Doctors Who Treat Chronic and Rare Illnesses: Quacks or Heroes?

Doctors Who Treat Chronic and Rare Illnesses: Quacks or Heroes?
This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.

Many readers of my writing know that I have spent the better part of a decade navigating a gauntlet of medical practitioners who are so “inside the box” of conventional practice, over a dozen specialists sent me into a state of alarm and then pulled the rug out from under me—over and over, like Lucy convincing Charlie Brown to kick at the football and then knocking him on his rear. This essay is a long one—longer than the Huffington Post prefers for blog posts (a crime of which I am too often guilty)—and may be too much for casual, healthy readers. I’m writing it for people with chronic illnesses, diagnosed or undiagnosed. It details years of my life that were spent yo-yoing from bleak hopelessness to glimmers of hope to hellish, excruciating pain, and up and down and so on. In my case, and in the cases of hundreds of people who have contacted me and with whom I’ve met in person by now, most of the hopelessness came from doctors, and most of the hope came from supportive family, colleagues and friends who kept me sane even when I wasn’t.

In 2010, I experienced a sudden onset of severe nerve pain and numbness in my feet and legs that landed me in bed for several days, after which I had to go to a conference in Seattle. There, I somehow ended up mentioning these alarming symptoms to someone who turned out to be a doctor. “I don’t want to alarm you,” he said, alarming me, “but these are serious symptoms. It could be multiple sclerosis. You should see a doctor as soon as you get back home.”

I had only recently moved into Washington, D.C. from the Northern Virginia suburbs, so it took me the better part of a month to find a doctor’s office that would accept a new patient. By the time I got there, other life-affecting symptoms had presented themselves. The most alarming happened on my way to the doctor’s office. I mostly walk where I need to go, when possible, and so I am not as familiar with the Washington, D.C. Metrorail system as I should be. Nevertheless, my office was a block and a half from the Metro station—and I limped at least eight blocks trying to find it. I simply couldn’t recall where it was. When I found the Dupont Circle station, the escalator was broken. As I began to walk down the stairs, my left leg started to “bounce”—to kick back reflexively—with every step. Within 10 to 15 steps, the leg simply died. It hung limp and useless. You can see the escalator below. What’s not pictured are the endless streams of people that travel the Metro at all hours, and by the time I was partway down the staircase, there was no way to fight the sea of people back up to the top. Certainly not on one leg. So instead I clutched the railing for my life and hopped down the steps on one foot. At age 30, I had been full of life and energy, obsessively working out four to six days a week, eating as healthfully as possible. By age 32, my body and mind were failing me. What happened?

<p>DuPont Circle North D.C. Metro escalator. Try hopping down these steps on one foot. It’s not fun.</p>

DuPont Circle North D.C. Metro escalator. Try hopping down these steps on one foot. It’s not fun.

Alexander Barth 2008 via Wikipedia

Doctor One: The General Practitioner

The doctor was alarmed when I told him what was happening. He did a basic observational neurological screening and told me that my strength was good and my muscles were not rigid—that was good. He listened to me, looked carefully, and asked when I had last been tested for HIV.

As I’ve discussed at length, growing up gay in the 1980s and 90s, HIV and AIDS was the Boogie Man of my life that haunted me everywhere I went. During my youth, gay men seemed almost fated to acquire the then-deadly illness. My heart practically stopped when the doctor asked this. I had been tested for HIV, either by a doctor or with a home test, at least every six months since age 18 or 19. But was it possible that the tests had missed the infection? Maybe I contracted a strain that wouldn’t show up on a standard test—I recalled that all Home Access tests say HIV 1...what about 2? Is 2 a thing? I went into an absolute panic.

The doctor tested me for HIV, and for a broad array of other problems. He did complete blood counts, hormone tests, other infectious diseases—sexually transmitted diseases, I should say. He brought me back into the office and delivered the news—all was well. And so onto the next test: MRIs of the brain and spine and a referral to a neurologist. “We need to rule out anything serious like a brain rumor or multiple sclerosis, or ALS.”

Doctor Two: The Washingtonian Top Neurologist

The K Street neurologist to whom my new doctor referred me, like my new primary-care doctor, was concerned by my symptoms. He performed essentially the same observational screening test that the general-practice doctor did, including the dreaded plantar screening one that involves scraping along the bottom of the foot and causing it to involuntarily curl up.

He explained to me the differences between disorders such as multiple sclerosis and ALS—MS involves a process known as demyelination, in which the fatty coating that insulates nerve cells chips off in pieces causing “short circuits” here and there. The cause is unknown. ALS is different in that it causes muscles to waste away because they are “malnourished” in a sense.

As part of the initial consultation, the neurologist asked a question that, were my life fiction, would be considered “telegraphing” a future plot twist. Along with a variety of health screening questions, he asked if I had ever had Lyme disease. Yes, I told him. He looked surprised.

“When?” he asked.

“Oh...I guess I was 18 or 19,” I said. “I don’t really remember it. My mother keeps telling me that I had Lyme because she says she has read it can come back...”

“It can’t ‘come back,’” he snapped.

“I know,” I said. “But that’s why she keeps reminding me about it.”

“How old are you now?” he asked.

“Thirty two,” I said.

“And you were how old when you had Lyme disease?”

“I had just started college. Eighteen maybe.”

“That was a long time ago,” he said.

“I know.”

“So why do you think you have Lyme disease now?”

“I...don’t?” The exchange stood out at bizarre even in the moment. I felt like he was accusing me of lying to him.

“Oh,” he said.

“You asked me if I ever had Lyme disease. I was answering your question.”

“Oh,” he said. “OK. Well, it’s good that you got treatment. So we know you don’t have Lyme disease.” And he moved through the rest of the questionnaire.

