Lyme Disease and a Return to Running – Update

This is a follow-up from the first article on the devastating effects of Lyme Disease on a runner. My brother Jim has been wonderfully candid in sharing his journey through this illness and now into recovery and attempts at regaining physical conditioning.

Time for my physical update. As always, we have some good news and some bad news. Let’s start with the good news. I started exercising last week, and I am nearly completed with week two of my master plan. Since there are no real guidelines around on how to recover from Lyme and certainly no guidelines for previously well conditioned athletes specifically, I am making my own. I talked to my wife and to my brother (Coach Dean) to gain perspective and input. Then with their input decided to formulate my own approach to rehabilitation and reconditioning.

What I have done is combine running, spinning (stationary bike) and long walks. I have dropped the physical therapists plan of strength training, light lifting, etc. because that has proven to inflame the nerves and muscles in my shoulders and back. These left me in too much discomfort to do anything for a couple days. That is not progress. So, my approach combines difficult workouts with easier recovery workouts while not further inflaming or irritating the damaged nerves. I understand I will need to strengthen these areas at some point, but the inflammation still there makes doing this therapy counterproductive.

As far as the training itself, it has progresses far better and far faster than I would have imagined. Considering I hadn’t worked out in nearly three months and was so sick, I have surprised myself. In my first week on my new plan I did one spinning session of 30 minutes, very easy. I walked a total of 10.5 miles (three separate walks) and ran/jogged 17 miles on four separate runs. The interesting thing is the first run was three miles and I barely did 9:30 pace and my breathing was wild and out of control. I felt like I only had half my diaphragm working. But, it felt great to be out there moving. The pace didn’t matter, if felt great to move again. I went out three more times last week with 4.5 miles my longest run; and it was closer to 8:15 per mile pace. Breathing is still like a freight train, but the running already felt better.

Week two, has continued well. I cycled 45 minutes, will do 30 minutes today. I’ve already walked 8.5 miles, but probably won’t add to that. Now here is the kicker. I already have 21 miles of running in this week. I will probably run once more this week, so I should end with 25 miles. As if that wasn’t good enough, I did 6 miles yesterday…at 7:12 per mile pace!! I have no idea where that came from! I felt great! Breathing was tough, but still better than at the 9:30 pace the week before. Go figure.

My theory regarding my diaphragm is that running is as good a therapy to fix it and strengthen it as anything else. My brother had mentioned the breathing devices they use for asthmatics and other respiratory ailments as a possible way to go. The experts do recommend breathing exercises. Well, I figure 7:12 pace for six miles must be a pretty good breathing exercise.

So after two weeks, I really feel great (comparatively speaking). But there are still some pretty big issues, which I’ll explain next.

Sleeping at night is still a pretty big problem. Most of my sleep issues are built around body aches still in my shoulder and back. They are there 24 hours a day. Kind of like ache from a really hard workout, only it just doesn’t fade away!

I took Ambien for awhile a few weeks ago. It does work great. Eight hours of solid sleep and nothing disturbs you. I hate taking any kind of medicines whatsoever. I took it thinking that with good sleep it will help me heal better. I think it did help. The sleep over those two weeks was very valuable. However, I don’t want to take Ambien all the time. So, I voluntarily have stopped taking it. I am trying Melatonin (mixed results) and beer (good results).

We also bought a new organic mattress and bed which will be delivered in a couple weeks. Part of the problem for both of us is a bad mattress. I know this new one will help a lot.

Now, let’s talk my leftover aches. The experts (sarcasm) tell me it will heal eventually over time. PFFFFFTTTT!!!!!!! (the sound of someone making a raspberry noise) So I went to see a doctor (yes..Dr. Number 9) about the continued ache in my shoulders and back. It didn’t take him long: there is nerve damage in both shoulders. The good news is that it’s only one specific nerve (the name escapes me something like Lymus painintheshoulderusmaximus). All the other nerves didn’t get affected, which he thought was “interesting and pretty cool.” Doctors!! The pain in my upper back all comes from the shoulder nerve and me compensating for the discomfort.

