My Daddy Died, I Cried and Cried
My battle with lupus, or whatever it is
My battle with lupus, or whatever it is
(March 20, 2011) The tiny, burning red dots began appearing under my eyes as I held Daddy’s hand in St. Mark’s Hospital during his final days. After he died, on May 10, 2010, and everyone else had left, I bent over to hold him, and the sobbing began. I stayed there, convulsed with grief, until the most beautiful, soulful nurse I have ever met, Veronica Mead, embraced me tearfully and told me I had to go. I removed his dementia bracelet, and I’ve worn it ever since. On the back, it has his name and phone number. On the front, it says, “Safe Return.”
I have never cried so hard and long in my life, and I still have a lot of it left to do. Within a week, the red dots had formed a bright, raised crimson half circle under each eye, with stray dots down my cheeks and into my temple. It was so swollen that I could see it just by looking down.
For me, going to a doctor is always a last resort -- it's generally a total waste of time and money. For three months, I took a “What Would Cleopatra Do?” approach to my rash, which had become more inflamed and monolithic. I tried yogurt, honey, olive oil, aloe, Vitamin E, flaxseed oil, cucumber slices. I tried nutritional supplements such as beta glucans, oil of oregano and olive-leaf extract. When natural remedies didn’t help, I tried antiviral, antifungal and antibacterial ointments. I dissolved aspirin in water and tried in vain to get an anti-inflammatory effect from it.
By then, it was starting to scare me. I was afraid that if it ever went away, it would leave significant scarring. So I arranged to see Salt Lake City dermatologist Brian Williams.
Hippocrates on his head: First, do no good
Dr. Williams strode into the examination room 55 minutes late, twirled toward me, and almost immediately declared, with a thrilling trill of triumph: “I know what you have! You have lupus!”
He was an oddly appealing hybrid of the brilliant, nerdy Timothy Geithner and a sweepingly macho toreador, minus the cape and tight pants. Given his persona, he could easily have become a mime or a mercurial actor in the world of European absurdist theater, or a pitchman for home-security systems. For some reason, he chose dermatology, a discipline to which he brought both a boyish earnestness and a sense of menace.
He ordered lab tests that he was confident would prove the diagnosis he had boldly pounced upon – lupus -- and said a biopsy would probably be required later.
I was devastated at the prospect of living with lupus. It is an autoimmune disease that can manifest itself merely as a florid rash (cutaneous lupus) or it can also attack the body’s internal organs, including the liver, kidneys, heart, bones and brain (systemic lupus). There has not been a new drug approved to treat this disease in 50 years.
“Is there anything I can do to prevent scarring in the meantime?” I asked. It’s perversely coincidental that the feature people compliment me about the most -- the smooth skin under my eyes – is the very part of me that was being eaten alive by this flaming monster.
“Oh, there’s scarring already -- I can see it,” the doctor replied cavalierly.
Three weeks later, Dr. Williams called to inform me that the lab work supported his diagnosis of systemic lupus, although the data weren‘t 100 percent conclusive. The report indicated elevated Anti-Nuclear Antibodies (ANAs) and Double-Strand DNA levels, as well as liver and kidney abnormalities -- all key markers for the disease. The ANAs indicate auto-immunity: Your immune system, instead of attacking alien invaders as the Good Lord intended, attacks you.
Ironically, I love my immune system, and have for years done everything I could to build it into a Big Mean War Machine, poised to decimate any bug that was reckless and tasteless enough to enter the domain of my body. Now I felt like a benevolent dictator whose army has inexplicably turned against me. There used to be a band in Britain called “The Kronstadt Uprising,” and that phrase resonated with the chaos I imagined unfolding in my bloodstream.
Two therapists I know, one here and one in New York, said they suspected that this outbreak was triggered by my father’s death. Not by all that crying, which had been my first thought, but by the grief. They said that emotional trauma and other stressors can trigger an autoimmune disease in someone who is predisposed.
