posted
I am a newbie and am going a little stir crazy. I was diagnosed with Lyme and treated in July for 3 weeks. The extreme fatigue lingered but I was told to be patient and deal with it. Lyme got worse by end of August and I found lyme expert who put me on 2 antibotics. (He thinks that I probably have had lyme for at least a year) I have been told no exercise until end of year. IS THIS TRUE? Should I try even though I am exhausted? Is there medical plusses or minuses? How bad is the relapse if I try to work out? (Read posts on surfing and am a bit concerned) Before lyme I was avid tennis player and gym regular (pilates, weights,etc.) I don't want to make my lyme worse, but mentally I need something to relieve the stress and inevitable bouts of depression. thanks for the help. CC
Posts: 15 | From Rhode Island | Registered: Oct 2006
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posted
This is one of those controversial issues. Some LLMD's require you to exercise!!!
There does not seem to be a consensus opinion. This has been discussed several times before. You might be able to find out more by doing a search.
Another big factor for many is Babesia -- if you have this coinfection it frequently causes hypercoagulation which can severely decrease exercise tolerance.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
quote:Originally posted by tennisplayercc:
I am a newbie and am going a little stir crazy.
I was diagnosed with Lyme and treated in July for 3 weeks . ONLY!!
The extreme fatigue lingered but I was told to be patient and deal with it.
Lyme got worse by end of August and I found lyme expert who put me on 2 antibotics. (He thinks that I probably have had lyme for at least a year)
I have been told no exercise until end of year. IS THIS TRUE?
Should I try even though I am exhausted? Is there medical plusses or minuses? How bad is the relapse if I try to work out?
(Read posts on surfing and am a bit concerned)
Before lyme I was avid tennis player and gym regular (pilates, weights,etc.)
I don't want to make my lyme worse, but mentally I need something to relieve the stress and inevitable bouts of depression.
thanks for the help. CC
WELCOME CC! I sent you my PM, private message, my 18 pages of newbie links/advise. In there is info on hypercoagulation Bea mentioned.
Fatigue is really hard to deal with. Are you still working as an attorney or taking some time off to deal with your illness? What is your specialty CC?
For last 36 years I have chronic lyme, 34 misdiagnosed, and last 2 years in lyme treatment, exercise FOR ME has been the pits!
I was an active softball/volleyball/basketball player in adult sports. Had to give it up due to a bad knee when I pulled a ligament and kept reinjuring it.
I've had countless physical therapy HOPING it would help me, but each time made me WORSE than what I went in with.
Water therapy helped until I became allergic to CHLORINE smell then all other smells really got bad for me too.
CC, LISTEN TO YOUR BODY; it will tell you what you can or not do. When you overdue it, you'll know it and remember NOT to do that stupid thing again.
I used to love walking but towards the end before I had to quit work after almost 31 years with NO BENEFITS, I couldn't even walk 1 block without huffing/puffing.
Could you swim instead of your really physcial stuff you do? This way your muscles are used, and the water will help you so much more.
Are you allergic to chemical smells at all?
Have you been tested for MOLD ALLERGIES which give you constant fatigue also?
Are you a undiagnosed diabetic? Have a A1C, 3 mo. blood sugar glucose done to test it?
How about your thyroid? Have you had it tested by blood tests, T3 and T4?
ALL of these cause fatigue plus chronic lyme and reactions to RX meds and supplements!
I've never been as tired since 7-06 until now with the 22 supplements my LLMD prescribed for me.
MOLD ALLERGIST had me quit them for 10 days; then begin them 1 by 1 every 4 days and work my way up.
Lyme is NOT easy at all; we all have different opinions and different body reactions. USE YOUR GUT REACTIONS to help you as you go thru this lyme journey. Bettyg
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Sorry to hear you're going through this, tennisplayercc. It's like being a different person than you were before, isn't it?
If it were me (hey, it was me!) I'd start up in slower increments than you think you can handle. Schedule in plenty of time to rest before and after exercising.
