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The most dangerous creature Kelly Weintraub ever came across was as small as a poppy seed. But its bite infected her with a ticking time bomb of chronic ailments.

Nine years ago, avid outdoorswoman Kelly Weintraub found herself in a scary and unfamiliar place: a wheelchair. A wildlife biologist, Weintraub thought she was having a stroke. So she went to the ER, where the doctors told her she was fine. But Weintraub knew she wasn’t. Something was making her sick.

“A chance encounter with a colleague whose wife had long confronted the same symptoms led Weintraub to figure out what she was battling: Lyme disease. But that wasn’t the half of it.”

This was just the latest calamity in a series of health ordeals that had forced Weintraub to go on medical leave. She’d suffered for years from symptoms that mysteriously would come and go. Fatigue. Muscle cramps. Migrating pain. Brain fog. A month after the ER visit, a chance encounter with a colleague whose wife had long confronted the same symptoms led Weintraub to figure out what she was battling: Lyme disease. But that wasn’t the half of it.

Known as The Great Imitator, Lyme disease mimics other conditions such as multiple sclerosis and fibromyalgia. Lyme is a bacterial infection primarily spread by ticks. But ticks can transmit lots of other diseases, too. There’s Rocky Mountain spotted fever. The Heartland virus. Tick-borne relapsing fever. These, and many others, can trigger disabling consequences. What’s more, new tick-borne diseases are being discovered all the time.

If you think you’re out of the woods because you live far from Tick Central—the Northeast states of the U.S.—circle back to the names of the tick-borne diseases I just listed. Yep, the West and Midwest are flush with ticks, too. In fact, in some places, your risk of getting some of these other tick-borne diseases is greater than getting Lyme disease, which is found throughout the U.S. and in more than 60 other countries. (Indeed, Weintraub lives on the West Coast.) Living in a leafy suburb—or hiking in the woods—can potentially jeapordize your health these days.

Even if a tick makes you sick, good luck trying to get an accurate diagnosis. Why? For starters, tick saliva has an anesthetizing substance in it. Less than half of people bitten by a tick recall the event. (Weintraub doesn’t). Plus, the bite is supposed to give you a distinctive red “bull’s-eye” rash. That’s bullshit. Seeing a bull’s-eye rash is typically the symptom that prompts doctors to start patients on a two-or-three-week course of antibiotics to prevent Lyme disease. But the rash doesn’t always appear. (It didn’t in Weintraub’s case.) Finally, the lab tests that are most commonly used to diagnose Lyme are unreliable. They miss more than half of all cases.

For Weintraub, the diagnoses kept coming. Ten months into a controversial antibiotics regimen, she found out she had two more nasty tick-borne infections—anaplasmosis and bartonellosis. That’s why she was still sick, despite taking antibiotics for so long. Some experts say as many as 50 percent of Lyme sufferers like Weintraub—the ones who weren’t treated within 30 days after being infected—stay sick long-term.

But Weintraub wanted to beat those odds. In a big way.

And so, while she was bedridden, she ruminated on what “being well” meant for her. Eventually she came up with only one thing: hiking the 2,650-mile Pacific Crest Trail from Mexico to Canada. Her quest set, she spent hours online reading PCT hikers’ trail journals. Their posts made her feel as if she was laced into her own hiking boots and walking through the wilderness, instead of where she really was. Flat on her back. In her parents’ spare bedroom.

In this episode, Weintraub gives us a detailed map of how she went from the active life to the sick bay.

Today, Weintraub talks about:

• Why she had no inkling that a ticking time bomb of tick-borne diseases was lurking inside her for years before she got sick

• How she finally found out she had Lyme disease

• The dietary restrictions she adopted to increase her odds of getting better

• Why she resorted to the controversial treatment of taking antibiotics for 2 1/2 years

• How her doctor figured out she had bartonellosis despite her testing negative for it—and which treatment nuked it

• How she ramped down her worklife to accommodate her healing and how she eased back into full employment

• Why, while bedridden, she decided to hike the 2,650-mile Pacific Crest Trail

• How she paid for treatment that cost tens of thousands of dollars out of pocket

Interviewee:

Kelly Weintraub is a wildlife biologist, Lyme disease survivor, and Pacific Crest Trail thru-hiker. In her blog, Life Beyond Lyme: From Lyme Disease to the Pacific Crest Trail, she documents the journey she made from getting her life-changing Lyme diagnosis to triumphantly completing the Pacific Crest Trail.

