I Had a Mysterious, Debilitating, Undiagnosable Illness

I can probably pinpoint the moment that my recent, insane, undiagnosed health problems morphed into such a state of malignant comedy that I could only laugh and then cry and then not laugh again for a few more weeks.

This moment came a few days after I was blood-tested for Lyme Disease, likely my 7,384th blood test of the past year, and I called my primary care doctor’s office and inquired as to the results.

“Negative,” the nurse said. “It’s all negative.”

Two full days later, a different nurse from the very same doctor’s office called to tell me she had some news for me.

“Your Lyme test came back positive,” she said.

“It did?” I said. “But you told me it was negative.”

“No I didn’t,” she said. “Someone else must have told you that.”

“Who?”

“I don’t know,” she replied. “But it’s positive.”

I’d come to expect such hilarious “Who’s on first?” type goofs from doctors and nurses, because in the past year I’ve had a laundry list of unexplained health problems that have knocked me out for entire months, but no doctor can figure out exactly what’s going on.

It all began while I was working on a play in Atlanta last May, when about halfway through a performance, I stood up and felt like I was having a stroke. I could barely feel my body, my vision was blurred, my heart started racing and I had trouble breathing. These are all difficult feelings to experience, especially while performing a play for 500 people under bright lights, punching actors in the stomach and singing alt-country songs.

I wondered if it could be a panic attack, but when the dizziness and general death-feeling refused to let up over the next few days and I could hardly walk or stay awake, I went to the hospital where they diagnosed me with “benign positional vertigo.” I was given some pills, which didn’t do anything, so I went to see another doctor to follow up.

A non-medical friend had suggested I might have an “inner ear infection,” which sounded fair enough — those can apparently cause crazy dizziness and fatigue. So I suggested this diagnosis to the doctor who laid me down on a table and did a test where she turned my head back and forth a few times.

“Does that make you dizzy?” she asked.

“It does,” I said.

“Then it’s an inner ear infection!” she announced with a smile, as if she had figured it all out herself, as opposed to my non-medical friend.

When I got back to New York from Atlanta, I was still feeling dizzy and exhausted most of the day, taking frequent naps at my job’s very real “Nap Room,” so I went to an ENT (an ear, nose, and throat specialist) who did extensive ear tests, because I logically still thought I had an inner ear infection, this being the diagnosis given to me by my non-medical friend and then confirmed by my medical doctor. The ENT flushed out my ears with water, gave me a hearing test and told me my ears worked fine.

“So what is it?” I asked.

“Could be anything,” the ENT said.

(Usually a diagnosis of “Could be anything” would suggest a follow up, perhaps, to try and ascertain what “anything” could mean, but as I learned repeatedly as I traveled the Great American Healthcare System: This is very much not in this case.)

About a month later the dizziness suddenly morphed into debilitating migraines, which involved curling up in a fetal position on the floor, nauseous and pounding, unable to hear a loud noise or look at a flickering light without wanting to murder everybody.

Bouncing around my dear friends’ many weddings around the country last summer, I honestly can’t remember a single weekend where I didn’t feel like a tiny person was boring into my brain and attempting to remove its contents. While feebly dancing to “Shout” under well-lit tents I was pounding down gallons of water and anxiously awaiting the moment I could crawl into bed and cover my face with the pillow.

My primary care doctor ordered me a brain MRI (yikes!) which was normal, and then told me to see a neurologist. The thing with my former primary care doctor is he’s one of those New York doctors happy to hear you for 2 minutes and then quickly cart you out the door with a prescription. Despite his four stars on Yelp, which were initially comforting, I decided I didn’t trust him, and instead resorted to Google-town, where I have remained ever since.

In Google-town, I became president. But it wasn’t just aimless Googling like some Google Charlatan: I read professorial essays from professional medical reports! After months of no answers, I was an Honors Graduate of Google Medical School. How can one not be, when one is answer-less and feeling like a pile of ass?

The migraines continued with increasing ferocity so I sought out a “headache expert” who put me on daily migraine pills and also “emergency” migraine pills, for when the daily pills do nothing and you’re having an “emergency” migraine. The emergency pills actually made me feel like I was choking on bones and made my headaches worse, so I stopped taking those.

I got permanent eye floaters in my eyes—those little black dots that usually only come when you’re in the sun—and it became difficult to stare at the computer all day. I went to an optometrist, an acupuncturist, an osteopath, a naturopath, another primary care doctor. Still, the death-headaches continued pretty much every day.

“Stress!” some suggested.

“Wear a heating pad over your neck!” one said.

“I bet if you got a huge bonus with a lot of success this would all go away,” another particularly dick-ish doctor explained.

The headaches went on for about three months, until last October, when my legs started burning for no reason.

“How weird,” one thinks, when one’s legs start burning for no reason.

Unfortunately my legs started burning during Hurricane Sandy, so doctors were unavailable and the subways were out, but I was at the point where my legs were burning so bad I could barely walk, along with the migraines and all that jazz. So I found a local Brooklyn neurologist who wore an American flag tie and assigned me spinal MRIs and also this nerve test where they electrocute your limbs for 30 minutes using a magic wand. I also went to a local chiropractor who re-alligned my back twice and told me to elevate my legs at night.

