Lyme Disease & Running: A Prescription for Physical Activity

Though this article goes a bit beyond my usual scope of technical and mental game running related topics it is a follow-up to previous posts. My brother Jim forwarded me a link with a lengthy article on the topic of Lyme disease and all its related complications. Of note, there is a section on physical rehabilitation. This is special because very little about regaining physical condition – especially for athletes – exists. Though this does appear to be targeted at athletes it does appear to be more aggressive than is often recommended (or at least from all that has been passed along through personal experiences).

Here is an excerpt from that article:

Please enroll this patient in a program of therapy to rehabilitate him/her from the effects of Lyme Disease. If necessary, begin with classic physical therapy, then progress when appropriate to a whole body conditioning program. Such therapy must be graded, carefully individualized, and be performed on a one-on-one basis, at least initially, to ensure the maximal amount of supervision and guidance.

THERAPEUTIC GOALS (to be achieved in order as the patient’s ability allows):

PHYSICAL THERAPY (if needed):

1. Relieve pain and muscle spasms utilizing multiple modalities as available and as indicated: massage, heat, ultrasound, TENS, “micro amp”, etc.
2. Increase mobility while protecting damaged and weakened joints, tendons, and ligaments, to increase range of motion and relieve stiffness.
3. Physical therapy alone is not enough. The role of physical therapy here is to prepare the patient for the required, preferably gym-based, exercise program outlined below.

EXERCISE Begin with a private trainer for careful direction and education.

PATIENT EDUCATION AND MANAGEMENT (to be done during the initial one-on-one sessions and reinforced at all visits thereafter):

1. Instruct patients on correct exercise technique, including proper warm-up, breathing, joint protection, proper body positioning during the exercise, and how to cool-down and stretch afterwards.
2. Please work one muscle group at a time and perform extensive and extended stretching to each muscle group immediately after each one is exercised, before moving on to the next muscle group.
3. A careful interview should be performed at the start of each session to make apparent the effects, both good and bad, from the prior visit’s therapy, and adjust therapy accordingly.

PROGRAM

1. Aerobic exercises are NOT allowed, not even low impact variety, until stamina improves.
2. Conditioning: work to improve strength and reverse the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics and weight lifting, using small weights and many repetitions. This can be accomplished in exercise classes called “stretch and tone,” or “body sculpture,” or can be achieved with exercise machines, or carefully with free weights.
3. Each session should last one hour. If the patient is unable to continue for the whole hour, then modify the program to decrease the intensity to allow him/her to do so.
4. Exercise no more often than every other day. The patient may need to start by exercise every 4th or 5th day initially, and as his/her abilities improve, work out more often, but NEVER two days in a row. The days in between exercise sessions should be spent resting.
5. This whole-body conditioning program is what is required to achieve wellness. Simply placing the patient on a treadmill or an exercise bike is not acceptable (except briefly, as part of a warm-up), nor is a simple walking program.

In comparing this prescription with the many comments from afflicted readers there may be some good guidance here. However, as my brother surmises (and I actually agree with him) to NOT do aerobic exercise seems counter-intuitive. In Jim’s case, he had diaphragmatic involvement. How else do you exercise the diaphragm? Sit-ups do not. My brother’s logic was to get himself to “breath harder” to exercise the diaphragm in a natural way. That of course means – aerobic activity. And how else does stamina improve other than through exercise? Be clear, we aren’t saying go run marathons while recovering; but getting out and walking and moving to the degree you can and progressing seems reasonable.

Anyway, we certainly do not have all the answers and would never “play doctor” in telling Lyme disease sufferers how to go about their rehabs. However, as an experiment of one – on a roller coaster recovery path; integrating aerobic exercise (to the degree possible) clearly has enhanced Jim’s recovery. [Last week he emailed me to say he ran 40 miles for the week. But he makes it clear he is NOT 100% and remains diligent with a holistic training program.]

