Saturday, April 28, 2012

I have been sick for 8 months?

I turned 16 years old in April. Last October, I got sick with what we thought was the swine flu and I never recovered. I was very healthy; slim, 5'4" dancer, and about 116 lbs. I got sick with a horrible stomach virus. I always had the gagging urge in the back of my throat, but when I would throw up, only very small amounts of acid would come up. I kept a migraine headache, and my nose would bleed four and five times a day. I went to the doctor, and he did a swine flu swab that came back positive. He said come back in three weeks if you aren't better. Three weeks, I was back at the doctor. I still had some appetite, but the vomiting was still there. I had also developed a scaly oozing rash then went down the back of my legs. And I was having panic attacks [daily] for the first time in my life. I went back to the doctor, he prescribed me zoloft for anxiety, zofran for the nausea and vomiting, and omeprazole for stomach spasm. On Christmas, I was taken to the urgent care because I had been throwing up then collapsed and was out for over ten minutes. In two and half months I had gone from 116 lbs to 99.6.

I am a competition dancer, and we have three hour practices 5 times a week. It is very challenging and physically demanding, but I love it. Dancing is my life. When I got sick, I had to quit. I missed four months. This was the first time I had missed a practice in 3 years.

While at the hospital, they ran bloodwork for everything from food allergies to Chrones disease. My food allergies came back, and I am allergic to soy, malt, oat, peanut butter, corn starch/powder, and whey. Those were the top 6, ALL of which had developed over the last 6 months [ I had recently had a physical].

The tests for Mono, Chrones disease and Celiac disease were all negative, and my white cell count was atill on the low side of normal, so an endoscopy and colonoscopy was called for. Everything looked normal except for my esophogus, which was irritated and inflamed due to the acid. When they did an ultrasound, my gallbladder was severly contracted, causing me a lot of pain, put it still looked normal [no inflamation or infection].

By the end of January, I was down to 83 lbs. I was on 7 medications, 16 pills per day, all treating the illness symptomatically. I was diagnosed with IBS [irritable bowel syndrome] and prescribed the highest safe dose of lexapro for anxiety. My sysmptoms now included, but were not limited to dizziness/vertigo, nausea, vimoiting, fatigue, loss of appetite, extreme hair loss, nosebleeds, weight loss, stomach cramps, shaking, muscle cramps/spasms [lasting for up to an hour], insomnia, joint pain, anemia, and I had not had a period since October, the week before I got sick. Everything led back to Celiac disease, when my doctors seemed insistant upon, other than the MAIN factor that I was not allergic to wheat [gluton], the cause of Celiac.

Now it is June, and I am still sick. I am back up to 100 lbs, and I can dance in very small amounts again, but most of the symptoms remain. I take Zofran and phenergan for nausea and vomiting, but it only works occasionally. The lexapro has helped with the anxiety attacks, but only to an extent. I have another dozen medications for my symptoms.

I'm just tired of being sick. I want my life back! Is there any doctors out there who might know what this is, and how I can get better?

*Oh! I also have a severe iron and Vit. D defficiency [I take 400 mg of Iron 2x dailey, and 2,000 mg of Vit. D 2x dailey also] And I am allergic to UVB rays [I break out and get sick if I am outside for more than 15 minutes]

Answer on I have been sick for 8 months?

Have they rechecked you for swine flu since your first visit. It almost sounds like the swine flu precipitated this and you have never gotten better. If they checked your small intestines for celiac disease with an endoscope, you don't have celiac disease or they missed it. One thing worth trying is going gluten free for 2-3 months and seeing if any or all of your symptoms clear up. There are circumstances of having a non-celiac gluten intolerance which has same problems as celiac but doesn't register on the celiac tests.

I don't know where you live, but you should explore getting your case reviewed by a large teaching hospital and getting seen there. If you are in Maryland, New York City or several other places, there are celiac centers that would be helpful in not only diagnosing CD but some of the other hard to figure out issues.

Did you ever get given Tamiflu or one of the other antivirals? How about IV Peramavir which is an IV antiviral?

Good luck and Hope you get well soon!!

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