HIV+ people who have never taken AIDS drugs, or have stopped taking them.
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June, 2016

This is is the first time I’m telling my story publicly.

On August 9, 1992 at 1:52 pm I had HIV-positive blood splashed in my eyes while popping tubes of blood. The table top shield wasn’t high enough and the vacuum in the tube was strong. Immediately I tried to rinse my eyes with water. My co-worker took me to the ER where they literally peeled my contacts out of my eyes. No one knew what to do with me concerning the protocol of using AZT to prevent HIV transmission.

An ER doctor called the CDC about how to handle a eye splash. It took 24 hours for CDC to call back and then I started AZT therapy for a month using the same dosage as a patient with full blown AIDS. I was the first person in my hospital to receive this treatment. It took the hospital over 24 hours to administer it to me because no doctor would write the prescription, so they did not know who would pay for it. So the 48 hour window was not followed.

AZT had many side effects but I managed to finish the month of therapy. That first year, even after stopping the AZT, was horrible, I had two small children and was scared to have any contact with them. I got a cold and thought, “This is it, I have got AIDS!”, but it was just a simple cold. I did go to a lawyer to talk about suing but decided to do it only if I turned out to be HIV positive.

I wouldn’t feel like myself ever again. I started to have pains in my legs, they felt like they were on fire [neuropathy]. My hair started to fall out and my whole body hurt. I had abnormal fatigue and a weird rash on my face. I saw many doctors who ordered lots of tests. Their conclusion was that I was a mother who was stressed out and not getting enough sleep.

Finally in 2003 my blood work came back abnormal. A muscle enzyme CPK came back at 2,000 mg/dl. I was diagnosed with Polymyositis.

I have done every kind of treatment and been to well known institutions. I would mention the fact that I took AZT and they would say that it has nothing to do with my symptoms. I called the CDC to see if they kept track of HIV-negative people were who took AZT. Maybe there were more people in my situation.

In March of 2011, I was awarded “Employee of the Month” at the hospital where I had worked for 31 years. Five months later hospital management had it in for me because I was disabled. I was harassed for a year and a half before they unlawfully laid me off. I had so much documentation about how they broke laws against ADA. My manager sits under this poster that describes how we should treat one another, and turned to me and said, during my evaluation, “You don’t look good, your health is deteriorating and you’re not productive”. This is just one of many examples of how I was treated.

One day I arrived at work and read my emails. One of them stated that I must go to my manager’s office and account for yesterday’s work hour by hour. Well I ended up in the ER with a blood pressure of 190/118 and, while I was there, people in the lab were looking at my medical history for no reason. It was a big HIPPA violation and nobody was disciplined for it.

In September of 2011 my condition was worsening so my physician sent me to Philadelphia. That doctor said my condition was directly caused by taking AZT for one month. I already knew that they were getting rid of me so I filed a workman’s compensation claim against the hospital. As of today they still have not reached a conclusion.