He then ordered a test called an electromyograph, or EMG. I’d been afraid of needles all my life, and unable to resist the lure of a World Wide Web’s worth of information, I read that the test involves repeated pricks with needles and may cause “some mild discomfort.” OK, I thought, my body was doing some weird was worth some mild discomfort to find out what was wrong. Well, this EMG test turned out to be something that must have inspired the Ramsay Bolton character on Game of Thrones: The first half of the test involved sticking long, thin needles into my right arm and both of my legs 30-40 times. Most painful were the soles of the feet, into which a couple inches of needle were stuck, and then the technician made me flex my foot into the needle to record electrical activity in the muscle. The second half was less painful, involving electrical shocks in my arm and legs, each one of which felt like hitting a funny bone in a different place. “I’m sorry,” the second technician, who administered this part of the test, said to me, “but we have to turn up the power for the sciatic nerve.” As I lay face down on the table, grasping at the edge, she glued electrodes to my thigh and ankle and zapped me, causing my whole body to convulse like a fish on the deck of a boat.

“We’re going to have to do it again. I didn’t get a good reading. Please try to be still.” Argh.

I left the neurology center bewildered that this is the state of medical science today. At least I’d have answers...

The answer answer. The neurologist told me that my brain MRIs were normal, as were my cervical and thoracic spine MRIs. The lumbar (lower back) showed mild disc bulging in L5-S1, which he said could cause mild nerve impingement, but that it wasn’t too uncommon, was a kind of physical, not neurodegenerative damage, and something for which he would strongly advise against any kind of intervention at my age, since surgery would do more harm than good. As for the EMGs, those were normal. As for my health, he said, he had reviewed my blood work and vitals, and I appeared to be the picture of health. Congratulations. I asked what he thought might be going on, then.

He asked if my life is stressful at all. Yes, I told him. He said everyone’s life in this city is stressful. This, I can attest, is true. He asked if I have a therapist., I said. I asked if he thought my health issues were psychological. He told me he can’t diagnose psychological issues, but a few things could be going on.

First, he said, he could order more neurological tests—mainly a lumbar puncture (also called a spinal tap) and a nerve biopsy—but he said these would be uncomfortable and expensive, and are probably not going to be useful given that all other tests are normal. So he advised against that but said it’s up to me.

Next, he said, anxiety can manifest physically. He asked when my last “real” vacation was. I told him it had been years before. He told me (I’ll never forget.), “here’s what I want you to do. Take a nice, long beach vacation. That’s my honest opinion. I’d be surprised if all your problems didn’t go away by the time you get back. And if they don’t, I think you should find a good therapist or counselor.”

After the shock, I asked, “So, do you think this is all in my head?” Not exactly, he said, but stress can cause physical health problems—particularly neurological ones. “I’m not calling you crazy,” he said—or something like that. That’s what I heard.

Finally, he said, “it’s possible—though I don’t think it’s the case and I hope it isn’t—that you do have a neurodegenerative disease and it just isn’t showing up on the tests yet. Oftentimes when we see an MS patient in his 20s or early 30s, your age, we don’t see any lesions on the MRIs yet and they start to show up later on as the disease progresses. But I hope that doesn’t happen. And if it does happen, if it gets worse in a few years, don’t call me. I plan to be retired and taking my own nice, long beach vacation,” he said with a laugh. With that, I was dismissed.

Doctor Three: The Psychologist

I was offended by what the neurologist had told me—and yet, I told myself to get over myself. He’s a medical expert, I told myself. You’re still young, I told myself, too young to be limited by these problems. If your physical problems could possibly be improved by a therapist, then see a therapist. Don’t be proud.

In all honesty, I was also in a severe depression by now. (I’d been mostly depressed from adolescence, so this was my norm.) I also had had panic attacks in social situations since my second year of graduate school in my mid-20s—so it was probably time to see a shrink. Even had these health problems not happened, within a couple of months I had experienced a traumatic event that required intervention. So I found a psychologist through my insurance company. He had just received his license to practice, he told me. He was excited. I was in a state of alarm. He kept telling me why life is exciting and good. That wasn’t something I wanted to hear. By the end of the session, I had cried my eyes out and he told me I had to come back the next day after work—he needed to see me again to assess whether I needed to be referred to in-patient treatment because of the severity of my depression.

I returned to his office the next day at 5:00, our scheduled appointment time. I waited...and waited. After probably a half hour, the receptionist called my name. “There’s been a...mix-up,” she said. “I apologize. The doctor is on the phone. He wants to talk to you.” She handed me the phone through the glass window.

“Hey man,” my new psychologist said through the receiver. “I’m so sorry. I had to roll into Baltimore and I totally forgot our appointment. Can we do tomorrow?” I reminded him I had to leave for a business trip tomorrow morning. “Oh, right,” he said. “Next week?”

I never saw him again.

Doctor Four: The Psychiatrist

I had reached crisis state within a few more months, and I desperately called mental health workers trying to get an appointment. Several told me they don’t take my insurance. One actually told me she doesn’t take my insurance and had requested several times for her name to be removed, and asked me to call my insurance back and request that they remove her. Finally, a psychiatrist called me back and essentially talked me off the ledge via telephone. We made an appointment. I’ve seen her every month for almost seven years now.

I told my new shrink in 2010 that I had been on Zoloft for a brief period earlier in my life. In my early 20s, I had had trouble catching my breath even while inactive. It finally got bad enough for me to see a doctor. The doctor asked me if my then-job was stressful. Yes, I said, aren’t they all? She put me on Zoloft and said the breathing trouble was due to anxiety. She didnt even check my breathing. At the time, I was young and intimidated by authorities, so I didn’t question her about it. I just took the drug. Within a few months, I realized that I was emotionally numb, not reacting to anything positively or negatively, and I weaned myself off of it and vowed never to take it again.

My new psychiatrist agreed that she prefers cognitive-behavioral therapy to pharmaceutical Band-Aids. And then she prescribed Zoloft, Wellbutrin, and Klonopin, which I took for years.

Over the next couple of years, with the help of my new psychiatrist, I was able to balance my emotional world (more or less), and to reasonably, I think, confront the new physical ailments that presented themselves.

I stayed away from doctors. What was the point? I had exhausted every possible test, hadn’t I? What could be left after they bring out the Medieval torture contraptions?

