Jacklyn Herger is a pediatric AIDS nurse who worked at ICC in the early 90s. In 1996 she began the adoption process for two HIV-positive children from ICC through Catholic Home Bureau In 1998, the girls, Elaine, age six, and Liz, age four, came to live with Herger, her husband and five-year-old daughter as a family. A trained nurse, Herger gave AIDS drugs “by the book.” To her shock and amazement, it was only when she stopped giving the drugs that the girls got better.
Liam Scheff: What were the girls like when you first got them?
Jacklyn Herger: The girls had incredible psychological damage from growing up in medical institutions. They were both developmentally delayed, but in different ways. Liz could barely move. She couldn’t talk, play, or even walk; all she’d do was overeat. She was obese. She’d been on AIDS drugs since birth; she was put on AZT and Nevirapine shortly after I got her. Her hipbones were severely damaged because of the drugs; she had to have surgery to lengthen the tendons in her legs. She was also neurologically damaged, one of the side effects of AZT. She’d fall over and not feel it. She couldn’t respond. She wasn’t able to be a child.
Her sister Elaine was the exact opposite. She was intensely hyperactive, and she refused to eat. She’d come to the table, cross her arms, and say “I want my pediasure” – the drink that she lived on She had no connection to eating food. She’d been on AIDS drugs from infancy. She’d had debilitating glandular and ear infections. Elaine also had severe cognitive difficulties. The doctors told us she was born mentally retarded.
LS: How did you manage the situation?
Jacklyn: I gave all my energy to helping the girls heal and grow. We gave them healthy, expensive, organic food and lots of rest and sleep. They had speech and physical therapy, a good private school, tutoring. And lots of love. And we gave them the AIDS meds, by the book. Yet, after a year and a half of trying, there was no change. We were up against a brick wall
I was looking for answers, so I went to a lecture on HIV by Philip Incao, an MD with a background in Holistic Medicine. He talked about problems with the HIV diagnosis, the toxicity of the drugs and their effect on the immune system. What he said made me feel angry and threatened.
I confronted him after the lecture. I said, “I have two HIV positive children in my home right now, and you’re recommending that I take them off the drugs?” He said “Yes” “The drugs are too toxic for children.” He said that he had a better way to treat them and to strengthen their immune systems. He told me to read the book “What If Everything You Thought You Knew About AIDS Was Wrong,” by Christine Maggiore.
I read the book, and I spoke with medical professionals who all advised me that the drugs were harmful. I researched the drugs myself and reached the same conclusion. And for a good number of months, I struggled. I knew that Catholic Home Bureau and ICC wouldn’t support this, even if it was the best thing for the children’s health and survival. I had long consultations with Dr. Incao about what complementary and holistic medications to give the girls to support their immune systems. And after a great deal of research and thought, I took them off the drugs.
It wasn’t a dramatic, overnight change – I think it took their systems a while to clean out. Then, I don’t know how to say it - they became more and more… human. They became physically, psychologically, socially, cognitively - better, stronger. They were able to grow for the first time.
Eileen, who never ate, suddenly could eat me under the table. Her ear infections subsided and eventually disappeared. Her cognitive functions improved dramatically. The psychologist told me she was making incredible strides – past concrete to abstract thinking.
Liz, who’d been obese, began to lose the excess weight. She started to move more. Then, at five years old, she learned to walk. Within six months she was running, playing, laughing, riding a bicycle and jumping on the trampoline. The girls would giggle and dress up and put on plays together - everything normal children do.
The doctors at Nyack hospital, where the girls were seen, suspected I wasn’t giving the drugs, and didn’t approve. They were watching pretty closely. Then in 1999, Liz developed a blistering, peeling rash on her forearm. The doctors wanted to call it shingles (herpes zoster), which is an AIDS-defining disease, but it didn’t fit the clinical criteria, and they wouldn’t run the lab work to get it diagnosed.
What they didn’t tell me was that Nevirapine, the drug Liz had just been taking, caused the same blistering, peeling, potentially fatal rash (Steven Johnson’s Syndrome) that Liz had on her arm. We cared for her and she responded beautifully. She recovered, the skin healed, and the rash never came back.
But then Elaine came down with a glandular infection, and I wondered if I’d done the right thing by taking them off the drugs. And then, as if to answer my question, she got better. We cared for her, and she recovered and healed and was good as new.
Both girls had been on terribly toxic compounds for years. Their systems finally had a break and were becoming stronger. It was like their bodies finally had a chance to discharge toxins they’d accumulated from 6 years of AIDS drugs. They recovered like normal healthy children do from normal childhood illnesses. They continued on the same path of improvement – physical, cognitive and emotional – that they’d shown before the rash and inflammation. And life went on quite well.
But it didn’t. Even though the girls were quite healthy, the doctor claimed that we’d made them sick by not giving them the prescription AIDS drugs. The Agency for Child Services came to our house, unannounced, on a Saturday morning and took the children away.
We went to court for months to get them back. Medical experts from around the country came to testify about the toxicity of the drugs and the validity of alternate treatments. The judge wouldn’t even take their testimony. A psychologist told the judge how devastating it is to a child’s psyche – to be told that we were their family, to live in our home, to call me mom – then, in a moment, to have this wiped clean, never to see us again.
But that didn’t make any difference in light of the fact that I’d stopped giving the drugs, even though the girls were strong and healthy and the drugs are toxic. The judge ruled that the children be put into foster homes where their drug regimen would be enforced. We’ve never seen them again.
LS: You worked at ICC as a nurse, administering AIDS drugs. ICC participates in experimental drug trials. Was that always the case?
Jacklyn: Yes, we were doing trials back then too.
LS: What’s your clinical opinion of the drugs now?
Jacklyn: I was incredibly diligent with every aspect of the girls care while they were still on the drugs, yet they remained ill. They only improved when they stopped taking the drugs. Therefore it’s very clear that the drugs not only weren’t helping the girls, they were making them ill.
Jacklyn Herger did the impossible. She brought two girls, nearly dead from “AIDS” back to life, yet she was punished for her success. Herger’s achievement should be a model for pediatric AIDS treatment centers everywhere. Instead, the AIDS establishment has cruelly punished her. If we punish the innovators in AIDS treatment, then how do we expect to defeat AIDS?
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