posted
I have wanted to share this for a long time but have held off because I didn't know how it would be received. I decided to post it in hopes that it could benefit some here. I am 26 years old and I have disappeared for a time because coming here was causing me some extra worries and I was obsessing. But I want you all to take what I say to heart, especially if you are feeling like you have nothing to lose.
The biggest key to getting past this disease is working out. Physical activity. Many here will counter me with the whole Dr. Burascano says not to do any cardiovascular activity. I want to tell you from my personal experience and from an opinion that I've gotten from my own LLMD who is reknowned and respected on the same level as dr. B that concept is hogwash.
Back in may.... I never got off my couch. Day after day I would sit in my house, and I saw minimal to zero improvement. I came here, I read people saying "no physical activity while you are sick with lyme". And I continued to do nothing. I weighed like 235 pounds, after weighing 185 in college. Now I didn't mind not working out because I was SO DIZZY that a simple walk around my neighborhood was too much for me. In May I read a book about a baseball player who I idolized as a child who got colon cancer and had to undergo chemotherapy. In the book he worked out even with chemo going on and he returned to his team to play. This inspired me. He was puking, and near death and he still pushed himself to make his body stronger and condition it to fight his illness. This inspired me and I said to myself back then "I don't care how simple it starts out, i don't care how bad I feel.... if Darryl Strawberry can work out with cancer and chemotherapy I can do it with lyme disease."
And I started out back then. Slowly. It started out pathetically. One lap around my neighborhood became two laps. And soon four laps. And soon eight laps. Then when I got a little bolder I'd run the stair stepper for 20 minutes and I'd walk on the treadmill for 15 minutes. Then I mixed in light weights. Then I started to run the stairs hard for 30 minutes. Then I started to sometimes work out twice a day if I felt good enough to do it.
The more I worked out the better I honestly felt. A lot of stuff, dizziness, brain fog, all this stuff decreased. I started to lose weight. My sleep apnea disappeared. By summer, I was running a mile or two a day, running the stairs for 30 minutes and lifting almost every day.
Now that I've returned to work full time, I still even when exhausted go and work out because I know it was key in getting me to this point.
now, I asked my new LLMD "is it okay to work out and do cardio stuff? Dr. B says that its not right etc. etc. etc."
he said "absolutely. Do what you want to do, you need to work out. That is one thing Dr. B is completely wrong about and what he says shouldn't be taken as the bible of lyme even if some of his material is very knowledgeable".
Believe what you want. This is just one young man's experience. But if you are like I was with nothing to lose in your fight against this crap, it might be worth it to try it.... I lost 30 pounds. When you look a little better, you'll also feel a little better.
I hope this inspires someone out there. I hope it works for you. God bless anyone who reads this post on your own path back to wellness. I'm not there yet all the way, but I'm on the way. I think this concept can help someone.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i'm happy for you.
its a complicated subject. i'm struggling with it now.
one thing i know from my 25 yrs with this disease is-there will be as many different right ways to do it as there are lymies.
and -if someone comes on here spouting what is THE right way...you know they haven't been around long enough to know what they are talking about.
it would be like those llmds that say they can "cure" you. when i hear that , i run.
so-i say good for you and good luck for the future. there's another similar post ... and it has become controversial...
and some of dr B's new stuff really pushes exercise. i think his big thing is to rest every other day cuz a lyme body needs more recovery time.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
You know, when I worked out, I also noticed a big difference. Even if I felt bad and made myself do 20 minute exercises at least three times a week (consisting of resistance training, squats, lunges, weight lifting, etc.), I'd feel better. I was doing so well there for a while too (for a couple of months), I was seriously starting to believe I was putting the lyme into remission. How naive of me.
But then after taking a week off to go to the beach, I went back down hill after a couple of weeks and then the heart palpitations started up very badly (worse than they've been in a very long time) and I just felt generally AWFUL. And now I'm afraid to get back into working out because of the heart issues - even though I've had many heart testing done and supposedly my heart is normal and fine. I don't want to do anything to cause them to happen. So even though I'd like to start working out again, I'm seriously afraid because I don't want to do anything to make my heart act up.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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quote:Originally posted by disturbedme: You know, when I worked out, I also noticed a big difference. Even if I felt bad and made myself do 20 minute exercises at least three times a week (consisting of resistance training, squats, lunges, weight lifting, etc.), I'd feel better. I was doing so well there for a while too (for a couple of months), I was seriously starting to believe I was putting the lyme into remission. How naive of me.
