The Story of Patient X
One man's journey through the medical system
to discover that he is a victim of syphilis
In early March while away on a trip to eastern Canada, Patient X became sick with terrible flu-like symptoms and then a mysterious measles-like rash of small red dots which eventually covered most of his upper torso, eventually creeping out from under his collar. For a week and half he could not eat, felt constantly nauseous, suffered from constant severe chills, developed a mild case of pneumonia and lost 15 lbs. "But the most frightening thing," he said, was the complete lack of energy, I could barely get out of bed."
Eventually Patient X went to the emergency ward at the small city hospital. The doctor assigned was most concerned about the lethargy, depression and pneumonia, and ordered a chest x-ray. They patient's blood was tested, in part to see if there was any liver damage. He was given antibiotics to treat his pneumonia. The he patient's rash was of little concern as it didn't itch. The doctor had to be prompted about the rash at the end of the interview, and he said that it was not important, called "[something] rosacea" and would clear up without treatment, but could last as long as three months. Indeed, the rash cleared up within a week. However, when Patient X returned home to Vancouver he became increasingly concerned about his continued lack of energy and appetite.
Unwittingly, Patient X booked an appointment with one of Vancouver's leading HIV experts. This doctor shared an office with the patient's former GP, who had since moved his practice. The doctor announced to Patient X that he had obviously seroconverted for HIV. The flu-like symptoms and the rash in combination with an account of the patient's recent sexual history seemed conclusive. "We'll just get the blood work out of the way," he said and the doctor ordered some blood tests, including an HIV test.
"I don't know how they didn't pick up on it at the hospital," the doctor noted. "Luckily, it's not the 1980s, there are lots of options," says the expert doctor, as he sweeps his arm along a poster on the wall behind him which is covered in pictures of colourful pills. "We'll have you feeling better in a couple of months." Patient X was alarmed by both this doctor's immediate diagnosis and his flippant behaviour, so much so that Patient X never returned to this doctor's office.
As the days grew longer through spring and summer Patient X began to worry more and more about the state of his health, constantly rubbing the swollen (but not tender) glands in the back of his neck. He was certain that the lymphadenopathy was some sign that he was not in perfect health. Rather than return to work, Patient X opted for more rest and recreation. He regained his appetite and put on 23 lbs, but the glands in the back of his neck remained constantly swollen.
Patient X seemed otherwise fit and healthy, until he was plagued with a series of mysterious maladies which seemed to coincide with the increased swelling of the glands in the back of his neck. The glands under his jaw remained more or less normal. First, the patient's nose became sore on the inside and red and extremely swollen, the swelling slowly spreading his cheeks on either side. The patient went to the free clinic and was diagnosed with sinusitis, and recommended over-the-counter medication. "Antibiotics are rarely successful in treating sinusitus, stay out of the sun, don't go swimming," was the doctor's advice. Walking home from the clinic, X espressed to me, that he knew there was some kind of infection inside his nose, and that it wasn't sinusitis. He was unsatisfied with his experience at the clinic. Patient X went to Chinatown to an apothecary and purchased a couple inexpensive Chinese herbal remedies and began taking echinacea, and the infection in his nose responded and seemed to completely cleared up.
A few weeks later X became increasingly alarmed about "a hole being eaten into my gums." In a week and a half a hole in the gum between his front teeth had advanced so much that it exposed some of the tooth's root. Once again Patient X made the trip to the free walk-in clinic. At first the clinic didn't want to make an appointment for X, because his concern was dental, not medical. Patient X had to insist that this was some sort of strange infection.
After examination the clinic doctor seemed quite alarmed and stated that the amount of gum damage that had occured in only a week and half should have taken over a year in a normal gingivitis case. When Patient X described his swollen glands the doctor examined them, then noted that the glands in X's armpits also seemed slightly swollen. Again Patient X was asked if he had been tested for HIV. The doctor gave the patient a small zip-lock bag full of antibiotics. "If these don't start working within a couple of days, you will have to be admitted to hospital for intravenous antibiotics." The treatment did seem to halt the progression of the lesion. Throughout this time period X continued to suffer from sleeplessness.