My blood pressure and heart rate, which had been very low all my life, were dramatically elevated, and my blood oxygen level, which had always been very high, was disturbingly low. Dr. Williams urged me to see Christopher Hansen -- a University of Utah dermatologist who specializes in cutaneous lupus – as well as a rheumatologist, who would address the systemic aspects of the disease.
“I am not going to take prednisone,” I declared. This was the most commonly used drug for lupus, I had read, and it didn’t seem worth it to me. It essentially kills your immune system – leaving you vulnerable to every bug out there, and to cancer as well – and it has an array of other side-effects, including bone loss.
“No, you’ll be on anti-malarials, which are much worse,” Dr. Williams said with apparent enjoyment. “They turn your skin blue-gray and destroy your retinas.”
(Note to the American Society for Psychiatric Dermatology – if there isn’t one, let’s get going on it – Please do an assessment of this doctor’s sadistic tendencies. He seems to relish delivering bad news, and he makes no effort to comfort or reassure the patient. Does he do this with everyone, or did I just bring out some evil streak in him, remind him of his emasculating mother, a luscious-but-treacherous ex-wife, etc.? For some reason, I am actually fond of the guy, but I do think some intervention is called for.)
He ordered lab tests that he was confident would prove the diagnosis he had boldly pounced upon – lupus -- and said a biopsy would probably be required later.
I was devastated at the prospect of living with lupus. It is an autoimmune disease that can manifest itself merely as a florid rash (cutaneous lupus) or it can also attack the body’s internal organs, including the liver, kidneys, heart, bones and brain (systemic lupus). There has not been a new drug approved to treat this disease in 50 years.
“Is there anything I can do to prevent scarring in the meantime?” I asked. It’s perversely coincidental that the feature people compliment me about the most -- the smooth skin under my eyes – is the very part of me that was being eaten alive by this flaming monster.
“Oh, there’s scarring already -- I can see it,” the doctor replied cavalierly.
Three weeks later, Dr. Williams called to inform me that the lab work supported his diagnosis of systemic lupus, although the data weren‘t 100 percent conclusive. The report indicated elevated Anti-Nuclear Antibodies (ANAs) and Double-Strand DNA levels, as well as liver and kidney abnormalities -- all key markers for the disease. The ANAs indicate auto-immunity: Your immune system, instead of attacking alien invaders as the Good Lord intended, attacks you.
Ironically, I love my immune system, and have for years done everything I could to build it into a Big Mean War Machine, poised to decimate any bug that was reckless and tasteless enough to enter the domain of my body. Now I felt like a benevolent dictator whose army has inexplicably turned against me. There used to be a band in Britain called “The Kronstadt Uprising,” and that phrase resonated with the chaos I imagined unfolding in my bloodstream.
Two therapists I know, one here and one in New York, said they suspected that this outbreak was triggered by my father’s death. Not by all that crying, which had been my first thought, but by the grief. They said that emotional trauma and other stressors can trigger an autoimmune disease in someone who is predisposed.
My blood pressure and heart rate, which had been very low all my life, were dramatically elevated, and my blood oxygen level, which had always been very high, was disturbingly low. Dr. Williams urged me to see Christopher Hansen -- a University of Utah dermatologist who specializes in cutaneous lupus – as well as a rheumatologist, who would address the systemic aspects of the disease.
“I am not going to take prednisone,” I declared. This was the most commonly used drug for lupus, I had read, and it didn’t seem worth it to me. It essentially kills your immune system – leaving you vulnerable to every bug out there, and to cancer as well – and it has an array of other side-effects, including bone loss.
“No, you’ll be on anti-malarials, which are much worse,” Dr. Williams said with apparent enjoyment. “They turn your skin blue-gray and destroy your retinas.”
(Note to the American Society for Psychiatric Dermatology – if there isn’t one, let’s get going on it – Please do an assessment of this doctor’s sadistic tendencies. He seems to relish delivering bad news, and he makes no effort to comfort or reassure the patient. Does he do this with everyone, or did I just bring out some evil streak in him, remind him of his emasculating mother, a luscious-but-treacherous ex-wife, etc.? For some reason, I am actually fond of the guy, but I do think some intervention is called for.)
