Running & Lyme Disease

Jim is a guest contributor. He is addressing a little written about topic – and a personal experience. We welcome your comments and contributions to this topic.

I heard the voice on my answering machine, but the words weren’t sinking in. The voice was from a neurologist who I had seen the previous week, and the words were, “you have tested positive for Lyme disease.”

Like any good story, let’s start at the beginning. In mid June, I had decided to make a change in my fitness level. I was tired of weird muscle injuries, strange joint soreness, and a general feeling of poor fitness. I hired a personal trainer, upped the running mileage, and added in some spinning sessions to balance things out. After three weeks of that regimen I was feeling better and better. On week three, I was up to 45 miles of running, two very hard spin cycling workouts, and three weight training, core training workouts. Things were going well.

On Sunday July 7 I had a hard time sleeping as all of my muscles were achy. Of course
I thought I had over trained, so I would back off the coming week. Monday and Tuesday
also proved to be sleepless nights with incrased achiness. I went to my training session on Wednesday, and could barely lift easy weights, and had to cut the workout short. By the time I got home I was very sore. As the evening went on, my right shoulder started to ache. I was awake all night; finally at 2 AM I had my wife take me to the emergency room as the pain had gotten to an extreme point. It is fair to note that I don’t go to doctors. I don’t get sick, have colds or the flu. Other than running related injuries, I am incredibly durable. So, going to the emergency room was a sign that things were not good. The ER doctor gave me a cursory look over, said I had shoulder bursitis, gave me Vicodin and muscle relaxers and sent me on my way. I looked at him and told him he was wrong and left.

Vicodin and muscle relaxants did nothing for the pain the following day. I made a call to my personal doctor and got to see him as he was closing. My doctor has known me for many years, as he is a runner also, and I coached him when we were both members of the local running club. When I walked in his door and saw the look on his face when he saw me, I knew I was in trouble. By this point I was completely hunched over from pain; both shoulders, neck and back all now involved. I was also soaked with sweat, shaking, and couldn’t lift my arms to my waist. He gave me an exam and thought I had torn my rotator cuff. He got me an appointment with a orthopedic surgeon, and gave me Oxycodone for the pain and anti-inflammatories for my shoulder. The pain meds got me through the weekend, but I was in agony. I couldn’t feed myself, brush my teeth, etc.

The orthopedic surgeon checked me out. He wasn’t sure my rotator cuff was torn; and took x-rays which were negative. At the same time, he didn’t like what was happening with my neck and back. He set me up for MRI’s for my back.

Two days later, MRIs are done and a day after the results come in: bad news – high grade stenosis of my spinal cord. This is not good. Now I’m off to see a neurosurgeon for the next step.

So, the neurosurgeon checks out the MRIs and discovers there is an error; it should have read “ without high grade stenosis” but was accidently typed up as “ with a high grade stenosis.” Kind of a major typo…but a great relief. It was at this point that he thought my problem was a virus, and sent me to a neurologist.

The neurologist checked me out, had me get a CAT scan and blood tests. The CAT scan eventually came back showing my diaphragm had some issues, but nothing else. That made sense as my breathing had been very bad, and it’s possible for the nerves in the shoulder to affect the nerves that go to the diaphragm. But the blood test was the ke, finally a diagnosis….Lyme disease.

Two days later, met with my personal physician again and was started on 28 days of tetracycline to fight the Lyme disease. From my first ache in my shoulder to the final
pronouncement that I had Lyme disease took almost four weeks. In those four weeks I saw five doctors, and had several misdiagnoses. Also during that time I had many sleepless nights. At one point I went almost three days straight without sleeping! I would just pace the rooms in my house for hours on end. I was unable to sleep because of the pain (even though I was on strong pain medicine).

I also started physical therapy at this point, trying to get some strength and range of motion back into my body. The physical therapists were great, helping to get motion and relieve some of the pain I was in. I can’t say enough about what they did.

Fast forward two weeks. So, I am two weeks into taking the medicine, and my doctor suggests I see a Lyme disease expert to answer a lot of my questions. He was excellent! He also had me tested for two other rarer forms of tick born disease: Erlichia and Babesia. He said the chance of me having those was very slim, as he had seen only one other case ever. Of course, I tested positive for those as well as Lyme disease. Erlichia is very similar to Lyme and can me treated with the same meds. Babesia is sort of like malaria, and needs to be treated with another medication.

So, here I am almost eight weeks after the initial pain, three days away from finishing my 28 day treatment of tetracycline. How do I feel? After the first two weeks on the meds I showed great improvement but, the past two weeks have yielded almost no further improvement. My shoulders and back still ache. I am still weak. And my breathing is still bad. Next week I have more blood tests to see where we go from here.

Now, the reason I have written this is that I have not found any information about running, exercise and Lyme disease. So maybe I will be the first.

I have gone for 1-4 mile walks everyday over the past 4-5 weeks (the first three weeks I couldn’t move). About 10 days ago I attempted to jog for the first time. The only way I can describe it …it was like my body had never run before, and didn’t even know what to do. My brain said run…my body didn’t understand the message. I got about 25 yards of stumbling shuffling, then had to stop. I was completely winded. I attempted this every day, finally getting to three minutes of shuffling with five minutes of walking. I did a total that day of 15 minutes of total running (5 x 3 minutes). It was around a 10 minute per mile pace, but it felt like I was racing because I couldn’t breathe. My form was terrible, and my arms and shoulders ached the entire time.

I progressed slowly; five minute jogs followed by walks… 20 minutes total of running, then seven minutes of running followed by walks… 21 minutes of running, etc. I finally forced my self to run one mile in about 10 minutes without stopping. I progressed to 1.5 miles, and the next time to two miles and so forth. I am now up to 40 minutes of running, at about a 9 minute mile pace. My lungs are still the major problem. Not sure if its disease related issues, or fitness issues or both. Hopefully we will find out more in the coming weeks.

PS
Jim is my brother who lives in MA. We’ll follow up in the future to let you know how he progress. Coach Dean

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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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75 Responses to Running & Lyme Disease

  1. Patricia Howell says:

    I know it seems like it took forever for you to get diagnosed but it appears that you are blessed with very open minded doctors. Most Lyme disease sufferers are misdiagnosed for years before receiving any relief.

    Getting better initially and then not progressing or getting worse is common on the path to recovery. You really have to stick with it and be sure your doctor is aggressive. The Herxihimer effect is normal (getting worse when starting a new med before you get better). I promise you do start to get better, though it may take longer than you would ever imagine.

    As for exercise and Lyme…Exercise can help but my specialist suggested that during the first few months of treatment that rest is far more important for a full recovery. Heat is another killer with Lyme, I am exhausted and have far more symptoms in the heat/sun than when it is not hot. So if exercising try to do so in a cool place, that may help. My 15 year old son has gotten to where he feels better if he exercises every day…but it has taken almost two years to get him to that point. Rest is key to recovery, I cannot stress that enough!!!

