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

Paula was married twenty-one years to the same man and had eight children. She home-schooled them all, and had the last three at home with a certified midwife – way ahead of her time in her small Texas town.

When her children had side-effects to their vaccinations, Paula started questioning standard medical protocol. In her spare time (!), she studied alternative health practices and became a certified Herbalist; and then, while working for an herb company, she created a home-based health practice.

After trying to deal with her husband’s alcoholism for nine years, they got divorced, and then Paula met Dave. He owned his own ATM business, and they traveled all over the country together in a motorhome. They were married for nine years, and Paula thought of him as her best friend as well as her husband. She never dreamed he might have been keeping a secret from her.

In 2000, Dave’s ex-wife told Paula that he was HIV-Positive. “I nearly passed out,” Paula recalls. “I was just dumbfounded, because this woman had always been very sweet to me, and I couldn’t understand why she would make up something like that. And I was certain Dave would have told me, since we shared everything with each other.”

When Dave came home that evening, Paula confronted him with her news. “Sweetheart, I don’t have HIV,” he assured her. “It was something my ex-wife and I cooked up because we were getting a divorce.” And then he told her some wild story she didn’t believe. Paula insisted they both go take an HIV test, and Dave agreed he would as soon as they got back from their next trip to California. “I promise you, Paula, I do not have HIV,” he insisted.

About a month later, while Dave and Paula were teaching an ATM class in California, Dave came down with a fever and chills. The doctor said he had bronchitis. In the nine years that they had been together, Dave had never seen a doctor, had never taken an aspirin or any other medication, and didn’t drink alcohol. True, he drank a pot of coffee every day and smoked cigarettes, but he had always been perfectly healthy.

However, the bronchitis continued to get worse, and Dave’s doctor prescribed antibiotics. Several days passed, and when nothing seemed to be working, Paula insisted that Dave get a chest x-ray. The doctor first diagnosed pneumonia from the x-ray, but Paula was suspicious. She sent the x-ray to another doctor in Houston who said it was advanced tuberculosis and that Dave needed to get to a hospital immediately.

By this time a couple weeks had passed, and Dave had lost a lot of weight. So Paula took him to the emergency room at the VA hospital in Dallas. She pulled a nurse aside and said, “I need to know if he’s HIV-Positive or not.” The nurse looked in Dave’s medical history and told Paula she can’t find a thing in the records “that even looks remotely suspicious.” But she suggested that Dave sign a release and get tested again right then.

Dave signed the release and gave his blood for the test. But he was having a very hard time breathing, and the doctors wanted to put a tube down his throat to get oxygen to his lungs. During the intubation procedure, Dave had a heart attack and died. The HIV test was now the last thing on anyone’s mind.

It was two weeks later when Paula received a call; Dave had tested HIV-positive. “So not only am I dealing with his death, but that he may have lied to me, too. And why? I just knew with all my heart that this man loved me. How could he have deliberately, willfully lied to me about this? I just couldn’t understand it. I was totally devastated. You can’t imagine the pain I was dealing with.”

Unfortunately, during that call, no one bothered to tell Paula that tuberculosis could easily cause a false positive result on an HIV test.

Paula decided she needed to get tested herself. She went to a local clinic, but the nurse was too afraid and refused to take her blood. So the doctor had to do it, and he didn’t wear any gloves. In fact, he botched the job so badly that Paula’s blood ended up all over everyplace, which the doctor just mopped up with some cotton balls in his bare hands, joking and telling Paula, “I hope you’re not contagious!”

Two weeks later the doctor called. “He said, ‘I just needed to tell you that your HIV test is positive, and I don’t know what to tell you to do.’ I asked him if I was supposed to come in for counseling, and he told me he didn’t have a clue. And then he hung up on me.”

Paula spent the next couple of days crying constantly, not only for the loss of her husband and best friend, but now also for herself. “I didn’t know what to do. Was I going to die in just a couple of days? Had I also been exposed to tuberculosis? I happened to remember that I had seen a phone number for something called AIDS Resource in the local newspaper.”