And yet...and yet, my body was defecting. I had fallen several times in my office...I was just walking and would kind of veer to the right and into a wall or a cabinet, bewildered and confused. I had episodes I thought might be seizures, waves of blankness—sometimes a pleasant, dreamlike feeling—come over me for seconds at a time as I was seated in front of my computer. A couple of times I couldn’t find my psychiatrist's office, which I had walked to every month, and spent 10 to 15 minutes walking back and forth, block to block, passing it all the while without knowing it. She attributed the confusion to a panic attack. Driving to my parents’ house during this period, I realized once that I had zoned out while driving and now had no idea where I was. How long ago had my mind wandered? My heart raced. I looked around and didn’t recognize where I was—it could have been anywhere in Virginia. I pulled over to the shoulder and breathed myself calm. Should I call my father and tell him I’m lost? Even after all the doctors, doing this would be an admission to him and to me that my mind was failing that I couldn’t quite face yet. After a few minutes, I had regained control enough to realize I could drive—somewhere—and probably gain my bearings. When I got to the corner, the street sign triggered a memory and I knew where I was: A block from my parents’ house. In a neighborhood in which I had lived for over a decade.

And then there was the pain. Nerve pain in my legs. Pain in all my joints, my arms, my shoulders, especially my elbows. I was still doing my best to stay in shape at the time, and anytime I did any kind of arm exercises that involved bending the elbow, it felt like there were actual, literal razor blades inside of my arms. The pain was excruciating. I now know I wasn’t entirely in my right mind because I persisted even as my body told me to stop.

Doctor Five: The Second Neurologist

I finally went to a second neurologist, at my psychiatrist’s urging, and upon referral from the general practitioner I had seen a couple of years before. He ordered a new set of MRIs. This one was at Washington Hospital Center. An intake nurse spent four hours taking down every memory I could recall about health issues. I absolutely could not believe her thoroughness or her compassion. She then took me to the doctor, who reviewed her written notes in front of me and asking me about specific aspects, and then examined me. That metal-thing-on-the-foot test again. Bah.

A few aspects of this appointment were notable:

  • The doctor asked me to look at an object in the room with my right eye closed, then with the left closed. He asked if there was any difference in the color value. Yes, I said because there was. He asked why I looked at the exit sign. I said because it was red. He asked if I’ve been reading about MS on the Internet. Well, yes, I said. He laughed. “I knew that because you looked at the only red thing in the room, so you obviously know what we’re looking for.” I didn’t, actually, but it turns out that this color difference is most easily noticeable with red-colored things. Anyway, he said that a lot of doctors hate their patients using “Doctor Google” to self-diagnose, but his opinion is that this is reality and doctors need to expect their patients now to arrive at the office armed with more information than ever before—both accurate and inaccurate. Still, I suspected he suspected that the color difference I saw may have been a placebo effect. That is until he looked into my eyes and quickly scrawled down a note. He said that my right optic nerve head looked “blurry,” but that he couldn’t be sure and was going to refer to me to a neuro-ophthalmologist—a doctor who deals exclusively with nerves of the eye (!). What does that mean? I asked. He said he didn’t want to alarm me—uh oh—and it could be nothing, but oftentimes that problem indicates a neuro-degenerative disease.
  • He reviewed my paperwork again and saw that I had had blood tests for both syphilis and Lyme disease—that’s good, he said, because he would order those tests had I not been tested for them. He was surprised that my doctor had ordered those tests. My doctor didn’t order those tests, though. I did. I paid out of pocket to order my own blood tests through a private lab over the past couple of years because I didn’t want to deal with doctors who would imply I was a hypochrondriac or a crazy person. Instead, I admitted to myself I might be either and dealt with the reality privately, as I privately ordered tests for various potential health issues I had read about. My mother insisted I be tested for Lyme, and so I was. Syphilis, I had read, could progress untreated with similar symptoms, and so I tested for that. I also ordered ANA tests to rule out autoimmune diseases, and continued to test for HIV.
  • He noted that my knee-jerk reflex—the most iconic neurological screening, in which the knee is whacked with a rubber mallet—was abnormally brisk. That didn’t sound too bad. Brisk, as in a brisk walk? No biggie. I later found out from reading the neuro-opthalmologist referral that I had “abnormally brisk knee-jerk reflexes with clonus 4/5+.” Doctor Google told me that this was a much bigger potential problem than I had thought. Like the optic nerve, it indicated a neurodegenerative disease. His note said the optic nerve issue was “worrisome.” I possibly shouldn’t have read the note—but hey, it’s my body, right? (I should have read the note.)
  • The neurologist finally asked if I had brought my new MRI report with me. Yes, I said, and gave it to him. He was alarmed and didn’t try to hide it. He said the report said I had a signal flare on my cervical spine (a potential sign of MS or something similar). Yes, I said, I had read that. He asked if I had the disc of images. Yes. I handed it to him. He excused himself and disappeared for 15 or 20 minutes and then came back into the office fuming. “These are no good. They’re terrible quality. The radiologist never should have written a report based on these images. You need new ones. I will order them. You will not be charged for them.” I knew he was right because I had looked at the images myself—a serious no-no that I dared not mention—and compared them with MRI images online. At this point, all signs pointed to multiple sclerosis. I was less emotional than any doctor had been about it because I had had years to accept that something was wrong, and the symptoms seemed most like MS. I just wanted an explanation. The MRI images were too blurry to discern. Evidently when the MRI technician asked me not to breathe during the cervical scan, I made the, er, fatal mistake of breathing.
  • And finally finally, the neurologist told me that he wanted to order more lab tests. The most important one: an EMG. “No,” I told him. I shook my head aggressively. Nope. Not gonna do that again. No more Medieval torture. He said it’s really important. I said OK. It’s incredible what a person will do just to get some answers. In addition to the EMG, he ordered an EEG and visual and auditory evoked potentials. These tests involved little electrodes being glued all over my head and strobe lights being flashed in my eyes for 10 minutes, or so it seemed. The cheery technician told me that a lot of patients have normal results and hopefully I will, too, and maybe it’s all just stress, and maybe I should take a long vacation on the beach. Where had I heard that before?