After the storm I returned to my primary care doctor, who laughed when I told him about the burning leg pain and now numbness, the continuing light and sound sensitivity, the fatigue and the migraines. And then he said something I’ll probably remember forever:

“This is about the time I like to send people to DifficultDiagnosis.org.”

“Ha ha?” I replied.

But he was very serious, as was this website. It turned out my former primary care doctor also used the internet professionally. We clearly have the same Google degree, he and I.

At this point I had also read about late stage neurological Lyme Disease—it matched many of my symptoms—and before I went blindly to this web doctor with his aptly named website, I suggested he test me for that.

“Hm. Have you been in the Hamptons?” he asked.

“Once,” I said. “But I also went to school in Vermont, have hiked around the East Coast, and go to the mountains sometimes. Aren’t there a lot of ticks in the mountains?”

“Yeah, maybe,” he said, shrugging his shoulders, ordering the test.

The leg pain got worse and I sought out a US News “top neurologist” at a top neurology hospital in New York City, thereby abandoning my former neurologist with the American flag tie. My spinal MRI results had come back, reporting herniated and bulging discs in my mid and lower back. This must be causing the leg pain, I assumed, these herniated and bulging discs! I also started having random and excruciating back pain, which seemed to fit with that diagnosis.

“The herniated discs aren’t causing your pain,” the top neurologist at the top US hospital said. “These are nothing!” He added for emphasis, waving around my spinal MRIs like they were worthless to him, this US News top neurologist. He then ordered a barrage of other tests, including another, very similar nerve test where they electrocute your nerves for 30 minutes, but this one was in a different room, with a Russian woman, on the Upper East Side. And they added a needle instead of just a magic wand. They also ordered a nerve biopsy where they chop off parts of your legs and send them to a lab.

As November progressed, I began to get full body muscle twitches, nerve pain and weakness shooting through my hands, feet, legs, and hips, and this other new, fun thing where when I lay down for 2 minutes my entire back and abdomen started to pulsate with horrible pain. I stopped sleeping entirely, because I couldn’t lie down anymore. Even if I was achingly tired, my body wouldn’t let me sleep, not even for a minute. If I didn’t take an Ambien, I was awake all night.

A family friend hooked me up with a “doctor to the stars,” who had framed photographs of Sting and Nelson Mandela on his desk and costs about $700 out of pocket. “If you can’t trust Sting’s doctor, who can you trust?” I said to myself, or maybe out loud.

“It’s anxiety!” Sting’s doctor proclaimed.

Then Sting’s doctor gave me a physical and told me to take Aleve and Mylanta. And when Aleve and Mylanta (naturally) didn’t work I gave him a call, and he told me he didn’t know what was causing my horrible stomach pain and leg pain and back pain keeping me up all night long.

“See a Gastroenterologist,” he said. I asked him to recommend one and he told me to call his office the next day for the number. I did, and then he never called me back. I called again. And he never called me back. I really hope he’s enjoying my $700.

What Would Sting Do? I wondered. He would probably find his own Gastroenterologist on Google! So I found one who had great reviews and had won Patient’s Choice Awards. I told him my now practically insane and laughably long list of symptoms and he assigned me an endoscopy and colonoscopy. Do you know what the worst test ever is? It is called a colonoscopy and it is a very very bad thing.

When those tests also turned up negative, I told him I was worried it was pancreatic, since my GI symptoms and sudden, acutely awful back pain at night exactly mirrored those of pancreatic cancer.

“I don’t think you have pancreatic cancer,” he said. “But we should take a look!”

I told him I’d lost 15 pounds, my lymph nodes had swollen up to the level where I could barely talk, every time I stood up I felt like I was going to faint, and I couldn’t raise my arms or hold anything for longer than 10 seconds. Typing hurt, too, just in case this thing wanted to let me continue to write easily in some capacity.

“Wow,” he actually said. “That’s bad.”

He gave me an abdominal ultrasound and a CT scan, which I got after waiting in a gown alongside a collection of old Jewish ladies, who were very nice, and also wearing gowns. As I was leaving, the hospital told me the results of the CT were already done and I could ask my doctor for them. Of course, my doctor wouldn’t call me back to discuss them, because why would he? I waited a day for him to call me back, but he didn’t. So then I actually stooped so low as to create a fake doctor’s fax number and have them sent there, because I didn’t want to wait 5 days to find out I had cancer.

The results were normal.

At this point it’s worth noting that I did, in fact, have health insurance through my place of employment. It was CIGNA and it was good, and it very likely saved me many, many thousands of dollars. Without insurance, the amount of money I would have owed through all of this would have been deeply, painfully staggering.

Insurance also helped because I had to go on short-term disability and essentially stop my entire life without any discernible end date. Work, performing, writing long-term, exercise, going places with noises, walking for longer than 10 minutes, etc. etc. It all stopped.

But I will say that the one kind of beautiful thing that happened, somehow, is that with every piece of marginally good news, I actually became so grateful. For everything. I wanted to hold close the friends who stuck with me and listened to me incessantly bitch about this, to celebrate the girlfriend who loved/wanted to kill/get away from me for a large chunk of time, and I really truly knew that I wanted to be alive more than ever, to be be living life and seeing people and enjoying stupid things again instead of almost crying at every single Christmas commercial, and I knew I wanted to get better, even though it remained so damn confusing.