Paula called AIDS Resource in tears, and they sent a very nice lady to her house. She asked all sorts of questions about Dave, took some more blood from Paula, and left.

Paula waited another two weeks before the lady returned to the house to tell Paula the test was positive. “’But,’ she said, ‘don’t worry. This is just a screening.’ She explained that the ELISA test both she and the first doctor had given me was just a screening test. Of course, the doctor hadn’t bothered to tell me that the first time.”

AIDS Resource then took more blood to do another ELISA. Paula waited another two weeks. Same result. They took her blood again. “By this time I’m thinking that I’m not going to die from HIV, I’m going to die from a loss of blood!”

This time they did a Western Blot, and Paula had three bands react out of a possible ten, but she doesn’t know which bands or which test criteria were being used. Whichever it was, it was enough to give a positive confirmation.

“When she arrived at the house to bring me the results, the first thing she said was, ‘Paula, I want you to understand. You are not to tell anyone you are HIV-Positive – not your children, not your family, and not your neighbors – because you never know what their reaction might be. Your neighbors could burn your house down. We just don’t know what they will do.’”

“Then she proceeded to tell me that I would be dead within a year, that I would catch a cold or pneumonia, or something like that, and I would just die. But as far as I knew, it was only gay men who were getting HIV, or drug addicts; and never in my life have I ever done anything bad – never done drugs, or been promiscuous. And now I’m supposed to be HIV-Positive? It didn’t make any sense.”

Paula’s viral load was only 400, and her T-cells were 700 – both in normal range.

They also didn’t tell Paula that prior pregnancies – especially eight of them – can also cause a false positive HIV test result, not to mention her exposure to tuberculosis.

“I didn’t do what AIDS Resources told me,” Paula admits. “I gathered all my children together and told them. Their first reaction was to be angry with Dave for giving it to me and not telling me. That made me so sad, because they loved him, too. When my daughter told my teenage grandson, she explained that nothing would change: he would still go see his grandma and kiss her and hug her, like always. He looked at her and said, ‘Well, of course, Ma. It’s not like I’m going to have sex with my grandmother!’”

All Paula’s children have supported her from the beginning and not acted any differently toward her. But Paula went through the normal questions: What did I do to deserve this? What signs did I miss? Why didn’t I pick up on it? And even with all she knew, she still wondered about Dave: Why didn’t Dave tell me the truth? How could he do this to me?

“The toughest part for me was that I didn’t know what would actually happen to me, or when. And nobody would tell me, other that I would die in a year. It just left me hanging with all these questions and fears.”

Three months later, another test would show an undetectable viral load and T-cells of almost 900. “After a couple years, when my viral load was always undetectable and my T-cells were steady at around 1500, they told me to stop coming every three months and just come once a year. I’m probably healthier than the doctors.”

After Paula finally resigned herself to her positive diagnosis, she started driving an hour to a bigger city to go to the weekly AIDS Resource support group meetings. But she didn’t feel like she fit in.

“The only people there were gay, and I wasn’t. My counselor was also gay. Now, I’m not prejudiced, but I just didn’t feel like I belonged there. They soon stopped running the ad in my local newspaper, because it appeared that I was the only one in the whole town who was HIV-positive!”

Paula remembers how all of the people in the support group were taking lots of drugs. “There was one guy on some experimental drug, sticking himself every day in the abdomen with a needle. All the women who were in that group when I was going are now dead. All of them. And they all were taking the HIV drugs.”

But Paula was never pressured to take the drugs. “When I finally got an appointment with the local Health Department, they said, ‘We’re not going to talk about drugs for you until your viral load is in the 20-30,000 range.’ Of course, that never happened.”

What did happen was a total surprise to Paula. She met a man on one of the online HIV-positive support groups, and after a few months of computer talk, he came to Texas to meet her. His name was Mel.