Doctor Six: The Neuro-ophthalmologist

The neuro-opthalmologist was straightforward. I waited in a standing-room-only waiting room until my name was called. He came out and put eye drops that felt like acid into both of my eyes, and then I waited another 15 minutes until my name was called. I was passed down along a seemingly endless array of machines into which I peered, asked to differentiate between colors and patterns and look for hidden numbers among them, and then finally the doctor came back and looked into my eyeballs. He asked if I ever have double vision. Sometimes, I said, kind of, I think. “You don’t know?” I shook my head. “Don’t move,” he said. “Well,” I said. “Sometimes...yes, it’s like double vision, but it’s kind of blurry. It’s hard to explain. Like a double exposure picture.”

“I know,” he said in a thick New York accent, speaking like a machine gun. Basically he spoke like Judge Judy if Judge Judy were a male opthalmologist with marathon awards covering his office wall. “How many fingers? Don’t move your head.” I looked. I hesitated. “How many fingers.”

“OK,” I said with a sigh I couldn’t help. “I can tell you are holding up one hand. I can tell that you are holding up two fingers. But I see ghost-y duplicate fingers. So I’m not sure what to tell you. I know you’ve got two fingers up. I can’t mistake it for four fingers. But it’s blurry.” He didn’t seem to like that answer but kind of shrugged it off.

“It can be hard,” he said. “You have a blurry right optic disc margin,” he said. “That’s causing the visual disruption. How old are you?” I told him my age, 32 or 33 at the time. “You have cataracts. Both eyes. But you’re too young for cataracts. So they must be congenital.”

“OK,” he said. “The optic nerve is a concern. I need to see you next year. Schedule an appointment at the front desk. Very nice to meet you.” He shook my hand and left.

Doctor Seven: The Third Neurologist

Doctor five wasn’t available for the follow-up consultation, so he sent his partner—who turned out to be equally patient (even more so, actually), and a wonderful person, actually. He reviewed all of my paperwork, and spent hours and hours with me. I once again could not believe it—I’d never had a doctor like this.

In the end, he told me, the tests found some anomalies. The eye issues. The reflexes. All the symptoms. Also, he said rather nochalantly, the new MRIs revealed that I have cervical spondylosis—arthritis in my cervical spine. That’s not related to any neurodegenerative disease, though. I asked if it’s normal for a person to have cervical arthritis in his early 30s. “Not at all,” he said. “But there’s nothing we can do about that. It’s probably hereditary.”

He said—I’m paraphrasing here—that something weird was happening with my body, but that the tests did not add up to anything diagnosable.

He said—and I’m not paraphrasing here—”you’re not crazy.” He explained what I already had learned the hard way, that the medical tests that exist today are not the end of the road as far as medical science goes: Everything that is known is not everything there is to know. And he said that he agreed with the first neurologist—oftentimes, diseases like multiple sclerosis are slow to present evidence that shows up on an MRI, and it may well be that I have MS and it just isn’t showing up on labs yet. Or I may have something else that doctors don’t even understand yet.

The last comment was so important to me. All I wanted was an explanation. But “we just don’t know” without an additional “you’re insane” was surprisingly as satisfying as an answer. Unless my memory is tricking me, which does happen, I cried when he told me this, and I explained that doctors had made me doubt my sanity on top of all the physical problems, and all I wanted by the time I had gotten to him was a way out.

He called me a “young man,” and I realized that I was still young. He told me that when he was a young doctor, he knew everything there was to know. And with every passing year, he learned through mistake after cocky mistake how little he knew. He said the greatest lesson of his career as a doctor was this: Every patient that walks through the door knows more about what’s happening in his or her body than any laboratory test will ever show, and even if he can’t see it, it’s his job to listen to them and believe them. Very few patients keep coming back to doctors for years unless they are desperate for help.

Still, he couldn’t offer any help that He said, unlike the first neurologist, that I should come back if anything serious happens, and that he wanted to see me in a year for a follow-up appointment. He said if any of the following happens, I should call the office immediately:

  • Double vision that lasts for at least a week without interruption.
  • Paralysis or total numbness of a limb that lasts for at least a week without interruption.
  • Incontinence.

This was in October of 2012. In November, I started getting “eyeball attacks” that either, I decided, were the result of insanity or of demonic possession. They came on about every other day, either at 3:00 p.m or 7:00 p.m. with a slow throbbing, and by the time I realized that my eye was hurting, the pain escalated to what felt like someone shoving a live electrical wire into and out of my right eyeball. At the same time, my right nostril would pour mucus like a tap, and I would run around wherever I was—it happened in my office, at home, and even during Thanksgiving dinner—involuntarily, to escape the pain. Nothing helped the pain. It always lasted 45 to 90 minutes and then gradually faded away, leaving me feeling stunned and exhausted. I thought it might be some kind of seizure until I found the description of cluster headaches online. I called the neurology office and told the nurse practitioner what was happening. “That’s not trigeminal neuralgia,” she said. “Um. OK,” I said. “I didn’t say it is. But the doctor told me to call if anything serious happens.”

“I’m sorry,” she said. “It sounds awful. But it doesn’t sound like it’s related to a neurological disease, so I’m not sure we can help you. Have you tried taking aspirin?”

When I went back to the neurologist a year later, he immediately diagnosed this as a cluster headache and told me that the condition is possibly the worst pain a human being could feel, according to studies, and that unfortunately because of how quickly they come on, not much could be done to help the pain. He also said that they usually occur during seasonal transitions, and that it’s a chronic condition that comes and goes and usually lasts for years or for a lifetime. (He told me what I had already found online a year prior, but I couldn’t mention that. I also didn’t mention when he said not much could be done for the pain that I’d read psilocybin mushrooms and LSD had been proven to interrupt cluster headaches—I hadn’t tried it, but I certainly would if they returned.) He said he wished he had better news, but that I should expect the cluster headaches to return. Five years later, I’m still knocking on wood that these nightmarish events so far only ever happened during November of 2012, contrary to seemingly everyone else’s experiences.

Below is a video of someone experiencing a cluster headache. If you have never felt this pain, you are forgiven for thinking this person may be “acting” melodramatically. The pain has been described by some neurologists and pain specialists as potentially the worst a human being can feel—yes, even worse than childbirth. (I’ll never know. All I know is that it’s the worst I’ve ever felt.) Many doctors would be satisfied with saying, “I’m sorry, but you’ll have to live with it.” They’re called “suicide headaches” for a reason—many patients can’t live with it.

