Me training for the Brooklyn 1/2 Marathon
I get a lot of email from people asking me, “How do you do it? How do you continue to exercise with Lyme?” The honest truth is, I haven’t a clue. It’s a mystery to me how I can still not only compete, but continue to excel (to some extent) while dealing with Lyme. It’s all very confusing. Even my LLMD is stumped. He thinks Bartonella is my main issue, but I can tell he’s reaching for an answer.
But whatever… my Bart issues are not the point of this post. The point is how do I make it all work? Well, I’ll tell you…
This will be the first in a series of posts I’ll make covering my approach to exercising with Lyme. Of course, all of the usual disclaimers come with these posts — I’m not a doctor, everyone’s illness is different and what works for me might kill you (literally). Take what I say with an enormous grain of salt. Use what works for you and trash the rest.
My approach centers on the following concepts:
1: Focus on today, but train for tomorrow
Every workout should be a quality effort, but what you do today shouldn’t prevent you from doing it again tomorrow. Learn your boundaries. I’ll explain how I approach this.
2: Listen to your body
Right now, your brain doesn’t like your body. Your body’s keeping your brain from doing the things it wants. It’s going to tell you to flog your body for being insubordinate and that you can do more than you really can. Don’t listen. Your brain’s a liar. Your body will tell you the truth. I’ll explain how I’ve learned to shut out my brain and only listen to my body.
3: Support the effort
You body’s fighting a real battle inside. You need to support it. There are a couple of supplements that I think are key to exercise performance while dealing with Lyme.
4: Eat smart
If you’ve been dealing with Lyme for even a little while you’ve probably already cleaned up your diet to some extent. This is incredibly important, but there are a few additional things to pay attention to when working exercise into the mix. I’ll tell you what I do.
I’ll break down each of the above into separate posts for easier reading. They’ll be posted in the coming weeks so stay tuned. Now, however, I thought I’d sort of back up a bit and do quick recap of what’s happened to me over the last year and a half and explain how I’ve worked exercise back into my life.
A quick recap for those of you who just walked in
Before I was struck with Lyme back in September 2007 I was in the best shape of my life. I was a serious contender for placing in my age group in the races I was entering, I could run a mile faster than I could in high school and was running or biking more miles in a month than most people do in a year. However, after the disease struck, I could barely sit up for very long let alone swim, bike or run anywhere. I felt like I weighed 4,000 lbs. and hadn’t slept since I was born. The fatigue was crushing.
This frightening and debilitating acute phase lasted about eight days until a well meaning doctor put me on 10 days of penicillin for what he suspected was strep throat. At the time, a horrific sore throat was my greatest complaint. It felt like I had chugged a bottle of Drano to wash down the nails I had just swallowed. It was by far the worst sore throat of my life.
I improved greatly on the penicillin and we all assumed I was on the rebound, but for weeks and months I lingered in this limbo land of half health. On a good day I felt 75% of what I called baseline functioning. Meaning, take away all the exercise I was doing I was still only about 3/4ths of the way there. I was no longer in bed, but I wasn’t really gettin’ it done.
I felt like crap, I couldn’t sleep and was really starting to feel my life, as I had known it, slipping away. Previously to all this, when I felt bad or stressed, I’d go out for a run, meditate on my problems and come home feeling clear and focused. At this point, however, going for a run felt like a titanic chore and it left me feeling worse. I napped a lot.
After six infuriating months of doing the “are you my doctor?” polka I finally figured out that Lyme was my issue and got into treatment.
Where am I today?
Part of the treatment process, at least for me, is staying active. In fact, multiple doctors told me that I should stay as active as possible. I’m not exactly sure they knew what they were suggesting because, luckily for me, a lot is still possible — far more than all but a few Lymies I’ve met. Still, I’ve tried to take the spirit of what they were getting at and combine it with my training knowledge to develop a framework to work within.
So far this has worked well for me. I’ve managed to avoid suffering a relapse of my initial acute phase symptoms, keep from getting injured and find a balance of effort that keeps me from feeling too wiped out to do what I need to do every day.
I’m by no means cured or even significantly recovered from my post acute phase symptoms. My main complaints are moderate, but brutally consistent, neurological issues. Mostly brain fog, trouble concentrating, confusion and some tingling in my extremities. I also suffer from regular fatigue though it’s not exhausting. More like I was up all night… which some times I am. My sleep is often hit or miss. There are other symptoms too, but if these were to go away I’d feel “cured.”
So how do I do it?
It’s not easy and it’s often frightening. I really fear that out there for me is the workout that kicks me all the way to the back to square one. I also sometimes fear that I’ll never really beat this thing until I stop exerting myself and just take it easy. However, in my mind, not working out is as bad, of not worse, than than feeling crappy all the time. It’s because of this that I keep at it.
Thanks for reading. Stay tuned for more.
Great blog today, really enjoyed getting your insights on how you keep training and performing well , while still sick. I truly believe the stuff you are documenting will help others , if not not, then in the future, Thanks for writing this.
Jim,
Thanks, man. There really is a void when it comes to this type of info. I hope what I’m blogging helps somebody.
Thank you for this post! I do look forward to reading more. I’m really struggling to do anything but go to work, and do the bare minimum of errand running and chores. Other than that, I’m in bed. I went swimming last week and I saw double on the pool floor. Every day feels like a little something extra added on. I’m really curious to hear more of “how you do it”…and what has worked for you. You amaze me! But then again, Lyme also is a different flavor for each person it encounters, so maybe you were blessed with still being able to exercise and not feel so bed-ridden all the time.
