Here’s a hypothetical scenario: Phoebe Gates, the 14-year-old daughter of the richest man in the world goes hiking with her closest friend from school. On a Saturday morning, they decide to do Phoebe’s favorite day hike. Summerland is an alpine meadow full of wildflowers on the southern slopes of the spectacular Mt. Rainier.
Phoebe is trudging along, leading the way up the trail and feels thirsty. She takes a break and the two of them sit down in the high grass just off the trail. Bold, blue sky with sunshine on their faces and birds chirping all around. A perfect summer day in the outdoors.
Phoebe is unaware that a black-legged tick in the nymph stage of its life cycle was standing on a blade of grass right where she sat down. The tick, about the size of a period on a sentence, ends up on her leg and settles into the crevice behind her right knee.
The two teenage girls get up after a time and go the rest of the way to the meadow. They relax for a while; have a picnic lunch with sandwiches, apples, granola bars and more water.
All the while, the tick is burrowing its way in until it reaches a blood vessel so it can feed.
Phoebe and her friend are picked up at the trailhead late afternoon and return home. The tick comes along for the ride eventually dropping off that evening when Phoebe is asleep in bed.
Three days after the hike, Phoebe starts to feel ill. She feels tired for no apparent reason with some mild knee pain. She tells her mother, Melinda Gates, who kisses her forehead to check for a fever and tells her to get some rest. Not much going on for now, but Phoebe needs to be better for an upcoming fundraiser. Over a few days, Phoebe is exhausted spending much of the day in bed. The knee pain is somewhat worse and she has mild headaches.
Their primary care doctor comes to the house to check on Phoebe. He is regarded as one of the best in the state of Washington. He had a 4.0 GPA from UCLA and then was near the top of his class at Stanford Medical School before attending the University of Washington Family Practice Residency where he served as the Chief Resident.
Her exam is normal overall except a thorough knee exam detects a subtle increase in joint fluid, or effusion, on the right. The doctor, of course, feels some pressure to take good care of the Gates family so he orders a right knee x-ray and a battery of lab tests. He tells Mrs. Gates that she probably has a virus and strained her knee when hiking. Should resolve within a few more days and nothing much to do except rest and good hydration.
Phoebe, instead, doesn’t improve and starts to have more diffuse symptoms including muscle pains. Their primary doctor comes back to the house and is mildly perplexed because viruses tend to resolve over about a week. He orders other labs including a Lyme test, but everything comes back normal. He arranges for a consultation two days later with Danielle Zerr, MD, MPH, the Division Chief of Pediatric Infectious Disease at Seattle Children’s Hospital, one of the preeminent pediatric hospitals in the world.
Dr. Zerr does an incredible work-up looking for variety of infectious agents, viruses and bacteria. She rechecks the Lyme test. Everyone feels the pressure to help the daughter of the wealthiest man in the world.
They see Dr. Zerr about a week later for a follow-up visit. The testing is all normal and by that time the fevers have resolved. The malaise has improved, but is still an issue and Phoebe now has an odd pattern of joint pains. The right knee is typically the worst joint for her, but there is a migratory pattern and things seem to change every few days with different joints involved.
Dr. Zerr becomes worried about an autoimmune type of arthritis developing in the context of an infectious agent, so she refers Phoebe to Anne Stevens, MD, PhD, the Division Chief of Pediatric Rheumatology. The work-up is expanded with full series of x-rays and several pages of labs including autoimmune and inflammatory markers. There are some mildly abnormal results, but nothing that would lead to a diagnosis like Juvenile Rheumatoid Arthritis.
The Gates are having dinner with some close friends and talk about Phoebe’s illness. The friends recommend they see some of the specialists at the University of California, San Francisco (UCSF). Arrangements are made for her to see five pediatric specialists on the same day within a couple of weeks. They each come at her symptoms from different angles and each recommend new testing. No definitive answer is found.
Phoebe continues to struggle with her symptoms and then others start to develop. She develops brain fog with difficulty concentrating. She has muscle cramps. She has frequent urination out of proportion to her fluid intake and has difficulty maintaining hydration. She develops pain especially to the bottoms of her feet and this makes it difficult for her to walk.
She continues to see medical specialists and finally her primary care doctor sits down with the family to review everything. Gently, he raises an awkward subject. He recommends one more opinion: psychiatry. If all of these top physicians can’t diagnose her, there may be a strong psychosomatic component he explains. The Gates listen, but respectfully decline. They know their daughter and can’t imagine this is a psychiatric condition.
A couple of weeks later, a friend of Melinda’s recommends they see a local naturopath who studied at Bastyr. Not much to lose is the argument, so the Gates’ agree and set up a visit. Melinda and Phoebe go together giving the provider some time to review the prior office notes and test results from the other visits. The naturopath tells them the primary issue is almost certainly Lyme disease, chronic now and disseminated, potentially with a co-infection like Bartonella. The naturopath puts her on prescription antibiotics for a few months to cover different forms of the bacteria, then switches to an antimicrobial herbal combination plus a variety of supplements to support the gut, immune system and general capacity to recover. Phoebe steadily improves over a year and seems back to her general good health.
Because of this personal experience with someone close to them, Bill and Melinda Gates see the healthcare in a new light and dedicate 10 billion dollars from their foundation to study Lyme disease, tick-borne infections and other sources of mystery illness.
This is a fictional account. I would never want Phoebe Gates to become ill. For the record, the Bill and Melinda Gates Foundation gave over $1 million to Ceres Nanosciences, a company that has developed a new type of testing (a urine-based Nanotrap Antigen test) that may be a breakthrough when used to diagnose infections like Lyme, Ebola, TB and others.
I wouldn’t say this is much support for Lyme disease but worth mentioning.
Andrew Lenhardt, MD.