Time Passes

I more or less became accustomed again to being a medical anomaly. I learned, because I had no other viable choice, to live with pain. Checking in monthly with my psychiatrist, an MD, kept me sane. I can say this for sure: cognitive-behavioral therapy works, particularly when a patient is able to develop a trusting relationship with a competent and patient doctor. Eventually, after years, my psychiatrist began to tell me that this was not “all in my head,” and that any anxiety and depression problems I had clearly were not the root causes of most of my severe physical problems. That alone saved my sanity. When your body fails you physically and multiple doctors suggest that your body is actually fine but your mind has betrayed you, well, that becomes a psychological problem of its own that has to be undone. I had to learn to trust my own body’s self-reporting.

Strange health problems came and went for years. A new one appeared a couple of years ago that knocked me for such a loop—in real terms—that I could not ignore it again.

As I was getting ready for work one morning, checking e-mails on my laptop, I got a dizzy spell. This was “normal” for me. But this time it didn’t pass; it intensified. Within a couple of minutes, the room appeared to be spinning as it might in a cartoon, I felt as if I was falling endlessly, I literally had no sense of gravity and couldn’t tell up from down and therefore could not walk, and I was spewing vomit like a fountain. I thought it would pass. After who knows how long, 10 or 20 minutes maybe, I managed to crawl into the bathroom to vomit into the toilet, and then eventually into the shower. My body felt like it was going to burst into flames. I was fully clothed and turned the shower on and cradled myself. I felt certain that I might die there, and I didn’t dare strip naked because I didn’t want to be found naked when I was found dead. I turned on the water to cool down, but mainly because I figured they’d find me sooner if the water was running.

It was hours before I managed to crawl back to bed and pass out. I woke up in a daze to find messages from worried coworkers. I told them I thought I had food poisoning. Nothing like this had ever happened to me before. Back to Doctor Number One. Guess what? MRIs, this time to rule out an acoustic tumor. (I think I failed to mention I have also had inexplicable seasonal hearing loss and tinnitus in my left ear since my 20s.) There was no tumor. But there was a referral to...

Doctor Eight: The Ear, Nose & Throat Specialist

Doctor eight is kind of a lie, first of all, I should confess. In the intervening years, I also had been referred to an allergist (who did not help, but who gave me a neti pot), a rheumatologist (who did not help, but who looked at my hand—one of the few areas with which I’d had no functional problems—for a very long time and diagnosed Dupuytren’s contracture), a retinal specialist who injected dye into my eyeball veins, and probably other doctors who told me there’s nothing wrong with me.

But finally, after the vertigo attacks, I landed in an ear, nose and throat (ENT) specialist’s office. Here we go again. I sat in a small booth that reminded me of the Catholic confessionals I’ve always seen on TV and in movies. I clicked a little button every time I heard a faint beep in my ears, and probably sometimes during long silences when I wasn’t sure if I imagined the beep or not. Then I waited for the doctor.

Finally, the doctor came in to tell me nothing was wrong with me—except he didn’t. He showed me a printout of the hearing test and said he has unfortunate news: my audiogram showed a distinct pattern of hearing loss associated with Meniere’s disease, and adding that to the vertigo and tinnitus, he diagnosed me with it. It was, honestly, good news as far as I was concerned.

Look, reality is reality. I had lived with moderate, and then significant, hearing loss since my early 20s. I couldn’t deny it. My grandmother used to think I was trying to make her feel better by pretending I couldn’t hear, either—no, I just couldn’t hear. So a diagnosis, after all I had been through, of anything was reassuring. It meant I wasn’t imagining that I can’t hear our of my left ear anymore. Which, believe it or not, is what the majority of doctors suggested over a course of five years.

<p>An audiogram showing characteristic hearing loss among Meniere’s disease patients.</p>

An audiogram showing characteristic hearing loss among Meniere’s disease patients.

Doctor Zero: The Family Doctor From My Youth

Through the inexplicable workings of the universe, as I was waiting to see the ENT specialist, I received several emails from my mother that were urgent, urgent, urgent!!! (This is not uncommon, but the contents of these messages was.) She had gone through her carefully maintained filing cabinets and found a photocopy she had made of a prescription I was given in 1997 by “Doctor Zero”—for Lyme disease. It was 100 milligrams of doxycycline, twice a day for 10 days. The scan was one email. The next was a link to treatment protocols, which suggested that I may have been under-treated. And the next was a lecture about needing to get tested for Lyme disease.

But that was silly. I was tested for Lyme disease. I ordered the test myself. (What I didn’t know.)

Anyway, my mother’s emails provoked me to read more about Lyme, and the more I read, the more confused I became. I had also watched Yolanda Hadid (then Yolanda Foster) on the Real Housewives of Beverly Hills go from being an active lemon-cleanse-drinking health nut to an incapacitated mystery patient (ultimately diagnosed with Lyme disease) who happened to have all the same symptoms I did, and a friend of mine from graduate school who went on to become a nurse read my lamentations on Facebook and urged me to see a Lyme disease specialist because Lyme is endemic to the Washington, D.C. area.

Doctor Nine: The Lyme Specialist

I didn’t have to look far this time. Someone I know in Northern Virginia told me that “literally half my office has Lyme disease, or their kids do,” and many of them went to the same doctor. So I went to that doctor. That doctor is different. From my first visit, she was interested in knowing every detail of my symptoms, about the medical gauntlet I had run, and she ordered more blood tests than I even expected a rheumatologist to run. She tested things I’d never heard of in my research. One of those tests, the C4a complement—which likely no general practitioner or any of the specialists whom I’d seen ever would have ordered—was “off the charts” high, registering just under 20,000 on a scale of 0 - 2,830 being considered normal. This test is a measure of general inflammation, and that it was so high was useful as evidence that this was not “all in my head.” I need that reassurance at that time.

When I wrote about my experiences with Lyme disease, I heard from countless people whose diagnostic journeys closely reflect my own—even though I think of my experiences as so unlikely, so unimaginable.