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About Dean Hebert

I’m a mental game coach, author and speaker. I work with individual athletes, parents, coaches, and teams on sports performance enhancement. Beyond my academic post-graduate work in sports psychology - the psychology behind athlete performance – I am a certified Mental Games Coaching Professional (MGCP) and certified hypnotherapist. I’ve authored several books and hundreds of articles. “Coach, I didn’t run because…” (2008) is a seriously light-hearted look at making excuses not to workout and how to overcome them. “Focus for Fitness” (2009) and “Screw the Goals Give me the Donut” (2010) are two of my eBooks on mental game approaches for the everyday athlete. I wrote these because I believe that everyone can benefit from the powerful mental techniques that the world’s best athletes use. I have been cited in Runners World, Best Health magazine (CN), SWEAT Magazine, and the Washington Examiner amongst many other publications. I have been a featured mental games coach in Runner’s World and for the internationally acclaimed trail running resource - trailrunningclub.com. I also regularly appear on sports and fitness talk shows such as LTKFitness, Runnersroundtable and for more than three years I have co-hosted a weekly video series with Coach Joe English for Running-Advice.com. I specialize in mental toughness training. My clients include tennis, synchronized swimming, golf, race-kart, soccer, motocross, volleyball, MMA, cycling (road, off-road, time-trialist), running, duathlon and triathlon, basketball, football and baseball athletes. I have coached world-class athletes and athletes internationally. I have a passion for working with youth athletes and helping them apply mental game skills and techniques to all areas of life. Most importantly, my aim is to have people enjoy sports and life to their fullest through peak performances.
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10 Responses to Lyme Disease & Running: A Prescription for Physical Activity

  1. joyce Callahan says:

    I think it is great your brother is doing well with his protocol, I truely mean that. Being someone who suffers from Chronic Lyme and a co-infector Bartonella
    I think you need to be real careful in the “aeorobics-pushing to breath harder” advice. I have 2 inflamed knees that are so large at present, one will have to be tapped in the next few days for relief. I also suffer from Tacchycardia, yesterday at my DR.’s my pulse was running a irregular 143, and has been running over 100 for 9 months. I am under the care of a Lyme Dr. as well as a Cardiologist, and I also use Acupuncture and Herbal Tinctures from a Dr. of Chinese Medicine, so I am very openminded.
    I am always so heartened to hear when someone is doing better, and 40 miles a week is outstanding, for a healthy person, never the less one as sick as myself.
    I have to say, I would never, ever encourage people to mess around with their hearft/lung situation without being under the care of a Dr., not just a Physical Therapist. As your brother knows, PT is wonderful and helpful, but to insinuate that a Personal Trainor is qualified to be making these kind of calls, is teetering on the edge..at least for me. I tried just “walking through” the pain, after being motivated by a story like your brothers…. and it almost killed me. Caution. Best wishes to your brother.

  2. Dean Hebert says:

    Joyce,
    Very good comments and you certainly underscore some key points. Of course do everything under your drs. advice and guidance. And this disease is clearly one that manifests itself differently in different people so you have to read your body – something we cannot underscore enough.

    The purpose of all these blog posts is to share what is being learned by individuals in an area that is poorly understood by the medical community. Therefore sharing case studies and individual experimentation becomes valuable for all. It’s not saying “go do this”. It is saying, “I tried this and this is what happened”. I hope my caveats all through the articles underscore working with not against your own doctors. Through all the stories we’ve received it is obvious that the medical community does not have a handle on this disease – not treatments, not rehabilitation and most certainly not in how to treat athletes. The “disease model” of care doesn’t work well in general and works even worse with active lifestyle people.

    If anyone were to try things others have tried and have adverse effects, they most certainly should not continue. Yikes!

    Stay the course and keep getting better – and know you aren’t alone.

  3. mo watson says:

    O.K., just one more post. I second the training aspect of recovery. We know that exercise kicks the immune system up a notch. Before I was diagnosed (from the extent of damage to my brain shown by MRI, my doctor thinks I had it 4 months before we caught it, but I was having weird neurological issues for at least a yr. or more), the only time I felt symptom free was when I was totally focused on an intense workout. It was after a 3 day vacation of lots of sitting on a bus with my mother that the real blast of deep muscle pain and joint swelling took place. My doc also said no aerobics, but the only way to make my hands stop feeling like they have been dipped in a deep fryer is to run. They hurt for about 10 min., and then as my body gets the rythm and starts to warm, the pain receeds, and today like other days, it has stayed away. Maybe I am too hopeful, but I’m convinced that my body can fight this thing, if I just give it support with excellent nutrition and exercise….