    Of my family of six, five of us have Lyme Disease and all of us have multiple co-infections. My 10 year old and I have Babesia, she takes mepron and I take omnicef to help combat those infections.

    Be sure the co-infections are treated, you cannot treat Lyme successfully without treating the co-infections. Some other co-infections that you may want to be tested for; bartonella, STARI, tularemia, anaplasmosis, rocky mountain spotted fever, and Ehrlichiosis. The five of us each have one or more of these. It’s a tough little spirochete but it sounds like you are getting good care.

    There are tons of good websites with info.
    Here is one that will point you to a bunch of good sites.
    http://www.lymeinfo.net/index.html

    • Brandy says:

      Hi Patricia,
      I would love to be able to contact you. I am a mother of 4 and believe that my family has been infected with Lyme as well. My youngest daughter already has a positive diagnosis, which she recieved 3 years ago, but the rest of us tested negative at that time. However, we are all showing signs and symptoms of this disease. My youngest daughter only recieved 3 weeks of amoxicillan when finally diagnosed. She had already had the lyme for 3 months before that. She is getting worse now and i need some help. I have recently taken her to a natropath that started her on nystatin and herbs, however she got worse immediately from this regime. Any help or advice you could offer me would be greatly appreciated as i feel so helpless.
      Thank you .
      Kind Regards,
      Brandy

  2. Patricia,
    Thank you so much for your comment!

  3. Jim,
    I agree with what Patricia said – you are indeed blessed to have had such a rapid diagnosis of Lyme. I had a late diagnosis of Lyme three years ago; and I write about and advocate for exercise while healing, although as Patricia also mentioned, sleep is more important at certain stages of the disease.

    Good luck with everything. If you’re interested in hearing the Lyme specialists I’ve interviewed, please send me a note and I’ll give you access.

  4. Kristin says:

    Keep it up. I have been battling Lyme Disease for 5 years 1 month. For the first 3 years I was mainly bedridden or at least spent most of my time resting and recouperating. Then in December 2006 I decided I needed to “get going”! I started walking – could barely make it one block when I started – then it was walking 10 minutes – then 20 – then 30. Then I decided to run a 10K so I started training on a treadmill so that I could grab the rails if I lost my balance. I too had trouble with balance and stumbled because of hip flexor and foot drop issues from lyme. Eventually I was up to 3 miles – then 6. And in 2004 I ran my first 10K in April – 51 minutes! Then in August I joined Team in Training running group with the Leukemia Society and had coaches help me when I got discouraged – and helped make sure I didn’t overdo it or injure myself. I recruited a physical therapist and physiatrist to help – and in December 2007 (one year after making my goal) I ran my first half marathon in under 2 hours. I won’t lie – it’s hard. And yes my lungs were killing me up until 3 months before my half marathon (that’s right 9 months of training with sore lungs and breathing problems) but now my lungs are fine. I still relapse and have days and even weeks when I cannot run or get out of bed. But, when I feel good – I lace up my running shoes – and hit the road. I’m going for the Disney Half in January – and plan to beat my time … and eventually BEAT LYME DISEASE – don’t give up. Get going!

  5. Pingback: Lyme Disease and a Return to Running - Update « The Running World According to Dean

  6. Simon says:

    Hi Guys,
    I started out with foot drop in left foot, then muscle twitches all over and lower back pain. This progressed over a year. My left leg is very weak now and walking is difficult with the foot drop and hip flexor. Had stomach bloating until I gave up dairy and wheat. I recently tested positive for one of the lyme disease tests and absolutely love to make contact with some lyme disease experts. I live in Ireland where it is harder to find an expert. Any help at all would be great guys. Thanks a million, Simon

    • franann says:

      Simon,
      I’ve Lyme disease for nearly 14 years.i went abroad in 2003 to be diagnosed.I never had a Pos. result here.I haven’t found a Lyme expert yet in Ireland.One can only hope,Best wishes. A

  7. Jim says:

    Simon

    I have done some research and drop foot is very common with Lyme disease. I also recall reading that the strain of Lyme in the UK is slightly different than the strain of Lyme in the US. I may be wrong there. The Lyme expert I saw in Boston is named Dr. Ted Butler. Here is his email address, perhaps he will have contacts for you in Ireland that may help you.
    ebutler@hallmarkhealth.org I will email him also to let him know I gave you his email address. Good luck and please keep us posted on how your progress. My own email is jim.hebert@puma.com..feel free to email me.

  8. Greg says:

    I was an ultra runner and all around physical adventure geek. 8 years ago at age 41 began having difficulty recovering from workouts, which soon after developed into full blown chronic fatigue and a multitude of other symptoms. I’ve seen multiple Drs but no diagnosis and worst of all no therapy. I just began investigating Lyme and bacteria infections. I was not aware the extent of this issue or the shere number of previous cases and so much information. Don’t know why previous Drs did not consider or know, and still not sure my current Dr will (follow up appoint next week). It’s been 8 long years for me and I am still running ultras in my head, dreaming of exercise, longing for the feeling trails under my feet. It is interesting to hear of other runners with the same problem. Let me know if you hear of anything new gregory_horner@yahoo.com

    Thanks,
    Greg

  9. Pingback: Lyme Disease – Recovery Road Revisited « The Running World According to Dean

  10. Mike says:

    It’s interesting to hear about fellow runners who have Lyme. Most of the stuff that I’ve read about recovering from Lyme disease always emphasizes that exercise is important but of the non-aerobic variety. They never fully explain why. The only explanation I’ve heard that makes any sense is the immune system can take a major hit when running vs. other exercises such as weightlifting. I can see the logic in this if your doing long distances but other than that, I think it’s better to continue running and exercising rather than just let the disease have its way with you. On top of that, the particular bacteria that causes Lyme disease hates oxygen, so I’m doing my best to run long enough to get myself into the aerobic state (usually 30 to 40 minutes). I do 3 to 4 miles (10 minute miles) every other day, always giving myself a day in between to recover. I also do some limited weight training on the days I’m not training. I’ve been doing antibiotics for about 9 months now and hating every minute of it.
    I know they are no good for you but in my opinion, their is no other way to get the advantage on this bacteria.
    Eventually I hope my immune system becomes strong enough to take over and do the job the antibiotics are doing now. It’s a fact – exercise makes the immune system stronger, so don’t give in to this bug. Keep running and exercising. No other way! You and me will get better!

