Keith has been HIV+ for about 25 years. He is 50 now. His HIV had been undetectable for about 2 years. So in January 05 his Dr took him off his HIV medication. All seemed to go well.
At the beginning of March he started to get a cold. It seemed to come and go. Around the 8th he thought he had the flu, he had a slight fever and was achy. By the 12th he had a terrible headache and his neck and back bothered him. I was worried about the HIV. I knew if I took him to our Dr they would draw blood, tell him to stay in bed and we would have to wait for the results. I took him to the ER and told them we could not get an apt with the Dr (that way I got out of the $100.00 co-pay). We waited about 2hrs and he was finally taken back.
They could not give him pain medicine until they ran tests. They did lots of those. MRI of the head, chest X-Ray and blood work. Everything came back fine. The Dr was about to tell us to go home and rest when a nurse walked in with a spinal tap kit. The Dr looked at her like the nurse was nuts. The Dr asked why she brought it in, and the nurse said with Keith's symptoms she thought they were ordering a spinal tap. The Dr sighed and said we really did not need to do it, and we would have to wait 4hrs for the results. Keith was about to get up and go and I said, fine. We want the test.
Keith was not happy but knew it was for the best. When the test came back, they said he either has or had meningitis. Normally, the Dr said, we would send you home, but since you have HIV we will admit you and make sure it's not Bacterial. He was put on antibiotics. He was there for 5 days still not feeling well, but his fever was gone and they were going to discharge him the next day.
That night before I left, he asked me to turn on the TV and light in his room. I told him they were on! He said his eyes must be tired. The next morning he was blind in both eyes.
More tests, lots of misdiagnosis mostly blamed on HIV. I got to his room about 7:30am every morning and walked him around the floor.
The 4th day of being blind, he said he did not feel like walking. I told him tough. I dragged him out of bed and he said his legs were weak. We got about 20 feet and he collapsed in my arms. I had to scream for a nurse. She brought a rolling office chair so I could get him back to his room. I picked him up and put him in bed. He started to cry and said he couldn't use his legs. They paged a neurologist and by the time he got there it started to affect his right side.
More tests. Pretty much by the next day he was completely paralyzed. They worried it would get to his lungs and he would have to be on a ventilator. Since he signed a DNR order, he could only be on the ventilator for 48hrs and then if he could not breathe on his own, they would have to let him go. They prepared me for his demise.
I was horrified. I had power of attorney but they would not let me change his orders. Luckily we found out that they had been giving him morphine (not ordered by the Doctor) to keep him from yelling at night for someone to pull up his blanket or ask for a drink. A nurse had passed me a note telling me that this was happening on the night shift. Anyway, I told the Dr and Keith never had to go on a ventilator.
None of the therapy for Devic's worked. His blood work finally came back showing his HIV had returned with a vengeance. He was put back on his meds about the third week. Now he was taking nothing but his HIV meds.
The 27th day or so (about a week back on his meds) he saw my shadow as I said goodnight, we both burst into tears. The Dr's told me it was his imagination. They tested him and it was true, though they did not know why.
The 28th day (and the day before being discharged to nursing/rehab home) I was holding his hand and felt his thumb twitch. I screamed for a nurse, she came in and witnessed it. There was hope.
Things happened fast once he got to the nursing home. He was transferred there on a gurney, paralyzed and blind, about 7 weeks later he left with a walker and some vision.
Here we are almost a year later and he has about 60% of his vision (color is still an issue) and he sometimes uses a cane if we have to be gone a long time. This is the very short story.
The thing is, no Dr can explain why he got so much better. I kept saying it was his HIV meds and no one believed me. Finally I took him to Johns Hopkins and saw a specialist. He had never seen such a severe case of Devic's recover so
quickly. I told him I had found 2 articles about HIV+ Devic's patients and they ALL got better faster and more completely than any other severe Devic's patient. He said he would have to agree with me.
They are studying Keith's case and immune system. But Randy (another member) and I have found at least 3 studies dealing with either HIV meds for MS/Cancer/Lupus or studies of new meds dealing with T-Cell therapy.
Thanks for listening. We need all the support we can get!