Earlier this month, I regressed to the dreadful memory of my high school lunchroom. We’ve all seen it in movies, and probably most of us still experience the feeling of navigating tables full of unknown people and trying to find a friendly face to sit next to–or at least not a hostile one.
I was at a medical conference, and I settled on a half-full table, in between a young woman and a man not much older than I am who had a shaved head, hip goggle-like glasses, and a friendly face. The man and I struck up a conversation. He could have been a European talk show host, I thought–he is, as it turns out, in a way. His name is Fred Verdult, and he traveled from Amsterdam to Philadelphia for the medical conference.
Fred was diagnosed with HIV in 1998. “I decided at once to be completely open about it so that I did not have to live with a secret,” he said. “I had virtually no health problems and two years before, an effective treatment had been found. My life expectancy with HIV is practically normal.”
Fred’s optimistic outlook has led him to make the most of what for many, especially in the 1990s, was a devastating diagnosis. Shortly after he found out he was HIV positive, Fred opened Volle Maan (Full Moon), a medical communications and surveying company. His organization has won national awards in the Netherlands, and he says that Volle Maan collaborates “with all HIV-related organizations” in the country. He is an adviser on a national panel to reduce the number of new HIV infections, and “on a worldwide strategy to find a cure for HIV.”
One of Fred’s biggest projects is a World AIDS Day event at the Royal Theatre Carre in Amsterdam at which he interviews HIV patients and experts, such as Françoise Barré-Sinoussi, who won a Nobel Prize for discovering the HIV virus in 1983. Olympic champion Greg Lougainis is among the guests Fred interviewed at the 2016 event, held last week in Amsterdam.
I am gay, and having been born in 1978, I was a child when the AIDS epidemic was a plague and a terrifying mystery. I was an adolescent–a teenage boy growing into my sexuality–in the 90s, when HIV/AIDS was fairly well understood, and understood largely as a “gay disease.” It was terrifying. It felt like a curse. I am happy to be HIV-negative to this day, but I feel like I have a good grasp of the stigma of the disease.
That’s why I was curious to ask Fred about something I have asked and written about, something that has caused some controversy and a few complaints (all from HIV-positive people): Is it fair to say that Lyme disease in many respects is the new AIDS?
Lyme disease is a bacterial infection; HIV is a virus. The ways the two infections interact with the immune system are very different, and while HIV is transmitted through bodily fluids, Lyme is primarily transmitted through tick bites. (Although it is important to note that other potentially deadly tickborne illnesses that frequently co-occur with Lyme disease, such as the malaria-like babesiosis, are readily transmitted through blood transfusions.) In short, Lyme and HIV, pathologically speaking, are nothing alike.
So how are they alike? In short, people who live with progressive untreated Lyme, or persisting/chronic Lyme disease following short-term treatment (called post-treatment Lyme disease syndrome, or PTLDS, by the CDC) suffer such severe health problems that they can’t function; many feel as if their bodies are shutting down. Lyme doesn’t kill people as aggressively as HIV does, but it takes their livelihoods away. And like HIV/AIDS patients in the 80s, many doctors refuse to have anything to do with chronic Lyme patients. The difference is that instead of saying they’re afraid of catching the disease from them, they say that these patients don’t have the disease at all.
This has been Fred’s experience. He used to be an avid cyclist, traversing the Mediterranean and the Alps on his bicycle. Five years ago, he found a rash on his abdomen that his partner thought was shingles. His doctor said it was a rash that would probably go away, which it did. Six months later, Fred says, “my life became a nightmare. It began with slight defects in my memory and my ability to concentrate. Every week it grew worse. Occasionally it happens that somebody’s HIV virus is effectively suppressed in the blood, but not in the brains. A professor of neurology who is specialized in HIV, could see me right away, and he had an MRI done and a lumbar puncture, but no damage or virus was found.”
His doctors told him he was overworked and to relax.
Soon, Fred was suffering from erratic heartbeats, fatigue, and an inability to think. “The most invalidating complaint is brain fog…I lie on my couch, I vegetate and I wish that my life would end.”