    • Linda says:

      I was running 20 miles a week until I got diagnosed with lyme. With my early (undiagnosed) symptoms, exercise and physical therapy helped me! My early symptoms were knee and hip pain, IBS, but now with Panic Attacks and chest pain/palps I ran to the Lyme Doctor and feel much more debilitated. I still find exercise helps. I think it helps with the burning pain too. Our ancient hunter/gathering ancestors would walk 10-15 miles a day. I’ve been treated now for 6 months, and it is a roller coaster. Some weeks I can run, but most weeks I just want to walk. I ran a 10 K three months ago and got 2nd place in my age group (55)! I recently got a chin up bar and do lots of PT for plantar fascietis, neck exercises etc. They found hormones recently in the synovial fluid that help repair joints. I would like to know if people like me can run after a few years of antibiotic treatment of chronic lyme, or if I will just slowly become more disabled. Now I’m dealing with yeast overgrowth and have chest pain/cystitis pain maybe because I had to go off ABX while treating the gut. I was herxing on Tindemax for two weeks which prompted the yeast overgrowth. I just want the steady antibiotics.

      • Dean Hebert says:

        I have forwarded your post to my brother. He may have better insights. He has stayed in touch with many/most of the posters on this.

        What I can tell you… as I’m sure you can decipher from the posts… it is very individual. BUT, I can also say that MOST but not all seem to benefit from regular exercises… antibiotics or not.

    • Rose says:

      Mike,

      I am so glad to see your reply and many other runners that have Lymes. I was running 20 miles a week, doing half marathons and other races on a regular basis and felt so great. Suddenly I got the flu and was down and out for 2 weeks. After that I could not get my wind back and I ran a race like that and could not figure out what was wrong with me. At that point I started my journey of going to many doctors and after 8 months I finally got tested for Lymes. By that point I felt horrible and gave up running although I did PT and other gym related activities. I lost a whole circle of friends that I ran with and I miss it so much. I have been on and off meds now for the past 6 most and hope to improve and head towards running again. I also hope to find a local support group for like minded individuals like me that want to go back to sports while getting better.

      Thanks so much for your positive energy and sounds like you are doing great!

      • Dean Hebert says:

        I forwarded your note to my brother. He stays in touch with a lot of the folks.. kinda like a virtual community… Keep getting better!

  11. Dean Hebert says:

    Mike.. thanks for your comments. It appears that you are doing a similar balancing act as my brother. your contribution to this post helps everyone suffering from this. At least you know you aren’t alone. Keep making progress.

  12. Jamie McCollum says:

    I just got diagnosed with lyme after struggling for a year and a half. I came into college running as a freshman running better then I ever had but I would have random days where i would up to a minute slower then usual, it just didn’t make any sense i thought we thought I had low iron and it seemed like I was getting better for a little as indoor season came along i ran well for about a month then just terrible again and again. All through the course of this i went to 7 different doctors and a million different miss diagnosises. I was having terrible muscle aches in my legs,headaches,fatigue,swollen glads for no reason, and a hard time breathing. I just got tested a week ago and now have been on them for a week. My main question for some is will I be able to run at the level I was before and how slow should I take things my coach and I are really not sure how to approach this and I just want to get better.

    • Jamie McCollum says:

      reply to my own thread sorry that was so sloppily written i just saw this at work and needed to type fast before the boss came so any help would be greatly appriciated if you know anything about running and lyme and getting back.

  13. Dean Hebert says:

    Jamie,
    First there is no way to know for sure what your recovery will take or take out of you. It is obvious from the posts on this post and the others on my blog on this topic that it is highly variable.

    It is indeed an experiment of one. Do what you can when you can. Back off when you don’t feel well enough. Read all the posts here… there is a lot of information from athletes who have and currently are working their ways back into shape. I have also forwarded your email to my brother.

    We all wish there were better answers.

    Hang int here and PLEASE for everyone’s sake, come back and tell us how you are progressing. We all want to learn from each other.

  14. Dean Hebert says:

    A sobering movie on the topic.

  15. Pingback: More Lyme Follow-Up « The Running World According to Dean

  16. Colleen says:

    Thanks so much for this article. I have been dealing with lyme for the past 5 years, I just had my secound seroius bout, and I have decided to run my first marathon on may 2nd any additional advice would be great!

  17. Michele says:

    This web site has been very helpful, including the link to the movie, Under Our Skin. I have two questions to anyone who may know….one, can Lyme be transmitted from me, the carrier, to family members? Secondly, have any of you done long term IV antibiotics to get better? It seems so extreme, but I’m wondering if I should just do it…rather than try different things that don’t end up working out. Thanks for any help, Michele

  18. Cindy says:

    Hi Dean,

    I can relate to some of the posts on your website. I’ve been battling with Lyme for 1 1/2 years, and still need to take it easy with exercise, but am getting stronger everyday. I’m an all around Triathlete, used to be, not at the moment, Lyme just zapped my immune system along with all of the symtoms that flared up big time. I suffered vertigo, fatique, headaches, muscle weakness, heart palpations etc… I first thought I had the flu, as I was in bed for 5 days, and couldn’t move my head – (vertigo, that sucked). I finally went to my Doctor and was diagnosed with Lyme and Babesia. Dah, no wonder! In summer of 2008, I had the best season as far as racing in my career and was fit all around and loved every minute of it. Then got hit with Lyme, at first I was devastated and couldn’t do anything, no training for like 8 months. I just began to more myself in August and now can run 3 miles without any flare ups. Finally! I still can’t train like I used to – daily. At least I can exercise and keep pluggin away without any flare ups. I don’t know if I’ll ever be able to race like I used to. I just have to wait and see how my body reacts with weight training. When ever I tried weight training it zapped my body and Lyme flared up. I am encouraged that exercise strengthens your immune system. yeah!
    Will keep you posted.

  19. Dean Hebert says:

    Thank you for dropping by… you aren’t alone… which of course is no consolation. Keep on going… one day at a time.

  20. Ray B says:

    Hello Coach,

    Found your site while looking for information on Lyme Disease and running. – I’m a 49 year old competitive masters marathoner (18 marathons with recent (2009) PR of 2:41). I’ve recently been diagnosed with Lyme Disease and put on 30 days Doxycyclene. My primary area was originally wrist pain (sounded similar to your shoulder woes). – At any rate I’m trying to build up to 80 miles per week in an effort to break 2:40 next Fall (after I turn 50)…. Any insights you could provide on what to expect would be appreciated.

    Ray

    • Dean Hebert says:

      Ray,
      As you can see from most of the comments there is a lot of variability in recoveries, ability to return to working out, ability to handle stress or intense training. So, there is no single answer.

      What I will instead tell you is that your goal of 80 miles per week to get to your goal fo a sub-2:40 is misplaced. There is no such magic mileage to reach a given race time/distance. You will be far far better served by following a low mileage-high quality approach. Reduce your target to no more than 50 miles per week on average. Greatly increase you percentage of marathon goal paced miles and infuse your training with high quality track type workouts. That is the scientific secret to racing fast.

