This article was originally published in three installments on Huffington Post Healthy Living.
My life changed abruptly in April of 2010: blurred vision that I had had on and off since my 20s became 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 such extreme fatigue 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.”
I was born in 1978 with an idiopathic illness that caused severe anemia; throughout early childhood, doctors 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 letters 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 a panic attack.
From working out six days a week to not being able to get out of bed, I was terrified. I finally found a doctor’s office that would accept new patients. As I was heading there via the D.C. 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 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.
I described my symptoms; he was genuinely troubled by them, and I knew this was serious. My new doctor’s first question, unsurprisingly but terrifyingly, was, “Have you been tested for HIV?”
My heart skipped beats; 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? Had fate caught me off guard?
Actually, no. And this is the point of sharing this story — particularly with other 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 transformed from a certain-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 dozens of times, followed by increasingly strong electric shocks that, when applied to my sciatic nerve, caused full body convulsions. This test was to rule out ALS, which doctors said was my worst-case scenario, and eventually I was told I may have multiple sclerosis.
Four MRIs of my brain and spine, EEGs, more EMGs, something called “evoked potentials,” and more tests ultimately concluded… nothing. I may have MS, the neurologist told me, and I may not. But, he finally said, whatever was wrong with me certainly was not in my head — no one would endure these tests if something weren’t really wrong.
Actually, it turns out that I have Lyme disease — and have had it since I was first diagnosed in 1997 at age 18. So all my adult life, it turns out, while I’ve been fearing HIV — as much because of stigma as because of the actual life effects — I’ve had another infectious disease that is much more mysterious to this day; in reality, Lyme today is as misunderstood and medically controversial as HIV was in the early 1980s.
Everyone should be concerned about Lyme, but perhaps especially anyone who is active outdoors, and anyone who is sexually active — and that’s why this matters to gay men. PrEP is a godsend as a means by which to avoid contracting HIV — but that’s all it does. And evidence now suggests that Lyme may be transmittable not only by tick bite, but through sexual contact. I’ll explore this disturbing theory and life with Lyme in the second part of this article.
Last February I finally got a true medical diagnosis for the cause of some of my health problems: Meniere’s disease, which an ENT specialist said caused the characteristic hearing loss and sudden and totally disabling attacks of vertigo, which involved suddenly vomiting all over a friend during a (sober) Sunday brunch before being carried home, as I couldn’t walk unassisted. 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.
When I was diagnosed with Lyme in 1997, 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 — in my 30s), 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 percent of the time live the lifestyle of someone in his 70s.
As discussed in the first part of this story, I’ve lived in fear of HIV all my life as a gay man who came of age in the 1990s, when an HIV diagnosis was a death sentence. Ironically, I am essentially living now with AIDS — not HIV, but full-blown AIDS, without having AIDS at all. Lyme and associated diseases are a true modern-day 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.
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 vs. 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 require doctors to disclose to patients whose Lyme disease blood tests are returned negative that they may still have been infected with the disease. This is due to the tests’ relatively low sensitivity. 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 percent 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; yet, CDC insists that it doesn’t.
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. (Source)
CDC was woefully wrong: We now know, of course, that heterosexual women who do not practice safer sex can readily contract HIV, as well. And despite then-existing evidence that people from Haiti were living with AIDS, it certainly was shortsighted at best and truly counterscientific to imply that any disease exists only within national boundaries. It’s a hard pill for many first-world countries to swallow, but infectious diseases do not respect our borders. Even those with the financial resources of, say, Donald Trump, despite any efforts he may make, will never build a wall great enough to keep a disease spread by insects and other vectors out of any country. Yet despite this reality, the United States is not the only nation that has nonsensically and inexplicably politicized Lyme and associated diseases:
This phenomenon has become a bizarre case of regulators throughout the world ignoring countless patients’ obvious physical symptoms, taking the word of faulty laboratory tests over the word of those whose lives have suddenly come to a halt. In so many cases, as was my experience, the majority of physicians, from general practitioners to specialists, run tests, look at numbers and images, and say “actually, despite how you think you feel, you are healthier than many of my patients except that you obviously need to be treated for anxiety.” I can’t tell you how many times I was told I’m thinner than most and younger than many, and therefore should be living a more vital and vibrant lifestyle — when I protested and said that things such as a leg that goes in and out of use, double vision, severe joint pain, peripheral neuritis and cluster headaches had paralyzed me and, yes, made me wish I wouldn’t wake up the next morning, several doctors recommended counseling as a means by which to treat my physical symptoms. A few, who I respect for their honesty, told me that they agree something obviously is wrong, but since it can’t be detected by tests, the only medically appropriate response is to wait and see what develops over the coming years. I was told by the one neurologist who was extraordinarily respectful at the Washington Hospital Center that if I lose the use of a limb for longer than one week, experience double vision for longer than one week, or lose control of my bowels, I should call back immediately; anything less would likely result in just more expensive tests that would yield no answers.
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 percent 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.