It’s times like these that you have to ascribe to the “everything happens for a reason” philosophy, or else you’ll go completely insane, right?

But back we were to the Lyme thing. The first Lyme Disease test came back positive, but then the “confirmation” test was negative. Ironically, late stage Lyme is nearly impossible to diagnose, because the CDC still doesn’t “believe” in the chronic version of it, and blood tests are wildly inaccurate. The only vague cure is months of IV antibiotics, and even that doesn’t work a lot of the time, and insurance companies don’t cover them. “Lymies” — people who have or believe they have Lyme Disease — flood online health boards to complain, rightfully, about how insurance companies treat them.

The problem is, according to the internet, everyone with a mysterious illness seems to think they have Lyme Disease. When you look up Lyme Disease symptoms you get a list of pretty much every single malady that can possibly afflict a human being (everything from memory loss to muscle pain to trouble breathing to the standard “bullseye rash”) and thousands of frantic posts from people who are convinced they have it and want to know what the hell they’re supposed to do about it.

A new doctor I began seeing last January told me it was “definitely” Lyme Disease, and I should begin an intense antibiotic regimen immediately, but then the Cleveland Clinic, one of the most renowned hospital centers in the world, told me it “probably wasn’t” Lyme. Sure, I could take heavy Lyme antibiotics “if I wanted,” but it couldn’t be guaranteed that anything would work. They suggested Fibromyalgia, Chronic Fatigue, and every other blanket autoimmune disease as a possibility.

But then when I came back to New York my new doctor told me, essentially, that the Cleveland Clinic was full of shit. He suggested I see a “Lyme specialist,” who incidentally costs $1,200 out-of-pocket. When I called this Lyme specialist, his nurse demanded $500 immediately as a “down payment” to guarantee me a slot.

This was when I, figuratively and literally, threw in the towel (as I had been sweating profusely, I often carried towels.) Whatever this was, it was just going to have to run its course.

This was part of my life now, and it’s time this mysterious illness and I became strange bedfellows. Pals. Amigos. Friends.

And then somehow, just as I had begun to accept this mysterious illness into my life, I began to feel better. It happened slowly, but it was very real. Though I’m still exhausted most of the day, still have random and unexplained twitches and muscle pain, and there are days where I long for a bed, it’s significantly better. And it doesn’t seem to be getting worse.

I also finally found a primary care doctor who has more than 30 minutes of time in his day, doesn’t charge exorbitant mystery fees, and actually uses email. When I have a question I can just send him a fucking email like a normal person. It seems like such a small luxury, but after months of trying desperately to get doctors on the phone, leaving messages with unhelpful assistants, it was a true and magnificent joy to meet a doctor who knows how to use a computer and actually seems invested in making you better.

“We’re living a lot longer,” this doctor told me last month. “But we’re also much sicker than we’ve ever been.”

Because of all the chemicals we eat and ingest, he said, among other things, there are sicknesses and allergies and problems we don’t yet understand. He meets someone almost every week who’s been sick for months and can’t figure out why. And while this seems like an unhelpful diagnosis, it was somehow so much more comforting than anything else I’d heard up to that point.

A sick person shouldn’t have to beg for answers. Lyme Disease specialists shouldn’t be able to charge $1,200 for a consultation. Doctors shouldn’t be allowed to say “I don’t know” and kick you out the door without a follow-up, nor should they sigh dramatically when a patient brings in a stack of tests for them to look over. We should all figure out whether we “believe” in Lyme Disease, especially if it’s maybe, sort of the largest “epidemic” in the country.

Whatever your opinion on the current state of healthcare in this country, we can all agree it probably isn’t working as effectively as it could be.

 

Lucas is a writer and performer based in New York. His work has appeared in McSweeney’s, The Washington Post, Flavorwire, and as a staff reporter for the Huffington Post. Co-creator of The Days of Yore. Twitter: @Lucaskavner.

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40 Comments / Post A Comment

ATF@twitter (#1,471)

This has been my life since contracting what I’ve come to refer to as Death Mono two years ago. Worst year of my life health-wise was spring 2011 to spring 2012. I saw so many doctors and all I ever got was an initial diagnosis of mono.

This nearly identical to my own Lyme experience. In addition to suggested diagnoses of fibromyalgia, nonspecific autoimmune disorders, and arthritis I was also repeatedly asked if I “was feeling down” or “had just broken up with my boyfriend”. In describing my locked-up joints and the bizarre shooting nerve pain/numbness in my extremities, I said that it “felt like I had been holding something heavy over my head for hours”. My doctor’s advice? “Stop doing that”. :-I
It’s mind-blowing how little awareness there is for Lyme and how many doctors (particularly on the east coast) are unwilling to pursue it as a possibility. I spent 15 years in the woods on a near-daily basis and for something like 8 docs, that wasn’t enough reason to test for it. Medical leave, useless bloat-y steroids, and a full year of my life later I finally got the help I needed. Sorry to hear that this is still going on.

aetataureate (#1,310)

“as supposed to” guys really

AitchBee (#3,001)

@aetataureate “ascribe to the ‘everything happens for a reason’ philosophy”

aetataureate (#1,310)

@AitchBee hahahahaha we just need to SWITCH these word beginnings and it’ll all be (almost, jokingly) gravy.