      Also, once we have run for years – our improvements will not be from more miles. It will come from faster miles. The basic infrastructure (lungs, blood vessels, muscles, tendons, etc.) has been established. It is the neuromuscular training -pace specific & high intensity – that actually offers older and more experienced runners the path to continued improvement.

      Examples: I have sub-2:50 marathoners who run 3-4 days a week and only 35-50 miles per week. I have successful ultramarathoners who average 40-60 miles per week (most of the miles come in the long weekend run). I have numerous Boston Qualifiers who train 35-50 miles per week. And, I’ve run a 2:36 marathon on an average of about 38 miles per week for the 10 weeks prior to the race.

      So, given the Lyme and the often unavoidable fact that you will need more rest and recovery from runs; a smarter approach to your training will serve you better.

  21. Pamela Ward says:

    I was diagnosed with Lyme Disease last year after many trips back and forth from doctor to doctor for 15 years. I have experienced many different symptoms such as; pain all over my body, memory loss at times, itching over my entire, skin lesions, dry skin, neck stiffness and pain, numbness in my arms and legs, low tolerance level, low sex drive, minimum hair loss and many more symptoms. I have good days and bad days. I am currently taking natural products such as Cats Claw (Samento), Vitamin C, sodium chloride, vitamin B, Omega 3’s, Chinese Bitters and Natural Cellular Defense. I am now able to get out of the bed and work a few days out of a week. I was a full time Licensed School Counselor in NC, but had to resign from my job last year due to this illness. I am still Licensed and now contract with the school system to provide groups part time. I am not able to go back full time right now. I still have a difficult time exercising and can only exercise for about 15 mins. Please share any types of exercises that would be helpful.

    • Dean Hebert says:

      Pamela,
      (I have forwarded your post to my brother. He has been staying in touch with everyone who drops by here.)

      The most important thing is that you are doing what you can tolerate. If you can go shorter and harder – do so. If you can’t then stay the course. Easy 15 minutes. See if you can add even a couple minutes a week… or one more workout per week.

      What we have found out, and as you have most likely read here… is that it is HIGHLY individual on how someone progresses. It is important to continue to read your body and take advantage of the good days… go further or faster on those days.

      Rest is critical to your recovery. Don’t short-change it.

      My brother found that doing some resistance training was good… even if you start with body-weight-only exercises.

      Finally, an important aspect is your mental approach to all this. Take the good days and workouts and celebrate them. Take the bad ones in stride (figuratively and literally). Persistence pays off. Keep a solid support system around. And i can tell you.. many of the runners who have commented on here are more than willing to lend emotional support to you. They are athletes.. they fully understand what you are going through… from a different perspective than medical community or family even.

      Stay in touch.

      • Annie Purinton says:

        I was also a runner and loved it! About 6 years ago, I started having trouble with my legs. They were so weak. Everytime I tried to exercise, I couldn’t because my legs were way to weak. Then, the fatigue came on even without the exercise. I would take my kids to school and come back home and get in bed. I went to every doctor there was to go to. Of course, all of my tests, x-rays, MRI’s, etc… came back that there was nothing wrong with me. Then, I became a “mental patient” because this was all in my head. I had a seizure about 3 years ago and that was it for my family. I couldn’t walk at all. They researched everything and I was finally taken to a lyme literate doctor. I tested positive for lyme and a couple of the co-infections. I have been on and off antibiotics (oral and IV) for these last 3 years. I have gotten better but still have a hard time with exercise and I miss it sooooo much! I started again this week to walk a mile. I am able to make it but my body is in so much pain from head to toe after it. I am also so fatigued. I am so happy while I am walking it though. Any advice for me on how I should approach exercise and not be so miserable afterwards?? Or should I just keep going and will the pain eventually get better?? Any advice would be so helpful.

        Thank you so much for all of your postings. I am so sorry you are all suffering from this terrible disease but it is so nice to know that I am not alone.

        Best wishes to you all!
        Annie

  22. Adam says:

    Jim,
    MY name is Adam and my story is nearly exactly the same as yours, up to the exact pacing at night, wondering, worrying. All the missed diagnosis’s and being passed from Dr. to Dr.; for me, the process took over 4 months of harassing Dr.s. This was a year ago. Before my symptoms were that sever I had suffered the shoulder pain for about 2-3 years, thinking it was low level arthritis.

    Jim, I haven’t done any physical activity in 3 months! The cold has made it nearly impossible to go outside or be active At ALL!! Shuffling, jerking, stumbling, these are all things I am familiar with now and it bothers me. Some days my feet are too numb to walk when I wake up.

    Bottom line is it comes down to circulation from what I’ve been told, Lyme causes stagnancy in the blood and allows the Lyme to blockade inside joints and connective tissue, sometimes forming cramps, or knots in the muscles that can be very painful.

    Now that it is spring I’m determined to get my life back. I am starting by cycling tonight for 30 mins low pace. Before the winter months I would swim twice a week. Longer recovery for sore muscles with Lyme. Any time you strain your muscles Lyme will attack that. I really hope getting more oxygen will help rid this Lyme. I have considered hot Yoga, stretching, meditating, and deep breathing exercises.

    Anything you can do to increase oxygen in the blood and circulation is Key – along with your meds.

    Lyme has been the longest endurance race of my life – I’m ready for the race to finish!

  23. Kent says:

    I am so happy I found this site. Just in February 2010 I got major sick (violent vomiting, headache, gagging, air hungry etc). I went to the ER and said it was just a virus. Over the next 2 months I developed neurological problems, full body myalgia, and joint inflammation and so on. I got the bull’s eye rash and 7 different doctors told me it was a bruise and that I may be developing MS or Lupus or some sort of vascular disease. I didn’t believe them. I kept running and running and running because it was the only thing I could do to keep my mind off whatever it was that was ailing me and I knew if I stopped my joints and muscles would seize. If I was not running, I was on my laptop researching. At the end of April, two and a half months after the violent oncomings, the rash disappeared, and 10 doctors were lost with my full body symptoms…..I came across a picture of a bull’s eye rash and a list of symptoms on CanLyme.com. Bam! I sent blood work down to IGENX labs in California, as our Canadian tests are unreliable and substandard ( I was negative for both Lyme and the Co-infections) and I am positive on 4 and 5 doubled starred bands on both the IGG and IGM western blot tests, AND on the IFA test. As well, positive for Babesia Microti 1:80 titers. I have been on Mepron and Azithromycin for 6 weeks and seeing sloooooow results with herxs through out. I lift weights and run every day as it makes me feel human again and am starting a Fire Fighter Academy this summer. I edged out 400 other applicants, and am 1 of 40 to be accepted into the program, so for all you out there, keep running and working your body. It has saved my life, future and dreams. Please don’t hesitate to ask me ANY questions regarding Lyme. I am pro and know all about nutrition (such as the spirochete loves and feeds on starches and sugars), treatments such as saunas and hot baths to help the skin and organs rid the dead bacteria, Vitamin B12 for the brain, Omega 3 pills that coat the healthy cells and allows them to fight the foreign invaded protozoan’s and on and on and on. I am a 28 year old male in Vancouver BC and am fighting the infectious disease doctors who would not treat me due to being scared the medical college would revoke their license. This is a major political problem and a huge divide between physicians through North American and people are becoming bed ridden and losing their lives because of it. Stay strong. Keep running.