You Want a Piece of Me? Just a tiny one
Dr. Christopher Hansen was fully booked for two months. I was unwilling to wait that long to get a biopsy and some more input on this whole lupus specter.
I made an appointment to see Dr. Doug Woseth. He is a very kind, patient, gentle, modest and somewhat shy young man. No bit fat doctor's ego for him -- he is just plain sweet. He laughs with a slight discomfort, which only adds to his considerable charm. He is so clean that one wants to hug and smell him. He delicately examined me and said he was quite certain that I didn’t have systemic lupus, but he cut out a sliver of my inflamed skin to determine whether I had the cutaneous form.
Dr. Woseth persuaded me to try the triamcinolone steroid cream that I had refused when Dr. Williams suggested it. Steroids are notorious for causing skin thinning, and the skin around your eyes is already the thinnest on your body. Even the manufacturer warns that it should not be used on the face “and particularly not under or near the eyes.” It can literally cause the skin to tear and shred. I was aware that it is widely prescribed anyway, to treat persistent lupus rashes, but I was concerned.
Dr. Woseth said, “It won’t hurt to use it for a couple of weeks to clear this up.” So I got some. When I took off my sunglasses and showed the pharmacist where I was going to apply it, she said, “You have got to be kidding. Don’t do it.”
Steroids are as effective as they are destructive. By this time, my rash had been in full flare for more than four months, but there was substantial improvement within days of beginning the triamcinolone. I have since learned from my research that many people with lupus and other serious skin conditions are initially delighted with the healing effect of the steroid cream, but then as soon as they stop using it – and you do need to use it sparingly and briefly – their condition roars back, full-force.
My biopsy results came back a week later and were “consistent with Lupus erythematosus,” according to the pathologist.
Doctor Dreamy Dares to Doubt
The Golden Boy of cutaneous lupus, Dr.Christopher Hansen at the U., got a break in his schedule, and I saw him a few days later. He told me that I needed to stop using the steroid cream immediately. The damage that I had feared apparently was occurring already; he mentioned skin atrophy and telangiectasiae (dilated superficial blood vessels). A visible, burning slit was developing at the outer corner of each eye as the tissue degraded.
The youthful Dr. Hansen is so thoughtfully “designed” as a physician that he almost seems like some sort of avatar. He is everybody’s dream doctor: handsome, earnest, authoritative, reassuring. Someone has programmed him with “excellent eye contact” software, which is quite lifelike. He managed to be extremely businesslike, enforcing the proper professional distance, while also conveying what seemed to be honest compassion. He asked lots of questions (very good ones), listened well, scrutinized and examined me (after washing his hands, thank god -- how often does that happen?) He even inquired about my professional and personal history and my current life, as if he actually cared who I am as a person -- almost unheard of these days. It was clear that he was really thinking – trying to solve this puzzle and to help me -- which ought to be the norm in the medical profession but most certainly is not. His pat on my shoulder was not the norm, either, and I appreciated the gesture. When I asked him a couple of questions about himself, he responded in the royal “we,” which could have reflected either grandiosity or humility, but either one was fine with me.
He ordered more lab work and said he wanted to examine the lupus-positive biopsy himself. He had his doubts that my rash was cutaneous lupus, and he was even more doubtful that I had systemic lupus.
Within 36 hours of discontinuing the steroid cream, as per the doctor’s instructions, the rash had flared back alarmingly. Even so, I was glad I wasn’t using the product anymore. I asked Dr. Hansen to prescribe a nonsteroidal anti-inflammatory ointment for me to try, even though his assistant had told me that the so-called TCIs aren’t very effective.
I began applying the Protopic ($130 per tube) but the inflammation it caused was intolerable, so I had to stop. The rash was creeping back in a whole new configuration, evolving from a broad red swath under each eye into an ever-changing assemblage of dense, small, very uncomfortable red bumps. They burned and itched, and it felt as if tiny worms were emerging from my pores. Each day, when I couldn’t stand it any longer, I knocked myself out with tranquilizers and got into bed with my cat.