I learned at a medical conference last fall about mast cells in the context of Lyme disease. Mast cells are a kind of white blood cell, which serve as a primary aspect of the body’s immune system. Specifically, mast cells are a kind of myeloid cell found in the bone marrow and other soft tissues. Mast cells are granulated, which means they contain tiny components, and in the presence of an infectious or other antagonistic agent, they degranulate, or break apart and release tiny packets of chemicals. Histamine, one of these chemicals, induces inflammation. Most people are probably aware that taking antihistamines such as Benadryl, Claritin, Allegra, etc. reduces the symptoms of seasonal, food and other allergies. These drugs work by stabilizing mast cells, preventing them from breaking apart and flooding the body with chemicals that cause inflammation.

A genetic disorder, considered rare, called mastocytosis causes affected people to produce too many mast cells, and this causes those people to be overreactive to allergens that otherwise would cause only mild allergies in most people. Mastocytosis is a serious disease that can cause fatal anaphylaxis (suffocation by constriction of the airway). Mast cell activation disorder or syndrome (MCAD/MCAS) creates similar or nearly identical symptoms, but its root cause is different; patients with mastocytosis have too many mast cells, whereas patients with MCAD have overactive/over-sensitive mast cells. And whereas mastocytosis is a genetic disorder that can be inherited from parents, MCAD appears to be an acquired disorder that is triggered by an environmental cause. One known cause is Lyme disease infection.

If you speak with a Lyme disease patient or read their writing, you’ll come across a lot of discussion about Lyme being a so-called “invisible disease,” similar to fibromyalgia, multiple sclerosis, chronic fatigue syndrome (CFS, now properly understood to be myelagic encephalomyelitis), in which patients may not display any outward signs of illness, but nevertheless suffer immensely, sometimes to the point of disability. Many chronic diseases fall into this category. Probably because these illness don’t cause the appearance of illness in many cases, they are largely overlooked and sometimes discounted by the public at large—and sometimes even by doctors and medical authorities. This adds significantly to the frustration of chronic illness patients—not only do they life with severely limiting and often painful health problems, but their illness is doubted by others, even as patients with better-understood illnesses such as cancer and now HIV receive outpourings of support and sympathy from most people.

In case this reads as being overly sensitive, or perhaps even insensitive to people who live with cancer and HIV, it’s not personal; it’s simply an observation. If you don’t believe it, I’d challenge you to an experiment: Tell a few people you know that a good friend of yours was just diagnosed with cancer or HIV. Note their reactions. And tell a few other people that a good friend of yours was just diagnosed with Lyme disease. Note those reactions.

(You may be thinking, but cancer and HIV can be deadly. So can Lyme disease—but even if Lyme-related fatalities aren’t as common or as commonly understood as those from cancer, a recent survey of patients revealed that chronic Lyme patients report poorer overall health and quality of life than patients with diabetes, multiple sclerosis, fibromyalgia, and even congestive heart failure. While we may be expected to live longer, for many of us, our lives will be mostly confined to our beds and, when we are well enough, desks at work.)

Unlike many people who have Lyme and other “invisible illnesses,” I wear my illness on my skin—which has been a curse from a vanity standpoint, but in some ways has also been a saving grace as I have sought explanations for my health problems.

As exhaustively detailed, I went from doctor to doctor to doctor, being looked at, poked, prodded, zapped, drained, squeezed and interrogated, usually to be told that I’m in perfect health. Yet each time I would go home and avert my eyes as I changed clothes, because my body is marred by all sorts of scars, scratches and rashes. Even fully clothed, my face bears lumpy scars from severe adolescent acne. I’m not anybody’s picture of perfect health. And this brings us back to mast cell disorders and to Doctor Nine. (I am prone to chasing shiny objects—the very best constructive criticism I ever ignored in a writing workshop, by the way—but I usually circle back to my point.)

Just before my neurological problems flared up and became impossible to ignore (see Doctor One), I suddenly began to get hives—something that had never before happened to me. I actually recall the very first time it happened: I was on a business trip in Chicago, and I had just taken a long walk with a colleague, returned to the hotel, ate dinner and went to bed. As soon as I got in bed, my legs began to itch. And kept itching. I got out of bed to find that my legs were bright red and lumpy all over. Having had hives before, I worried that I was being eaten alive by bedbugs. And being chronically passive (a problem I’ve since overcome), instead of demanding a new hotel room, I instead put on three pairs of pants, tucked them into my socks, and a couple of long-sleeved shirts, and got back into the bed. From that day forward, I broke out in hives every day for years. Not only that, but my legs would turn bright red and hot to the touch every day around 4:00 p.m. (I’d later come to know this phenomenon as “flushing.”)

<p>Dermatographic urticaria, or simply dermatographia (skin writing), often is a primary indicator of a mast cell disorder. Here, I lightly scratched the words “skin deep” onto my forearm with a paperclip. Within a couple of minutes, the words appeared faintly pink. A couple more minutes and they were clearly etched in raised, red scar-type skin.</p>

Dermatographic urticaria, or simply dermatographia (skin writing), often is a primary indicator of a mast cell disorder. Here, I lightly scratched the words “skin deep” onto my forearm with a paperclip. Within a couple of minutes, the words appeared faintly pink. A couple more minutes and they were clearly etched in raised, red scar-type skin.

Another curious skin issue: I’d often walk by a coworker who would ask me “what happened.” In every case, I had a big red gash across my forehead, on my cheek or arm. It looked like a big scar—but then would fade. I came to realize that scratching an itch lightly produced this result. Then I realized that I could lightly scratch a word or a picture on my arm and within five to 10 minutes, the image would puff up, bright red, for all the world to see—and then be gone within an hour. It was cool, and it could be gross. I once pushed up the sleeve of a ribbed sweater to find the ribbing imprinted on my arm.

<p>A ribbed sweater leaves an imprint on my arm. It’s not only octopuses that can change the texture of their skin!</p>

A ribbed sweater leaves an imprint on my arm. It’s not only octopuses that can change the texture of their skin!

That was 2010. As I went from doctor to doctor, they would examine me, worried about my health, run laboratory tests, and then tell me I am in perfect health—despite my self-reported symptoms that most suggested were all in my mind, and despite sometimes grotesque skin problems that are apparent to the naked eye.