    • debby says:

      A couple of years ago I told my naturpath that I felt like my blood was heavy. She diagnosed adrenal fatigue. A couple years later another naturopath daignosed imbalanced hormones and we tried that for 2 years. 8 weeks ago she said there’s got to be some infection underlying all this since I’m putting in a gallon of hormones and you’re only registering a pint. A blood test later she called with the Lyme diagnosis. She put me on Dox. but I heard about another naturopath in the area who specialized in lyme and she has put me on hydroxychloroquine. The way I describe it now is my body feels like it’s been filled with cement. I don’t even know if I remember what normal feels like. Do you know if infrared saunas, dry saunas, or hot tubs are more effective? And what about hot yoga?

      • Dean Hebert says:

        Debby,
        Your experience (as you see if you have read all the comments and follow up from this thread/posts) is not much different from others in getting diagnosed.

        There is nothing that I know of that supports the saunas you mention, hot tubs, hot yoga. However, everyone is unique and so try them and if they help YOU then keep with it. One issue to be careful for is prolonged times in heated environments may physiologically go against anything you intend. It MAY loosen up muscles BUT it will most likely leave you with feelings of fatigue. Not good.

    • Kathy Petersen says:

      Hi
      I am a Canadian also and have been sick for a good month with allergic reactions to MSG and preservatives in food. Then my BP went crazy high and I became so weak I could hardly get out of bed. 7 trips to the ER because of mild anaphylactic shock and spiking BP’s and then labelled as crasy! 10 days in hospital And i researched everrything i coUld think of as i was an RN with 20 years experience. Finally found Canlyme and IGenex lab. No one would listen but finally a GP who knew me and listened and prescribed antibiotics after I had burning body and shaking, GI, cardiac and neurological problems. I had asked repeatedly about Lyme – so much lack of education and useless Canadian blood tests.
      What is a reasonable treatment plan? Tell me about diet and any recovery info you have please! I was walking 2 miles every morning before this hit and now I can not even do the laundry but I am getting better.
      Thanks so much.

      • Dean Hebert says:

        Kathy,
        As you may have noted from reading all the responses here there is no single approach that seems to work for everyone. You’re “non-diagnosis” follows a similar pattern of others too.

        I’ll forward your post to my brother for some treatment details. I don’t have anything on diet related stuff. One message that has come through from all these accounts is that you have to take control of your health care… be assertive and be diligent.

        There is hope. Hang in there.

  24. Kaitlin says:

    I’m very encouraged by what I’ve been reading. I’m not sure how I came about finding this website, but I’m glad I did. Last spring ’09, I got very sick (headache, fatigue, nausea). They told me I had viral meningitis. I then soon developed anemia. I run cross country for UT martin and running became almost impossible. In the fall of ’09 I began getting iron treatments so that I could successfully finish my season, but I have not been well since spring ’09. Random headaches, anemia, swollen knees. I was tested for lymes and got a negative test result, but my family thought for sure I had lymes. I managed to find a Lymes doctor and he decided to put me on 2 Antibiotics to try and get me to Herx. Now, I feel awful. No energy, running feels just bad in a way I can’t explain like zero endurance, random muscle pains. Today I went back and he told me that if I was his daughter he would tell me to stop running for my upcoming season at UT Martin. He told me my immune system was down and that he was afraid I would get mid-season and that is could damage my heart. Is there evidence that Lymes could damage my heart if I push on running? I’m 20 years old and my parents want me to stop. I ran 32 miles last week that did not feel great, but I would like to push on. Do you think it is safe?!

  25. Aimee says:

    What a blessing to find this site. I have been fighting Lyme, Babesia and Bartonella for 15 months. The first six months I was able to do very little and even less exercise. Slowly started adding in some walking and strength training. Started running again a few months ago, prior to being sick I averaged about 25 miles a week. Since my runs had been going well and I was feeling better I signed myself up for the 1/2 marathon in Baltimore this October. I did great up until last week when I finished my 9 mile long run. That seems to have done me in. Recovery has been painfully slow and I have noticed a big increase in symptoms that had been gone. Think I overdid it. Hoping that this flare up will go away with rest. Wondering if my hopes of continuing my training and finishing the race are over. Not sure about whether to push through another long run or not. Kind of defeating when you think you are doing great. But in the end I suppose the fact that I am running at all is a huge improvement over this time last year. I think exercise is critical – I felt better once I got moving again. I just wonder how much exercise is wise until the bugs are completely under control.

    • Dean Hebert says:

      Aimee,
      As you see, you certainly are not alone. You need to read your body … that is #1. If that means that you skip that one more long run in order to maintain your overall health… and go in to the race slightly under-trained.. then that is the right trade-off. See if some shorter and slightly faster runs work… that is a good training approach to compensate for less miles.
      Good luck and stay in touch.

  26. Joseph says:

    Dean, I’m so glad I found this site/thread…but the experiences are so variable that I still don’t know much more than I did. 🙂

    I’m 59, a 30+ yr. runner & frequent marathoner (35). In 2008 I inexplicably had the year of my life, running 7:15 pace 5Ks (I hadn’t done much better than 7:40 in 15 yrs.) and several 3:40+ marathons vs. the 3:45-3:55 I’d been struggling to run. It was like I was on a super drug! I felt so good I even ran marathon #4 that year, at Dallas, in December just because I loved being so fit. (yeah, I know, mistake)

    Then in early 2009 I came down with an upper respiratory virus and couldn’t run 10 min. miles. The virus lasted 6 weeks but the slowdown lasted 3 months, until just before Boston. I recovered to where I’d been before 2008’s unusual season but never got it all back. Then in early 2010 the same slowdown happened: I could barely run 10 min. miles for long runs. I missed Boston because of being trapped in the UK by the volcanic ash but it was a blessing because by then my left heel was killing me.