Dr. Hansen emailed me about the lab work and said, “I see no evidence for any systemic involvement of lupus…I believe the risk of you developing systemic lupus based on your labs to be remote.”
He still had not received my biopsy, which he reiterated that he wanted to assess for himself.
At this point, having endured this painful and grotesque malady for more than five months, I still had no definitive answer. One doctor believed I had systemic and cutaneous lupus; one believed I had only the cutaneous form; one wasn’t at all sure I had either one.
A Queen of Karma, Bereft of Benevolence
While I waited for Dr. Hansen to re-evaluate the biopsy, I saw rheumatologist Dr. Shruti Sanghvi at the Salt Lake Clinic. I chose her for reasons my late father would probably describe as reverse discrimination. I chose her because she is from India, and in my experience, people – especially doctors – from India are particularly intelligent, competent, empathetic and charming.
I later thanked her for reminding me that GENERALIZATIONS ARE STUPID (although I continue to cling uncritically to my open-hearted love for black and hispanic people).
She floated into the examination room as if she were the Goddess of Healing, with her white lab coat over a violet sari. She had a subtle hint of mirth and serenity in her large eyes, and a comforting fullness to her face and body that reminded me of Buddha, which I know is the wrong country and the wrong religion, but that’s what I saw. She expressed a lighthearted curiosity about what made me tick. She said she admired my vegan diet and my exercise regimen, and she found the fact that I had embraced this lifestyle while I was still drinking heavily and smoking to be quite amusing.
After briskly skimming through my blood work and biopsy results, and then pressing a few joints on my fingers and toes, and sweeping her arms around me, as if she were reading my aura, she declared that I had “multiple connective tissue abnormalities” and diagnosed me with both fibromyalgia and systemic lupus. She urged me to begin taking an antimalarial drug right away. “You could have kidney failure at any time, without warning,” she said. “You could wind up on dialysis. You could wind up on a transplant waiting list. Even if the rash goes away, the disease can flare internally and damage major organs catastrophically.”
I should have been devastated, but in my gut, I didn’t believe I had lupus. Her New-Agey examination had seemed like something out of “Saturday Night Live.” I asked the doctor what made her so sure. She showed me a list of criteria that are used to diagnose the disease and said that if a patient meets four of the criteria, it indicates lupus. When she pointed out which criteria applied to me, I was even less convinced. Each symptom was so minor, and could have indicated so many other conditions, that it simply wasn’t persuasive. The only exception was what is known as a “malar” or “butterfly” rash, which is so distinctive that it is a very strong indicator of lupus. I told her that I never had this formation, which extends over the bridge of the nose and down onto each cheek. I showed her a picture of my rash at its worst, and it clearly wasn’t malar. She seemed taken aback but didn’t retreat from her diagnosis. She gave me no resources to deal with this very complex and amorphous disease, except for a pamphlet from the Lupus Foundation.
As she left the room, she said, “I am very sorry this is happening to you. It must be due to Karma.”
I rushed to open the door and called out down the hall, “Doesn’t Karma mean I did something to deserve it?”
She turned, smiling inscrutably, and replied, “Maybe in a previous life.”
A few days later, I informed her by email that Dr. Chris Hansen had just emailed me his own assessment of the biopsy: “There were some features suggestive of lupus but I would not make the diagnosis based on the biopsy alone, There is inflammation in the upper skin with different types of immune cells, but not in a pattern that is specific for any particular diagnosis. The diagnosis remains a mystery.”
Nevertheless, Dr. Sanghvi never expressed any second thoughts about her diagnosis. Since I refused to take the antimalarial drug, she suggested that I come back in two months for more lab work, to assess my level of autoimmunity and to monitor my kidney function.