Ugh this is awful. I have an HMO (Kaiser) and my doctor is fantastic about email, etc. But I’m relatively healthy– and I’ve been avoiding seeing a specialist about some GI issues, precisely because I don’t want to navigate this mess.

mysterygirl (#2,058)

Thanks for this piece. I had a similar debilitating, unknown illness hit me out of nowhere in my early 20s. I had all those nerve tests (including the electrocution one and the electric needle one), MRIs, all the blood tests, etc., and to this day I still don’t know what was going on. Mercifully it cleared up about a year into my suffering, and over the ten years since, I’ve only had maybe three minor relapses. So, my fingers are crossed for you that you’re out of the woods, and you can add me to the numbers of people who haven’t found answers very easily.

latenac (#4,104)

I’m sorry that you went through all of that. Finding a basic primary care physician who will listen and talk to you is always so difficult.

The problem with Lyme disease is that there is early stage Lyme disease which is very diagnosable and treatable. Late stage Lyme disease which is also diagnosable and treatable although with more side effects. And then chronic Lyme disease which isn’t diagnosable and not really treatable since there is such a wide range of symptoms and it apparently can magically hide in your body that it isn’t actually considered a disease amongst medial authorities including the CDC. It does have a nice a little business of specialists and expensive treatments that your insurance won’t cover though. Frankly I always recommend to people to get a second opinion when diagnosed with Chronic Lyme Disease mainly b/c I have a friend who was but sought a 2nd opinion and discovered she had cancer.

Thank you for posting this. The amount of money we are charged by physicians who then never even call us back to tell us what a test result happens to be, or the amount of money that gets spent on Lyme’s disease in particular, is outrageous.

A friend of mine, who fortunately was rather rich, tried to get her Lyme’s disease diagnosed. And doctor after doctor told her she did not have the disease, and some physicians added “It is not endemic to Northern California.” Many of her Lyme’s tests showed nothing, in terms of Lyme’s. It was only when her vet let her know that two of her three doggies had tested positive for Lyme’s that she realized it might be late stage Lyme’s. Like the author of this piece tells us, late disease Lyme’s doesn’t show up! Finally she went on to get a very good doctor who actually helped her treat the disease.

LacunaKale (#4,105)

Are we the same person? I had the zappy test last month, and other then deciding that learning I “definitely don’t have carpal tunnel” (never thought I did, dude) got nada. Since, I don’t have good health insurance, and as of August will have none, this whole thing has been painful in more ways then just the pain.

As I am a poor, my doctor has suggested a wait and see approach. If I have another debilitating flare, then I’m supposed to be checked again for MS, and for the OMGnevergooglethat upper motor neuron disease. Right now, I’m just at a constant annoying and untreatable pain level.

landshark (#3,875)

I could have written this story about how nightmarish it was to get my back problems diagnosed and treated (and yeah, I had to endure wand/stick electrocution of the legs twice). I am so very very sorry.

I think a lot of the doctors failed you, but the whole odyssey really does reveal a lot about how medicine works, especially today. You really have to be your own advocate, know as much as you can and never give up. And jeebus, even with insurance, I bet it cost a pretty penny.

I feel lucky — after a year and a half of going to dozens of doctors, I finally found one who gave me a concrete answer and a real solution. Not the solution I wanted to hear (surgery), but still something. I got a big ole surgery six months ago (which fixed almost everything) and I pray that I will never get too discombobulated again, because I just don’t have it in me to do that trip all over again.

bejoyfulthough (#4,108)

Thanks for writing this! I’ve been trying to sort out chronic health issues involving not being able to breathe and so being dizzy and fatigued and stressed all the time for the past year, and I thought I couldn’t be more frustrated with my medical care until I read this. It’s hard to be your own bad-ass health advocate when you feel like you’re going to collapse at any minute and every ounce of energy is going toward working and paying bills on time.

deepomega (#22)

“all the chemicals” yes of course Lyme disease is because of fluoridated water

ragazza (#4,025)

My brother went through something like this, couldn’t work for a few months, and all they could tell him was “probably a virus.”

sophia_h (#3,049)

Yeah, I spent the first half of last year repeatedly going back to the low income health clinic about my double vision, fatigue, tingling hands, and weird cognitive impairments. Since I hadn’t had a stroke, I got a lot of shrugs, until someone finally sent me to the opthamalogist, who ordered an MRI, which led to a specialty clinic referral, another MRI, and a thrilling spinal tap, so that six months after everything started they finally figured out it was MS. Which I had guessed in the first few weeks based on google but didn’t want to suggest because doctors tend to think I’m a hypochondriac. Lyme was also a definite possibility, so I am “glad” I had the thing which has definitive diagnostic tests, and also genuinely glad for my county health insurance I was able to get through being unemployed and totally broke.