I want to make it clear that when comparing Lyme disease to AIDS here, it is to underscore the severity of the disease and to point out the unspoken reality that the regulation and communication of this disease is affected by politics of uncertain foundation. I am in no way suggesting that Lyme or associated bacteria have anything at all to do with the HIV virus: There is no relation. Nor am I fearmongering and suggesting that we will suddenly see a mass die-off as we did with AIDS victims.
After my previous installment was published, I received an important note from Dr. Raphael Stricker, a past president of the International Lyme and Associated Diseases Society, who in one statement summarized both the severity of Lyme disease and the difference between Lyme and AIDS: “As I often tell patients, Lyme disease usually does not kill you the way AIDS does, but it often makes you wish you were dead.”
That’s no exaggeration. The physical pain, mental confusion, and medical quandries related to Lyme make many patients feel that life is simply too challenging and confused to want to continue. I have gone to sleep on countless nights praying that I wouldn’t have to wake up to continue the battle. So again, Lyme is not AIDS, but Lyme can be as devastating on the body as AIDS is — up to the point of death. Ask a patient whose life has been devastated by Lyme, and you may be surprised to hear her tell you that AIDS is a more compassionate disease in that the suffering eventually ends. Lyme goes on and on, and the symptoms can vary so much from one day to another that it can be maddening and seem unreal even to the person experiencing them. Watch musical artist Avril Lavigne break down — so bravely, at the risk of ridicule (trust me on that) even from the medical establishment — for honestly discussing how severely Lyme has affected her life. I absolutely do not want to sensationalize the effects of this disease; in this video, you can see the real emotional toll this disease has on people. What you don’t see is the physical pain, the fatigue (of an inexplicable level unless, maybe, you’ve had mononucleosis — it’s close to that), the ‘brain fog’ that can leave a person in a state of Alzheimer’s-like confusion. Go to 0:45 of the video and listen as her voice breaks: This is a strong and courageous person who, if she had cancer, would be allowed and encouraged to cry it out. With Lyme, patients are compelled to fight through the tears and articulate their experiences, lest people call us “dramatic” or crazy.
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, because of a new medical revolution called PrEP that has been a godsend for many, but which also can lend a false sense of invulnerability to non-HIV diseases. In the next and final installment of this article, I will explain why.
Note: This is the third and final entry in a series about how my life has been devastated by Lyme disease.
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 feeling invulnerable to potential sexually transmitted infections. Although the CDC claims absolutely that Lyme disease cannot be transmitted sexually, objective scientific research and anecdotes of those whose partners have Lyme argue otherwise.
You do not want Lyme 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 at this time fear persecution by the medical establishment.
While the jury is out on many facets of 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 few people would believe unless they lived them, from bartonella rashes that masquerade as all-over stretch marks (I have scores all over my body, and have never had a waistline greater than 31″) and bizarre rashes that come like clockwork at 4 p.m. every day to crippling arthritic pain and inexplicable fatigue — at age 37 — I beg the gay community to remember a lesson taught by the early days of the AIDS crisis: Life-changing, devastating health problems can come seemingly out of the blue with no warning. We were lucky to survive the AIDS plague of the 1980s and ’90s. We have no excuse to be cavalier about our health in its aftermath.
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 unprotected sex and the increasingly cavalier, laissez-faire attitudes toward sex in the gay community 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 desperately cautioning against the false sense of security that I have witnessed develop among gay men over the past few years with the advent of PrEP. More and more, gay men are rejecting condom use because they feel invulnerable to HIV as a result of PrEP use. HIV is an enemy, but it’s not the only enemy and — believe it or not — Lyme disease is a similarly potent and dangerous one.
Let’s say you rely 100 percent on the CDC for information — the federal agency’s word is your gospel despite its failure to properly caution the public in the years during which HIV emerged as a threat, claiming that only certain marginalized groups were at risk of contracting the disease. 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. This has been my experience with Lyme: five-plus years of investigations for ALS, MS, and psychiatric disorders — “psychosomatic” causes being suggested by physicians even despite the obvious disfiguration of my skin by all sorts of rashes and scars. 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, the disease 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. And yet, people are so eager to ignore it because it’s so rarely discussed and because the CDC and IDSA continue to downplay the disease’s increasingly devastating effects. While HIV tests are nearly 100 percent accurate, the two standard tests for Lyme — Western blot and ELISA — are far less sensitive and often return false negatives — and when that happens, in most cases, doctors cannot even take preventive measures to treat the disease unless they see the characteristic bull’s-eye rash, which is only seen in between 40 percent – 80 percent of patients (estimates vary based upon source, with CDC citing the higher percentage).
I had the typical bull’s eye rash in 1997 and was given 10 days of doxycycline — the standard treatment at that time — and I was proclaimed cured. Thirteen years later, I found myself in the same sort of situation AIDS victims suddenly found themselves in in the late ’70s and early ’80s — my body and mind failing me, with doctors alternately labeling me with such things as “probable multiple sclerosis” and “psychogenic disorders.” 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. Please.
You cannot comprehend the cliché “health is everything” until yours is compromised. I am on an antibiotic regimen that is surprisingly similar 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.