Brash Questions, Rash Indifference
By November 2, I had lived with the rash for six months. Upon reviewing my new labs, Dr. Sanghvi announced that I did not have lupus after all and left the room. I was stunned by this sudden, inexplicable turnaround. Her positive diagnosis had never seemed credible to me, but then neither did this negative one. I felt totally lost and confused. I mailed her some questions, hoping to get a clearer picture of where things stood:
My Anti-Nuclear Antibody numbers, as we discussed, continue to be abnormally high. What are the implications of this?
Does the elevated ANA mean that I have an autoimmune disease of some sort, even if it’s not lupus? If not, what does it mean?
Do I need to be retested regularly?
Does my kidney function need to be monitored?
Is the rash under my eyes likely caused by the ANA issue, or do you think they are separate phenomena?
Since I exhibited enough of the criteria in September to be diagnosed with lupus but not enough in November, is it possible that in January I will once again face the prospect of a lupus diagnosis?
There are several other readings that are out of range and that I don't understand, but the most concerning for me are the references to my “high chromatin antibody level,” which is described in the report as a frequent "early marker" of systemic lupus. Shouldn’t I follow up on this?
She never replied. I had paid her well over $400, and all I'd gotten was two contradictory diagnoses, each delivered with an air of absolute confidence. She left me with nothing but bewilderment and despair. She obviously couldn't care less, as she made clear by refusing to answer obvious and important questions.
"When were you mistaken?" I wrote to her, regarding the lupus-positive diagnosis (with its attendant scare-mongering and a prescription for a terrible drug) followed by the lupus-negative diagnosis. "How and why were you mistaken? Do you just keep charging people and then dismissing them, without explanation, every time you are mistaken?"
It has been my experience that the doctors who charge the most tend to care the least about the welfare of their patients, and Shruti Sanghvi surely corroborated that impression. Her bill for our initial cursory and superficial appointment was the most I have ever been charged by any doctor, including a high-powered, no-nonsense neurosurgeon (female) and a sleek, perfumed, artfully vain endocrinologist (male).
Meanwhile, the rash has changed in its appearance and ‘behavior’ several times over seven months. When it looked so grotesque that people averted their eyes – out of horror and/or politeness -- it caused little discomfort. As it dispersed, became less dense and more spotty, it became increasingly uncomfortable, especially at night. It flared when I was hot, upset, exerting myself, eating a warm, spicy meal and after my shower. It had ocular manifestations as well: my eyes were inflamed, gritty and exuded pus. I had wiped several floating, clear membranes from each eyeball.
I reached out again to Doug Woseth, who suggested that we do an extensive allergy test – which involved having dozens of allergens arrayed on my back for a week – and if nothing showed up, he would arrange for me to be seen at the University of Utah dermatology department’s Grand Rounds, which “is reserved for the most difficult and mystifying cases.” This was a very gracious and generous gesture on his part.
No allergic reactions occurred, so my “appearance” was scheduled for December 17.
No grandeur, but the paparazzi were nice
The prospect of Grand Rounds, which enables one to be scrutinized, assessed and discussed by some of the finest dermatologists in the state, seemed like the best chance I could have of finally learning what was happening to me. I received a notice in the mail from the U.’s dermatology clinic, alerting me to the fact that that the doctors would not be taking the time to introduce themselves or even to speak to me, which seemed as rude and intimidating as a notice I once got ordering me to appear for jury duty “under penalty of law.” I decided that – depending on my mood that day -- I would either put up with this frigid, clinical atmosphere or I’d make remarks that were so provocative, they wouldn’t be able to resist interacting with me.
Despite the coldness of the “invitation,” there was something inherently humorous in the phrase “Grand Rounds,” and I thought it would be fun to show up in a ball gown. I imagined that I would feel like both a starlet and a specimen, and that’s kind of how it turned out.
I was taken to a clinic room and told to sit on the examination table. For the first ten minutes or so, I was questioned by some very thoughtful, respectful medical students or residents. I don’t think they were very interested in me, but they did their best to come up with pertinent questions. They were so polite that they requested my permission before touching me.