As summer faded into September Patient X continued to grow more anxious about the state of his health. His energy level was decreasing again and his sleeplessness became more pronounced. Again X suffered from a lack of appetite and he lost 10 lbs. Patient X still seemed continually agitated by something inside his nose, and there still seemed to be some lesion activity in his gums, regardless of his meticulous brushing, flossing and rinsing with antiseptic mouthwash. The lymphodenopathy in the back of his neck was still constant, and seemed to increase whenever he felt most unwell.
In early October a red dot appeared on X's stomach, and within a week a rash developed and began to spread over his upper torso. Over the course of a couple of weeks, the rash continued to spread, on to his arms and legs and up his neck. Again the patient suffered from continual fatigue now coupled with the inability to focus, along with chronic sleeplessness. A rash also developed on his scalp which, unlike that on the rash on the rest of of his body, was itchy and irritating. He had now also developed a persistent, shallow cough.
By the end of October the earlier bumps of X's rash began to scale over and a few filled with fluid. The worst node was on his stomach, where the original red dot had first appeared. Back to the free clinic Patient X went. Once again the patient was asked if he had been tested for HIV, and he was offered another HIV test. He was sent to another medical clinic with a blood requisition, which this time included a syphilis test and a white blood count. He was to return in two weeks for the results of his blood work.
The rash progressed rapidly now, covering most of the patient's body including his face except for his genitals, his hands and his feet. X couldn't sleep at all at night and suffered from chronic pains "shooting through his arms and legs." He had absolutely no energy and spent most of the day and night in his bed. His frustration, anxiety and depression deepened. A search for "tertiary syphilis, photos" at Google produced several excellent resources about syphilis, the most useful of which was from San Francisco City Clinic website. (www.dph.sf.ca.us/sfcityclinic/stdbasics/syphilis.asp)
Rather than wait for an appointment, X and I hurried back to the free clinic. On the way into the examination room, the fourth year medical student was informed that X was in for his blood results, but that the results wouldn't be in until mid next week. The med student neglected, at first, to inform us that he wasn't the doctor, but he was compassionate and took the time to actually listen to the patient's woes and worries. Patient X had to point out to the med student that indeed the results of his blood work were right there on top of his file in plain view. "We want to know the results of the syphilis test." The syphilis test was negative. Also the lymphocyte count was normal, indicating that Patient X was not fighting any infection.
We queried the student about the accuracy of syphilis testing. "All of the symptoms are consistent with symptoms for secondary syphilis described on the website." We detailed all the symptoms Patient X had experienced, including a new tenderness in his abdomen. "What organ is right here?" X asked. "Your liver," was the student's reply. The med student went for the doctor. The doctor eventually came in, after the student had been gone for a long while. The doctor was confident that the syphilis test could not be wrong. Any margin for error occured with false positive results. Again Patient X was offered an HIV test. She informed the patient that the rash looked like "parapsoriasis." The cause for this rash is not known, but that it typically goes away on its own in six to eight weeks. Sometimes it can be treated with cortisone. The doctor cut X off once he started to talk about his cough. She gave Patient X a referral to a dermotologist and he got an appointment for the following week.
The dermatologist was an older doctor, a leading skin expert who had been practicing medicine since the 1960s and teaching dermatology for 30 years. He noted that he had some idea what the rash might be, but wanted to wait for biopsy results before making a diagnosis. He took a biopsy and X made an appointment for the following week, to receive the results. "It's not contagious or infectious, so you don't have to worry."