Fred’s general practitioner had no idea what was wrong with him, so his HIV specialist collaborated to solve the mystery. “In the treatment of HIV, she takes her patients’ complaints very serious, also when these are hard to measure, like fatigue.” In two and a half years, Fred says, he saw 37 doctors and his symptoms worsened. A neurology professor suggested epilepsy, multiple sclerosis and chronic carbon monoxide poisoning.
Ultimately, Fred saw a headline that read “Worries About Suicides Among Lyme Patients” on the national Dutch newspaper De Telegraaf. He read about Lyme and asked his HIV specialist about it. She gave him a month of doxycycline, and when that didn’t cure his symptoms, she told him he doesn’t have Lyme. She was wrong.
Fred was diagnosed with Lyme by a specialist in Germany. After several months on a combination of antibiotics, Fred says, “my complaints had been reduced by over 90 percent.” He stopped taking the medications and relapsed within two weeks. (A personal aside: Had this not been almost me exact experience, I don’t think I’d believe any of this–such is the strange manifestation and the stigma of Lyme disease.)
Fred is doing better under the treatment of his Lyme specialist, but he has to travel to Germany for treatment; no doctor he has found in the Netherlands will even discuss Lyme disease with him. His formerly compassionate HIV specialist “no longer takes me seriously in conversations and she avoids consultation with my German doctor, although that would be more appropriate because of the possibility of a serious interaction between my HIV meds and the antibiotics.”
Fred is an HIV success story, having not only survived but thrived in the face of a life-altering diagnosis 18 years ago. He turned lemons into lemonade and has contributed immensely to improving the lives of other HIV patients in the Netherlands and throughout the world.
Despite all this, now that he has a pesky case of life-changing Lyme disease that won’t go away, he’s treated with disdain by the very same Dutch doctors who gave him nothing but compassion as a patient with HIV. They not only can’t help him; they don’t want to help him.
Not only do they not want to help him; they don’t want to hear about his health problems. So Fred, like a lot of Lyme patients, has found that his country’s incredible public health system is useful for HIV and the sniffles, but draws the line at Lyme disease; he pays out of pocket to travel to and stay in Germany and out of pocket for medical expenses so that he can function and carry on with his life.
This spring, Fred will be hosting an event in Amsterdam to raise awareness about Lyme disease, modeled on his incredibly successful HIV event, which fills a national theatre with over 800 people each year. Just as he refused to succumb to either the illness or the shame of it nearly 20 years ago when he was diagnosed with HIV, Fred is not backing down when he’s told that Lyme–which has made him far more ill than HIV ever has–is no big deal, or all in his head.
This World AIDS Day, let’s remember the whole story of the AIDS crisis. Yes, HIV is one of the deadliest diseases the human race has ever battled, and yes, it’s still a battle. But the lessons of the AIDS crisis are more than the disease: Lessons should have been taken from the response to the disease. It was terrible. It was inhumane. Sick and dying people were rejected by medical professionals who didn’t understand the disease and who stubbornly held onto outdated, false information even after viable treatments were being found. Guest on national talk shows chastised, laughed at and shamed AIDS patients, and it only turned around when people collectively decided that this was wrong. This happens today to patients who have Lyme disease, a poorly understood and life-altering illness. To me, World AIDS Day is about the collective power of humanity to overcome mortal threats and to overcome biases and bigotry. Both of these battles are never ending, and to progress we have to keep reminding ourselves of this.
In the United States, 39,513 people were diagnosed with HIV in 2015. The National Institutes of Health dedicates $3 billion per year to researching it. ($75,924 per patient.) Today, most HIV patients can live normal lives with available medications.
And in the United States each year the CDC estimates that 329,000 people are infected with Lyme disease; NIH dedicates $25 million to Lyme-related research. ($76 per patient.)
“In my opinion,” Fred told me by email this morning, the similarity “between the efforts of society to beat HIV and the way society deals with Lyme is even bigger than I thought.” But, he said, “research in prestigious universities is hopeful.” We just need more of it.