Thanks Sarah. Have you tried d-Ribose. It’s no miracle, but it’s become one of my main supplements. It really helps me with my energy levels. And it’s relatively cheap.
I’m going to write about it soon.
Feel well!
/CT
What a great concept….I look forward to your posts and hope to be able to incorporate them in my recovery process, especially after my PiCC comes out in a month (Aug. 5 at 1:30, not that I’m counting the days or anything!).
BTW, my healthy 18 year son enjoys reading your running posts…his mile PR is 4:49. He says props for beating your high school record.
Beth,
Thanks and good luck with the PICC removal. Has the Rocephin helped? I’m thinking about it again… this fall after marathon season.
Props back to your son for a nice PR. I was training to break 5:00 when all this happened. I’m wondering if I’ll be too old by the time I’m feeling better to get that fast.
Ha, the Rocephin is but a distant memory! It helped with some joint pain, but since the Rocephin, I’ve had Merropenon, Clindamycin, Zithromax, Levaquin, and now Tygacil, with a Merropenon chaser planned for the final kick (all IV). Some were better for brain fog, fatigue, others for muscle twitching….but I don’t want to get all Lymie on your running post.
Feel free to e-mail me if you have questions…
No worries, if you are running this well now, when you get better, you’ll fly!
Seeing your charts has inspired me to track my own recovery process. I have often thought about getting back on the mountain bike, but most of the information I have read, says to avoid aerobic type exercises during recovery. However, this is the only type of exercise I have ever known. I am not really a gym type person, although, I have begun to implement some light weight lifting in an attempt to build back some of my core muscle recently lost. I like your thoughts on listening to your body and not your brain. I am curious to hear your thoughts on all other topics discussed, and I am also anxious to start some charts of my own.
Thanks for the inspiration.
What are your thoughts on diet?
@Cleveland… thanks. I think charting is a great way to track your progress. It’s also a great way to feel like you’re taking control of your health.
The answer to the aerobic exercise question depends on how sick you are. From what I’ve read, if you’re very sick (in bed or housebound) it’s detrimental because you body needs all the energy it can get to repair itself and fight off the infection. However, if you’re highly functioning and you can do it without feeling wiped out after or the next day then it’s beneficial. The infusion of oxygen helps kill off the bugs. I also feel that it helps push the antibiotics in to places that it might not reach otherwise… but that’s just my opinion, not medical fact.
I’m going to touch on your diet question in an upcoming post.
Hang in there and feel well!
Chronic Triathlete-
Thanks for the response. I did some research into the matter and you are correct, it does depend on your current state of recovery. My only fear is slipping back into a non-functional state. While being miss-diagnosed for about two years, I too was forced to give myself a final diagnose. I ended up asking my local clinic Doc. to sign the consent and have some blood work sent out to IGeneX for testing ( my second Lyme test). The screening was positive and Western BLOT’s did so signs of Lyme. With the help of my doctor, I have been treating myself with supplements and various antibiotics for about 5 months now. As of late, I have been feeling about 75 percent on good days and about 55 percent on bad days. I believe I have reached a plateau in my recovery and feel exercise could help me to heal even further. I live in Florida and there is a big shortage of LLMD’s in my area. However, my general practice Doctor has suggested that exercise will help the antibiotics work even better.
I am currently working on weekends as a server and taking care of my two kids during the day. I feel really drained on Mondays, but not to the point where I can’t function. I have tried to exercise in the past but would often suffer some increased headaches, and joint discomfort. However, lately I have been doing some daily Yoga, lifting some light weights, and feel better because of it. I am wondering if it is time to add cardio without jeopardizing my immune system.
My question is, “at what point in your recovery did you feel you were ready to begin your training again?”
Thanks – Cleveland
@Cleveland… I’m 99% done with a follow up post about this subject. It should be up later today or tomorrow. It speaks directly to some of your concerns.
To answer your question… I was wiped out seriously for about 3 weeks. Then, after starting abx for what my doc felt was strep I started to feel better. Got to 75%, but stopped there after the 10 days of drugs ran out. It took me 6 months to end up with a Lyme diagnosis and start on treatment. Like you, I basically diagnosed myself. I ordered a kit from Igenex, took it to my doc and had her send it in.
After reaching the 75% point I held off for another 2 months. After that I started playing with some different exercises. I tried tai chi and some yoga-style stretching. After about a month of that I moved to cardio. It was hard and I really had to adapt thing, but it’s helped me A LOT!
I really think the only way to know is to try it out and see. Stay tuned for the coming post for tips.
Hi,
I certainly relate to your story! I’ve been battling with Lyme over a year now and still can’t train like I used to. I’m a triathlete and ranked in top 10% in my age group. I had the best race season in year 2008, just before I got hit very hard with Lyme and Babesiosis. I was out of commission and couldn’t exercise for 8 months, I finally came around with antibiotics and begant training at low intensity and then I get hit with a relapse. I have a hard time training daily and it’s killing me. I miss this sport sooo much that I want to get back into the swing of it sooo bad and be able to race again.
I appreciate any advice or suggestions you may have and how I can be relieved and free of Lyme 100%.
Glad you’re back in the swing of things and trianing!
Cindy
Cindy… Sorry to hear you’re struggling. I wish I had some magic for you, but I don’t. The only thing that’s going to help you is accurate treatment… and only you can discover what that is. You say that you relapsed after starting “low-intensity” training. You’re a top 10%er. You might need to reevaluate what “low intensity” really means. I know I did when I started back at it. I began running with new Moms trying to get back into shape and people who had recently quit smoking… and it was taxing enough. If you want to want to talk further, please email me through the Contact section at the top of my site. I’m happy to help.