Joseph Heller and GBS

I read it back in 1986 when I had GBS the first time. Luckily I did not read it until I started to get better. I had an excellent doctor who disgnosec it in his office. He is the one in Shillington that suzanne Sommers writes about in one of her books. I remember him standing at his sink washing his hands and telling me it was Guillain-Barre syndrome. Naively I said, Good, we know what it is. Now what do we need to do?” He said we would watch it. As I went back each time as I was getting worse, he said the same thing. I continued taking huge amount of vitamin C which slowed down the progress of it. He had me do a 24 hour urine collection and I could not take any supplements. I felt like I had been hit by a MACK truck.I quickly got back on the 15-20 grams of C and felt better. But I saw my body going down hill. Scarey. I had no idea how scared I should have been. As the numbness worked its way from the extremities, I feared that it would hit my heart or brain. One day I had a friend use a pendulum, said prayer for heolp, and we went through every supplement I could think. We asked, “WOuld this help me?” When we got to Adrenal Extract, it went crazy. Then I asked how much I needed. I started with, “IS 2 enough? 4? etc. When I got to twelve, it said YES. So I started with 6 and did not see any help but it didn’t kill me. SO I tried 12 and it stopped the progress of the disease and turned it around. My blood pressure went down and the numbness abated. WHen I told my doctor, he said that he was waiting for the disease to get worse and he would have hospitalized me and given me IVs of Vitamin C and Adrenal extract. He said I needed to take 12 because it is hard for the body to absorb it in oral form. That is when I found Joseph Heller’s NO LAUGHING MATTER. Thanks goodness I did not find it before this. It would have really frightened me. Before GBS only had a name, now I knew what I had sidestepped thanks to my supplements. It’s a great book to read afterwards. LAst year when I got GBS for the second time, I was not as lucky. BUt as I go back and read my old emails, I started getting symptoms in March and it did not hit its peak until October. This is why I really think it is viral. Vitamin C keeps the white blood cells healthy. And when I stopped it for 24 hours, the pain was unbelievable. I did not have a computer in ’86 so did not have this site for help. Maybe ignorance was bliss.

Carolyn,

I remember when you first started posting and spoke about the difficult time you were having getting around etc. I didnt realize how long it took to get to the worst point, and only by reading this last post was made aware of it. I admit to being hesitant to write this because i dont want to upset you, as I am writing out of concern – when you said that your symptoms started in March and peaked in October. It almost sounds as if it may possibly be another type of neuropathy because GBS really does hit its peak within 4 weeks. I know that there are a lot of people who take months to peak, and are initially thought to have GBS, SIDP or CIDP, however they are often later diagnosed with a neuropathy that unfortunately hasnt got a name yet (as there are so many out there still), or something else. Do you feel that it could possibly be something else other than any of the GBS “family”?

Ali,
I understand what you were trying to say. That is the trouble that I have had with doctors – they are looking for the overt symtoms and what the average person gets. When a person keeps their body healthier than most, the symptoms are often masked..I have no doubt that I had GBS. BUt what we should look at is that I was able to keep it at bay. This is why I think a virus has to be involved. I was able to keep it away. SInce I got it from stress and not an immunization, it did not hit like some of the other ways you can get it. When I got pneumonia in the past, I walked around for weeks saying I was exhausted and felt lousy. I was relieved when I finally went ot he doctor’s and he said it was pneumonia: I knew that I wasn’t going crazy. The antibiotics took it away. The vitamin C was keeping it neck and neck; yet, I wasn’t staying home from teaching to let the body get better. I did not miss one day of school in nine years – that’s a great record for a teacher. Fortunately I had those days to used when I got GBS. It was 20 years in between my two bouts with GBS – so I wouldn’t call that chronic. And the stress of taking care of my mom and watching her stop eating was just too much for my system. It started a half year after her death – then moving out of my apt that was stressful. I would wake up not breathing due to the stress. What’s funny is that I menitoned to my Tampa doctor that I thought my GBS was starrting up after 20 years. He calmly said that they have treatment for that now – plasma pharesis. He didn’t tell me that it was difficult to find a place where I live that did that.