Dr. #9 said he can help me with the muscular aches, but the nerves need to heal. However, here is where he differs. I’ve done my research – I asked him about acupuncture and he recommended it highly for my particular problem. I got a referral from him to see an acupuncturist that he highly recommends. He says this guy has done some amazing things with nerve damage. So now I have a meeting Monday evening with him to discuss my issues. “Discuss” is the key word. I am openminded about treatments but I want to hear what he has to say and see if it makes sense. If it does then I will try it.

Over the next two weeks I will have twice a week muscle work by doctor number one (really #9), Tuesdays and Thursdays. If the acupuncture guy works out, I would probably have two sessions a week for two weeks or so.
The plan is nearly in place, now it just has to all work.

Sorry if I rambled, it’s therapeutic to sometimes write all this crap down. (Jim. H.)

[Coach Dean Note: Indeed several points are important here.
First, a word on the running paces he quotes. Jim is a very accomplished runner. Do not compare yourself with his running paces. Comparatively speaking, he is running “slow” by his normal standards. His 35 years of running at a very high level allows him some luxuries not all of us will have. Like they say in advertisements – results will vary; not a typical example. That doesn’t mean we cannot learn a lot from his approach. On the contrary, I firmly believe that we are documenting novel information that we both sincerely hope will help others.
Second, notice that upon returning to running – even when uncomfortable – so often runners report that it feels “better” or is reported as “freeing” or that there is a sense of “freedom.” This is a message to all of us who take our running for granted. Celebrate your good days and bad days… at least you are able to do it!
Third, his final comment is a critical message to any injured or rehabbing athlete. We often rely on our running as a stress reducer and coping mechanism. Unfortunately, most of us do not foster other methods of coping and when our running is taken away we suffer doubly – physically and emotionally. Much like the series of articles written by Christina (Plantar’s Wart surgery) expressing our experiences is one outlet – whether privately by journaling or publicly in a blog. Find those outlets before you drive everyone in your life crazy!


We welcome your comments.]

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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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18 Responses to Lyme Disease and a Return to Running – Update

  1. JED says:

    Dean:

    I’m a first time reader to your blog. Your observations have been enlightening to me. I was diagnosed with Lyme Disease about 2 years ago and have been on two 8 month bouts of antibiotic (oral and IVs) treatment plans. I’m currently on month 4 of my 2nd bout, taking 4 oral antibiotics, gama goblin and penicillin shots every 2 weeks, and IVs every other 2 weeks. I’m hopeful that this 2nd round will get me back on my feet and out of bed more often and back to some normality to my life. The first round got me back on my feet in 8 months and back to work (I’m presently on disability). I too had a run of numerous doctors, 12 in fact, and 5 years of waiting and wondering what the heck was wrong with me. Finally I found the answer after taking myself to The Mayo Clinic in AZ. The answer gave me relief that I wasn’t going crazy, but sad that I had lost so much, even the most this past 12 months. Because I can’t work right now and have limited social security disability benefits and fighting with my private disability company for 2 years now (Sun Life Financial – yes I want everyone to know who these folks are because their delay tactics have ruined me financially). I’ve had to file BK and my home is in foreclosure and will be auctioned off on Dec. 5th. Not what I expected at this point in my life, but I’m doing the best I can and that’s all I can do at this point. I am 46 years old today, once a collegiate football player, an active martial arts expert, outdoorsman, skier and snowboarder, ATV nut, fly fisherman, river rafter (class 4 & 5), hunter, father of 6, software marketing executive, world traveler, and more. For the last 2 years I’ve been a bed and house ridden man in pain all day, every day. I try to workout on my elliptical, stretch 4 times a day, do girl push ups (once bench pressed 355 pounds). I too have found that PT is useless (spent thousands to figure that out), even light weight lifting kills me for days afterwards. I walk and use my elliptical, but find that I have to really pace myself and not over do it or I pay big time for it the next 2 to 3 days, sometimes in bed all day having to take 2 to 3 naps a day I’m so Fatigued. I haven’t yet found my master exercise plan that makes me feel good on a consistent basis and have come to the conclusion I may never have any consistency ever again. My Dr specialist now tells me my condition is Chronic and I will likely have to take antibiotics off and on until we find a baseline to work with since after my first round of treatment got me back on my feet, but after stopping treatment I was back on my back in bed after 4 months. Anyway, just telling my story to someone who understands, especially the sense of loss after having lived an active and athletic life is theraputic. I’m not a runner, never have been even though my football days forced me to be on occassion (summers getting in shape). However, I will be watching to hear more about your progress and suggestions on what’s working for you and how I can adapt my work outs to get similar positive results. I want my life back and hope you too can get yours back as well. Here’s wishing you hope, courage, persistence, happiness, and a never quite or give up attitude. From an athlete who knows and cares.