    This past summer (2010) I solved the heel problem (taped it for apparent fat pad atrophy) but was still slow…and getting slower. Now even my track workouts were ridiculous: as my mile time climbed from near 7 min. to almost 9 min., I suddenly developed a painful rash with a necrotic center on my chest. The dermatologists (including a friend and marathoner) diagnosed strep/staph, possibly a spider bite, and treated me with antibiotics (Levaquin). It slowly receded but I was still slow and felt run down. I saw my personal doctor (also a friend and marathoner) right after that and he said everything looked OK and ascribed it to age or something mysterious in my body. When I began having leg pains at night, he sent me to the physiatrist who’d helped me get through a bad episode with my lower spine 5 years earlier that had similar symptoms (sudden slowdown, leg pain) and was due to a degenerative disk. PT helped then but didn’t do much this time. But his medical group tested me for Lyme just to be sure and…I lit up nearly every band on all the tests, indicating I’d had Lyme for some extended time.

    I had a couple of weeks of high-dose Doxycycline and then 2+ weeks of amoxicillin. My infectious diseases doctor, herself an older, high-mileage cyclist, gave me the OK to train for and run Philly since it was #15 in a streak for me. Running was painful; I could only run a few minutes without walking so my regimen for both training and the race was 4+1 (run+walk). I got through it in 5:30 but it was one of the most painful running experiences ever.

    The doctor says I should recover completely, though it may take a while: 6 months or even longer. So the question I’m trying to answer now is: am I being premature in expecting to improve basically 2 months after completing treatment? I still can’t run more than a few miles at 11:30 pace, though I can go a lot longer using run/walk at not much slower than that. Non runners may not be sympathetic to my plight since I can still exercise, but what I’m going through now is very frustrating. I can run normally for about 2 minutes and then it feels like I’ve hit the wall: just as others describe it, lungs burning, legs tired, zero endurance. I never had any of the other symptoms of Lyme disease–e.g., fever, joint pain, etc. No rash except for this past August a few months before I was diagnosed. The doctor couldn’t tell from the test results if an August infection seemed reasonable or if I’d had it since my first slowdown in early 2009. Given the unlikely presence of deer ticks in December in New Jersey, I would have had to have contracted it in the summer of 2008 when I was running masters PR times at nearly every distance. Is is reasonable to believe that the enhanced immune system of a high-mileage runner could have kept the infection at bay for months? Is it possible that I’ll never recover anything like the condition I had before?

    Apart from lack of endurance, I don’t have any symptoms of Lyme. I feel fine. Life is otherwise normal. I’m able to lift weights like I always could. Running is the worst. Elliptical is worse than before but not as much of a dropoff as running. And cycling actually isn’t bad: much better than running. Does this all point to a slow recovery from Lyme…or to a recurrance of my lower back problem with a possible pinched nerve (that is relieved when I crouch over the bike), even though I don’t have back or leg pain?

    I don’t even know which specialist to consult these days: the ID or the back guy! In the meantime, I’m registered for Boston 2011 thanks to a deferment due to the volcano and wondering if I should “train” for it and gut it out in slow fashion like I did at Philly, since it might be my last Boston ever (and it took me 9 years and 13 attempts to get there the first time in 2007). Or take it easy and rest.

    Decisions, decisions. Thanks for any advice you or other readers can offer. I realize there is no one true answer that fits all of us. At this point, I’d just like to know that my experience is within the range one should expect, or if my lack of any progress since finishing the antibiotics in early Nov. should be alarming.

    • Dean Hebert says:

      As you have read your questions almost beg more questions and the answers are as varied as the people afflicted. A couple things:
      It is unlikely that high mileage running had any preventative effects – most often immune systems are very compromised in heavy training athletes – not fortified.
      You should recover but the worst thing is that it cannot be determined if/when “full recovery” will occur. That is the worst thing mentally for someone so afflicted. There can be lingering effects such as neurological issues… whether that is in fact what has happened to your lower back/leg… I don’t know how anyone could determine this.
      Though I fully understand the importance of having qualified for Boston and wanting to run it… the question has to be, what is gained and what is lost in running it? At least if you do run it, you have modest expectations which of course will be required. I have forwarded your note to my brother Jim for his input.
      Stay the course. You’re coming back!

  27. Kelly says:

    Figured a lot of you could benefit from this guide by Dr. Burrascano! Look under supportive therapies as it describes NOT to do aerobic activity while in treatment and instead work on balance and core types of exercises.

    http://www.lymenet.org/BurrGuide200810.pdf

    • Dean Hebert says:

      Kelly,
      Thank you for your contribution. As you can see however, even with expert advice like Dr. Burrascano, MANY athletes return to aerobic training and do not need to limit themselves on activity… on on the other hand… others most certainly will have to do so.
      Thanks

  28. John says:

    I am glad to see that many still workout and run with lyme disease, I know there are many that are very sick and they might not be able to workout or run

    When i was first diagnosed with lyme disease i still ran 40 to 50 miles a week, I came off abx to early and relapsed last summer and the disease progressed to a more neuro form of the disease,

    I have never stopped working out since i was infected with lyme disease, I am back running again, but there are days when you need to recover, I aslo train with weights at least 5 days a week

    Diet is so important with lyme disease, Eating clean and cutting all sugar out of our diets is so important, Eating lots of protein and veggies and low glycemic fruits,

    Diet is the foundation to recover from lyme disease, You can take all the abx, supps and herbs you want but if you are eating sugar rich processed foods that have no health benefits , this can prolong your recovery, Sugar feeds the lyme bacteria

    I really believe that sweating is one of the best things you can do to fight lyme disease
    Working out or running helps circulate the blood, Helps detox the bacteria in our bodies out through our skin,, Helps us mentaly, many with lyme disease suffer with anxiety and depression, Working out helps counter anxiety and depression

    Over heating the body drives the bacteria out of hiding, I would always get some neuro symptoms after a intence workout or run

    There is balance and there are different stages of this very complex disease, Most of the people i have seen that made a full recovery did it through diet working out and herbs and supplements,

    This disease will cause you to fine tune every area of our lives that is out of order, so we can recover, There is no magic pill, It takes hard work, patience perserverance determination, discipline. and a positive attitude along with clan living to overcome the more chronic form of this disease

    God bless you all and may God give you the strength and grace to overcome this disease John

  29. Jim says:

    I’m a competitive runner, 25 years old. I got diagnosed with Lyme 4 days ago. I live in Connecticut, near Lyme, where the disease was first discovered, so my doctor immediately knew my flu-like symptoms were Lyme. Anyway, Monday I felt like I was going to die, and didn’t move for 16 hours, but the antibiotics kicked in and today (Thursday) I went running with my friends and pulled off 5 miles in 28 minutes! Not my best, I’m around 25 minutes, but the pain in my legs was extreme at times and my lungs have been affected.

    The key to combatting Lyme is to be aware of it and to get it early. The longer you have it, the more havoc it wreaks on multiple systems on your body.

    Lastly, I had sleep disturbances too, it’s one of the worst parts of Lyme. It’s partially due to the localized pain in certian body parts, but it’s also attributed to mild encephalitis (swelling of brain) that causes uncomfortable dreams/nightmares. I can speak to this first hand! It’s a terrible disease. If you’re active, outdoors, discover ticks on you and get flu-like symptoms during non-flu season, specifically ask your doctor about Lyme Disease!