When I discovered the dermatographic urticaria, I asked my dermatologist about it. He told me it’s not uncommon and not a big deal—“Just make sure to take a Claritin or Allegra every day and you’ll be fine,” he said. No further explanation. As many (let’s be honest and say most) doctors resent when patients conduct their own research, I thought, all right, no big deal.

It wasn’t until October of 2016 that I was invited to attend a medical conference few patients ever would have an opportunity to attend, and learned about the connection between mast cell disorders and Lyme disease. (I’ll write more about mast cells in separate essays. This one is already 20 times longer than preferred...oops.)

I spoke with Dr. Daniel Jaller briefly following a presentation on mast cell diseases, and he confirmed that my curious and otherwise unexplained symptoms of dermatographia and heat and exercise intolerance are strong indicators of a mast cell disorder, and he recommended seeing a specialist.

I brought this to the attention of my doctor who treats Lyme, and she was aware of the connection and ordered a new blood test. (A new blood test! I thought that I had had every blood test known to medical science!)

The tryptase level was very high, a strong indicator of mast cell activation disorder.

And this is central to the justification of this overlong post: My doctor who treats Lyme disease has characteristics that are unusual to doctors I’ve encountered throughout my life. She wants to know about my health problems—all of them—and she sees her role as being responsible for making me as well as possible. I always thought this is what all doctors do, but it’s not. Most doctors, in my experience, want as little information as possible because they need to spend as little time with patients as possible. When something unusual presents itself, doctors guess which specialist may be knowledgeable and write a referral. In my case, living with Lyme disease and potentially with a mast cell disorder, my health problems unfortunately are too ignorant to understand that they should confine themselves to a single physiological system for the sake of being properly diagnosed by a specialist.

Even with the best and truly caring neurologists, this happened at every appointment:

Neurologist: Tell me about your symptoms over the past two months.

Me: Well, I have numbness and tingling in my feet and lower legs, and sometimes excruciating pain when I walk. Like I’m being stuck with a thousand electrified needles with every step. So I spent all weekend in bed off my feet, sometimes even crawled into the bathroom when I had to, and I called into work sick on Monday because I couldn’t walk.

Neurologist: You missed work? That’s really serious. What else?

Me: My vision goes blurry on and off.

Neurologist: On the same side of your body as the numbness and pins-and-needles pain?

Me: The pain and numbness is on both sides. The blurriness is mostly in my right eye.

Neurologist: Both sides? Hmm. OK. Demyelinating diseases are usually confined to one side...

Me: OK? I don’t know...I’m just answering your questions honestly.

Neurologist: What else.

Me: Well, I feel like I have razor blades in my joints—my elbows, shoulders, less often my hips and knees.

Neurologist: Your joints. Is it nerve pain or bone pain?

Me: I get really bad pain in my arms sometimes that feels like it’s in my bones, deep in my bones.

Neurologist: Oh. That’s not a nerve problem. Why aren’t you seeing an orthopedic surgeon if you have bone problems?

Me: Huh? I’m just answering your said to tell you about all my symptoms.

Neurologist: Oh, OK. Sure, sure. But you should ask your doctor to refer you to an orthopedic specialist. That’s not my specialty...

Conversations with every specialist have gone this way—except the one who treats Lyme disease.

Doctors who specialize in Lyme have been maligned—I would say slandered—in the medical community and even in the press. Last year, for example, VICE published an article (which I criticized extensively in this essay) in which a representative of the Infectious Diseases Society of America (IDSA) suggests that doctors who treat Lyme disease are predatory, exploitative medical non-professionals who seek out sick (or, worse, mentally ill) patients, prescribe them unnecessary antibiotics, and extort money from them in modern-day snake-oil practices.

Predatory doctors exist. So do negligent ones. So do incompetent ones. In my experience so far, the majority of Lyme specialists are among the most dedicated, truly caring medical practitioners. Oftentimes, their motivations to help people are based upon personal experiences. In most cases, at least historically, they risk their careers for the sake of treating patients. This says a great deal to me about their intentions. If they’re in it to make a buck, there are certainly less risky ways to do that.

Take, for instance, a doctor I met in October. I sat next to her at a medical conference. She looked a bit distraught. As we spoke, she explained that she practices in a state in which Lyme disease is said not to be endemic. In fact, she said, as far as she knows she is the only doctor in the state who specializes in Lyme disease. And it’s not easy. Her office had been recently visited, without warning, by authorities who were tipped off to investigate her practice for potential malfeasance. She had been intimidated by the visit, and was given a vague warning to be careful about who she treats and how she treats them. She understood this to mean that she should no longer diagnose Lyme disease—because Lyme is said not to exist in her state, even when patients’ blood tests turn up Lyme positive—and certainly not treat it.

Yet the patients who found her all have essentially the same mini-epics I’ve recounted here—more or less the exact same experiences: Slowly developing health problems that mimic multiple sclerosis or rheumatoid arthritis. Countless referrals to specialists who are more dubious than curious about inconsistent symptoms that span multiple systems instead of being neatly confined to the central nervous system or joints or connective tissues. Oftentimes obvious psychiatric symptoms such as sudden-onset depression, anxiety, panic attacks, sometimes even delusions or passing psychotic states. Although psychiatric symptoms can result from infections or inflammations of the brain, they are almost always considered by mainstream doctors to be the cause of imagined physical symptoms rather than concurrent with them, and these patients almost always end up under the care of a psychiatrist who treats the neuropsychiatric symptoms with drugs and altogether discounts the physical ones. The effect, in other words, overshadows the cause—this is mainstream practice. And doctors who investigate the cause for reasons for which I have yet to find any reasonable explanation very often are punished for doing so.

I asked this distraught doctor why she bothers to treat Lyme patients given all the scrutiny and intimidation. Or why she doesn’t move to another state to practice. Because, she said, she is from that state and she herself has Lyme disease, which took a decade or so to diagnose. And so she feels like a lifeline to other patients who have nowhere else to turn, and may be risking her career to help them.

