Lyme Disease Support Group

Hi all!

I'm hoping someone can give me feedback and tell me whether I'm doing a good thing or making a huge mistake...

I've recently started one of those Couch to 5K programs. For three reasons really:

1) My daughter and I recently saw some people running a 5K and my daughter (5 yo) said, "Wow, mommy! You could NEVER do that!" Brat...lol

2) I really want to lose some weight (who doesn't, right? lol)

3) I've been sick for 9 1/2 years and have listened to people (mostly my entire family) tell me that if I started working out I wouldn't have Lyme Disease anymore. I'd like to go, "oh yeah, I run (however many) times a week and I still have Lyme Disease!" lol Idiots...

Now,to be perfectly honest, I never liked running unless it was to stop the ice cream truck from leaving.

But since I've been sick, one of the main reasons I've avoided excercise like this is that it always seems to cause massive flare ups of my nerve and joint pain along with (obviously) exacerbating the fatigue and weakness.

So...what is the right amount?

Is running stupid in general for me? Or can anyone tell me what the right amount of running is?

I did 25 minutes on the treadmill at timed walk/run intervals on Monday and Wednesday and thought I was doing ok. Today I got on the treadmill to do the same and literally had to stop half way through because my leg gave out on me (my left side, but especially that leg has been seriously affected by my illness...first by the Lyme and then by the stroke that came after...).

I'm feeling so mad at myself that I had to stop this morning. Which is another reason I worry that running may be a bad idea. I have a really hard time admitting that I can't do as much as a healthy person...and I'm afraid I'll keep going long after I should be stopping...

Anyway, any suggestions would be greatly appreciated!

Thanks!

I think people have different opinions on this.

I'd definitely say: Ask your doctor. Make sure that physically you can start an exercise program.

The flare ups could be herx reaction from die off/detox. But could also be a flare up. So I'd say go slowly and pace yourself - be more aware of how your body feels.

I have read that exercise should be limited to non-strenuous strengthening exercises once a week until significant healing is done. Not sure where you are in your treatment/healing.

But ask your doctor. I think it is important to have them a part of this decision so they can help monitor you.

Sheri,

In 2005, I was tired and overweight. I would fall asleep at 11:00 pm only to wake up at 1:00 am unable to fall back asleep for the rest of the night. Of course I had to get out of bed at 6:00 am, get the kids to school and go to work. Because I was so tired I binged on sugar and junk food to stay awake. This went on for a long time.

Anyway, I was fat and my feet hurt all the time. I thought my feet hurt because I was heavy. I began to exercise on the treadmill. It took a long time but I finally worked up to three miles on the treadmill, my feet burning the whole time.

I would run until I would jump off the treadmill and rip my shoes off and put them in cold water.

About the third month in, I noticed I was tripping on the treadmill with my left leg. It would scare me and I finally stopped running on the treadmill. This is when my foot drop began.

In 2007, I took up bike riding and again, my left side became weaker.

Not to bore you anymore, but exercise now scares me. Every time I did it, I would become worse.

At the time, I had no idea what was going on. I had never even heard of Lyme disease. Now I am too weak to exercise and if I have a good day, I run around doing household things or family stuff.

I do lift 2lb. had weights and do light yoga, again, when I am able.

I think exercise is a wonderful thing. I miss it very much, especially my bike.

I am not trying to scare you but just tell you what exercising did to me. Maybe it was just the timing of things and exercise had nothing to do with it but I believe I was overworking my body.

Since July of 2011, I have taken off about 20 lbs with just diet but not much more is coming off of me without moving.

I would say take it slooooow and try not to go whole-hog all at once.

Why don't you just walk to see how you do? We are all so different, I can NOT exercise very much it takes everything out of me just to do what I have to & even that doesn't all get done!

my poor garden last year looked like the jungle, I was terrified to even go in it because of snakes. I love my garden & to can my food but not last year!

We have 19 acres & have lived here for over 4 years & I have never seen all of it! I did walk most of it now a little here & there but I know when I push too hard like a small family vacation at the beach & walking the board walk (not even half the board walk) for a long weekend it takes me well over two weeks to recover.

Go slow, walk until you can see if you can do more... we do need to exercise but if you are using all of your energy to run on the tread mill what will your body use to fight this awful disease...

as my mom told me driving (I still hear her too in my head at times) "slow & steady start, slow & steady stop" pushing too hard will do more damage than good, just be careful!