A sick person shouldn’t have to beg for answers, no. But a sick person should also realize that getting answers is not hastened by switching care providers a dozen times in a year, engaging in self-diagnosis that is intractable to evidence, or blaming medical professionals for the fact that a. sometimes there aren’t any answers (yet) or that finding the correct answer can sometimes take a long time and a lot of effort. And sick people should realize that they are also not the only and almost certainly not the sickest person their doc is caring for. If waiting one day to talk to your gastroenterologist, a person who might *very legitimately* be busy cauterizing someone’s internal bleeding at any given time, is more than you can handle in the quest for chronic illness answers, it’s hard to take your other claims of unprofessionalism seriously. If you switch docs every time you don’t like an answer, you may wind up with answers you like, but less likely answers that reflect reality. Everyone deserves a PCP they feel comfortable with, but if you’re not comfortable with anyone except someone who sounds like he’s taken a big step back from evidence-based medicine, well, there’s one constant in that equation.

So… a doc who can spend 30 minutes a day talking to you about poisonous chemicals! Wild guess here, but it might be supplement sales or kickbacks from the “chronic Lyme specialist” that gives him the financial freedom to spend so much time with his patients, developing the kind of interpersonal rather than results-based trust that lets him say things like “the Cleveland Clinic is full of shit” without that being a huge red flag to his patients regarding the rigor of his own practice.

Queen of Pickles (#4,111)

@emmycantbemeeko

Wow – I think you might have misread the intent behind the OP’s posting. Finding the correct answer can take a “long time and a lot of effort” – but whose effort? The doctors’? Which doctor offered a referral that wasn’t off-the-cuff? Which one even had the time to? I think the OP’s larger point is that the medical system in our society operates at a disadvantage to both doctors who want to give more thorough care, and anyone in need of more thorough care, because of the shortage of time available. It’s hurting everyone.

Also, “switching care providers” is not the same thing as seeing multiple specialists. Sure, it would be less efficient if the OP had hopped from general practitioner to general practitioner, but they were seeking highly specialized information from experts in tiny fields. Each specialist recommended a different type of specialist. So the OP was following doctors’ orders, you could say.

What would you have done differently?

I would start by recognizing that differential diagnosis works by addressing the most likely and the most lethal possibilities first, and that doing that isn’t a sign of incompetence. That an ever-evolving list of symptoms which add up to no classic presentation is going to present a diagnostic challenge to any doctor, and that it taking time and multiple tests to rule out a wide range of possible problems suggested by what was, by his own admission, a very long list of bizarre symptoms, is not a sign of failure or incompetence but *how medicine works*. I would have some patience for things like test results and getting face time with specialists because I’ve worked on the other side and I know that, TV shows aside, most docs are not taking martini lunches and extra rounds of golf, they’re working their asses off (and under some crazy laws related to privacy and liability that make patients who pull shit like making up a doctor’s office to get their faxed test results sooner a nightmare, although kudos, I guess, for not being the sort who just call the hospital and scream obscenties at a secretary, that happens a lot too). I probably would have had a similar experience if I had the same health problem, albeit with fewer primary care docs because even if they are not ideal, at some point the continuity of care trumps other considerations. But I would not have perceived it as me “begging for answers” from some uncaring doctorwho was withholding them, but the sometimes frustrating process which is, believe it or not, also frustrating to your medical team, who are interested both in the outcome for you and in the answers for their own sake.

None of us were there and he is very good at making all these docs sound dreadful. but that in itself should prompt a doubletake. A dozen or more incompetent doctors (not to mention alternative care providers) in a row? So incompetent they didn’t even make an attempt to keep him as a patient? so clinically AND ethically AND financially incompetent? Every single one?

I mean, it’s not impossible, but damn does it make me think: jumping primary care docs four or possibly five times (the narrative is unclear on this, dwelling on more vital details like his neurologist’s choice in neckties) in one year suggests at least the possibility that he is a patient with unrealistic expectations who may be very difficult to work with.

I have a lot of sympathy for people with chronic illnesses, and I absolutely think there are a bunch of ways in which healthcare delivery in this country is inefficient and unevenly administered. But there are *also* patients whose expectations are out of line with reality. His essay is really light on medical details, and that makes me wonder. The combination of his dismissive and insulting description of every doctor and nurse he dealt with except for the last, and the fact that he doctor-shopped like crazy, and the fact that his symptoms eased as soon as he “accepted” them… I don’t know, what (other than an immediate diagnosis and cure), would have made him happy here? Would he have preferred if they *hadn’t* started with the basics like ear issues and worked their way up, or if they’d gone for big guns first, would we be reading about how the medical field tried to scam him with major diagnostics before addressing simpler possibilities? Should we be kicking off every exam for sudden-onset dizziness in a young adult with an MRI and tests for Chronic Lyme ( oh wait, there are no tests for Chronic Lyme, because even its proponents can’t agree on what it is or is not, and no diagnostic tests or criteria exist)? Or was just hearing that “well, people do get sick a lot these days, for reasons we don’t know” from a doc who would give him his email address all he wanted in the end?

Cause that’s fine, but actually performing diagnostics doesn’t make the earlier doctors bad, it makes them competent. Maybe their bedside manner was lacking, but god, read his descriptions, it sounds like he went to every one of these docs with a webmd diagnosis in his hand and a chip on his shoulder, and he dropped each one in short order. That is not the basis of a strong working relationship with your doctor, or any other human being.