  2. Dean Hebert says:

    JED,
    Thank you for reading and dropping by. Your story reinforces everything my brother has and is going through. I know that Jim was not diagnosed with only the Lyme but two other tick borne diseases. All have had to be treated.

    Your struggles with regaining conditioning will resonate with every athlete and especially my brother. I hope some of Jim’s approaches can give insights into getting back. It’s still a work in progress.

    Please drop by and keep us abreast of your progress. I would like this whole thread be something that people in similar situations can learn from since there is so little out there in dealing with Lyme Disease as an athlete.

    Best thoughts to you.

  3. Jim says:

    Jed…I have been pondering how to respond to your message. Needless to say your trials and tribulations struck a chord with me. And I have only been dealing with this for a few months. I cant fathom years of this. I was asked by my doctor last week…can I deal with these issues that I am having for a year…2 years…and I said flatly I am not going to have these issues in a year..I wont have them in 6 months. I have gone through the negative thoughts phase of being sick, and frankly the only way i can handle this is by fighting back…aggressively. Thats when I sat down and made my exercise plan, and made a plan on how I was going to get better. I am ruling nothing out. Chiropractors, Acupuncture, holistic medicines, voodoo…anything and everything is on the table. I will post again to let everyone know how the acupuncture treatments go. I am looking forward and feel positive that this is going to work to alleviate my aches and pains. I have to feel that way.
    I hesitate making suggestions to you, we are all different and your case is far more serious than mine, but I say, once an athlete, always and athlete. Make a plan, stay to it as best you can, plan how you are going to get better. I certainly understand the financial issues involved here, luckily our issurance covers most of this stuff, and may even cover the acupuncture. obviously that is quite helpful. Please let us know how you are progressing, and if you need a place to vent your frustations, I can give you my email address. at a minimum..I can listen. Good luck

  4. Cathy says:

    Thanks for your story. I have looked high and low for information regarding how to return to exercise post lyme. I have been a distance runner for years who after recovering from plantar fasciitis was just starting to run distance consistently when I contracted lyme disease about a year ago. Since then, I have struggled to exercise consistently as for me the symptoms such as the fatigue and pain (for me it is primarily in one of my legs) comes and goes. I have had two cycles of doxycycline (the first helped but the symptoms returned about a month later) and the most recent has done little. I have been weight training with the same person for about 2 1/2 year but have not been able to strengthen my leg since the lyme disease (about a year). I try to walk a few miles a couple of times a week but continue to get fatigued. I have also seen multiple doctors (orthopedist, physiologist, podiatrist, sports medicine, physical therapy, acupuncture) most of whom aren’t sure what to do because of the lyme complication. My PCP doesn’t really know what else to do. If you have any suggestions of helpful physicians or acupuncturists in the MA area (I also live there) I would greatly appreciate it as I definitely miss running as I have realized it was a major coping mechanism for me. I am also curious about not doing weight lifting as well as the potential to get nerve testing and ways to heal nerves. If I am able to regain the strength in my leg, I will never take it for granted again.

  5. Jim says:

    Cathy

    I am hearing more and more about cases such as your and Jeds. And the frustrating thing is that no one seems to have information for us. Please email me directly where we can chat some more and Perhaps I can offer some advice help. At the least I can listen.

    jim.hebert@puma.com

    Jim

  6. Ambor says:

    Dear Jim,

    I was a Triathlete until 9 months ago when i was diagnosed with Lyme Disease. I was told when i was diagnosed that we had found it early enough and that I would recover 100% in only three to four months. At the time i felt blessed that i was as in tune with my body as an athlete that I was able to notice the signs early to get treatment before it manifested.

