Lyme and Exercise

I've personally not had to deal with it but have a friend who was misdiagnosed for a year before they finally got it right. It did have a huge impact on his fitness/running.

Good luck with the treatment.

I have chronic lyme and was having all kinds of joint pain and myoclonic jerking. There is foot neuropathy too. Recently I became very wobbly and speech became slurred. I was extremely tired and could fall asleep whie supposedly talking to someone while I was standing up leaning against a wall. Eventually, my legs became very wobbly and I had to resort to a cane and eventually to crutches. The brain fog was terrible. I had a deep brain seizure with no outward signs that looked like a seizure except my boys were unable to wake me up. An ambulance was called. They thought I was having a stroke. Strangely, I could here much of what they were saying, but when I tried to talk, it was garbled and I fell asleep again. The next day, the hospital released me with known cause. I have no idea having an iv, how I got dressed, that my son stayed the night with me, who dressed me, or how I got home. And they said nothing was wrong with me. Ha! After that episode and with my excessive sleeping, I was told not to drive. I had good friends who came to the rescue, but it was very hard not being able to drive from June to January.

Shortly when I got home, I was walking to the front door of my house. All of a sudden there was a sudden and tremendous pain in the side of my right knee. I have never had such pain before and wailed. I live in a house that is below street level and wondered who would find me or help me. I did make it to the garage and surprisingly remembered the code to open the durn thing. I also noted a dear friend who was working on my shed behind my house. He came running, helped to the couch and put blocks of ice on my leg tied down with bungee cords!. He found my Percoset and I called the Dr and finally got through. They thought it was the lyme going after a weak spot in my body. (I had had 3 surgeries on that leg in prior years (major basketball and volleyball player!). Thankfully, I had an appt with Dr Jemsek 3 days later. He referred mye to an orthopedist. The ortho was sceptical about the lyme piece, did a frontal xray and thought it was arthritic changes. he did have enough sense to order an MRI which showed a major blown out knee. When I went back in, he said he had never seen anything so bad, that it wasn't typical to happen this way (most people have gradual onset of arthritis that gets worse) and that a complete knee replacement was needed immediately. I was taken off all meds except that for the myoclonus.

After the surgery and PT, (2 months later), I was a changed person. My affect became brighter, there was no staggering, my speech was not slurred, I was full of energy, and pain in the joints was gone. I had an appt with Dr J's office and told them I did not want to go back to the full med regime. If the ultimate goal, is to wean us down from meds, then lets start there and see what reactions there are. She agreed and I am happy that there are minimal changes. The neurapathy is still there. There is occasional joint pain, and the myoclonus has increased but is still intermittent. I am occasionally tired, but listen to my body when that happens. I am enjoying working in my garden, bike riding for miles, and getting many things done around my house. I pray this is as far as lyme takes me. I do not want to go back to where I was. ( I should also say, I'm on many supplements, nothing that would hurt you though and actually do the body some good) I am seeing a nutritionist and have altered my eating to include more protein, more gluten free foods, and less carbohydrates. It's working too. I've lost 30 pounds!

So friends, I know this a long story, but I'm here to offer you hope. Lyme IS a vicious disease that needs to be better diagnosed and treated. There are options, and I don't think that one way works for all. We can only hope for the best and give each other encouragement. I pray that all of you experience movement towards the positive end of this disease. Don't give up hope. It's a hard path, but keep your eyes on the positive and don't be discouraged. There are many out here who are able to offer support.


Annette