I don’t know what you do for a living, but imagine that someone who has no background in it comes to you with a problem related to it and says “look, I need you to diagnose and fix this for me, but you only get one chance or I’m going to someone else. Also there is a small but real chance that the solution is yet unknown to mankind, or that I am making this all up. Also I think that my non-industry friend, the Internet, and/or a magician have already figured out the problem, why don’t you start there? If you fail, it is because you’re an uncaring incompetent.”

It’s just… yeah. There are dick doctors, sure. But there are also patients who are never really going to be happy and this piece sounds like it might have been written by one.

AitchBee (#3,001)

@emmycantbemeeko Thank you for articulating this–I was rubbed the wrong way by the article too, and not only because it’s not the quality of writing I’ve come to expect on the Billfold. “All the chemicals we eat and ingest,” indeed.

ktcrusoe (#4,120)

@emmycantbemeeko First time commenting just to say thank you for writing this! He sounds like the worst kind of patient. I felt sorry for all the doctors in the story from the beginning. You really think doctors don’t use email? No, they are just too busy to chit-chat about your Google findings when you don’t have an appointment. Please.

prolol (#3,152)

@emmycantbemeeko
First time commenting too, also to say thanks for this point of view.
Reading this essay and all the comments has made me a bit discouraged. I’m currently a second year med student and I’ve been holed up in my apartment for the past 5 weeks or so studying for my board exam (only one more week to go!). I’m discouraged because the perception of doctors seems SO terrible sometimes.

Maybe when I graduate medical school I’ll automatically turn into a jerk, but at the moment, I’m actually a pretty nice, empathetic person who’s working my ass off to learn how the body works.

I think I’m getting a little defensive here. I know that some doctors really ARE terrible, and when you’re dealing with chronic illness every negative interaction is probably exacerbated because being sick SUCKS and not getting answers is infuriating.

A side note–I feel like people get pretty upset when doctors suggest a psychological basis for physical symptoms. Maybe people feel that the doctor is diminishing the importance or impact of their symptoms by asking this. If the doctor ONLY considers psychological etiologies, that is a problem. But it would also be problematic if a physician didn’t consider them at all. So sometimes when a doctor asks you if there’s any possible psychological basis for your disease, that doctor is being thorough and doing his/her job. Because if your symptoms ARE psychogenic, they are also treatable. Your doctor would be doing you a disservice by NOT asking about recent emotional trauma, since it is a common cause of very real, physical symptoms.

TreatMans (#4,126)

@emmycantbemeeko Clearly you are a member of the medical profession, otherwise you would be seeing this more from the patient’s point of view. It’s not “doctor hopping” when no doctor is giving him any insight into what the hell is completely stopping his life in its tracks. It’s desperation. I don’t think he’s saying it was necessarily right to do it the way he did, but I think he’s pointing out that the healthcare system the way it is doesn’t allow for ANY KIND of coordinated care. Everyone has a different opinion and nobody talks to each other.

Doctors jobs obviously aren’t easy, but when a patient’s going on disability, they should be able to “find the time” to at least give more of their time than a simple visit is offered. And I think the situation in New York City is MUCH different than that of other places…. in NYC it’s so much faster and less personal, I’ve found.

TreatMans (#4,126)

Also, just to add… it shouldn’t be a “nightmare patient” when someone has a hazy diagnosis. That’s not the patient’s fault! And obviously it would be frustrating.

strunkandfunk (#2,182)

@ prolol
Just wanted to second your point about psychogenic symptoms. As medical professionals become better trained to consider a psychologic etiology for symptoms in an evidence-based fashion (and in a sensitive, empathetic way re: their patients), we all still have a long way to go to destigmatize the possibility of a psychological basis (or partial basis! sometimes its an interaction!) for illness. This is societal, but also personal. You have to have compassion for yourself so that you’re not offended if a doctor brings it up as a possibility. It seems so backwards to me to brush off a psychological etiology for something like, say, irritable bowel syndrome. I mean, there’s no arguing that diarrhea isn’t real… It seems cruel and misguided to everyone involved to denigrate possible emotional or psychological causes, or partial causes, for that kind of distress.

ktcrusoe (#4,120)

@TreatMans It would be frustrating. But it’s also not the healthcare professional’s fault that you have a vague and unclear set of symptoms, and that even advanced diagnostics cannot find a physical basis for them. You’re right, it is very hard to coordinate care if you’re not actually treating anything. It is less of a problem when you are. It sounds to me like every character in his story tried to help- ordering an insane array of tests, prescribing drugs to reduce his symptoms, making suggestions- but I guess all that is irrelevant if no one magically fixed him. For free. And had a nice gchat conversation about it.

TreatMans (#4,126)

@ktcrusoe Indeed, it’s not their fault. But it IS their fault (especially in New York City) when they’re so busy that they don’t have more than a few minutes to actually listen, rather than throwing expensive tests at the patient. As someone who went through something similar in the city, it’s not about “having a nice gchat,” it’s just about knowing that you have an advocate and someone who isn’t just looking to cram a million appointments into an hour time span. I’ve definitely learned a lot from the experience, and I’m sure this guy has too. But “ordering an insane array of tests” isn’t always akin to helping.