“Dave had been gone well over a year, but I wasn’t ‘looking.’ I told Mel I wasn’t interested, that he should go away. I told him I wasn’t strong enough to fall in love again, get married, and then watch somebody else die. He looked at me asked, ‘Did it ever occur to you that you could go first?’ Well, no, that had never occurred to me.”

Mel took her to the NASCAR races for their first date. “He told me he couldn’t guarantee what would happen the day after tomorrow, but he also told me I couldn’t guarantee him that either. He said he had been divorced and lonely for nine years, and he thought it was a shame not to be happy with someone just because of the fear of what might or might not happen. And he was right.”

Mel did leave, but came back and visited a couple more times; and in between they talked daily on the computer. Finally, they both decided they didn’t want to be apart, and Mel moved to Texas.

“I had never been with anybody so sweet and kind and loving, trustworthy, honorable…I had just never been treated so well. Just a wonderful, wonderful man. He could put me in stitches, he would make me laugh so much.”

Mel was very well-read about HIV and had gone to Johns Hopkins every year since he was diagnosed in the early 1980’s. But he admitted to Paula that he had never had an ELISA or a Western Blot. He had been very sick, with a T-cell count below 200, and was diagnosed with AIDS, but had never been tested for HIV.

He had tried taking AZT early on, but got “deathly ill.” He tried a lot of other medications as well, and each time the drugs would make him sick, he would go back to Johns Hopkins and demand something else. By the time he met Paula, he was still taking some combinations of HAART (Highly Active Anti-Retroviral Therapy) and was experiencing the usual side effects of diarrhea and neuropathy in his feet.

Paula and Mel would sit down and go over their blood test results together, and ever since Paula met Mel, his viral load was undetectable. When they first got together, his T-cells were around 400.

“Mel thought that it was the drugs that were keeping his viral load down and his T-cell count up. More than that, he thought the drugs had saved his life. But I thought something different.”

Mel and Paula started reading a website called AliveAndWell.org, from Alive & Well AIDS Alternatives, and began ordering books like Positively False by Joan Shenton. It was enough for Mel to begin questioning things he had believed for the last twenty years. As a result, he began to exercise and change the way he ate, and they both did everything they could think of to bolster their immune systems.

“We just kept getting more and more healthy – both of us,” Paula recalls.

Then life had another surprise in store for Mel and Paula. Two days after Christmas of 2005, a wildfire burned down their home, along with twenty-one others in the neighborhood. They lost everything, including the medications Mel was still taking for his AIDS.

Two days prior to the fire, Mel had gone to his doctor for his usual six-month check-up, but after waiting two hours, he was told the doctor had cancelled all appointments for that day. When he went the next day to try again, he waited another two hours and still didn’t get in to see the doctor.

When the fire destroyed all of Mel’s remaining drugs, he called the doctor and explained that he needed his prescriptions refilled immediately. The nurse told Mel that the doctor couldn’t write new prescriptions without seeing Mel first. Mel explained that he had just twice in the last week tried to see the doctor, but the nurse didn’t seem to care and wouldn’t budge. When Mel agreed to make a new appointment, he was told the next available time slot was in two months.

Mel confided that he was in a lot of pain from the neuropathy, and had been through a lot of stress with the fire, and pleaded with the nurse for his medicines, or at least an appointment right away. The answer was still No.

For the next three weeks, Mel called every AIDS support group he could find, and every doctor, and every hospital trying to get an appointment to get his prescriptions filled. Finally a doctor agreed to see him, but he needed Mel’s medical records transferred from his first doctor. Two weeks later Mel got a call saying, “Sorry, I won’t see you because your doctor said you were “non-compliant” and didn’t keep your appointments.”

By this time, however, Mel had started to feel better. His feet still hurt from the years of neuropathy from the drugs, but he was sleeping better, he had more energy, and his skin cleared up. One night Paula noticed that the hard, swollen lumps in his breasts were even gone. When a girl-friend of Paula’s remarked on how good Mel was looking, he said, “I hate to admit it, but I really do feel better not taking the drugs.”