Then came the paparazzi, a stampede of the Real Doctors into the small room, many of whom, according to the state’s database on public employee salaries, earn $650,000 to a million dollars annually. The cellphone cameras began flashing around me. "Turn this way, turn that way, over here please, could you toss your hair back a bit, that’s perfect, close your eyes, lift your chin, you’re doing fine!" I tried not to grin at the nuttiness of this scene – I was a serious star! They seemed like very ordinary guys, pals from a bowling league perhaps. I realized I had been silly to expect that they would fit a certain mold: tall, slender, well-dressed, serious and reserved. One was examining my scalp for hair loss – a side effect of lupus. Another scrutinized my rash, saying merely: “I’ll be damned.” One squinted at my chest, while another pressed around my ankles. They did introduce themselves, and they did ask questions, contrary to the department’s notice. Eventually, they seemed most interested in my hands, which have changed in appearance quite a bit in the past 20 years. I have attributed both the variations in color and a metamorphosis in the shape of my fingers and nails to my past history of smoking. The oxygen deprivation caused by cigarettes often manifests itself this way. It didn’t take long before the cellphones began flashing again as they took shots of my hands, while my poor, wracked facial skin became yesterday’s celebrity.
They all thanked me heartily and whooshed out the door. It was only then that I saw Dr. Woseth, who had been hidden from view, sitting there patiently in the corner. I felt as if I’d had a guardian angel with me all along, and I wished I had known. I gave him a hug – that darling guy – and went home to await the Wise Men’s assessment.
An “Unremarkable” Patient
“Don’t take it personally – it’s medical jargon,” Dr. Woseth reassured me later that afternoon. “By ‘unremarkable’ they just mean that nothing jumps out at them to explain your symptoms.” The Grand Rounds doctors’ only recommendation, he added, was that I get a CT scan of my lungs. “In very rare cases, organ cancers can have a cutaneous manifestation,” he said.
I had been wanting to get a scan of my lungs anyway. Even though I quit smoking about eight years ago, I will always be concerned about cancer. The scan came back normal.
Dr. Woseth recommended that I return to the U. for advanced allergy testing and a very refined biopsy, but I was through, at least for now, with the medical establishment. I often read about people who had to see 20 or 30 doctors before they got an accurate diagnosis, but I was too disillusioned, exhausted and pissed off for that. I would just live with this torment and be grateful that I didn’t have ALS or multiple sclerosis or a brain tumor.
It had been eight months since I had looked reasonably normal, and I had become accustomed during that time to people being taken aback by the bright-red swelling, peeling, hardening and oozing of the skin under my eyes. (Nobody would actually look at me, except for babies. They stared right into my eyes, and I really believe they felt something akin to compassion, as well as curiosity. A few even reached their arms toward me.) I wondered if I could ever grow accustomed to the excruciating, crawly discomfort and accept it stoically. People in poor countries have flies on their faces and in their eyes all the time, and they don’t pay any attention to it. So they would be my new role models for dignity and forbearance.
Fortifying My Colonial Empire
The colon is a magical place, which serves many purposes other than as a subway for excrement. Most of our immune system resides there, and most of our serotonin -- the neurotransmitter and mood modulator -- is produced there, which is one reason that the colon known as “The Second Brain.” Millions of bacteria, or maybe it’s billions (three or four pounds, I’ve read), reside in the colon. The “good” bacteria keep the “bad” ones in check. Taking probiotic supplements augments the good guys and is regarded in many parts of Europe and Asia as essential to health.
Meanwhile, the rash has changed in its appearance and ‘behavior’ several times over seven months. When it looked so grotesque that people averted their eyes – out of horror and/or politeness -- it caused little discomfort. As it dispersed, became less dense and more spotty, it became increasingly uncomfortable, especially at night. It flared when I was hot, upset, exerting myself, eating a warm, spicy meal and after my shower. It had ocular manifestations as well: my eyes were inflamed, gritty and exuded pus. I had wiped several floating, clear membranes from each eyeball.
