I used to love taking all-day urban hikes through the neighborhoods of Washington, D.C. The last one was in April of 2010. I recall the date clearly because my life changed during that walk: Everything was normal on that beautiful spring day, and then I stepped from the curb into the street and was nearly shaken to the ground by a sudden earthquake.
I looked around. Everyone was carrying on as usual unaffected, and I realized as electrical shocks seemed to be zapping me from the ground that the earthquake was entirely personal. Confusion and imbalance lasted only seconds, but the extreme electrical pain in my lower extremities, for which I’d come to accept “pins and needles” as an apt description, lasted for days. I stayed in bed for those days, only getting up to use the bathroom and get food and drink. Pressure from underneath aggravated the shooting pains, so I’d hop on tiptoes or even crawl. This experience humbled me at 32–but it wasn’t over.
Within months, new problems arose; this would be an epic-length story, but I’ll just list some of them: blurred vision that I had had on and off since my 20s because double vision; occasional hearing fluctuations in my left ear that I had had on and off since my 20s became total deafness, or sound drowned out by maddening tinnitus. I had extreme panic attacks and bouts of mental instability that kept me from getting out of bed, I was so depressed; I could make no sense of what was happening.
I had recently moved to Washington, D.C. from the Virginia suburbs, and it took over a month to find a doctor’s office that would accept new patients–despite the severity of symptoms. One office I called said that they were only accepting new patients who are HIV positive…long pause…”Oh, OK,” I said. “I’m not.” My heart raced.
I was born in 1978 with an idiopathic (of unknown origin) illness; throughout early childhood, I was anemic and doctors sometimes suggested blood transfusions. My mother refused for fear of the emerging crisis that would become known as AIDS; instead, my parents literally force-fed me red meat to avoid transfusions. As I adolescence arrived and my sexuality presented itself on the threshold of the 80s and 90s, AIDS was a real-life American Horror Story for gay men, and I inherited a tremendous fear of it.
And here’s the truth: as much as I always feared HIV and AIDS in my youth, I probably feared the scarlet brands of those acronyms even more. To me, HIV and AIDS were avoidable but ever-present dangers, and if I acquired HIV, it would be because I personally failed to protect myself. Every HIV test I’ve ever taken throughout my life has caused an acute panic attack.
So when my health went from 100% to 40% in 2010, I was terrified. I finally found a doctor’s office that would accept new patients. As I was heading there via the Metro–whose stairway-to-heaven-length escalators are perpetually broken–my left leg went limp suddenly and went from doing its job to becoming dead weight. I literally hopped down the perpetually broken Dupont Circle Metro escalator on one leg, dizzy and almost certain I was going to collapse and take a slew of commuters down with me as I slinkied my way to the bottom. But that didn’t happen. I made it to the Metro, and to the doctor’s office.
My new doctor was Russian, with a name I could hardly pronounce. I described my symptoms; he was genuinely troubled by them, and I knew this was serious. His first question, unsurprisingly but terrifyingly, was “have you been tested for HIV?”
I’m sure I lost a few years of life in that moment: my heart skipped beats, certainly; it seemed like an inevitable fate: all my life growing up gay during the AIDS crisis, the only monster I really feared in the world, and despite all my efforts…was this it? Fate had caught up to me as in a Greek tragedy?
Actually, no. And this is the point of sharing this story–particularly with gay men.
I’ve been tested for HIV every six months throughout my entire adult life–even during years-long periods of total celibacy (when you’re ill, life reprioritizes itself), and I remain HIV negative. I resent my internalized fears about the disease and I certainly don’t have anything but empathy for those who have come up positive–but I can’t shake that I was conditioned to really fear this monster, through the collective traumas of the 80s-90s.
So isn’t it an ironic twist of fate that I’d end up with something that, quite unlike HIV, is very difficult to diagnose and far less treatable. Thanks to decades of research with significant funding, a diagnosis of HIV has changed from a death sentence to a chronic but manageable disease. Twenty-five years ago, it would have been unthinkable for someone to say “I’d rather have HIV than diabetes”–but that’s exactly what this doctor said, as HIV has become for so many something they live with, not something from which they die. For a number of years, as symptoms as severe as cluster headaches (called “suicide headaches” for good reason) to sudden disabling vertigo episodes came and went, I was a human lab rat enduring medical tests that could be described as medieval torture, particularly electromyography, which entailed long needles being inserted all over my body approximately 80 times, followed by increasingly strong electric shocks that at one point caused full body convulsions. This test was to rule out ALS, and eventually I was told I may have multiple sclerosis.
