My story about Churg Strauss Syndrome

Nic Goederond, The Netherlands

 

I’m Nic Goederond, I live in Eindhoven a city in the south of The Netherlands (Europe). I’m a teacher with a specialty in teaching children with learning disabilities at a secondary school.

I got the definite diagnose of Churg Strauss Syndrome in November 2005, a biopsy taken from a nodule on my elbow proved the CSS at all points. In April 2003 I got the tentative diagnosis of Churg Strauss.

My story began when I was 36 years of age. In that year my headaches and sinus problems started. It was in early spring that those problems were bothering me. I recovered , but the problems returned in the autumn. From that year on I had my sinus problems every spring and autumn.

Two years later when I cycled my way home in a strong wind, I noticed that I became short of breath, which alarmed me. I went to my doctor and talked to him about my sinus problems and the shortness of breath after some effort, like cycling or fitness exercises.

An examination at the hospital resulted in the diagnosis of asthma. From that time I developed more and more allergies: pollen from the trees, allergy for fruit (apples, pears, plums etc.), allergy for additions in food, allergy for cow milk etc. All kind of allergies I didn’t noticed before my 36th birthday.

Every time when I had troubles with some allergy, I noticed that my sinuses were hurting me. So Joke (my wife) and I started to buy our food with much more caution.

I tried to cure my allergies and asthma with all kind of alternative therapies, but nothing worked. In the mean time my allergies got worse and worse. Drinking a glass of red wine had the consequence of an obstructed nose and a heavy pain in my sinuses the day after.

In August 2003 I got serious sinus problems again, my doctor gave me antibiotics, but the inflammation in my sinuses kept coming back.

In February 2003 I got the flu, at least I thought I had it, which surprised me because I rarely get the flu. But after a week my flu wasn’t over and after another two weeks it was still not over and I still had that fever. My doctor didn’t understand it and said to me to keep rest and take some paracetamol to lower the fever. I weakened more and more, than I got the nodules on my elbows and purpura. My asthma got worse and I had to cough very often, so often that I hurt the muscles of my ribs, moreover I began to eat like a giant (every two hours I ate 4 sandwiches even at night).

Joke was worried a lot and contacted the doctor and said that this wasn’t an ordinary flu anymore, she insisted in taking me to the hospital immediately.
Than it went very quickly, I went to the hospital. I was very ill at that moment and very weakened, I couldn’t walk anymore, so Joke drove me in a wheelchair into the hospital.

I can’t remember much from the first week in the hospital. I laid apart from other patients, could hardly breathe, with a strong fever and a lot of pain in my joints and still very hungry.

In that first week I had much examinations and tests, but the doctors couldn’t find a good diagnosis of my disease. Bit by bit they discovered what was wrong: I had a double sided pneumonia, my thyroid was running much to fast and my sinuses were seriously inflamed. Than at the end of the first week, after examinations of my lungs with the help of a tube that they did into my lungs, my pulmonologist discovered a high concentration of eosinophils. Also on the x-rays you could see the infiltrates of eosinophils as large white spots on my lungs. The tentative diagnosis was that I had Churg Strauss Syndrome, but they still had to prove on 6 items that it was definitely the case.

From that time on I got 40mg prednisone daily, strumazol for my hyperthyroid and cotrimoxazol for the sinusinflammation. I recovered quickly, but had to stay in the hospital for further examination, besides I was too weakened and got oxygene to breathe more easily.
After a three weeks stay in the hospital I could go home.

When we returned home Joke and I changed our habits of eating radically. I am convinced that when you eat pure food without the toxins of agriculture and you eat vegetables and fruit that got the time to grow and weren’t speeded up by fertilizer, and you eat meat without hormones in it, that it is a lot better for your blood vessels. I believe it to be also better for my allergies and besides, I’m talking about organic food, which contains more antioxidants, vitamins and minerals: the natural protectors of our body. Eating like this prevented that I was gaining weight because of the prednisone.

It took me almost a year to recover and to regain my strength in order to work again. My pulmonologist tapered my prednisone until zero, but two months later I got my first flare with strong pains in my joints, nodules back on my elbows and a neuropathy in my hands. But now I know what to do, so it didn’t develop as bad as the first time. My second flare came again in the late summer, begin autumn. Also this time tapering was done too quickly and the flare lasted longer than necessary, but that was more my own fault than my pulmonologists, because I wanted to be off prednisone too soon.

At the moment that I’m writing this I’m still on prednisone 20mg daily, but I’m tapering the dose, now with 2.5mg after 4 weeks. Than I have to find the dose as low as can be to stay out of flares, anyway a dose below 7.5mg to prevent the side-effects of prednisone.

Recently I found the CSSISG-group and I’m very pleased with this discovery, because you aren’t alone anymore with your CSS-problem. You can ask immediately advice if something is worrying you and you get soon “helping hands.” Furthermore there is so much valuable knowledge in this group and in the database of emails.


Nic Goederond
January 2006, CSS 02/2003

Go back