@TreatMans
I never said the hazy diagnosis made him a nightmare patient, I said his behavior-specifically lying to get his medical records faxed directly to him without consultation, circumventing policies put in place to protect both him and his doctor (who would be on the hook for tens of thousands in federal fines if that little stunt went wrong) made him a nightmare patient. Also the doctor-shopping, and the snarkiness, and the writing an extremely unflattering public essay about all his providers, all behavior that falls pretty firmly under “difficult patient”. Not the diagnosis or lack thereof. Most people in healthcare find helping a patient with a difficult diagnosis rewarding and interesting, albeit sometimes frustrating along the way. The illness itself does not a nightmare patient make.

Lis (#1,820)

Ugh I have gone through this a few times.

I have Crohn’s Disease, so when I started having abdominal pain a few years ago, we figured it was an ulcer. When it didn’t respond to treatment, well maybe it’s gallbladder issues. When all of those results came back normal (3 months later because apparently scheduling those tests where I lived was backed up 1.5 months each), maybe it’s a hernia. CT scan, not a hernia. MRI, oh look! Bulging discs! They’re not in the right place. Eventually, right before they were going to give up and send me to a pain clinic to try to put painkillers right in the nerve and get it to shut up, a friend hit me in the back just right to pop my dislocated rib back into place. Despite several doctors (an internist, a thoracic surgeon, and a neurosurgeon) feeling and manipulating my spine, no-one had felt it.

Seven months an four specialists, and it was fixed by being punched.

Lizzy (#4,116)

This happen to me it took a long time finally I was diagnosed with Dysautonomia (POTS)Postural orthostatic tachycardia syndrome there is no cure..the symptons feel like you are dying heart racing, tired the list is so long.

You know, I can’t guarantee the UK National Health Service would do any better in diagnosis and treatment, but at least you wouldn’t be paying out money every time you see someone.

Apocalypstick (#3,987)

@Kirsten Hey@twitter Ikr. I can completely sympathise with his frustration and how unfair it is that the more ill you are, the more important it is to advocate for yourself and the less able you’ll likely be to do so, but breathing a huge sigh of relief for the NHS. It’s absolutely not perfect but it’s served me and my family well, and really gone above and beyond in some cases.

Lionel Mandrake (#3,353)

I never been bitten by a tick, but I’ve had many of these symptoms, including some of the weird neurological ones. I spent years having every kind of diagnostic test (abdominal CT, colonoscopy, endoscopy, MRIs, etc. and so on and so on), and chasing diagnosis after diagnosis. Finally after much gentle (and not so gentle) prodding from my wife to get some mental health care, I’ve been seeing a straight-up psychiatrist in conjunction with an excellent therapist. The diagnosis? Acute Hypochondriasis.

Now, we all know some hypochondriacs, and they’re kind of cute and funny. Real Hypochondriasis, not so cute – we’re talking weird chains of conflicting, escalating, sometimes debilitating and generally ominous symptoms that put you in a constant state of terror and anxiety that you’re about to die any second. It’s horrible, and horrible for the people in your life, they can never tell when you’re actually sick, and neither can you.

Anyway, some basic drug treatment for anxiety and depression in conjunction with being able to talk about the problem on a regular basis has really, really helped. I still have bad days, but I’ve learned to recognize the triggers that set off my “symptoms”.

I think it’s telling that you first had these symptoms while performing in front of an audience – a stress situation if I ever heard one. I would strongly suggest that you look at a cognitive solution to your difficulties.

Bunburying (#3,481)

Hey Lucas, I’m sorry you’ve had so much suffering because of this. I can’t say whether you have Lyme disease or not, because I am a random internet stranger! But if you DO have it, you will not get better by waiting for it to go away. Your symptoms may heavily wax and wane, but until you start murdering spirochetes with antibiotics they are just going to hide in your body and bother you forever. I realize that your energy is heavily taxed just from living with these god-awful symptoms, but I beg you to follow up on that possibly-Lyme-diagnosis because maybe I could have saved myself years of suffering if some aggressive internet stranger had ordered me to do so long ago.

• There are two main tests for Lyme, one is called ELISA and one is called Western Blot. Get a Western Blot if you haven’t yet. It’s less prone to false negatives.

• While you’re doing that, get tested for Borrelia, Babesia, and Erlichia, common Lyme co-infections which can cause similar symptoms.

• If you test positive for any of these, TRY TO MURDER THE SHIT OUT OF THEM WITH ANTIBIOTICS. Despite what you may read, it is not necessary to take them intravenously. You should know within a month or two if they are helping, and if they aren’t you can stop. Antibiotics are exceedingly cheap compared to years of suffering. Seriously, please try.

• It’s increasingly common among doctors who specialize in chronic Lyme because to simply not take insurance at all because of the major difficulties they have with insurance companies who don’t want to accept the chronic Lyme diagnosis as a real thing. It sucks! But you’re in NYC, not the boonies, and you should be able to find an infectious disease specialist who has experience with chronic Lyme patients and will take your insurance.