    This was 9 months ago. I am a 26 year old women who is struggling greatly with my new life. I don’t want to accept where i am and want to fight back. I feel as though i am on an roller coaster and each new challenge that is put on my plate feels as though it sets me back further. I’m losing my passion that drove me.

    I have felt completely alone in this situation and the majority of my very active friends and coach whom all used to be my support group are at a lose along with me. Some try and push me and i respond poorly to being pushed feeling as though none of them understand my position or how i feel. If i run or even stay up to long I pay for it days after. I’ve not known how to even start getting back into my regular active lifestyle as the fear of crashing holds me back.

    I did a search on line (Lyme athlete) and found your blog. It immediately touched my current situation. There is nothing out there to help active people return to their activities… Knowing that i am not alone in this situation (and it is not just a shear will power issue) gives me a little more hope. Finding understanding gives me a small light at the end of this dark tunnel which feels never ending. The more information that i can extract from you the better. Please do not stop rambling!

    Ambor

  7. Dean Hebert says:

    Ambor,
    I’ve forwarded your email to my brother. We are both following several people in their journeys.
    Hang int here and keep in touch. I know my brother will most likely follow up with you.

  8. Another Athlete Sidelined by Lyme says:

    I am a first time reader of this blog, but former international level athete/coach who was diagnosed with Lyme after having it (and going to 10 docs) for 4 years. My story sounds a lot like the above.

    I am also a physical therapist and researcher, and as I am recovering, I am looking to do some research, because you all are right- there is NOTHING out there regarding guidelines for returning to exercise. I think the first place to start is with collecting stories and figuring out what worked for folks and what did not. If there is interest in something like this, I could set up a website or something to get the ball rolling. Any interest?

    • Saul Shocket says:

      Hi;
      My name is Saul Shocket & I’m writing in answer to your request for athletes diagnosed with Lyme. I’m a world champion & record holder in the sport of powerlifting. I’m also a professional strength & conditioning coach. I was diagnosed with Bells Palsy & Lyme last August. Although it appeared the Lyme was caught within 5 or 6 weeks, I did lose some sight in my rt eye. My pcp put me on a 20 day cycle of Doxycycline & prednisone. The Lyme symptoms seemed to clear up well, but then due to optic nerve inflamation, found my rt eye compromised. I’ve since been treated by a LLMD & am on long term anti-biotic & anti-malarial meds.
      Although some symptoms persist, I’ve regained much of my strength & fitness level, but not 100%.
      I’ve found that cycling my workload very carefully & conservatively in order to assist recovery has helped. Saul Shocket

  9. Dean Hebert says:

    I’ve forwarded your comment to my brother to be sure he gets it.
    Great idea and just the kind of thing I was hoping to develop as a result of starting this entire posting and follow-up.

    Thanks

  10. Virginia says:

    Hey Guys

    Well, I’m no athlete, but I did walk 4-5 miles a night, exercise daily, ran a business, took care of a family and my huge yard. I also lived in the woods. It took 12 years and 15 doctors to find this horrible disease. After years of face pain, headaches and seizures, someone suggested lyme. I live in Missouri and if you talk with the doctors here…”there is no lyme in Missouri”. I have lyme and “babs”. I have decided to go the natural route since the abx just made me too sick and didn’t have permanent affects. I am feeling stronger and have returned to work. Oh, I am off sometimes with fatigue, but basically life is a little better. I find that acupuncture did help my CNS symptoms and I use a far infrared light daily. That really does seem to help. I am almost strong enough to start exercising again, but I am air starved from the babesiosis. So, I use oxygen when necessary.

    Dr Burrascano does believe that some can exercise their way out of lyme..Have any of you heard this?

    Thanks,

    Virginia

  11. Dean Hebert says:

    Virginia,
    Thank you for coming by. I have forwarded your comment to my brother. Do yu notice a theme with Drs. and this disease? It doesn’t exist in MO huh? It doesn’t have “X” symptoms huh? There is no such thing as “chronic” Lyme huh?