But then after taking a week off to go to the beach, I went back down hill after a couple of weeks and then the heart palpitations started up very badly (worse than they've been in a very long time) and I just felt generally AWFUL. And now I'm afraid to get back into working out because of the heart issues - even though I've had many heart testing done and supposedly my heart is normal and fine. I don't want to do anything to cause them to happen. So even though I'd like to start working out again, I'm seriously afraid because I don't want to do anything to make my heart act up.
I understand. The heart stuff made me fear working out worse then anything. If I remember right you and my own heart issues were very similar. I had also been cleared by a cardiologist that my heart was healthy. And I have some moments where the heart hiccups or skips and it is indeed scary. I have it to this day. But I've worked out very hard to the point I was drenched with sweat and had those palps while I was working out... and I'm still standing. So if I get a moment of fear from it I just tell myself that doctors have cleared me to work out and it hasn't harmed me yet! And I can say its positively affected me more then it has hurt me.
As lpkayak said above every lymie is different, i buy that. Our bodies are not all the same. What works for person A might not for person B but I certainly think this can benefit many out there who are feeling hopeless. It also psychologically will help you. As you are working it, slowly tell your mind "I'm on the road back. I'm on the right track." Whisper it to yourself. Train your mind. Sounds cliche, but it is just crazy enough to work over time if you are strict and buy into it.
I also want to add that I began eating VERY strict for myself. Couldn't cut out the caffeine but other then that I don't do much sweets or fast food.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I take it Babesia is not an issue you had Clint? I believe with this co-infection, this approach is IMPOSSIBLE or near so.
Good for you that you made such progress and worked hard to get there! I hope it continues.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Though I agree 100% that everyone needs to work out, I also believe it's very personal at what level.
When I was very sick and needed help even to walk because I was so off balance, if I did any cardio, it made me very ill. During that time I did strength training and stretching only and only what I could handle that day. Some days it was very little and very light weights, some days it was what I would consider a full workout minus cardio.
Then, as I became more functional though still ill, there were days I could do cardio and days I could not. I listened to my body.
Exercise raises the core temperature, stimulates lymph flow, stimulates blood flow, all of which help. Everyone needs this. For some, exercise might be stretching in bed. It all depends on how disabled someone is. At my worst, I would lie on the floor and try beginner yoga along with a DVD.
Dr. B says exercise is important, just to be careful with cardio if the stamina doesn't allow.
I'm glad to hear you're doing so much better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Honestly I think it depends on the person. I think for some this works but for others it would be dangerous.
I think for me it would be dangerous. When I do too much I get chest pains. I also get very sick and have literally felt like I was going to die. I can't imagine what working out would do to me. I really think it would be dangerous for me to push myself to do that.
What I experience is post exertional malaise (PEM) and it seems others here have the same issue.
I have done some reading about PEM and it is actually a protective mechanism. Here is a good analogy about PEM that I found.
``If the energy demands on your body are more than it can meet, your body 'blows a fuse.' The ensuing fatigue forces the person to use less energy, protecting them from harm."
So the reaction that some of us have to exercise is actually a signal for us to stop before we harm ourselves or worse.
In my opinion I think it really depends on the person. I think we are all different and react to exercise differently. That is why I always stress that people listen to their own body and only do what they can handle.
Yes exercise can be good but it must be done properly and within your individual limits. For me that is 15 minutes of stretching every other day but for others it might be much more or much less.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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bettyg
Unregistered
posted
hi clint
i look forward to reading your story above, but please break up those LONG paragraphs into many short ones and double space between each paragraph as you did the others.
towards the bottom, i can read those, but not the beginning at all.
i'm sure other severely neuro folks like me had to scroll on by. thx for your consideration clint hugs
just click on pencil to open up text.
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I think exercise is what kept my Lyme in remission for a long time. It's only when I stopped (and had a baby) that it came out with a vengeance.
Posts: 3528 | From US | Registered: Apr 2007
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
[QUOTE]Originally posted by seekhelp: [QB] I take it Babesia is not an issue you had Clint? I believe with this co-infection, this approach is IMPOSSIBLE or near so.
I have Babesia and I am able to exercise with good results so I don't think having Babesia is relevant as to whether someone can exercise or not
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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WildCondor
Unregistered
posted
The topic of exercise with Lyme needs some clarification. The facts are becoming skewed and not interpreted right.
In the guidelines Dr. B states that physical exercise is 100% essential to getting better. Without exercise you will not recover. The point you are missing is that if you are severely ill, you should not attempt cardiovascular exercise until you recover enough to start it again. In the meanwhile, he suggests weight lifting and strength training, and other non-aerobic exercise until stamina improves. Once stamina does improve, then you can exercise as much as you can tolerate and it is the key to a full recovery.Physical therapy is helpful in many cases.
I was under Dr. B's care for years and he was always a huge proponent of exercise, happy living, healthy eating, and encouraged each patient to live their lives as much and to the fullest extent possible.
