Move It or Lose It | Episode 134 | Lyme Disease: Things You May Not Know About Lyme from a Father and Daughter’s Perspective

Podcast: Move It or Lose It
Host: Kathy Chester
Guests: Chris Hughes (CEO, Foot Scientific), Jane Hughes
Date: July 16, 2025

Overview

In this deeply personal and informative episode, host Kathy Chester sits down with returning guest Chris Hughes and his daughter Jane Hughes, who has been living with Lyme disease. The discussion sheds light on the complexities of Lyme disease from both the patient and caregiver perspectives, highlighting the difficulties of diagnosis, the emotional rollercoaster of chronic illness, the importance of community and advocacy, and strategies for maintaining hope and engagement. Their candid conversation provides insight into the realities of life with an often misunderstood autoimmune disease.

Key Discussion Points

1. Jane’s Diagnosis Journey

• Diagnosis Timeline & Challenges

  • Jane was diagnosed about 18 months prior, after nearly a year of symptoms. She notes her relatively “fast” diagnosis, having met people who struggled for eight years before identifying Lyme (01:37-02:02).
  • Jane’s initial US tests were negative until a more comprehensive (and expensive) European test confirmed at least three strains of Lyme (02:17-02:37).

  Jane: "I took it twice. Both times came back negative. No, you don't have Lyme. And then went to a specialist...definitely have at least three strains of Lyme." (02:17)

• Systemic Gaps in U.S. Healthcare

  • Chris explains how the US system doesn't cover or test for as many Lyme strains as Europe, leading to missed or delayed diagnoses (02:40-03:14).
  • Insurance and reimbursement policies restrict testing, often at the cost of patients’ wellbeing.

2. Understanding Lyme Disease: Myths, Symptoms, and Triggers

• Tick Bites and Under-Detection

  • Jane never recalls a tick bite, noting many with chronic Lyme don’t remember one either—a significant myth dispelled for listeners. She suspects she contracted Lyme while visiting the East Coast (06:02-07:00).

  Jane: "I have no recollection whatsoever of having been bitten by a tick. And quite a large proportion of people with chronic Lyme have the same situation." (06:02)

• Trigger Events and Dormancy

  • Lyme can remain dormant and be triggered by stress or other illnesses. For Jane, a severe COVID infection preceded the onset of her symptoms and subsequent thyroid issues (07:09-07:41).

  Jane: "We're pretty sure what kicked it off...was you get something else or some stress life, and it fires everything off. So I got Covid pretty hard and bad." (07:09)

• Symptoms and Everyday Life

  • Jane describes her predominant symptoms as profound fatigue and brain fog, without the chronic pain many others experience. She emphasizes how Lyme “knocked her off her feet,” transforming her from an energetic private chef to someone often bedridden (09:03-10:02).
  • Chris points out that Jane's presentation wasn’t psychological or depressive—dismissing an initial assumption by a doctor (08:29-10:02).

3. Emotional and Social Impacts

• Relief and Uncertainty After Diagnosis

  • Jane experienced relief at having an answer after extensive medical advocacy and self-doubt, despite the uncertainty of treatment (12:00-12:16).

  Jane: "Just straight relief. It was just, okay. Oh, thank goodness. We know there's an answer to this. I'm not crazy." (12:00)

• Parental Perspective

  • Chris and Jane discuss the emotional turmoil for caregivers—the guilt, anxiety, and confusion around treatments, alternative therapies, and conflicting medical advice (12:43-14:03).
  • The Hughes family emphasizes the continual need to self-advocate and “babysit” care coordination, often feeling unsupported by fragmented medical systems (14:57-15:08).

  Jane: "Let's be honest. It's babysitting." (15:08)

• Support Systems and Friendship

  • Jane is grateful for close friends and family able to recognize when “something isn’t right.” That contrast between her usual energy and illness made it more obvious to loved ones (16:42-17:27).

4. Living With Fatigue and Adapting Life

• Fatigue Beyond "Sleepiness"

  • Jane and Kathy unpack how disease-related fatigue is more than tiredness—it can bring cognitive problems, emotional overwhelm, and limits on daily participation (20:14-21:17).
  • Jane takes a pragmatic, patient approach: “hibernating” with anticipation of future improvement, and maintaining “intense chronic optimism” (21:41-22:12).

  Jane: "I suffer from intense chronic optimism, so I'm always...waiting about two months ahead for things to get better." (22:04)

• Reframing Self-Worth

  • The conversation explores broader cultural issues—self-blame, social skepticism, and the tendency to offer advice as a way for others to feel “safe” from illness themselves. Both Jane and Chris urge self-compassion and rejection of guilt (23:06-24:13).

  Chris: "If you have a chronic illness, you may be suffering 100% innocently...most people with chronic illness just need to really let that go." (23:23)

5. Purpose, Hobbies, and Finding Joy

• Geeking Out as Self-Preservation

  • Jane has found deep solace in “geekery,” especially in a niche online community around the novel "Journey to the West." Writing fan fiction and having a small, specific area of fascination has been vital to her mental health (28:51-30:12).

  Jane: "A certain amount of geekery has been my salvation through this entire illness." (28:51)

• Nature and Future Aspirations

  • Despite physical limitations, Jane maintains a deep appreciation for nature, birdwatching, gardening, and dreams of regaining the ability to hike (27:04-27:21).
  • Jane recognizes that physical movement, even as a newfound joy, will be an important part of her future (26:54-27:12).