Lyme disease is a lying bastard that hides in your body and tries to trick you into thinking it has gone away when it hasn’t. If you have the opportunity to kick its fucking face in, then do it. Follow up on those incompetent nurses and next year you may be able to write How Much It Cost Me When I Cured My Mysterious, Debilitating, Almost Undiagnosable Illness. I truly hope that you can.

I have a gluten allergy.. I was told it was either HIV, Parkinson’s or Huntington’s… I was so outrageously misdiagnosed.. that I thought i had a terminal illness. Nope.. just allergic to the shit wheat they feed us here.
We should be able to get a refund, if a doctor can’t or misdiagnosed
someone. Only fair. Look what we go through!!

I am from Italy, I want to share my testimony of how i got cured from HIV/AIDS. I contacted the virus through my husband who was having affair with other ladies outside marriage, After 1 year and 6months of carrying this deadly virus with my husband i was emotionally devastated because everything i have ever laboured for including my family was coming to an end until i saw a post on the interent posted by one Mrs Collen Bartlet on how she got healed by a spell caster through herbal medicine at first i doubted it but decided to give it a try, when i contacted the spell caster via email, he did same for me and i got cured and today me and my husband are cured and we are happily together again. Contact this great spell caster today for your health issues or cure to any sickness via email: ikedispiritualtemple@gmail.com

GP (#5,808)

Hi Lucas,
I know exactly what you are suffering from.
Your testimony is word for word of my personal testimony that I call “My Silent Illness”, and have suffered for forty years. When wireless technology began in the 1990s my health became worse.
I know of many musical people, who suffer exactly the same as you and me, and sadly many have taken their own life, and there are a number of musical people who are coping.
3 to 5% of the world population suffer the same as you and me. Lyme’s Disease diagnosis is a farce, as there is no positive test whatsoever. The medical scene is involved in a government cover-up. This disorder has been known since the 1880s and was labelled the “Society Disease”, but was referred to as Neurasthenia.
In 1930 the medical scene removed it from their diagnosis as it was drawing attention to the dangers and health risks and causing an embarrassment to the industrial output and military functioning. In fact today it has replaced asbestos and passive cigarette smoking, which has been banned from public place, work place and school place because of their health risks, and the wireless technology of today, has replaced the asbestos and cigarette smoke in those places with microwave radiation that is radiated from mobile phones, laptops, wireless guitars and sound equipment, and Wi Fi hotspots. Contact me!

Veronica (#5,815)

@GP I also suffer from the condition that ‘doesn’t really exist’ electromagnetic intolerance. I have been ill for 10 months now. I have found specialist who understands the illness but there really isn’t any treatments becasue the industry has effectively strangled any research in this area. Shame on the U.S. governmental agencies for stopping research on the governnment side. Shame on the industry for stopping independant research by withholding funds and by attacking rersearchers who dare tell the truth. Shame on the medical community for not taking the bull by the horns and helping all those who are suffering with this illness. Shame on the mental health industry for going way out of their expertese and trying to reseach a topic so in need of a multidiciplinary approach and using their “hammer” to diagnosis it a ‘nail’. (refering to the saying ‘if all you have is a hammer, then everything looks like a nail”). People are suffering and those who should be helping are wringing their hands and taking payments from a powerful and deceitful industry. When will the public wake up? When will the politicians get some intergrity? When will the damage being done fully rear its ugly head? How many will suffer? How many will die? How many will be demeaned, dismissed, stigmatized and marginalized? I’m guessing many, many will suffer before people wake up becasue this is a very powerful and influential industry that operates completely witoput a conscience. If you doubt that–take a look at who was made head of the FCC.

I have been suffering hardship from HIV/AIDS since 7yrs now, and i happen to have 2 kids for my husband, and now we cannot proceed to have another kids all because of my disease and now i have do all what a human like i and my husband can do just to get my disease healed, i havewent to several places to seek for help not even one person could ever help, until i melt a comment on the daily news paper that was commented by Desmond about how this powerful doctor help him get curedof the disease (HIV-AIDS) ” my fellow beloved” i firstly taught having a help from a African doctor was a wrong idea, but i think of these, will i continue to stress on these disease all day when i havesomeone to help me save my life?” so i gather all my faiths and put in all interest to contact him through his Email address at worldtreatmentforhiv@yahoo.com , so after i have mailed him of helping get my disease cured, he respond to me fast as possible that i should not be afraid, that he is a truthful and powerful doctor which ifirstly claimed him to be. So after all set has been done, he promise me that i will be healed but on a condition that i provide him some items and obeyed all he said. I did all by accepting his Words fact
and only to see that after some weeks of taking his herbal medicine i notice some changes in my body system and i went for check up the day he ask me to go for check up to confirm if the sickness was still there,to
my greatest surprise i could not find any sickness in my body i was first shocked and later arise to be the happiest woman on earth after i have concluded my final test on the hospital by my doctor that i am now
HIV- Negative. My papers for check are with me and now i am happy and glad for his miraculous help and power.
With these i must tell everyone who might seek for any help, either for HIV cure or much more to contact him now at these following email now, Email: Worldtreatmentforhiv@yahoo.com or you can contact me for confirmation oliviaphilip40@gmail.com “sir thank you so much for your immediate cure of my disease, i must say a big thanks for curing my disease, i owe you in return. Thanks and be blessed sir

olivia

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