Weintraub says these three books got her up to speed on Lyme disease and tick-borne infections:

• How Can I Get Better? An Action Plan for Treating Resistant Lyme & Chronic Disease by Richard I. Horowitz, M.D. The doctor’s 55-question Horowitz Lyme-MSIDS Questionnaire illustrates how varied common Lyme disease and tick-borne coinfection symptoms can be.

• Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub (no relation to Kelly)

• The Beginner’s Guide to Lyme Disease: Diagnosis and Treatment Made Simple by Nicola McFadzean, N.D.

Resources:

• International Lyme and Associated Diseases Society

• Bay Area Lyme Foundation

• LymeDisease.org

• Centers for Disease Control and Prevention’s pages on Lyme Disease includes this comprehensive, 52-page PDF, “Tickborne Diseases of the United States: A Reference Manual for Health Care Providers,” and this scary chart (click on the “Tables and Charts” button) that shows the steady climb in annual reported cases of Lyme disease since 1996. More than 476,000 people get diagnosed with Lyme disease each year in the U.S.

• TickEncounter Resource Center at the University of Rhode Island. Leave it to a patent-holding, research-paper-publishing scientist who calls himself “The TickGuy” to come up with some easy-to-use yet fabulously detailed tools to help folks living in or heading into tick-infested lands. Dr. Thomas Mather is the ace researcher and science communicator behind the center. Take his crowd-sourced tick survey, TickSpotters. If you’re freaking out because you just removed an engorged tick from your nether regions while camping out, you can tap TickSpotters to get a jump on how worried you should be. Drop the little bloodsucker on a piece of white paper, snap a photo and upload it to the TickSpotters team. They will email you a risk-assessment report that identifies the species of tick you found, its stage of development, how long it probably was attached to you, how at risk you are for disease and what your next actions should be to sidestep illness. If you’re more of a DIY person, use the center’s Field Guide to Ticks. It helps your inner entomologist figure out which tick you’ve encountered; whether it’s harmless or capable of transmitting a disease to you; and whether you should consider tick testing if it’s bitten you. Just know this: the extreme close-ups of each tick species in larva, nymph and adult stages will make your skin crawl.

How to remove a tick:

In this minutelong animation, you’ll learn how to properly remove a tick that’s feeding on you to lessen your risk of infection:

https://www.youtube.com/watch?v=0wotB38WrRY

Straight from the lab:

The risk factors for getting bitten by a tick. The best diagnostic tests. The treatments that work. Heck, even just the existence and the name of the disease (chronic Lyme disease vs. post-treatment Lyme disease syndrome, for example). There’s a lack of consensus on those things and so many other pieces of the Lyme puzzle among doctors who treat patients with Lyme disease and tick-borne coinfections. Here are some articles that explore the leading controversies:

• “Recent Progress in Lyme Disease and Remaining Challenges,” Frontiers in Medicine, 2021

• “Risk Factors for Bites and Diseases Associated With Blacklegged Ticks: A Meta-Analysis,” American Journal of Epidemiology, 2019.

• “Controversies About Lyme Disease,” JAMA, 2018

• “Diagnosis of a Tick-Borne Coinfection in a Patient With Persistent Symptoms Following Treatment for Lyme disease,” BMJ Case Reports, 2018

• “Using Citizen Science to Describe the Prevalence and Distribution of Tick Bite and Exposure to Tick-Borne Diseases in the United States,” PLOS ONE, 2018

• “Better Drugs for Lyme Disease: Focus on the Spirochete,” Infection and Drug Resistance, 2018

• “Empirical Validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for Suspected Lyme Disease,” International Journal of General Medicine, 2017

• “Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey,” PeerJ, 2014

Explore the show notes for this episode at: https://painopolis.com/lyme-disease-and-tick-borne-infections-part-1/

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

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