Most doctors are not so committed. Most specialists draw bright lines that surround what symptoms a patient may have and what symptoms they may not.

Lyme—the infectious agent itself, Borrelia burgdorferi—is an infectious disease. In most cases, an infected tick bites a person with its dirty needle of a mouth and injects the bacteria into the person’s body. It usually but not always causes a rash, and then the bacteria hitch a quick ride in the bloodstream and then drill their way into less-oxygenated tissues if not treated immediately and fully with antibiotics. After years of stating that all Lyme disease patients are always cured when treated with a short course of doxycycline and denying that Lyme disease can be a chronic illness, the CDC finally came to acknowledge what it refers to as post-Lyme disease treatment syndrome, or PLDTS.

Is it a persisting infection? According to CDC no; according to a growing body of research, some strains of Borrelia survive antibiotic treatment in laboratory settings and there’s no real reason to believe it wouldn’t do the same in the human body.

Could untreated Lyme cause irreparable neurological damage that may present as a multiple sclerosis-type illness even after an acute Lyme infection is cured? According to the CDC, possibly—although CDC officials almost always refuse to discuss this and instead dedicate all discussion of Lyme instead to preventing the infection.

Could Lyme disease infection be the catalyst for ongoing autoimmune diseases that are similar to but not the same as multiple sclerosis, rheumatoid arthritis, lupus, Alzheimer’s and other diseases? All signs I’ve seen point to yes—and yet the so-called Lyme Wars are entirely hung up on whether or not Lyme is an untreatable infection. The CDC and IDSA opinions seem to be tethered to this debate, and the debate halts all other considerations. IDSA representative Paul Auwaerter, for example, that that VICE article, says doctors who prescribe extended-course antibiotics to Lyme patients are harming the patients’ health, even when patients report that their health improves as a result, and suggests that these doctors are preventing patients from finding proper medical care for other serious illnesses. His opinion is consistent with the anti-chronic Lyme opinion, and yet those of this persuasion who purport to care about patients’ well being never address these patient experiences:

  • In almost all cases, patients who end up seeing a Lyme specialist already have gone to multiple specialists who in many cases tell the person that s/he is entirely well based upon normal lab test results, and/or who dismiss these patients as having invalid illnesses because their symptoms are inconsistent with diagnostic criteria described in CDC-approved medical guidelines or in their medical reference books. In other words, the patients’ symptoms don’t match present understanding of diseases and as a result many doctors are conditioned to assume that the patients’ illnesses as presented are either imagined or the result of anxiety.
  • In a great share of cases, patients diagnosed with Lyme disease who are treated with a prolonged course of antibiotics experience a great improvement in their health—following many other failed attempts to treat their symptoms with various doctor-approved or -prescribed remedies, including psychiatric medications.
  • In some cases, as in mine, doctors who specialize in Lyme disease (unlike most other specialists) read a great deal about developing research and emerging illnesses, including the interconnectedness of various bodily systems (especially the CNS and autoimmune systems) and as a result make discoveries beyond Lyme disease that other doctors never would find. Remember, the whole point of this article is to detail all the different medical professionals I saw. Most of them said that they had given every test they knew to give and that nothing to could be determined based on what’s available. Some suggested that my illness was imagined or pretended, and some suggested that perhaps medical science simply had not caught up to whatever was wrong with me. My Lyme disease specialist—contrary to generalizations from critics such as those as the IDSA—is not satisfied with being stumped. She did a little research and realized she should test my tryptase level. Of the more than a dozen doctors I saw, none ever would have tested this, or the C4a level that has at times been “off the charts.” As far as all prior doctors were concerned, they had done everything they could do and all tests showed I was healthy. As far as my Lyme specialist is concerned, symptoms consistent with tickborne diseases warrant testing and treatment, and symptoms inconsistent with tickborne diseases but which surface in research as potentially linked warrant testing and, depending on test results, treatment. The critics would say that the standard practice is the better practice. I want to know why, but the critics unfortunately stop the conversation there.
  • Patients who after years of suffering and being told by countless doctors that their illnesses are all in their heads 1) finally receive a diagnosis of a physical illness, 2) are treated and see a great improvement in their symptoms after years of being extremely ill and sometimes even disabled, and 3) find that their Lyme specialists take them seriously, listen to and document all of their health problems, and take an investigative and curious approach to both diagnosis and treatment instead of a condescending or patronizing and dismissive approach, according to critics, should throw all of this away and instead continue to spend time and money on appointments with other specialists who 1) continue to tell them their illnesses are imagined or pretended, 2) cannot or will not offer any viable treatment, and 3) are rushed in and out of the office, treated with disrespect and implications that they are mentally ill and should be loaded up on psychiatric medications that do not improve any of their physical symptoms.

As a patient or the parent or spouse of a patient who experiences the above, what would you do?

Conventional doctors failed me in my 30s. There’s no other honest way to say it. They failed diagnosing me, which I can forgive. And failing diagnosis, they failed on a human level by consistently, one after the other, telling me or implying that I was either imagining or pretending my illness. That’s unforgivable.

I’ve learned that countless people—I have spoken in person or virtually to thousands, literally—are sane and suffering, and have been rejected by conventional doctors. Some of those conventional doctors who reject patients who are among the sickest and most suffering condemn the doctors that end up helping those patients.

Until doctors can be less defensive, more honest and more straightforward with their patients—“I don’t know what’s wrong with you” is more honest in most cases than “it’s probably anxiety,” and yet the anxiety explanation and lazy prescription of antianxiolytic or antidepressant medications are far more common—patients with chronic illnesses (and their parents and loved ones) need to be more discerning about their medical care. And, yes, more curious and self-informed. Many doctors hate patients who have some level of medical fluency because these patients tend to have more questions, require more time, and sometimes have the audacity to question the all-knowing authority of their doctors, who sometimes come to view themselves as superhuman, even omniscient. From Greek mythology to today’s White House, we know that entities that purport to have godlike powers do not take well to those who challenge or even question them. Fortunately, we were all born into this world with free will and a whole universe of choices—it’s up to us whether we choose to accept the fates that are dictated to us or to exert our wills to challenge them.

Go To Homepage

Before You Go

Popular in the Community