The rash seemed to spread even more rapidly now. The patient's energy levels dropped to an all new low. By the time it came time to go to see the dermatologist for biopsy results, the rash had completely covered the patient's face and was beginning to express itself on the palms of his hands and the soles of his feet. When we arrived at the dermatologist's office, we were informed that the pathologist's report on the biopsy had not yet arrived. The dermatologist seemed quite concerned. After talking the pathologist on the phone he returned to the examination room and asked patient X if he could come to the Skin Care Centre at the Vancouver Hospital the following day, to be examined by a group of dermatologists and students so that they might put their heads together to determine a diagnosis and possible treatment. Patient X would also be photographed. "These are regular monthly meetings where dermatologists bring their special cases. These sessions are also used to educate dermatology students." The dermatologist also informed us that the pathologist would be bringing slides of the biopsy. X agreed, "As long as my friend can come." The dermatologist did say that he thought he knew what the rash was but he had never seen such a severe case. "You sure got your share of it." X could phone later in the day after the session to find out what the group of doctors had come up with.
By this time, X is completely exhausted. He barely eats and still complains of the pains in his legs and arms. He can't sleep at all. His face is completely covered now in this angry rash. It's even inside his ears. The rash is so severe on his face and head that he had been unable to shave or properly wash his hair. The rash on his body has become tender to knocks and scratches, which was discovered when he was jumped up on by a dog. Deciding to dress up some for this event both of us joked about what a strange way it was to become famous. A friend who's a hair stylist paid a visit and X got a great, short cut, then he trimmed his beard as short as possible with an electric trimmer. The next day we both put on our suits and foregoing ties we headed off to the hospital in a taxi.
When we arrived on the third floor, X and I were escorted to an examination room, where X removed his clothing on put on the pale blue gown provided for him. We were immediately visited by three expert doctors, who introduced themselves and began examination.
"Can I see your hands? Can I see your feet? Is it itchy?"
"Only on my scalp and face."
"Can I see inside your mouth? When did the rash start? Have you been travelling?"
Stripped to his underwear, eventually X had to remove those too, so that the bumps on either side of his testicles could be examined after which he was handed his briefs to put back on. One of the three doctors was the pathologist from St. Paul's Hospital, who had examined X's biopsy. The pathologist explained to me why the case was highly unusual. The slide prepared from the biospy was consistent with a textbook example of syphilis. Now having examined the patient himself he would still conclude that this was a case of secondary syphilis. After the first three doctors left, Patient X was visited by about three groups of seven or more students. Poking and prodding, they asked all the same questions over and over.
"Can I see your hands? Can I see your feet? Is it itchy?"
"Only on my scalp and face."
"Can I see inside your mouth? When did the rash start? Have you been travelling?"
The steady stream slowed to a trickle of about three visits, during which one doctor felt around for Patient X's glands. Finally, the dermatologist himself who arranged the meeting entered the exam room. His warm smile betrayed the fact that he was indeed pleased that his hunch seemed right. He sat beside me and quietly expressed that he was very concerned that Patient X had secondary syphilis and that we should take this note over to 655 West 12th, the address for the Sexually Transmitted Diseases Clinic at the BC Centre for Disease Control (CDC). The note was addressed to Dr. Jones and instructed a reassessment of the RPR test, stating that this was a textbook example. Once all the doctors' examinations were over, the photographer came in and Patient X was photographed torso, arms, and close-ups on the more advanced nodes. We arranged with the photographer (who was the department head) for copies of the photos.
Being then free to leave, Patient X and I headed over to the CDC, a block and a half away. We stood at the reception for several minutes with what was obviously a doctor's note in hand, while the receptionist queried another worker about how to save a picture as a jpeg in her on-line photo album. Finally she handed Patient X an intake form, as well as some questionnaire apparently for some nursing student's research. The hand-out about the "Sexual Decision-Making Study" offered $10 for 10-20 minutes. As we sat in the waiting room the two people who came in after us were each called in by a doctor. Finally, we were invited into an examination room. The young woman doctor said she had trouble decyphering the dermatologist's note and had put in a call to his office. I told her what the note said.
