Impact of Lyme disease on working and caregiving

A newly published study, which examines the causes of delayed diagnosis or treatment of Lyme disease, also demonstrates the impact the disease can have on a patient’s ability to work and/or serve as caregivers for family members.

“The impact of Lyme disease on work and caregiving activities emerged as a salient theme for participants, impacting patients prior to treatment and, in some cases, even after treatment,” writes Hirsch and colleagues in the British Medical Journal. [1]

The authors identified 26 patients who were diagnosed with Lyme disease between 2014 and 2017 and had a positive IgG western blot test. All the participants were patients at Pennsylvania-based Geisinger, an integrated health system.

The qualitative study used in-depth telephone interviews with patients to help understand what occurs between the onset of Lyme disease symptoms and treatment. Although it was not included in the study’s design, the authors found that a “detrimental impact of Lyme disease on the ability to work and fulfill caregiving roles emerged as a common theme among participants.” Patients describe their frustration in losing their ability to be productive workers or caregivers at home.

In one case, the tables are turned after a woman develops Lyme disease and her 92-year-old mother must begin caring for her.

“I couldn’t function, and I’m a care-taker for my mother, although she’s a good 92 now… She took care of me, but I could not function. I lived on the sofa or in bed. That’s how tired I was. If I tried to do a little bit of anything, I would have to get back down, because I couldn’t handle it.”

A man describes his struggles with continuing to manage his own business.

“I’d never sit down at work ever. I have my own machine shop. And I like nobody ever sees me sit. … like it came to the point where I was sitting and then actually at lunchtime and stuff I would actually lay on the bench.”

Other participants express frustration with how the disease has impacted their work and caregiving abilities even after treatment.

“I own my own business, I’ve been in business since 1990. It is definitely not the same. I have a hard time spelling words. I mean you got to go in, you got to sell yourself, you got to get all the work and, it’s just tough anymore. I just don’t have the… it’s hard to put things together, you know what I mean, like on the fly. Like with words and everything. You seem to lose that edge and I don’t know how to explain it. You know and everybody says, ‘Oh you got old’, but it just like changed instantly…”

The cost of Lyme disease for workers and caregivers is not well understood. “Prior studies that focused on productivity loss and activity limitations in Lyme disease have been confined to individuals reporting symptoms persisting for more than 6 months,” writes Hirsch.

But these studies do not examine the costs associated with delayed treatment — what occurs between infection and treatment – and are therefore “likely underestimating costs.”

[bctt tweet=”What happens when Lyme disease treatment is delayed?” username=”DrDanielCameron”]

“A comprehensive study of indirect and direct costs across the full spectrum of Lyme disease, before and after treatment, would give a more complete picture of the individual and population-level burden of this disease,” the authors state.


Related Articles:

How big is the risk of Lyme disease to your job?

Lyme disease can cost billions

Case report: Persistent pain and fatigue after treatment for Lyme disease



  1. Hirsch AG, Herman RJ, Rebman A, et al. Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study. BMJ Open. 2018;8(6):e021367.


4 Replies to "Impact of Lyme disease on working and caregiving"

  • debbie
    03/04/2022 (5:58 pm)

    This really didnt touch base on Lyme care giving or care touched more on late stage Lyme – cost and what happens if not caught early treatment and care. I was under the impression this article would help with caregivers that are not paid but instead family or friend or spouse of Lyme Patients and the difficulties not just do to cost but the daily day to day living with this demon of a disease. Is there another article(s) on the subject?

    • Carolyn
      03/14/2022 (8:15 pm)

      I agree. I have a 40 year old client with chronic Lyme disease. I’ve only been caring for him a few days and I could really use some advice

    • Kathryn Willette
      04/22/2022 (10:53 am)

      I agree. I’m retired, and at 67 with chronic pain, I’m taking care of my 36 year-old son who I knew had mold toxicity, but when he was tested, the doctor found Bartonella and Babesia. Just as we found out about that, we both got Covid, and he has gone off the deep end. I don’t know how to cope. This is not moving fast enough and I don’t know how much longer I can take this.,His head pressure is the worst, but he has sweats, insomnia, neurological and psychological problems, is delusional, paranoid and in pain all over. He’s only in ibuprofen and Tylenol, but he needs something to knock him out.
      Right now he’s on ivermectin, Bacitracin (spelling?) and plaquenil. Nothing seems to be working, and it’s been almost 4 months of constant complaining and saying he’d rather die.
      I wake up with dread thinking about how I’m going to cope that day and whom to call.
      I want to run away!
      On top of that, my ex is living here too and so I have no social life. None of my beaus will come over with him living here, while he supposedly gets his house remediated. It’s been over 2 years since he had the mold report done, but only had the basement air scrubbed! All this time, I thought he was working on getting his house fixed, and he was doing nothing, but coming here every night and morning, but when he had shoulder surgery, I took him and said he could stay until he could move himself. That was about 3 months ago, and I can’t stand him! He can’t even help me around my house because his arm hurts.
      My son can, but he’s so in a world of his own, it’s awful! Why don’t they have inpatient places for these patients? I want to jump off a bridge and have been neglecting my own health.
      I actually think I was bitten by a tick or something two years ago, because I got sick volunteering at a Children’s garden and I had an RA flare for over 6 months and have T felt well since. I haven’t been coy my dentist for 2 1/2 years and now can’t afford to get my implants for my teeth out in.

  • doree
    07/11/2018 (10:12 pm)

    I think we also underestimate the impact it has on parents caring for their young children… Lyme disease can take away a parents ability to be a competent, loving and present parent. EVERYONE suffers.

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