6. Aids, Advocacy, and Accepting Help

• Tools That Help—and the Emotional Journey

  • Jane uses a cane and discusses the importance of finding one that makes her feel good, highlighting how visible aids can change how others perceive and support her (34:19-34:42).

  Jane: “If you have a cane and you need to…cross the street…they’re much more patient with you...” (34:19)

• Advocacy Fatigue

  • The need for personal advocacy is relentless, and Jane acknowledges often relying on her parents to champion her medical needs—something that has brought them closer (41:13-42:02).

  Jane: “Honestly, they’re much more advocates for me than I am.” (41:13)

7. Looking Forward: Treatment and Hope

• Exploring International Treatments

  • Jane shares her plans to pursue stem cell and targeted therapies in Mexico and Greece, noting that certain experimental or comprehensive treatments aren’t available in the US (42:43-45:02).
  • Chris takes a “Zen” approach—holding hope, but focusing on acceptance and faith rather than clinging to any one outcome (45:52-46:09).

• The Role of Faith and Spirituality

  • The Hughes family discusses the importance of faith and spiritual connection in coping with chronic illness (46:22-46:39).

  Chris: “It’s hard to imagine how, not having a kind of a connection or a relationship with your higher power...how to find meaning in any of this.” (46:26-46:39)

8. Advice for Others and Final Wisdom

• For the Newly Diagnosed

  • Don’t push through at personal cost; rest is essential.
  • The virtue is in recalibrating expectations, not in soldiering through (49:32-49:59).

  Jane: "Don't do what I did, which is the attempt to push through…oh no, no, no. You will be paying for that." (49:24)

• How to Explain Lyme Disease Succinctly

  • Jane: "Autoimmune disorder. It'll knock you on your butt. There's not exactly a set cure, but there's a lot of treatment. So just keep bouncing around until you [find it]." (50:19)
  • Chris recommends seeking broader diagnostic testing (SOT test / Vibrant Wellness), as US options are limited (50:35-51:10).

• For Parents and Caregivers

  • Chris counsels acceptance—doing your best in the moment, seeking prayerful guidance, and embracing that there may not be a perfect answer—just “the next best thing you can do.” (52:24-53:08)

• The Value of the “Winter”

  • Jane reframes illness as a necessary winter, an opportunity to grow and reflect beyond actions and achievements, discovering “who you are in the absence of what you do.” (51:32-51:56)

Notable Quotes & Memorable Moments

• On diagnostic struggles:

  "We met one poor soul at the clinic who'd been bounced around for eight years before anybody [figured it out]." – Jane (01:45)

• Relief at diagnosis:

  "Just straight relief. It was just, okay. Oh, thank goodness. We know there's an answer to this. I'm not crazy." – Jane (12:00)

• Cultural skepticism:

  "There's so much like, 'well, why don't you just…?' And so many professionals don't know what to do or say." – Chris (09:46-11:15)

• Life-changing impact:

  "I was very, very energetic and active…when I was suddenly like, no, I need to stay in bed all day, it was a very radical departure from usual." – Jane (10:02)

• On living with uncertainty:

  "It’s mostly a very quiet process of waiting...just waiting about two months ahead for things to get better." – Jane (21:41-22:13)

• Wisdom about illness and self-worth:

  "If you have a chronic illness, you may be suffering 100% innocently...most people with chronic illness just need to really let that go." – Chris (23:23)

• On the comfort of hobbies during illness:

  "A certain amount of geekery has been my salvation through this entire illness." – Jane (28:51) "I suffer from intense chronic optimism, so I'm always...waiting about two months ahead for things to get better." – Jane (22:04)

• Advice for those struggling:

  "It's kind of like how plants need winter and you kind of need a rest period…You get to think about who you are in the absence of what you do." – Jane (51:32)

Timestamps for Important Segments

• 01:37-02:37: Jane’s diagnosis timeline and testing challenges
• 06:02-07:00: Understanding Lyme transmission; no tick bite recall
• 07:09-07:41: Latency, COVID as trigger, thyroid issues
• 10:02-12:16: Symptoms, psychological misdiagnosis, and relief in diagnosis
• 12:43-15:08: Parental perspectives, advocacy, health care system gaps
• 20:14-22:12: Fatigue, cognitive issues, emotional coping, “hibernating”
• 23:06-24:13: Self-blame, “helpful” advice, and social stigma
• 26:54-27:21: Jane’s aspirations: mobility, hiking, and movement
• 28:51-30:12: Hobbies, “geekery,” and mental well-being
• 34:19-34:42: Visible aids (cane) and social perception
• 41:13-42:02: Advocacy and family roles
• 42:43-45:02: International treatment avenues, new therapies
• 49:24-49:59: “Don’t push through”—advice for the newly diagnosed
• 51:32-51:56: “Wintering” as a metaphor for recovery and rethinking self

Episode Takeaways

• Lyme disease can be extremely difficult to diagnose and is under-recognized, especially in the US.
• Chronic illness requires deft navigation of complex, sometimes insufficient healthcare systems and constant self-advocacy.
• Emotional and social support are critical for both patients and caregivers. It’s important to reject self-blame and to reframe rest and inactivity as necessary, not failures.
• Finding joy and purpose in new ways—through hobbies, nature, or learning—can help maintain hope and resilience.
• Community, faith, and optimism are powerful allies in the chronic illness journey.
• The experience of chronic illness can foster unexpected closeness in families and clarity about what truly matters.

For listeners navigating Lyme disease, caregiving, or chronic illness, this conversation offers validation, practical advice, and honest hope.