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