and maybe should do more, but I ended up happier trying 6more IVIg treatments,... one a month now... I wish u the best!! Did u see the latest Johns Hopkins news about the truth about the CDCs recommendations re: the flu shot?... makes me mad that the CDC claims one thing, but there's no studies that truly substantiate their claims for suggesting the very young and the elderly should get the flu shot... or any of us for that matter. I got them for 5 yrs because the hospital i work at makes us or thwy threaten we have to wear a mask from Nov to April. Well, never will I ever get one again! Mask or no mask!
Good luck on getting all the support you need!!!

#6

Hi GBSSurvivvor,

thank you for your feedback. Did you use Bioptron (http://www.bioptron.eu/)? I've used this device three days before I got sick. I've used all six or seven colors on my chakra spots. I have a bad feeling about it. It seems to me, that this therapy made my MFS spread faster and made more damage. Cause the therapy stimulates the immune system and I've been using it just before I got sick. This is just my feeling, I've never spoken to anybody about it, exepct with doctors and they know nothing about it.

Wish you good health, take care!

GBSSurvivor said:

First I was told I would never be able to walk again.That was a shocker. Then someone I knew came to see me a propose a system to try.It was a "Light Therapy". This was using a light system made up from specially manufactured bulbs from Germany. This is not Infrared.This technology was first tried by NASA twenty some years ago. I really believed using this system twice a day for about 15 minutes each session advanced my recovery. I was a total quadriplegic when the sessions began and approximately two and a half weeks later I began having movement in my hand/fingers arms and my legs. I could actually feel something was happening after each session. I think the light system caused blood to circulate. The sensation I felt was indescribable. The pains I had also seemed to subside somewhat. I stopped taking all kinds of pain medicine after using this system. I began feeling a whole lot better after stopping the medicine and kept on using the light system for three more months. At that point I was able to stand for a couple of minutes and within a month was walking using a walker and was able to leave the house to go to Physical Therapy. I'm really doing great now. My neurologist discharged me from his care. My primary care doctor is "amazed" how far I've come. This is my Alternative Therapy and should I have a relapse, I will use that system again.


#7

Hey Rainbow,

No, I did not use that particular system. If you want to take a look at the system I used then go to (http:www.lightspausa.com).

Wishing you good health also.



Rainbow said:

Hi GBSSurvivvor,

thank you for your feedback. Did you use Bioptron (http://www.bioptron.eu/)? I've used this device three days before I got sick. I've used all six or seven colors on my chakra spots. I have a bad feeling about it. It seems to me, that this therapy made my MFS spread faster and made more damage. Cause the therapy stimulates the immune system and I've been using it just before I got sick. This is just my feeling, I've never spoken to anybody about it, exepct with doctors and they know nothing about it.

Wish you good health, take care!

GBSSurvivor said:

First I was told I would never be able to walk again.That was a shocker. Then someone I knew came to see me a propose a system to try.It was a "Light Therapy". This was using a light system made up from specially manufactured bulbs from Germany. This is not Infrared.This technology was first tried by NASA twenty some years ago. I really believed using this system twice a day for about 15 minutes each session advanced my recovery. I was a total quadriplegic when the sessions began and approximately two and a half weeks later I began having movement in my hand/fingers arms and my legs. I could actually feel something was happening after each session. I think the light system caused blood to circulate. The sensation I felt was indescribable. The pains I had also seemed to subside somewhat. I stopped taking all kinds of pain medicine after using this system. I began feeling a whole lot better after stopping the medicine and kept on using the light system for three more months. At that point I was able to stand for a couple of minutes and within a month was walking using a walker and was able to leave the house to go to Physical Therapy. I'm really doing great now. My neurologist discharged me from his care. My primary care doctor is "amazed" how far I've come. This is my Alternative Therapy and should I have a relapse, I will use that system again.


#8



daley54 said:

My reply is to Kathy Cooper. I will never again be able to take a flu shot. I along with a long list of peoiple I have met on facebook got GBS from a flu shot. Prior to that, I was a very healthy 54 year old woman. I had taken flu shots for years without any problems. That changed on 10/24/13! Within 2 weeks after getting my flu shot, I was having pins and needle sensations in the back of my legs. Then it traveled to my arms. By 12/31, I was paralyzed and could not get out of bed. I was hospitalized for 9 days in January. At that point, I could not shower myself, walk without a walker or even cut my own food for that matter. I am now doing a lot for myself but still cannot drive or work. My extremities are still numb after 5 IVIG treatments. I can now walk 1.50 miles a day. I tried to drive but because of the numbness,I can still not differentiate between the brake and the gas pedals. Anyone who has gotten GBS should not take a flu shot! I am so sorry that I did. I am pursuing damages through the federal vaccination court and am fighting to get disability. All of my physical therapy has been done by me as I cannot afford insurance.


#9



Kat5615 said: daley 54, your story sounds pretty similar to mine. I also got GBS from a flu shot, I am on disability now, and I am looking into the vaccine injury compensation program. I am ok with my hands and feet, now, wasn't able to drive right away, but now I can. My biggest problem right now is the partial paralysis in my face. My speech is fine now, but my mouth on the left side is not back to normal, I have a crooked smile. And my left eye still isn't right, it doesn't look like the riight one. And I still get the fatique, so I am not quite back to normal yet, I have to admit I am wanting it to be over, already! (diagnosed in Nov, 2014. Let me know how it goes with the vaccination court..



daley54 said:

My reply is to Kathy Cooper. I will never again be able to take a flu shot. I along with a long list of peoiple I have met on facebook got GBS from a flu shot. Prior to that, I was a very healthy 54 year old woman. I had taken flu shots for years without any problems. That changed on 10/24/13! Within 2 weeks after getting my flu shot, I was having pins and needle sensations in the back of my legs. Then it traveled to my arms. By 12/31, I was paralyzed and could not get out of bed. I was hospitalized for 9 days in January. At that point, I could not shower myself, walk without a walker or even cut my own food for that matter. I am now doing a lot for myself but still cannot drive or work. My extremities are still numb after 5 IVIG treatments. I can now walk 1.50 miles a day. I tried to drive but because of the numbness,I can still not differentiate between the brake and the gas pedals. Anyone who has gotten GBS should not take a flu shot! I am so sorry that I did. I am pursuing damages through the federal vaccination court and am fighting to get disability. All of my physical therapy has been done by me as I cannot afford insurance.


#10

I am getting ready to try some therapeutic grade essential oils on my mom for her neuropathy, hope all goes well and I will let you know.