I reached out again to Doug Woseth, who suggested that we do an extensive allergy test – which involved having dozens of allergens arrayed on my back for a week – and if nothing showed up, he would arrange for me to be seen at the University of Utah dermatology department’s Grand Rounds, which “is reserved for the most difficult and mystifying cases.” This was a very gracious and generous gesture on his part.
No allergic reactions occurred, so my “appearance” was scheduled for December 17.
No grandeur, but the paparazzi were nice
The prospect of Grand Rounds, which enables one to be scrutinized, assessed and discussed by some of the finest dermatologists in the state, seemed like the best chance I could have of finally learning what was happening to me. I received a notice in the mail from the U.’s dermatology clinic, alerting me to the fact that that the doctors would not be taking the time to introduce themselves or even to speak to me, which seemed as rude and intimidating as a notice I once got ordering me to appear for jury duty “under penalty of law.” I decided that – depending on my mood that day -- I would either put up with this frigid, clinical atmosphere or I’d make remarks that were so provocative, they wouldn’t be able to resist interacting with me.
Despite the coldness of the “invitation,” there was something inherently humorous in the phrase “Grand Rounds,” and I thought it would be fun to show up in a ball gown. I imagined that I would feel like both a starlet and a specimen, and that’s kind of how it turned out.
I was taken to a clinic room and told to sit on the examination table. For the first ten minutes or so, I was questioned by some very thoughtful, respectful medical students or residents. I don’t think they were very interested in me, but they did their best to come up with pertinent questions. They were so polite that they requested my permission before touching me.
Then came the paparazzi, a stampede of the Real Doctors into the small room, many of whom, according to the state’s database on public employee salaries, earn $650,000 to a million dollars annually. The cellphone cameras began flashing around me. "Turn this way, turn that way, over here please, could you toss your hair back a bit, that’s perfect, close your eyes, lift your chin, you’re doing fine!" I tried not to grin at the nuttiness of this scene – I was a serious star! They seemed like very ordinary guys, pals from a bowling league perhaps. I realized I had been silly to expect that they would fit a certain mold: tall, slender, well-dressed, serious and reserved. One was examining my scalp for hair loss – a side effect of lupus. Another scrutinized my rash, saying merely: “I’ll be damned.” One squinted at my chest, while another pressed around my ankles. They did introduce themselves, and they did ask questions, contrary to the department’s notice. Eventually, they seemed most interested in my hands, which have changed in appearance quite a bit in the past 20 years. I have attributed both the variations in color and a metamorphosis in the shape of my fingers and nails to my past history of smoking. The oxygen deprivation caused by cigarettes often manifests itself this way. It didn’t take long before the cellphones began flashing again as they took shots of my hands, while my poor, wracked facial skin became yesterday’s celebrity.
They all thanked me heartily and whooshed out the door. It was only then that I saw Dr. Woseth, who had been hidden from view, sitting there patiently in the corner. I felt as if I’d had a guardian angel with me all along, and I wished I had known. I gave him a hug – that darling guy – and went home to await the Wise Men’s assessment.
An “Unremarkable” Patient
“Don’t take it personally – it’s medical jargon,” Dr. Woseth reassured me later that afternoon. “By ‘unremarkable’ they just mean that nothing jumps out at them to explain your symptoms.” The Grand Rounds doctors’ only recommendation, he added, was that I get a CT scan of my lungs. “In very rare cases, organ cancers can have a cutaneous manifestation,” he said.
I had been wanting to get a scan of my lungs anyway. Even though I quit smoking about eight years ago, I will always be concerned about cancer. The scan came back normal.
Dr. Woseth recommended that I return to the U. for advanced allergy testing and a very refined biopsy, but I was through, at least for now, with the medical establishment. I often read about people who had to see 20 or 30 doctors before they got an accurate diagnosis, but I was too disillusioned, exhausted and pissed off for that. I would just live with this torment and be grateful that I didn’t have ALS or multiple sclerosis or a brain tumor.