    • Dean Hebert says:

      Thanks for dropping by and congrats on catching it early!

      • michelle says:

        I have a quick question for you…
        I had walking pnuemonia for 3 consecutive months in the fall of last year. I would recieve antibiotics…get a little better then it would come back and my doctor (who was wonderful, but has now moved on) was very aggressive with giving me stronger meds to combat it. After several relapses and s 3 months it went away. I also had it in the Spring as well. Is this also part of Lyme?

  30. Tim Cohn says:

    Thank you for this site! It has been very helpful to me to read yours and others’ accounts of Lyme disease for runners. As a dedicated marathoner and ultra-runner, it really surprised me how hard Lyme disease hits.
    My Lyme arrived in May — Martha’s Vineyard — and by June included, at times, a cough, fever, full-body rash and pretty-much-constant headaches. By early July I could not run at all. This was stunning; I had run three marathons and an ultra in the previous 6 months, and had been training 50-75 miles/week. Scary!
    A month and a half on Doxycycline has helped. I am running again, but the recovery is slow and I have given up a lot of speed and endurance. Also, I have lost range of motion everywhere.
    I am now doing yoga and running short distances, hoping to get back in shape over the next six months.
    What an awful disease!
    Again, I thank you for the website.

  31. michelle says:

    Its a relief to find this website and the documentary Under Our Skin. I was bitten in March 2010 and diagnosed in June with Lyme. I was given two weeks of medication and told to go on my way. I have continual problems with exhaustion, memory loss, migraines and joint pain….pretty much all the classic symptoms of Lyme disease. It scares me to think what will happen to me as these years go by and I keep getting the “its in your head” and “your just stressed and its hormonal” I am a runner to and planning to do my first full marathon in San Francisco. I am terrified that Lyme will impede my strength and my running. I am terrified I will have a DNF at the end of the race. But I am determined to do this. Im really scared but I am going to do this.

    • Dean Hebert says:

      Michelle,
      Thanks for coming by. Fear is understandable but if you have not fully recovered, then the general advice from everyone I know it to seek other professional help. There are specialists who get it! As for your running, the advice is good from everyone. Take it slow. Ride the wave of up days and down days and listen to your body. You have to train NOT to DNF. You need to focus on what you do control.. that is one workout at a time. On race day, you will not control how you feel. You will only control your effort on that day.

  32. mike says:

    did you not have exercise induced fatigue from the runs? my first symptom of lymes was that i. was exhaughsted for days after exercise.

    • Dean Hebert says:

      Mike,
      Yes, my brother had fatigue after runs but it went well beyond that and he was fatigued during the day as well.

      • Brandy says:

        Hi Dean,
        My 8 year old daughter has lyme. She has had it for 3 years. She was diagnosed 3 months after being bit by 5 ticks in Belize. The dr. gave her 3 weeks of amoxicillan and that was it. She also tested positive for a co-infection called anaplasmosis, but the dr. refused to treat her for it. Recently i have taken her to a natropath who has put her on nystatin and banderol and samento as well as a herbal blend called quintessence. She has gotten worse so i stopped all these things. I feel helpless and don’t know what to do. In fact i feel that it is possible that my whole family has been infected by Lyme. I used to run myself, it was how i de-stressed, i loved it. Now i only have effort enough to walk. You see we were traveling by motorhome for 6 months. It was myself, my husband and our four children and our two dogs. My daughter was bitten while we were in Belize and so were our two dogs. The dogs brought several ticks on board our motorhome as it turns out because we were pulling 30 ticks off of them a day. When we finally made our way home to B.C. we discovered how infested the motorhome actually was. Both our dogs died. I feel very scared and don’t know what to do. If you could forward my email on to your brother who has lyme i would appreciate it.
        Thank you for listening
        Kind Regards,
        Brandy

      • Pamela says:

        Try the Hansa Center in Wichita, Kansas. My son and I both were treated there and we are doing well. Great place.

  33. Mike says:

    It takes me 3-4 days to recover from any form of physical exercise, such as a light jog or a long walk.

    • michelle says:

      Ive had that too. There will be weeks of doing really well on my runs and then I will hit a slump and a simple 5 mile run will leave me exhausted for the whole day and at times the day after…then there are periods where I have the full on flu like syptoms and the idea of even getting up to get a glass of water is cause for a long decision making process of how much energy do I want to expend and is it worth it. Ive been tested and told I dont carry and the two weeks of meds cleared me. I am told I just have some “seasonal crud” that is going around..but I know what I have, and I feel like I am Chicken Little and nobody is listening. Thanks for the advice Dean, I have cut the full Marathon back to a Half and am going to do a Full Marathon in November, The Soldiers Marathon, at my homebase of Ft Benning Ga. I think this will work for me.

  34. Angie says:

    Hi. I’ve been looking for others who are/have been avid runners or the like. I’ve been a riligious runner since I was 15 (now 43), I’ve been battling Lyme since 2001. What finally got me to a doc was when i could no longer do my 3 miles w/o feeling as though I was starving for air. I would get tingles in my hands and top of my head. Couldn’t walk a flight of stairs w/o being totally breathless.

    As soon as I began treatment I bounced back with intermitent “air hunger”. But I HAVE to run. Even when I feel awful I get out. I know, I know. But mentally it keeps me sane. And my Lyme doc actually told me that I should have been bed-ridden with high levels of bacteria in me. Said she never saw anyone with such high levels still fucntioning. I digress.

    Cut to the present, just 2 months ago I was running stairs (340 steps one way up), was on a cocktail of meprone and 2 other antibx I can’t remeber. Literally within a few days I could run a mile, when I WALKED the stiars I felt as though my heart was beatin SO hard and too fast. And my head felt like it would pop form pressure. So I quit the stairs. Tried running on flat ground, but same thing, just not as bad, but I would feel (always after 1 mile) as though I was truly going to pass out. I would get lightheaded, but not always have trouble breathin, but always a tight band like headache/presuure across my entire head. Sometimes my heart kept beating fast even I stopped.

    I wore a heart monitor for a month, but all they could determine was I was getting into “tachycardia” at those times (174 beats) and told me when that happens to slow down. Huh. So I took to walking. SAME thing when I walk no matter how fast or slow. Soon as I hit the mile mark I get lightheaded feel like I’m going to drop. And it takes me never less than a full hour to recover, often more. Then I’m left with a weird headache.

    Has ANYONE had anyting similar? I’m going crazy. I do free weights and floor exercises, but I want to run! My Lyme doc has no answers for me.