Actually, it turns out that I have Lyme disease--and almost certainly have had it since I was first diagnosed in 1997 at age 18. I only discovered this last February, after I was diagnosed by an ear, nose, and throat specialist with something called Meniere’s disease, which he said caused the characteristic hearing loss (approximately 50% loss in my left ear) and sudden and totally disabling attacks of vertigo. In an incredible coincidence, after five years of medical investigations, I received my first official medical explanation of some of my symptoms on the same day my mother found a copy of the prescription for doxycycline that I was given at age 18, when I was diagnosed with Lyme disease. At that time, I was given 100 milligrams of doxy twice a day for 10 days–a treatment 10 to 20 days shorter than what is currently prescribed for acute Lyme treatment. Given my symptoms, which sometimes are frighteningly similar to those of multiple sclerosis, sometimes like rheumatoid arthritis, and sometimes (really) like Alzheimer’s disease (I rely on text messages to myself to remember, for example, where my car is parked.), it was clear to the Lyme specialist I ultimately found that this disease has been progressing inside my body for half my lifetime. I am 37 years old and about 80% of the time live the lifestyle of someone in his 70s.
So why am I writing this in Gay Voices? Because as fate would have it, I am essentially living with AIDS–not HIV, but full-blown AIDS, without having AIDS at all. Lyme and associated diseases are an actual epidemic, with the U.S. Centers for Disease Control and Prevention finally admitting last year that at least 300,000 new infections take place within the United States each year. Over a decade, that means any given American’s chance of contracting could be as high as one in one hundred. Think about that.
We may be more used to hearing the term “Lyme disease” than anyone was used to hearing about “the GRID” or “HIV/AIDS” in the early days of that epidemic, but otherwise, the similarities are striking: Lyme is woefully misunderstood by medical science to this day, having been tremendously underestimated for decades in its prevalence and its effects. As high-profile people from Real Housewives of Beverly Hills‘s Yolonda Foster to singer Avril Lavigne and Ashley Olsen have “come out” about their experiences with Lyme, people are finally becoming aware of the effects it can have–and yet, as with AIDS early on, the CDC is seriously lagging in accepting the reality of it. I never knew before landing in this nebulous medical terrain that a medical condition could be politically controversial, but Lyme disease is just that.
CDC and the Infectious Diseases Society of America (IDSA) are in a fierce battle with the International Lyme and Associated Diseases Society (ILADS) and Lyme patients about the reality of this disease: CDC and IDSA maintain that it is “easy to diagnose, easy to cure,” and absolutely dismiss the persistence of symptoms over time, despite treatment. ILADS contends that both CDC and IDSA are denying the real risk posed by the Lyme epidemic (If this is true, why?) and the organization continues to recommend its own treatment guidelines versus the CDC and IDSA guidelines. While it is tempting to think that the CDC is the absolute authority on medical treatment, my home state of Virginia–one of the greatest Lyme “hotspots” in the world–established legislation in 2013 to protect physicians who treat Lyme patients with antibiotics. While the CDC and IDSA continue to insist that treating Lyme and associated diseases with antibiotics is reckless and does not aid Lyme recovery, after seven months of taking antibiotics and an array of supplements (at great cost), I feel about 90% recovered on most days–following five years, from 2010 through February 2015 of becoming slowly disabled, physically and mentally, with pain that I truly would not wish on my worst enemy. The treatment is working, no question–none.
Early in the AIDS epidemic, the director of the CDC tried to quell public fears by implying that unless a person is a gay man, an IV drug user, or from Haiti, he or she is not at risk of contracting HIV:
“persons who may be considered at increased risk of AIDS include those with symptoms and signs suggestive of AIDS; sexual partners of AIDS patients; sexually active homosexual or bisexual men with multiple partners; Haitian entrants to the United States; present or past abusers of IV drugs; patients with haemophilia; and sexual partners of individuals at increased risk for AIDS.”
CDC was woefully wrong: we now know, of course, that heterosexual women who do not practice safer sex can readily contract HIV, as well.