    I have not heard about the exercise your way out of Lyme however, to me it does appear that there is some foundation to that approach. Whether we talk about retraining bodies to “use Oxygen again” or to rehab paralyzed diaphragms… it seems exercise would help.My brother has certainly benefited from getting back out exercising. And it fully appears that it has expedited his return to “normalcy”. But of course it would be hard to prove without a control …even then it would be hard to prove because everyone suffers so differently from the disease.

  12. Kay says:

    Dear and Jim,
    Thank you for the blog post.

    Before-Lyme diagnosis, I was running about 40 miles a week. Post-Lyme, I cut back to 5 miles per week (if any) due to aches and fatigue. Muscle aches were mostly limited to my hip flexor area and makes any sort of cardio nearly impossible.

    I read Jim’s story and started to cry. I guess it’s a realization that my once-healthy and VERY active lifestyle is no longer the norm. Still have yet to find an activity that will help me cope to replace running.

    I’m on my second round of doxy and been referred to a Rheumatologist but interested to hear how you continue to respond to Fitness Program. I’ve asked my Physical Therapist for clearance but really think they have no clue what to do with me. Should I “defy” them and just head back to the gym?

    Thanks for listening and sharing your story. I was beginning to feel like I was “crazy” and alone.

  13. Dean Hebert says:

    Kay,
    As you can see from the comments all along the blog on this topic you indeed are not crazy nor alone. Both of those feelings seem to be common with this.

    We cannot advise you to go against “doctor’s orders”… we aren’t Drs. But we do encourage self-experimentation. If you can learn anything from the approaches here see what works for you. The most important thing is to be diligent, patient and take all results of your experimentation as “feedback.” Make adjustments and continue on.

    I’m forwarding your email to Jim so he can correspond with you personally as he now does with a number of people we’ve met here.

    PS
    Many of these stories have brought both my brother and I to tears. We all feel the pain because we all know what is lost when we can no longer do that activity we love… running in our cases.

  14. SLK says:

    I am a new runner training for my first 1/2 marathon. So far my longest training run was 10 miles (that was 9 days ago). I got a bug bite somewhere between 7-12 days ago. Luckily it presented as a bullseye and a doctor friend suggested I immediately seek treatment for Lyme Disease.

    I’ve started a 14 day antibiotic treatment, though the doctors here didn’t actually test for Lyme, it is more a prophylactic. However I’ve had very low energy the last week and a stiff neck and jaw. This morning my run was supposed to be an easy 3 miles, I ended up walking 1/2 a mile of it and I’m sore this afternoon. I typically wouldn’t feel fatigue after a run like that in the slightest.

    In short, I’m at a loss for whether I even have lyme disease, and if I do how long it should take to recover if it is treated in the first 2 weeks.

    I’m interested in your stories and experiences.

    Stacy

    • Dean Hebert says:

      Stacy,
      I will send your note to my brother. You can read here all the stories. My first response is to be aggressive in diagnosing and treating yourself. Do NOT wait. Get second, third and fourth opinions if you must. You’re a lucky one in that this is still early.

  15. Keri says:

    Hi, thank you for sharing your story. I have battled Lyme for about seven years. For the past three years I have improved tremendously, through natural treatments and returning to exercise. I am an avid runner and teach aerobics and personal train. I have been off treatment for about two years however, my severe symptoms of dizziness and tight legs never went away, even with all my exercise. I am glad you are starting exercise with progression, because, two months ago I was in an extreme uphill bike race and hurt my knees and strained my quads. The injury was not that bad however I kept getting worse and eventually could not walk or even stand again and I knew something was terrribly wrong. I have come to learn that Lyme will attack an injured area and it definately has. I miss running, I miss moving, and man do I appreciate even more how much better I was doing just a year ago. I will go back on treatment and heal these knees and muscle weakness but they will not heal without me attacking the lyme again and killing it all the way. So take the exercise slow, do not hurt yourself and you will see that exercise will be very beneficial. I definately became exercise obssessed because as I got better I wanted to do all the things I had not been able to do when I was bed ridden with this dang disease. Exercise was helping but the injury has set me back big time. I will pray that all treatment that you need to fight your Lymes works like it should in your body and as you said, appreciate what you can do.

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