Guillain-Barre anyone?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by anchor, Mar 28, 2013.

  1. anchor

    anchor New Member

    Hi,

    I am recovering from Guillain-Barre Syndrome (GBS) and was wondering if anyone else has this "double-whammy" diagnosis? (Fibro too)

    I had a severe case of GBS, where I was completely paralyzed head to toe (even my eye lids wouldn't close) and on a ventilator. Had to learn to swallow, talk, eat, move, sit up, walk again....but I'm doing well.

    It's frustrating to have another 'invisible' illness. The fatigue and no stamina is the most difficult to deal with....anyone else have experience?

    Lisa.

  2. kchase77

    kchase77 Member

    That's a wonderful recovery story, herbqueen, and very inspiring! Many thanks for sharing it.

    I recently saw a documentary called Fat, Sick, and Nearly Dead about an Aussie guy who lost 100 lbs. on a juicing regime. I am inspired to try it as soon as I can afford a juicer. That is exactly how I feel...fat, sick, and nearly dead...so time for a change and your story only reinforces my belief that juicing and a raw diet can help me to not be fat, sick, and nearly dead. :)

    I am anxious to get started and hope the OP takes note.

    Best,
    Jody
  3. kchase77

    kchase77 Member

    about 7 years ago. He was lucky though and after some physical therapy and getting around in a wheelchair for awhile he has made a complete recovery. It's still a mystery to me how he even got this.

    His roommate in the hospital at the time had been paralyzed from the neck down in a car accident and had no family. Just thinking about that breaks my heart to this day and I still pray for that young man. I hope he is being well taken care of by someone.

    I have not experienced GB but I deal with fatigue and no stamina currently. Have not been to a doctor but from what I can gather from reading online, I have adrenal fatigue made even worse by menopause symptoms. You can read my ongoing saga here: http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1432555&setboard=FM

    Have you thought about taking cortisol? I have posted the name of a clinic on that thread where the doctors are treating chronic fatigue and fibromyalgia with it. Perhaps you can take a look and see if they can help. They will give you a free consultation.

    Take care,
    Jody
  4. neoplus1

    neoplus1 Member

    I am in the same boat as you. Back in 2005 I came down with some type of infection and a few weeks later developed GBS. During my recovery, I began to experience symptoms that were later diagnosed as CFS and Fibromyalgia. The onset of my CFS was slow over a period of years.

    My GBS was not very severe, but was not mild either, it was somewhere in the middle. I was diagnosed too late to receive any treatment and so by the time they diagnosed me properly, the damage was already done.

    I understand what it is like to have GBS and boy was it scary. There seem to be quite a few people who after GBS have problems such as other autoimmune or neurological disorders.

    I hope you are doing well.

    Steve
  5. anchor

    anchor New Member


    Would I take Cortisol if my Cortisol saliva levels are off the chart?

    When they're supposed to be Normal, my levelsa re High.

    When they're suposed to increase, my levels are off the chart High.

    I totally believe I have adrenal fatigue, if not burn out.

    thanks...
  6. anchor

    anchor New Member


    How well did you recover? Even today? Any residual effects?

    Any damage still today?

    It is scary, sorry you had to go through this too.

    Lisa.
  7. neoplus1

    neoplus1 Member

    I am not sure if I have any residual symptoms. I started experiencing symptoms of CFS and Fibro within a few months of my GBS diagnosis so it is difficult to tell whether I have residual symptoms of GBS.

    I have never been able to figure out whether the GBS itself was directly responsible for my CFS and Fibro onset. Maybe the infection that triggered the GBS also triggered CFS and Fibro.

    I don't know what the infection was because I never went to the doctor. It was some type of flu-like illness and lasted for a few weeks.

    Steve
  8. kchase77

    kchase77 Member

    I can't say for sure as I am struggling myself with whether or not to use cortisol or adrenal extracts. Best advice, and one I wish I could take myself, is see a good doctor that deals with this stuff. I cannot afford to myself so am just doctoring and prescribing on my own...not the best way to deal with it.
  9. herbqueen

    herbqueen New Member

    I know someone who recovered from GB on a raw diet vegan diet-she also took some heavy metal supplements like zeolite to pull heavy metals, b12 etc. Not sure if it helps everyone but she ran a marathon about 3 years after the GB and also has had 2 sucessful pregnanices. She remains on the a high raw low fat vegan diet. She does eat some cooked veggies, potatoes, etc for dinner too. Green juice (cuc, celery, green apple, greens)every day. She drank nothing but green juice for a few months in the beginning. Hope that helps!