It had been eight months since I had looked reasonably normal, and I had become accustomed during that time to people being taken aback by the bright-red swelling, peeling, hardening and oozing of the skin under my eyes. (Nobody would actually look at me, except for babies. They stared right into my eyes, and I really believe they felt something akin to compassion, as well as curiosity. A few even reached their arms toward me.) I wondered if I could ever grow accustomed to the excruciating, crawly discomfort and accept it stoically. People in poor countries have flies on their faces and in their eyes all the time, and they don’t pay any attention to it. So they would be my new role models for dignity and forbearance.
Fortifying My Colonial Empire
The colon is a magical place, which serves many purposes other than as a subway for excrement. Most of our immune system resides there, and most of our serotonin -- the neurotransmitter and mood modulator -- is produced there, which is one reason that the colon known as “The Second Brain.” Millions of bacteria, or maybe it’s billions (three or four pounds, I’ve read), reside in the colon. The “good” bacteria keep the “bad” ones in check. Taking probiotic supplements augments the good guys and is regarded in many parts of Europe and Asia as essential to health.
I have been taking probiotics for about 20 years, but I always got the least expensive variety, which contains only two strains of flora. At the end of January, I came across a half-price sale of a probiotic blend that contains 12 strains.
I bought a bottle, and within 36 hours, my skin was normal. Not a trace of the rash remained.
I find it hard to believe that probiotics could have “cured” me of a complex malady that had persisted for nine months. It definitely wasn’t a placebo effect, though, because it never occurred to me that the probiotics would influence the rash until I later read that dysbiosis -- an imbalance in the gut flora -- can cause autoimmune diseases as well as those I had already known about. I couldn’t think of anything else that had could have caused this radical reversal. When I told Dr. Chris Hansen about this, he emailed me: “I am willing to believe anything about your rash, because it was so unusual.” He added, “I think you are right on with the idea that in some cases the diagnosis of lupus is more of an art than a science. I reviewed your biopsy again with a few additional pathologists and I am even more convinced that lupus is not the correct diagnosis.”
But what is? Nobody knows. I think this happens in medicine more than most of us realize, and I believe that medicine is still quite primitive in many ways, despite all of its remarkable advances.
I have not been cured. My laboratory numbers still indicate that some autoimmune process is going on. I can feel the rash lurking under my skin, and it surfaces as a pink-purple shadow if I am hot or agitated or even animated. Just smoothing some moisturizer gently under my eyes turns the skin bright red for a few minutes. And at night, I can often feel the little worms in my pores getting restless, wanting to emerge. Usually, a cold washcloth is all that is required to smack them down, and usually I look and feel normal once again.
I guess I will forever be braced for another flare.
UPDATES TO THIS ARTICLE WERE POSTED ON APRIL 4 and July 21, 2011 AND ON January 14 and October 26, 2012.
I have not been cured. My laboratory numbers still indicate that some autoimmune process is going on. I can feel the rash lurking under my skin, and it surfaces as a pink-purple shadow if I am hot or agitated or even animated. Just smoothing some moisturizer gently under my eyes turns the skin bright red for a few minutes. And at night, I can often feel the little worms in my pores getting restless, wanting to emerge. Usually, a cold washcloth is all that is required to smack them down, and usually I look and feel normal once again.
I guess I will forever be braced for another flare.
UPDATES TO THIS ARTICLE WERE POSTED ON APRIL 4 and July 21, 2011 AND ON January 14 and October 26, 2012.
Postscript: Benlysta, the first new treatment for lupus in a half-century, won U.S. approval on March 9, 2011. It sounds as if the drug will mainly benefit its manufacturer, which expects sales of $3 billion to $5 billion dollars annually. It will cost $35,000 per year. It must be used in conjunction with existing therapies, which often have devastating side effects. Its use is not recommended for patients with lupus that has caused severe kidney or central nervous system problems.More deaths and serious infections were reported with Benlysta compared with a placebo in clinical studies.