    Also on aslightly different note…has anyone heard that living in a cold damp climate (like Seattle) being bad for Lyme people because of the high mold factor? I just wonder if that is part of my problem. The last 2 years have been exceptionlly raining and colder than usual summers.

    Thank,
    Angie

  35. Dawnja says:

    I have been having many of the same symptoms and finally my doctor has recognized that my positive Lyme blood test may be the cause. It has been almost two years- loss of job, MANY other diagnosis, and financial difficulty but I will see my first Lyme doctor this month. Hoping it works well. I can’t walk across a room most of the time without getting winded…UGH!

    • Dean Hebert says:

      Hang in there. There is hope. I have forwarded your post to my brother. He has been in touch with every one of the people who drop by and has been a great source of support!

  36. Julie says:

    Hi everyone! I am not a runner, but I had Lyme disease and a coinfection with Bartonella and antibodies for Rocky Mountain Spotted fever – and I cannot emphasize enough that long term antibiotic treatment – and this is waaay longer than 28 days – is absolute critical. My Lyme expert was Dr. Lesley Fein in New Jersey, she was amazing and an agressive physician. The blood tests don’t come up positive a lot of the time – in two years I only had a full blood test come out positive. I highly recommend going to her, she interchanges different antibiotics to really get at the bacteria in every way possible. I was on a combination of Doxycycline, Azythromycin, Clindamycin, and an anti-cyst medication (Borrelia likes to form cysts) that was really horrible. I had to do injections. And now it’s been about a year and a half since I stopped taking antibiotics and sometimes I feel good sometimes badly, like now, with the heat and sun I suddenly am having a flareup, while I was in Europe a few weeks ago in the sun, walking around cities like a normal person and nothing happened. It’s amazing how our bodies work. And I agree with what people have said about too much exercise, I know you guys want to go run but rest is key in the beginning stages, your immune system is way too sensitive. It takes years to recover fully (I believe we can recover fully!) Good luck to us all.

  37. Bob says:

    Just 2-years ago I was a world-class (age-group) Ironman athlete with a PR at Ironman Canada, 2010. Then, one day in May, 2011 I started to experience a great deal of symptoms. After 14 months of searching for a reason for a plethora of systemic symptoms, I was recently diagnosed with Lyme disease. While the symptoms have wreaked havoc on me mentally, emotionally, and physically, I am have kept “fighting” every day, keeping as active as I can. I am going into my 10th week on antibiotics and starting to feel better. However, I am far from my best and not sure how much I should be exercising. I have read the debates about oxygen being bactericidal, but at the risk of toxins and/or bacteria crossing the blood-brain barrier. What I’d like to understand — from athletes — what works and what to avoid.

    Thanks in advance.

    • Dean Hebert says:

      Bob,
      I’m forwarding your post to my brother. I’ll let him give you his take. There is absolutely NO consensus on this. It is Highly individual. Even the medical community cannot agree and advise on this. The good news is that most end up returning to their running… in time. Hang in there.

  38. Tara Wagner says:

    This is an amazing story. It gives me hope. I don’t know how long Ive had Lyme Disease, but I am a runner and started having problems with my hamstrings in (June 2012), and then pain in my lower back, and nerve pain in my arms. I am not bed-ridden. I am able to function, and work. I was going to physical therapy and massage therapy b/c I thought I had an injury. But when the pain went down my arms and hands I went to a doctor and right away I got tested, and it was positive. 4wks antibiotics of Doxy. This does not sound like enough to me right now, Ive been on them for 7 days and haven’t felt a change. (except nausea and loss of appetite) I haven’t been exercising/running because I wasn’t sure if it was ok. I am going to see an herbal specialist for sure, and have found out recently that a lot of positive thinking is necessary for full recovery. Not even sure if you’ll get this or if you have any insight to offer me. And am wondering how you are doing, since this was a year ago… Thank you!
    Tara Wagner
    Hope, Maine

  39. frank van scoy says:

    I’m a runner – 66 yrs old; just diagnosed with Lymes. The symptom that sent me to the Dr. was the difficulty breathing while running at a slow 10 min/mile pace. I thought I was having heart problems or exercise induced ashma. Biking and walking didn’t bother me. Just started my 3 wk course of Doxy today. Thank you for the info.

  40. Pingback: Sportul & borelioza Lyme « Numai un alt blog

  41. Joanne says:

    Hello,

    I have been diagnosed with Lyme disease on June 15, 2012 of this year after experiencing symptoms since last November 2011. I used to run everyday approx. 3 miles and was a gym rat lifting weights. I also ran Track and played softball in college. Since last March I have been having pain in the right hip area. Back in March the Orthopedic said I had a bone bruise and to stay off of it for 6 weeks which I was in a scooter and crutches. My follow up with the ortho revealed that all was well with my hip and to start walking on it. But I was still having pain in which I informed him that I had lyme disease. He said that was probably the reason for the pain and to come back and see him if the antibiotics didn’t work after 6 weeks. I have been on antibiotics since my diagnosis (oral doxy) and started 1 month of IV Rocephin on August 8th. I have been able to walk more but still have pain. I also incorporated a little bike riding 2 – 3 days a week (about 4 miles) and try to stretch the hip flexors which are very sore. Would love to get back to running but don’t think that is possible now. I also have pain in my large toe.
    I know exercise is important for healing, but am unsure of how much is too much. Is the pain I am experiencing a result of re-injuring myself, sore atrophied muscles or lyme and how do If I am doing more harm than good.

    I am going crazy not being active. I haven’t been to the gym in 6 months. I would really love to hear your input. Thank you.

    • Dean Hebert says:

      Joanne,
      First as you can see you aren’t alone. Second, I’m forwarding your post to my brother. He is a great support and wealth of knowledge. Third, you are doing the right thing by staying on the bike for now. Don’t run if it is painful. Differentiating between sore and pain will be critical. Pain is a sign NOT to do something. But, if there is only some soreness, you’re probably not doing more harm.
      Hang in there. You’ll hear from my brother when he returns from a business trip late next week if not sooner.

      • Joanne says:

        Hi Dean,

        Thank you very much for your response. I have not attempted to run (too much hip pain, even when walking at times), but I don’t want my muscles to get too weak. I will stick with the bike as you suggested. I look forward to hearing from your brother as well.

        Thanks again,
        Joanne

  42. Stephen says:

    >About 10 days ago I attempted to jog for the first time. The only way I can describe it …it was like my body had never run before, and didn’t even know what to do. My brain said run…my body didn’t understand the message.

    That’s such an excellent description. I have had the same problem! It was like the part of my brain that coordinates movement was asleep. I actually became afraid to exercise. I could not even break into a run to get across the street ahead of a car.

    Antibiotics seem to be helping and I can do about 2 minutes of running now before the pain in my chest and legs is too much for me to take. But at least my brain is communicating with my muscles again.

    Keep us posted on your progress.

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