You really have to feel it out. I've been sick for 1.5 years, and when I came down with it, I was a college soccer player in great shape. I was diagnosed in September and when I started seeing some progress, I started running. I'd gauge where I was, and scale it back when I needed to. But I was consistent. By the spring I was feeling great running and lifting 5x a week. I hit a wall with some meds during the summer and slowed up, but maintained running. Couldn't make it back for my senior year of soccer in August, and all went to hell mentally and I sort of gave up. I'm now much more sick and unable to run. I'm going to slowly pick it back up because the exercise definitely helped me immensely.

I've read that exercise is great because it helps your immune system, while heating up the body to temperatures that make the bugs die/come out of hiding to die. Dr. Burrascano says its impossible to beat the disease without vigorous excercise 3-5 times a week. I was also doing hot/bikram yoga and that seemed to help a lot too. I say go for it, start slow and be consistent. Take care of your joints though.

Dr. Burrascano updated his exercise regime. He now says NO strenuous exercise until significant healing is accomplished.

His new plan is to do non strenuous strengthening and stretching of all muscle groups with a progressive warm up and a long passive cool down.

He says to start with once every 5 days, resting totally the day after, and slowly work up to more, but never every day. Always a rest day in between.

He doesn't promote vigorous exercise anymore. These updates were made at the ILADS conference this past year.

Just be careful. Know your body. Take it slow. Build up bit by bit.

You are correct, I just read the updated protocol. I don't know, for me, I'll continue to exercise as my body feels up to it. I can't help but feel like the psychological factors at this point are as important as anything else, and when I work out I feel like I'm doing something proactive to help my case...as opposed to sitting idle and letting the medicine run its course. But like you said, listen to your body.

Post edited by: smay17, at: 02/19/2012 04:57 PM

Thanks for all the great feedback! I've basically been laid up in bed all weekend, so I guess I really did overdo it. I'm still hoping to be able to run at least once or twice this week but I'm not going to push myself too far until I can talk to my doctor. Unfortunately I don't have an LLMD (there are none in GA) but I'm hoping my pain doctor can at least give me some feedback.

I was diagnosed with Lyme 18 months ago after a gradual decline in my running, which I've done for 35 years.

The initial 30-day antibiotic treatment knocked me down pretty hard but I kept running very slowly (2-4 min./mile slower than usual) and did a painful marathon a few weeks after the treatment ended using run/walk. It took 1 1/2+ hrs. longer than my usual time (I've run 36 over the years).

Unlike some other runners, I didn't bounce back after the treatment. A second LLMD opined (correctly) that my Lyme was still very active and put me back on meds. I improved and decided to run another marathon a few months later, which was a mistake. I got REALLY slow and it took many months and, eventually, IV antibiotics before I improved.

It's been a year since that last marathon and I'm part way back but still much slower than I should be. I have no other symptoms/signs of Lyme but my running is still affected significantly.

We've tried a lot of different things looking for an answer (thyroid meds, asmatha inhalers, etc.) but haven't found an easy fix. I feel great otherwise but the Lyme is apparently still having some impact.

I believe it's a mistake for anyone to offer much advice about such a complicated disease that clearly manifests itself quite differently in different people.

The only thing I can say with some confidence is that runners should be guided by how they feel and learn to ignore the pace. Many runners bounce back quickly, or don't seem to be hurt much. Others are hobbled for long periods and can't run at all. I'm in the middle: I can run, but it's a struggle.

Your mileage will certainly vary. As for whether you should exercise: well, my doctor believes that my being a high-mileage runner kept my immune system strong and helped keep the Lyme in control for some extended period (I never had a rash or other symptoms)...until I ran three marathons in quick succession. I've never been the same since.

I also can go back now and look at the aftermath of the two marathons I ran after starting Lyme treatment and theorize that they hit my immune system pretty hard and caused relapses. But your experience may be different.

I believe that moderate exercise has helped me recover, but it's impossible to say for sure. One thing that's very clear from reading many of these Lyme blogs is that there's a vast amount of "information" that ranges from anecdotal to paranoid to speculative/fantastical. Sorting through it to glean the useful stuff that might apply to your unique situation is almost more trouble than it's worth.

Post edited by: run51, at: 04/11/2012 01:31 PM

I wonder about running too. My son ran cross-country this fall. He was awfully slow and his knees always hurt and got sick even more often than normally.

Now has to run in PE every other day in school. He always ends up home sick the following day. I don't know if it's related or not.

But it sure makes me suspicious.

His ND says he should run only if/because it brings him pleasure and he should not ever compete. And he should otherwise focus on streching.

LOL, a 15 year old boy doing yoga... yeah, right!