Exercise protocols vary depending on the level of severity of the patients illness. If you are able to run for miles that's great, but some patients are not at that point yet and pushing themselves can cause serious relapses.
He used to tell me that if I tested myself by say, hiking 3 miles, and I was wiped out the next day, or experienced a relapse of Lyme symptoms then I did too much. Aerobic exercise, when done prematurely, can relapse your Lyme, sludge your T cells and hurt your immune system, so it is counter productive at that point in treatment (which may be months to years).
If I walked a 1/2 mile slowly and felt great the next day, then it was just the right amount. If you go all out and find yourself exhausted the next day, then you failed, and you have to do much less next time. You have to go gradually folks, and listen to your body.
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Babesia is very relevant to exercising even more so than lyme. You may be lucky and not have a bad infection.
Babs keeps one in a chronically anemic-like state. With many RBCs inactivated by babs, one has decreased O2 carrying capacity for muscle energy. It also makes recovery from exercise take a lot longer.
I went from running 45-60 miles a week to about 12. I had no idea why until I was dx with babs. My weight lifting went from 3 times a week to once every 5 days because of lack of recovery ability.
I was still able to exercise but at a greatly diminished level.
James
Posts: 872 | From New York City | Registered: Jun 2008
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I think what you did was GREAT! It takes a lot of internal strength to get out and start the long road back one step at a time. GOOD FOR YOU! It's nice to hear stories like that.
I think that one of the problems with any chronic illness is atrophy of muscles and diminishing aerobic capacity that comes from inactivity. That would compound whatever fatigue issues come with illness by making everything more difficult to do. It will make it all worse.
I experienced this after a knee operation. My right quad muscle atrophied to half the size of my left in only 3 weeks of inactivity. I lost 15lbs of muscle. I was shocked at how fast this happened. It took me months of dedicated work to get it back.
Imagine if someone is debilitated and cannot exercise for several months. You would lose a lot and it's a long way back.
So, yes, maintaining a level of fitness is VERY important. And I believe my athletic lifestyle kept my infections from getting worse.
This is VERY easy to say for those of us who CAN exercise. There are many people who have such serious pain and fatigue that it's essentially impossible.
My brother was so debilitated that he could barely walk, never mind *think* about running or weight lifting.
Also, there are a lot of people who are not really athletically minded to start. It's not really a natural thing for them to exercise. They also start with a lower level of fitness which falls even lower with illness.
If one can exercise, one should.
James
Posts: 872 | From New York City | Registered: Jun 2008
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WildCondor
Unregistered
posted
The advice about exercise applies to all infections. If you can do it, do it, if it leaves you wiped out afterward, it is counter-productive. Without exercise I would have not gotten better either. Just listen to your bodies, because we all respond differently.
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posted
Some people suffer from dyautonomia. Bending over to pick something up off the floor can send their heart dangerously racing.
Walking may be the extent of exercise for them if they can manage. Cardio is out of the question.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Clint31-
Thanks so much for your post...it's very inspiring!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Any suggestions to me as to how to start would be greatly appreciated. I have alot of weakness (have to rest my arms during shampooing), leg pain and spasticity. I also feel very sick inside like I have been poisoned. I have Lyme, Babs, Bart, and Ehrlich. Yay me.
I am very weak and painful, but am willing to try. Any advice will be appreciated (and also run by my dr.!) Thanks all.
Posts: 374 | From United States | Registered: Nov 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Snailhead-
When I was at my dizziest and could barely walk, I got in a heated swimming pool. I found one I could join at a local rehabilitation center (they usually have them at hospital/health systems). I would push myself to walk around in that pool and tread water. If I had not started doing this, I feel certain that I would have been bedbound many more years and/or in a wheelchair. My LLMD at the time was strongly advocating a wheelchair.
During the course of my many years with this illness, I have had to start/stop exercise programs at different times. It's incredibly demoralizing when you feel you've lost the ground you have gained. I just keep picking myself back up and restarting the exercise plan.
When I first started, I could barely move around a swimming pool. Now, I'm walking 2 miles a day. You'll get there in due time. Just keep going after it if you have a setback. Setbacks are normal with this disease.
You may not be well enought yet to exercise. When you feel well enough to drive safely, you might try the pool.
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Well Clint and Bugg you have certainly inspired me. I have Lyme/M.S. amd I do work out, last time was last Sunday, and I always feel better after doing it and I walk better too that day, but unfortunatly I'm not consistant.I have become lazy and my wheelchair has gotton to use to me,I need to ditch it in the garage and start moving more. I live alone and if only my dog could talk to me to get up and start moving already ! But i'm sure going to try harder and if anything your post Clint reached me.
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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