I was diagnosed with HIV in 2018. By the beginning of 2019 I was vomiting up some of my antiretroviral drugs (ARVs), but I never reported that to the clinic because I thought it was normal. I started having headaches, not just normal headaches… serious headaches. I couldn’t even sit or sleep. The headache would pound anytime…night, day. Sometimes, at first, the pain would disappear for an hour maybe, then it would come back. I took Grandpa (paracetamol) but it didn’t help, so I decided to go to the doctor.
The doctor told me it was low blood pressure, not too serious, and I went back home. But it continued and now I was at a point where I had blurred vision. My relatives were advising me to see a sangoma (a traditional healer). You see, when something like this happens in our culture, when it feels like boiling blood has been poured into your brain and paracetamol doesn’t help, some will believe that there has been foul play, and you must see a traditional healer. My aunt who is a nurse in Mitchell’s Plain, in Cape Town said “no, she is going to hospital now,” and when I was trying to get out of bed I had a seizure, and I only woke up the next day in hospital.
They did a lumbar puncture (a medical procedure in which a needle is inserted into the spinal canal), and then they told me that I have cryptococcal meningitis. I was like, “what is cryptococcal meningitis?” And they explained that it's when your brain is attacked by a certain bacteria, and it puts pressure on the brain.
I was terrified. When it has to do with the brain, you get scared. I thought I was going to die, because I was still vomiting up medication, so I was wondering how am I ever going to get healed? The only time I felt some relief from the headache was when they did a lumbar puncture, and as painful as this procedure is, I would call the nurse and ask for it, as many as three times a day.
I was on a drip, and they included me in a clinical trial and I received flucytosine as part of my treatment. This is an antifungal medicine that is not available normally, so I was fortunate. I was discharged after 14 days, and although they said the infection was clear, I felt sick when I got home, so I was admitted for another seven days for observation. The headaches are clear now and I can get back to my normal life.
But it continued and now I was at a point where I had blurred vision.Zikhona Mboto, was diagnosed with CM in 2019.
What I want to say to others is you need to take your ARVs properly. If you don’t it leaves the gate open for opportunistic infections like cryptococcal meningitis. When I was diagnosed with crypto, my CD4 count was as low as one, I had no immunity. Now I make sure that I take my treatment correctly.
My other message is don’t wait to go to hospital. I had symptoms of cryptococcal meningitis already in December 2018, and I was diagnosed in March 2019. Waiting almost cost me my life.