The doctor had Patient X undress and fully examined his rash and glands, genitals and inside his mouth. She ran through the STD exam questionnaire at the computer terminal, his name and case number already up on the old monochrome screen. Included in his file was his choice of male partners and the word "HOMOSEXUAL". The doctor left and soon returned, introducing Dr. Hugh Jones, a syphilis expert with the CDC for 30 years. Dr. Jones explained to us about the RPR test. RPR tests are usually highly reactive, resulting in some false positives. If there is a positive result, the blood is diluted in half and tested. If there is a positive result again, the blood is diluted 1/2, 1/4, 1/8, 1/16 and consequently tested. The more diluted the blood that still tests positive, the more advanced the spread of the disease. The doctor at the walk-in clinic was right to tell us that you can be confident that a negative RPR test means you don't have syphilis.
"There have been cases documented where there is so much antibody in the blood that the test reacts negative on full blood, but tests positive once the blood is diluted." Dr. Jones himself had never seen such a case but has been watching for one. Physician requests for advanced level RPR testing are not processed by the lab unless the test is authorized by the STD clinic. There have been cases documented in the 19th century in Sweden, where syphilis patients were put in sanitoriums, after secondary syphilis symptoms such as a rash went away, only to reemerge more severely later on.
The two things that make the case unusual are that the RPR test was negative, and that the onset of secondary syphilis usually appears around six weeks maybe to six months after primary infection. In this case the suggested time of infection was in January, almost 11 months ago. Then Dr. Jones joked, "Maybe they got the blood mixed up at the lab and some poor sucker who doesn't need to be is being treated for syphilis!"
Dr. Jones left and the first doctor drew blood for a second syphilis test, then offered Patient X an HIV test even though he had been tested in March, and explained to him the concept of "the window period." "We already have the blood, if you decide you'd like to test for HIV."
The doctor leaves one more time, and tears well up in X's eyes tears of incredible, unexpressable relief. "Hold yourself together, you're almost there," he says to himself, drying his eyes with the cuff of his shirt.
Finally it was time for treatment, "Bicillin" which is two large needled injections of penicillin, which is in a thick ointment-like form and difficult to push through the syringe. The needles are delivered deep into the muscle tissue just below the hip, one in each cheek. "Breathe deep. Let it out. Keep breathing
We were asked to hang around for 20 minutes after the injections, to be sure there was no allergic reaction to the penicillin. Patient X was given a hand-out about syphilis and syphilis treatment and informed that he shouldn't have sex for the next two weeks nor should he donate blood during this time. He should return in six months for a follow-up test. X could barely walk with the pain in his ass as we made our way around the corner to the cab.
Patient X phoned the STD clinic at the end of the day just as he was instructed. He was informed that they went back and retested the blood that was drawn at the end of October. The test result on that blood was still negative. The test result for the blood drawn that day was positive. And continued to test positive down to a dilution of 1/32.
X and I are not medical professionals, and we are just speculating here, but our guess is that the original syphilis infection occurred in January, and that it was most likely transmitted orally. Our reasons for suspecting oral transmission include Patient X's sex practices, the fact that he never noticed a visible ulcer and, most interestingly, the fact the he felt throughout this whole ordeal that there was an infection inside his head, coupled with the chronically swollen, but not tender, glands in the back of his neck.
By the end of the second day following treatment Patient X had started to develop an appetite, eating small portions at regular meals. He had been down to eating almost nothing canned peaches in real juice was all he could stomach. By the third day after treatment, X noticed that the glands in the back of his neck seemed less hard and swollen.
Patient X tells the story of his incredible ordeal to a friend on the phone. "In the end I went nine days with no sleep, no naps, no sleep at all. I think that's why they used to say that people with syphilis went crazy. It's sleep deprivation!
What's annoying is when people tell you it's all in your head. That you need to live healthier, eat better and excercise." The worry lines that had entrenched themselves over the past nine months melt away as he smiles through his fading rash. "I feel much better now."