Medical internship. A time for 90 hour work weeks. A time for putting into practice all my medical school book-learning. A time for no sleep. And a time for phone calls from Mom. “What do I do about this?” “What does it mean when grandma has that?” And then the fateful call: “My Kaiser doctor says I have rheumatoid arthritis…He tells me to get a wheel chair to save my feet…You’ve got to find something to help me!”
She honestly believed I could find the answer the medical profession could not. Long story short, Mom found it for me. At the time, I only knew what I was taught in medical school: rheumatoid arthritis is an autoimmune disease, and we don’t know what causes or cures it. This answer was unacceptable to her. It meant ending up a cripple the rest of her life.
Understand, I was the third generation of women in my family to head into a medical career. My grandmother went to medical school for three years before being nudged out by my grandfather. My mother was accepted, but never went, because I came along. She taught high school sciences instead. So when I was accepted and then actually made it all the way through to an MD, it was a big deal! Internship was not exactly the best time to ask me to solve what seemed unsolvable. The blank stares she got from me were certainly from lack of sleep instead of wheels grinding in my brain. “Mom, I can’t even write a prescription on my own yet,” I would say. Needless to say, I wasn’t much help. So she went on her own quest.
Mom’s quest was not how I would have done it. She spent hours and hours trying to come up with WHY this was all happening to her. She didn’t care what others believed about it. She didn’t have years of medical school brain-washing to sift through. As my internship year rolled into the second year of family practice residency, Mom could hardly walk. This was about the time news came out that some arthritis was caused by an infection called Lyme disease. Mom worked and worked on me to treat her “Lyme disease.” I was not about to budge. “No,” I said. “I don’t know what I’m treating. And you never had a tick bite.”
One day after a very long call weekend, she pulled rank on me. “I’m your mother! Give me antibiotics!!” Oh, my. I just lost the battle of wits. Sigh. Let’s see, what did I learn in medical school? Lyme disease is a spirochete, sort of like syphilis. Penicillin works for syphilis. Penicillin couldn’t hurt, was my thought, and it would get Mom off my back. It certainly is more benign than steroids and the other drug rheumatologists use.
What happened next was absolutely incredible. Within 12 hours Mom’s horribly swollen feet shrank down to normal size, arch and all. Her pain was gone for the first time in months. She was practically dancing, so grateful to the miracle of penicillin!
By the end of a week, the miracle faded. The pain and swelling returned. Of course, Mom wanted the miracle back, so she insisted on another shot of penicillin. I wanted to see if this was real or just a fluke. OK. More penicillin. Same thing happened again. The pain and swelling disappeared. We repeated this miracle four times. Each time, the beneficial effects of the penicillin faded more quickly.
It could not have been a coincidence, I thought. I had to concede Mom was on to something, but penicillin wasn’t quite the right medicine. I scrambled to find out more about Lyme disease myself. Very little was written about it since this was all new information. I ended up calling Lyme disease researchers in Minnesota and New York. Rocephin intravenously, I was told, was a much better choice for treating Lyme disease than penicillin. Mom’s lab work came back “negative” for Lyme disease, but by this time I didn’t care. Antibiotics were really helping her. We proceeded with 14 days of IV Rocephin therapy in the living room.
Seeing was believing…maybe. Mom improved enough to return to work. She went back to Kaiser to show them how much better she was. Her doctor insisted that rheumatoid arthritis doesn’t get better, and she had been misdiagnosed. He also told her she couldn’t have had Lyme disease, and referred her to a psychiatrist. I was never particularly convinced she had Lyme disease either, but something certainly responded to antibiotic therapy.
With the busy-ness of medical training, the memory of Mom’s dramatic penicillin therapy faded. So did my belief in antibiotics. Mom’s joint problems were better and worse, though never to the severity of that summer. Mom continued her vigilance for other arthritis treatments. She happened to have her TV on Good Morning America when [the late] Dr. Thomas McPherson Brown spoke about treating arthritis with antibiotics. I got a phone call, “Quick! Turn on the TV! There’s a doctor talking about treating arthritis with antibiotics.” “Sure, Mom, you watch. I can’t get to the TV right now.” Years later, I was sorry I missed it.
Mom hounded, and I mean hounded, me to keep her in antibiotics. She wrote to Dr. Brown’s foundation and brought me as much information as she could get her hands on, including the book, The Road Back. I got every article she came across shoved in front of me with an oral quiz at the end. Then, of course, she would refer arthritic patients to me, telling them her story. Early in my practice, I dared to treat only a select few with antibiotics. It probably took 10 years for me to truly believe in what I was doing. It became easier after the JAMA study about Minocin validated antibiotic therapy for arthritis.
During my 14 years of practice, I have treated all kinds of rheumatoid diseases including scleroderma, lupus, chronic Lyme disease, rheumatoid arthritis and fibromyalgia. Sometimes the results are absolutely awe-inspiring. Sometimes people do not have the patience to continue therapy until they get better.
As a family physician, I tend to look at the whole person and ask a lot of history questions before embarking on antibiotic therapy, if it is appropriate. I don’t have an exact protocol. I know the various antibiotics well, and I’m not afraid to use them. I will treat with IV antibiotics or shots or oral medications depending on the circumstances. There are many more antibiotics available now than there were in Dr. Brown’s time, so why not use them? Most of what works has to be determined clinically anyway, since lab tests are not particularly helpful.
The hardest part is rethinking the illness patterns. Is there really such a thing as autoimmune disease? Maybe it’s all triggered by infection. And each person is different. For example, someone who had recurrent and severe strep infections as a child, I think, is likely to have strep-caused arthritis, whether or not the ASO titers are elevated. I will more likely treat them with amoxicillin or Zithromax or Biaxin that hits the strep-type bugs hard. The tetracyclines don’t work as well on strep-type infections.
The next hardest part is realizing that the patterns may be more than one disease. People can and do have two or three infections going on at the same time. Or two or three disease processes. Time and patience and listening to the patient provides an answer. Blast the obvious infections first, like chronic sinusitis or chronic kidney infections, with heavy-duty antibiotics. Then back off and treat the chronic indolent ones with less potent drugs. I did this with a scleroderma patient once. I blasted her with IV Rocephin for her sinusitis and her scleroderma remarkably improved. If a particular antibiotic does not work after a few months, I try a different one. Minocin that is supposed to be the best for tissue penetration does not work for some. I probably use the tetracycline-type antibiotics the most for long-term therapy. I wish I had an answer as to why the body does not fight these infections off permanently.
By the way, mom is doing just fine, thanks. She gets around and does most everything she wants to. She has been on mostly tetracycline for the last 13 years. I take tetracycline for my own fibromyalgia-type arthritis. I am, after all, my mother’s daughter. Hurray for persistent mothers!