Meanwhile Paula had read everything she could get her hands on about HIV and AIDS, and one day she took all her books and papers in to see her doctor. She explained and showed the doctor all the information, including the fact that multiple pregnancies could easily cause a false positive result on the HIV test. All her doctor could say was, “Well, Paula, I guess you must have a defective gene.” Whatever that means.

“I looked at her and asked, ‘Well, seems to me that would be a good thing, then, considering the fact that I’m HIV-positive but as healthy as I can get. I’ve never had one symptom of HIV infection. I’ve never even had a yeast infection in my life. Why isn’t anybody studying me to figure out how to make other people’s genes defective like mine, so they can all live as long as I have with HIV?’ Isn’t it ironic that my doctor can look at me, a perfectly healthy woman, and decide that the only reason I’m healthy is because there’s something wrong with me!”

Even after all her reading and studying, Paula still has questions. “From the very beginning I have wondered, if AIDS is caused by a virus, and happens mostly to gay men, how does a virus knows someone is gay? And now they’re saying that the poor and uneducated are much more at risk for HIV infection. But how does a virus know someone is poor or uneducated?”

Paula wondered if there was someplace in the world where she could move and take a new test and be HIV-negative this time. Because of her multiple pregnancies and exposure to tuberculosis, the chances of that are pretty slim. But like most HIV-positives, she longs to have the stigma removed.

“Whenever my neighbors come to visit, I have to run around my house hiding all my books and papers that say anything about HIV and AIDS, because I still don’t know what their reaction might be. And if it weren’t for my positive diagnosis, I would probably be a mid-wife right now, because after all my experience and knowledge, and my love of babies, I could be a good one. But I can’t do that. There are a lot of things I could do with my life right now if I didn’t have this awful label.”

“Right now I want to help spread the word that you don’t have to be gay, you don’t have to be a drug addict, you don’t have to be poor and uneducated to be diagnosed HIV-positive. Literally everyone is at risk, because of so many false positive results. It’s such an injustice!”

Paula thought seriously about starting an Alive & Well support group where she lives, but she realized that nobody would come, because according to AIDS Resource, you’re not supposed to tell anyone else that you’re HIV-positive.

“If I had cancer, I could talk about it. If I had diabetes, I could talk about it. Heart disease….whatever. And it would be no problem getting a support group going. But HIV? I’ve got to keep that a secret. It feels like I’m the only person in the world that has it – at least, in my world.”

Today, Paula is the only one in her world who is HIV-positive. Three weeks before this posting, Mel was killed suddenly and instantly in a head-on car crash.

Paula M.

 

November, 2012 postscript:

For 11 years I went to the Health department and I kept asking them why nothing was showing up on my CD4 and viral load tests and they said, “Well we know you have to have it because you had a viral load once. Which was the very first viral load test  I had. Then, 3 months later, and for another 11 years I didn’t have a viral load and my CD4 counts were very high (1200 and higher). Anyway they just wrote in my medical records that I was in denial and that was it. They never did anything for me, just took my blood every 6 months and said that I was still healthy. Also I have always lived a healthy life style and I don’t drink, don’t smoke and have never done drugs.I do take herbs for the immune system and I take one that is supposed to make the body hostile to viruses. I don’t know if that has anything to do with it or not. But I do know that it doesn’t hurt me. After I qualified for Medicare I got insurance and went to a family doctor and told him my story and he said “well maybe you don’t have it, but if you do I will send you to an infections disease doctor and you will still live a long life”. He said that he had had several patients with it. So, he apparently had experience with this before. After my test came back he called me in and I was thinking this is going to be the same old thing and I was not looking forward to this. But instead he said, “Well you don’t have it and apparently you never did.” I was so happy that I now know  it wasn’t all in my mind and that I should have followed my feelings. I am happy, but now I have to figure out how to live my life without thinking about this. I am very angry about what I have gone through and I would like to sue the health department but I don’t want to relive all of this or spend my life fighting this.