A couple of weeks ago, the Patient Centered Care Advocacy Group issued a statement alleging that the IDSA has been intentionally misinforming the public about the real dangers of Lyme by “covertly setting government policy on Lyme disease and misinforming the public about the disease for the past decade,” rejecting the experiences of many that Lyme can become a chronic illness, and that unlike HIV tests, which are close to 100% accurate, Lyme antibody tests are dangerously insensitive and inaccurate. This follows a previous similar challenge to the IDSA that caused it to review its guidelines because of serious conflicts of interest.
As someone living with, and sometimes disabled physically and compromised cognitively by this disease, I am desperate for gay men in particular to pay attention to Lyme. I am begging.
With the advent of PrEP and effective medical interventions for HIV, I am truly disturbed that gay men–first, younger generations, but increasingly people my age who lived through the plague of AIDS–increasingly are rejecting the use of condoms and again, ignorantly, feel invulnerable to potential sexually transmitted infections. Well, guess what: although the CDC claims absolutely that Lyme cannot be transmitted sexually, objective scientific research and anecdotes of those whose partners have Lyme, argue otherwise.
Here is my biased, but (please believe me) informed opinion: You do not want this disease. It will change your life for the worse, not only by potentially disabling you at too young an age, but by rendering you an untouchable to many primary care physicians who fear persecution by the medical establishment.
While the jury is out on Lyme disease–except for those of us who live with it and know the reality–I still feel the shockwaves of the AIDS crisis in my DNA, and as my body continues to experience symptoms you, honest to God, would not believe unless you lived them, from what appear to be all-over stretch marks and bizarre rashes that come like clockwork at 4:00 p.m. every day to crippling arthritic pain and inexplicable fatigue–at age 37–I beg the gay community to remember the lesson taught by the early days of the AIDS crisis.
It’s not difficult to use condoms. HIV is treatable today, it’s true, and PrEP may well prevent contracting the virus–but HIV is not the only health risk from promiscuous unprotected sex and today’s cavalier, laissez-faire attitudes are based on false confidence. PrEP has fierce defenders and to the extent it works to prevent new HIV infections, it is truly a godsend. I am not condemning PrEP. But I am condemning the false sense of security that I have witnessed develop among gay men over the past few years with the advent of PrEP.
Let’s say you rely 100% on the CDC–the agency’s word is your gospel despite its failure in the years during which HIV emerged as a threat. Bear in mind that HIV in many cases took a decade or longer to incubate and begin to degrade a person’s health; before then, it was entirely unknown. By simple definition, you can’t know the unknown–so consider what you don’t know, what potential threats you may be exposing yourself to that may not present for a decade or longer, when you protect yourself against HIV and against nothing else.
When I was diagnosed with Lyme in 1997, it wasn’t well understood. The disease was so new that no one had any idea it could be as devastating as it has proven over the years to be: the idea then was that you see a rash, you give an antibiotic for a couple of weeks, and you’re cured. If you’ve seen The Real Housewives of Beverly Hills‘s Yolanda Foster who, even with countless millions of dollars at her disposal, has yet to find a treatment that keeps her from being bedbound; or if you’ve seen Avril Lavigne’s harrowing account of life with Lyme, then you may have some idea of what it’s like. I’ll tell you what it’s like. It’s like living with AIDS.
I had the typical bull’s eye rash and was given 10 days of doxycycline–the standard treatment at that time–and deemed cured. Most likely, I was bitten by a tick I never saw; 13 years later, I found myself in the same sort of situation AIDS victims suddenly found themselves in in the late 70s and early 80s. While the jury is out on whether Lyme disease can be transmitted sexually, unknown emerging diseases could–is it worth the risk? Trust me, it’s not. I am not condemning the use of PrEP as a preventive measure against HIV infection–but use it wisely, in conjunction with physical barriers to all infections, not just one.
I promise you that you truly do not understand the cliche “health is everything” until yours is compromised. I am on an antibiotic regimen that is akin to chemotherapy–and it affects me similarly–in addition to taking up to 30 additional supplements in pill and tincture form that are also used as complementary therapies for full-blown AIDS. You don’t want to live this way: be wary of ticks, and be wary of any object that penetrates your body and transmits fluids, whether it comes in insect, needle, or human form.
The only person who will maintain your own health is you, so use your power wisely and protect yourself.