Guillian Barre Syndrome

Has anyone been diagnose with Guillian Barre Syndrome and familiar with the aftermath and follow-up treatment of this virus?
I had a life threatening case of GBS following a pneumonia vaccination in 2014. Paralyzed me from the neck down..ended up in ICU on a ventilator for a while, then spent a year in a nursing facility learning to do EVERYTHING again...walk, eat, even write my name. I have experienced a great deal of nerve pain ever since, especially in my feet and legs. The neuropathy is always present in my feet and legs, but sometimes continues to spread to my abdomen and chest.
I have been left with limited use of my hands, feet and legs and am disabled due to this. I am still being treated with serious pain relievers, including a daily fentanyl patch and hydrocodone, as well as massive doses of gabapentin, and tizanadine to control the muscle spasms.
Apparently my case was extreme, but it has been 3 yrs since the onset and I still experience a great deal of nerve pain from missing myelin that has not regenerated.
I would appreciate knowing if anyone else has experienced this virus and what kind of treatment they have had that proved successful.

Hi Old Gal - welcome!

I don't have GB but I did read about it before I was diagnosed with Lyme when I was searching to find out what was wrong with me.

So there was evidence of the virus in your spinal fluid?

Sorry - can't remember how it is diagnosed.

I am so sorry you have the residual nerve pain. I also have nerve pain with LD. It's horrible - although mine isn't as bad as yours'

Has IVIG been looked into? I don't know if it's even applicable for GBS.

I was not clinically dx, only had one doc speculate that is what I had. He looked at my info, MRI’s and LP etc but didn’t want to over step my neuro’s dx. But then I had another doc mentioned it was a TIA

To keep it short my left side of my body was paralyzed, among many other things. But when I was able to understand letters, that make words, that make sentences again, I bought a lot of supplements and got on LDN.

I’m not fully recovered, I still have weakness on that side. I followed cognitive and nerve regeneration based on MS. I’ve had neuropathy for many years, never goes away. I’m so sorry your still in so much pain esp from all that you’ve gone through. I see you are on a lot of pharm, are you taking any natural supplements for pain or nerve regeneration?

Wishing you well

Yes, diagnosis was confirmed with a spinal tap, but only after I was in full paralysis in ICU. When my lungs and other organs began to shut down, I was put on a vent and treatmet with gabapentin was started by my neurologist.
My symptoms of excruciating pain began in Sept and even tho I saw many drs, and was treated in ER multiple times, no one knew what was wrong with me. I was treated with opiods and sent home. By Xmas, the pain was unbearable...I had seen the neurologist in early Dec, but before my next appt I was in ICU, paralized from the neck down and on a vent. When I was able to breath on my own I was sent to nursing/rehab center. I was still unable to move on my own and experiencing horrible nerve pain, to the extent that I could not stand to be touched. It was a very humbling experience. I eventually started ot and pt. It was a very long difficult year. I had excellent care or I firmly believe I would still be there.
It is my understanding that IVIG is only successful if done prior to the onset of full paralysis...after that it is not effective treatment.
I have been treated for the full range of bacterial infection (30 shots in 10 days), as well as viral infections. I only received a certain amount of regeneration with those treatments. I still experience a lot of weakness in my arms, hands, legs and feet. I still have drop foot, and I have not been able to get my normal gait back. I still walk with a cane, but no longer need my walker or wheel chair. I am back home for almost 2 yrs now and able to live alone and care for my 2 Shih Tzus, thankfully.

Post Edited (OldGal70) : 11/20/2017 10:04:45 AM (GMT-7)

I do not and have not had Lyme Disease...GBS was brought on by a pneumonia vaccination I had less than 30 days prior to my first symptoms began. It was the only logical explanation for a cause. I had been perfectly healthy before receiving the vaccination...and, except for the disabilities I have from the GBS (severe neuropathy, nerve pain, and muscle weakness, loss of gait, drop foot) I have NO other health issues. NONE!

Old Gal just wanted to mention that all of my problems started after I received a pneumonia and flu vaccine at the same time. I do not remember bit, but I tested positive through the Igenix lab.

GB is one of the diseases that is often misdiagnosed and is really lyme. Fibromyalgia is another. I wouldn't rule it out.