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While bedridden with Lyme, Kelly Weintraub set the goal of hiking the 2,650-mile Pacific Crest Trail. Could this wildlife biologist claw back her health?

Previously on Painopolis, wildlife biologist Kelly Weintraub talked about the years of symptoms that mysteriously would come and go. Fatigue. Muscle cramps. Migrating pain. Brain fog. Finally, 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. Lyme is a bacterial infection primarily spread by ticks. But ticks can transmit lots of other diseases, too, which can trigger disabling consequences. As Weintraub, unfortunately, found out.

“Six months after finishing her antibiotics treatment, Weintraub hit the Pacific Crest Trail. Would the little bloodsuckers she’d encounter in the wilderness zap her with even more tick-borne infections?”

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 beat those odds. In a big way.

While bedridden, she set the pie-in-the-sky goal to hike the Pacific Crest Trail from Mexico to Canada. Six months after finishing her antibiotics treatment, Weintraub hit the trail. Would she be able to walk 2,650 miles with a heavy pack on her back? Would the little bloodsuckers she’d encounter in the wilderness zap her with even more tick-borne infections? In this episode, Weintraub gives us a detailed map of how she went from the sick bay to the summit of her life.

Today, in part two of the story, Weintraub talks about:

• Her strategy for never missing a dose of her meds when her daily pills filled six pillboxes

• The mental shifts she made to deal with the roller-coaster nature of Lyme disease

• Why she believes that setting big goals for herself when she was super-sick was a key part of her recovery. (While bedridden, she decided to hike the Pacific Crest Trail!)

• What it was like to hike 20 miles a day so soon after being sick

• How to increase the odds of finding a tick on your body when you’re searching for something that can be as small as a poppy seed

• Why she keeps returning to the wilderness—for work and recreation—despite the abundance of disease-carrying ticks lurking there

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-2/

Music:

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

Did you find this episode worth hearing? If so, kindly donate to Painopolis.