    • Anita Healey says:

      Hi Mo,
      I am so happy I came across your post as I know feel like going for a run again;) About 5 months I started running and trained specifically for city2surf in Sydney (14km) a I did really well and got totally hooked on running! I decided to run the half marathon in Sydney in September as soon as I finished city2surf. In between my 2 big races I travelled to Norway with my 2 children to visit my family and carries on my training for the half marathon with regular long runs. I even took part in 2 x 10 Km races in Norway. This new love for was amazing. Unfortunately during a race I did in the woods I was bitten by a tick… The little devil has given me Lymes disease;( I didn’t notice until 36 hours later, that a tick was in my leg. I didn’t think anything of it and 2 weeks later I finished my first half marathon in under 2 hours – you can imagine how proud and fit I felt! 2 weeks later I wake up with legs that can hardly carry me, muscle and joint pain in both legs and symptoms worsening rapidly. The bulls eye rash was also present! When I went to see my GP, she had no idea what was wrong and I had at that point not connected the tick bite with my symptoms. Luckily when I laid in bed that night I came to think of the tick bite from the run in the woods 6 weeks prior, I went straight back to the GP in the morning and got her to prescribe 2 weeks of antibiotics. I hope this means i got inearly with treatment! Blood test were taken and they tested positive for Lymes. I am awaiting an appointment with a Lymes specialist at thehospital next week and I have started a second course of antibiotics (28 days in total), and I am hoping I will get a lot more of my questions next week. But, I so want to go out for a run to feel fit and happy again but am worried I may make things worse… Anyway, I am going to beat this and carry on my fit lifestyle, right!? Anita

  4. steve says:

    I’m also a chronic lyme sufferer who went undiagnosed for years. I have major neuromuscular deterioration in both lags, and spasms as well. Througout all this, I also kept working out, even running some, but mostly excercycle and weights. I think all this kept me out of a wheelchair. Now I’m diagnosed, under IV treatment, and I run about 2-3 days a week even with my PICC line in my arm. My philosophy is to get the antibiotic deeper into my tissues and body, and Lyme is an anaerobic bacteria—oxygen kills it.

    I’m certainly not a doc and every patient is different, especially those who’ve lost mobility and stamina. They should avoid aerobic activity. Somehow I got luck as a life-long runner and kept my stamina. Just ran a 6:30 mile the other day…slow for me at 41 years, but beginning to feel good again. Pre-antibiotics I would have suffered days of pain in legs, feet knees and back had I been doing this.

    Each Lyme patient is different, but if you’ve got the stamina and joint mobility, why not run. Just as long as it’s not so much you wear down your immune system.

    Good luck to all with Lyme.

  5. Trish says:

    OK, so this post is from last year, but I came across it by chance today, and I thought you might want to see this article for an explanation of why aerobic exercise is not recommended for patients with Lyme: http://www.cfids.org/sparkcfs/working-out.pdf. This article was given to me when I was diagnosed with Lyme, and while the article only specifically mentions CFIDS, it was explained to me that exercise in Lyme behaves very much like exercise in Chronic Fatigue sufferers. Yes, as you say, “to NOT do aerobic exercise seems counter-intuitive,” but from personal experience, I can concur with Burrascano’s recommendation to avoid aerobic activity until the Lyme patient is already recovering. You’d think that one would feel better with aerobic exercise, but my experience was that — until I was on antibiotic treatment and feeling better — if I would walk on a treadmill for even just an hour, I’d be violently ill for a day and otherwise wiped out for several days. So, while this article isn’t hard and fast science yet, it’s definitely worth looking at.

  6. Penny B. says:

    Not being able to exercise is so hard for me. I went from being able to do an IRONMAN type workout – exercising for a total of 15 hours to not being able to one lap in the pool or just walk for 1 mile….forget about running….I can do that for about 50 feet and I feel exhausted. Doing any type of physical activity totally wears me out and I have to take a long nap and just rest for a day or two after just to recover. Does anyone know why this happens with Lyme disease? I’m in my 2nd month of antibiotic treatment. I only had undiagnosed Lyme for about 6 months before being treated. I am getting better so I feel like I can exercise and when I do…it kicks my butt. Any info you can provide will be helpful. Thanks!

    • Anita Healey says:

      Hi
      So it’s been about a year and a half since your Lyme disease diagnosis – how are you now? Are you out running again? I so hope so… Please let me know! I was diagnosed with Lymes 2 days ago following a tick bite 7 weeks ago now. I have been on antibiotics for 2 weeks and my joint and muscle pains are improving a lot. I still have not been out fora run, fearing it will hurt too much – maybe I should just put the trainers on and check it out… Anita

      • Dean Hebert says:

        Anita,
        My brother is doing great and completely recovered. I will forward your note to him. He will be writing an update soon that I will post. There is a lot of good input from other runners here. Be sure to read through all the advice. As you will see there is no one pattern no one answer. Hang in there and be patient.

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