GBS with CFIDS type symptoms

GBS (Guillian-Barre Syndrom)

My husband contracted GBS about 2 months ago.  He came down with an infection (fever, aches, nausea, dizziness) and he thought he was coming down with the flu so he decided not to see the doctor thinking he could shake if off.  Unfortunately during this time he was running a really high fever and was becoming very dehydrated.  I finally convinced he to see his doctor and when he went to his appointment, the doctor told me to take him to emergency right away.

He was hospitalized for about a week.  Doctors ran all kinds of test but could not find source of infection so just kept pumping his body with antibiotics.  His fever finally broke on the 4th day and they released him on the 6th day so I took him home.

He seemed fine when he came home but the next day he started developing pain in his toes.  By the 2nd day the pain had traveled up to his knees.  On the third day I took him to the doctor and he said maybe it was just weakness from being hospitalized for so long so he said to give it a few more days to see if he improved. By the fourth day he was falling down and he was having a lot of pain in his legs, arms and hands.  On the fifth day I try to get him in to see a Neurologist with no success so I ended up taking him back to ER.

As soon as the ER doctor saw his condition he told us he was sure it was GBS.  Since we had no idea what that was he explained the illness to us and to prepare ourselves for the illness to make him sicker before it made him better.  He also told us to expect his stay in the hospital to be anywhere from a week to a month, depending on his recovery. Thank God for PPO Insurance.

They placed him in the Intensive Care Unit and did a spinal tap to make sure he did in fact have GBS.  Once they were able to determine that’s what he had he was started on the IVIG Treatment.  Yes we also found out the cost for this stuff. Unbelievable!  By the second day we started to see some improvement.  Though it was very small improvement the doctors were very happy he was responding to the treatment.

He spent a week in Intensive Care and was then transferred to Rehab where he spent another 2 weeks.  Because his recovery was going so well, the doctors agreed to send him home and just told him to be sure and keep up with his exercises and appointments.

I have done research on GBS and have friends that work in the Medical (Research) Field and they have spoken to us about the illness.  GBS patients have to go through a long and slow recovery process.  There are some patients that will experience permanent damage and others will have full recovery.  My husband's Neurologist performed some nerve tests on his legs and said from what he was able to see, he will have about 100% recovery, it just may take about a year for him to fully recover.

There really isn't much more information available or research that shows the exact reason this illness develops in some people and not others.  We do understand most of the time it comes on after suffering a bout with a bad infection then for some reason GBS will start attacking the nervous system.  Since most people don’t realize what is happening to them, some will not seek medical attention until they are extremely ill and doctors believe that is the reason some will suffer long term permanent damage. The doctors tell us because we sought medical attention right away, it may have helped with them being able to control to progress.  My husband's symptoms started with his feet first but we also learned for some people it starts from the head down and they will suffer worse symptoms.

Right now his biggest complaints are pain in his calves arms and wrist.  He also gets tired very easily so his doctor prescribed a walker for him.  I though for sure he would refuse to use it but believe me, he cherishes that thing.  His doctor also gave him pain medication, which I keep in my purse and monitor his dosage.  He still loses his balance when he stands up and though I try not to push him too much, I still try to get him to go out and walk as much as possible and I make him work on his hand exercises the therapist told him to do.  Play dough works great and so does having him wash the dishes for me, but not the breakable stuff.  The biggest relief for him was when he was finally able to take a bath on his own and dress himself, which he was not able to do the first week he was home. I just made sure to get him shorts with no buttons and t-shirts since he can’t grasp the buttons or zippers.

Everyday is a struggle for him and I still see his frustration in not being able to do little things like take the cap off the water bottle, hold a coffee cup with one hand or being able to pick up our small dog.  I try to be patient and give him as much support as I can but believe me sometimes it's hard for me too.  You really need to have a positive attitude and believe things will get better.  I know he may be out of work for a few more months and I dread how it will affect us financially but I also think of his health first and we just take it one day at a time.

'just because there are high white blood cell counts, doesn't mean it is an infection, per se'