My brother Jim is a longtime runner and guest contributor. He is addressing a little written about topic – and a personal experience. We welcome your comments and contributions to this topic. His first post addressed his diagnosis and the first couple months of recovery. Here he picks up where he left off and updates us on the past six months. Jim has been very touched by all the emails and comment posts here regarding this disease. Treatment and recovery of Lyme disease is lacking when it comes to athletes. It is with this perspective he writes. To the rest of us – please read all the fine comments and stories following his last post – and be thankful for our health.
Well, it’s been 6 months since I finished my treatment for Lyme disease and was given the all clean signal. Yippee right? Well …maybe. As always, there is the good news and the bad news.
I have kept a daily log/diary ever since being Okayed by the doctors. I wanted to document exactly how I progressed, when and if I had setbacks, and maybe even see what caused the setbacks. I recommend this to everyone battling with Lyme. It’s therapeutic to write down what is happening to you, both mentally and physically, and it can be very instructive on what to do and not to do as you head forward. I wrote down what I did for exercise, how I felt, and any pains or aches that occurred in my log. Here is a good example from the first week I started exercising again.
“3 mile walk, felt tired, shoulders still ache.”
It was good for me to write down the workout but it was important to specify what problems I was still having as well.
[DMH – Note that it doesn’t have to be elaborate or take lots of time to do this. However, if you also wanted to journal about how you are doing otherwise – i.e. emotional and psychological manifestations; it can be very therapeutic to do so in the course of recovery.]
As I began my recuperation and regeneration phase two things I noted were continued breathing issues, but the aches in my shoulders were slowly easing. “Slowly” is the operative word here. If I didn’t have patience before I was certainly learning it now.
I was riding a spin cycle, walking, adding in some jogging. Everything seemed to be progressing slowly but steadily. My sleep patterns were back to normal and I was not taking any medication at all. Looking back at the log book, the progression was indeed slow and steady.
I then began seeing a personal trainer to regain the strength I had lost. My muscles were still very weak in my arms and shoulders, and I needed to rebuild them. I started out with twice a week for a few weeks and progressed to three times a week: Tues., Thurs., Sat. What I did notice was recovery from workouts took much more time than I was used to. My body ached from workout to workout. Thankfully, my trainers know about my history, and depending on how I am feeling that day, they tailor the workout to me. Days I feel good, we go for it. Days I am struggling, we back off. This has kept me going forward even when things weren’t going well. In the three months I have been going to training, I have become considerably stronger. The weights I have been lifting have increased, and muscle tone has come back in my arms and shoulders. I still have one arm weaker than the other, but that is slowly coming around also. This is all the positive news, and there is much to be happy about here.
Now, for the negative news; running for me as been off and on. I will go 2-3 weeks of easy running and then breakdown for no apparent reason. Sore knee, sore leg, etc. – it’s just one thing after the other. I have spent more down time than running time. I find I get hurt doing next to nothing. I tore my right quad merely kneeling down to pick something up. Snap…out another three weeks. Thankfully I could still do some lifting, and the trainers worked around my injury. Of course my breathing is still a problem.
[DMH – In his earlier post he chronicled the body parts most afflicted with the Lyme. His diaphragm was one specific muscle affected.]
So, with these recent setbacks, I decided to pay my doctor another visit. First thing I asked him about was Chronic Lyme Disease or Post Lyme Syndrome. He paused and thought about it for a moment. He said that in spite of major medical associations stating that no such thing exists; there appears to be mounting evidence that they do exist. In fact, some doctors who have gone against these associations and spoke out about Lyme have suffered for there outspoken behavior. It’s a crazy thing where any associations will not be open to look at the issues and in fact punish or sanction those people who do.
I reviewed some of the things that have been happening with me: continued body and joint aches (although minor compared to what I had before), getting injured easily, and persistent breathing problems.
He suggested medications, which I politely declined. He even suggested anti-depressants… Doc, I am sick, not depressed.
My doctor is pretty good, but from what I can tell, prescribing anti-depressants is common for people who have gone through Lyme. They think the symptoms are mental. Anyone who has had Lyme knows they aren’t in your head, it’s very physical, and very real. So, I nixed the anti-depressants.
[DMH – A common misconception about psychosomatic pain is that it is imaginary. It is not. The pain is quite real. However, the genesis of the pain is our heads.]
He then gave me a breathing test by blowing into a respiratory gauge. Back in my running days (which seem like forever ago) I would have blown the top off the thing. This time I registered a whopping 80%. He told me the low end of acceptable is 85%. Hmmmm…not too good. So I am off to see a pulmonary expert this week to learn more about my breathing problem. It could still be be my diaphragm but we don’t know. There will be more to follow as I find out what this new doctor has to say. For the record my doctor count is now at 13.
So, I continue working out with my trainers, and hopefully will be able to jog a little sometime this week. At a minimum maybe I’ll be able to ride my spin cycle. I have to admit the lack of aerobic activity is making me a little crazy. OK, maybe I do need those anti-depressants. Hope every else out there that reads this gains some solace in the fact you are not alone. And please, start writing down how you feel every day. Keep a diary, journal, log book or just note it on a big calendar. But do it. Finally, as hard as it may be every day work on being positive and take one more step forward. There will be stumbles along the way, and setbacks, but continue forward no matter what.