If your body rallies, you're good to go. If you feel worse for days after, you probably did too much, and should take it slower.
But sometimes, I've gotta admit, it's worth it.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Okay, your post brought me out from behind the curtains where I've been lurking for a week or so. We probably play tennis with some of the same people.
I got bit at the end of July and was put on antibiotic (doxycycline) 11 days after the bite.
During that 2-week treatment I decided to take a week off from tennis because "the day after" felt so bad.
A month after the bite I was exercising hard again, and then started getting that ugly feeling again. Another blood test showed slightly high antibodies and produced a referral to a rheumatologist.
None of this sat right, so I have chosen to be proactive with my health. I'm laying off tennis until I get right, but I'm staying active and avoiding impact sport.
Here are some tips. You can get Cats Claw at GNC and Astragalus at Whole Foods. Buhner's book, Healing Lyme, gives a good description of the Bb tactics. Also see Burrascano's pdf file recommended by this site.
It is about 2 weeks since I upped my ultra-refined Fish Oil to 8 per day and began small amounts of those herbs.
For a week, I have been focusing on the therapeutic side of my Tai Chi and taking multiple short walks to oxygenate my body.
Everything that I've read about Lymph drainage massage leads me to believe that my twice daily 1-hour sessions of Qigong and Tai Chi are producing the same result. This warms up the body without stress.
Suddenly, the past couple days I've felt a lot better, which makes me only that much more avid and rigorous about a healthy protocol. Anything you folks on the board can suggest for me, I'm all ears!
Personally, I want to use the antibiotics as a magic bullet only once, and follow-up proactively with a complementary strategy.
Maybe we can go out and hit balls some time... in SLOW motion!
Best wishes, Charlie
FYI
Renowned martial artist Master W., at W. of the D. in East Providence, teaches Tai Chi. (My wife and I presently go there.)
If you like to train on your own, there is no better single module than the Tai Chi Qigong video offered free (except for materials and handling) at:
posted
It may have something to do with any meds you are on. The additional burden of exercise may stress the spleen, etc, too much.
When I had mononucleosis in college, doc told me not to exercise for 3 months for this reason.
Posts: 220 | From central TX | Registered: Jun 2005
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posted
Thank you all for the advice. Sounds like I should be patient and
stick to walking for a while. I just feel I need something to relieve
stress. (no exercise, no sex, no alcohol-yikes!) Patience is just not
something I have ever been too good at. CC
Posts: 15 | From Rhode Island | Registered: Oct 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
It sounds strange that a doctor advised you not to exercise for several months -- I have never heard that one before.
Giving up all physical activity sounds like a bad idea. Walking and gentle tai chi type exercise sounds much better.
You have gotten good advice from folks on this thread, and I would only reconfirm all the benefits of some physical activity while being aware of how you are responding to it. It certainly would be bad for my health to give up walking, limited biking and easy work-outs in the gym!
Posts: 2557 | From home | Registered: Aug 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Prior to Lyme, I'd been very active -- walking 3 miles a day several days a week and swimming about a mile a day the other days.
When my disease was the worst, I pushed myself and tried to exercise but I continued to get sicker.
Finally about 14 months ago, my Lyme was diagnosed, and I started antibiotics. At that point, I was just too sick to do anything much. I also found that if I tried to physically push myself, I'd pay for it the next day.
Little by little over the first year, I would walk a bit more when I felt like it and would sometimes do some light rebounding.
Then a few months ago on vacation, I started walking again -- finally up to about 1.5 miles a day -- and without any ill effects. I'm looking forward to starting gentle yoga and swimming again soon.
I think the advice to pay attention to your own body is excellent. In my case, a lot of my Lyme was physiological -- severely swollen joints, a lot of neuropathy, plus the crippling exhaustion.
For other people, the primary Lyme symptoms are more cognitive, so I don't think they're as affected in terms of exercise. Only you can access where you are with that.
Patience, for me, was the best thing, plus ensuring my body got the rest it needed to heal from these horrific tick-borne illnesses.
I hope this helps!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
No Sex? Now that is a new one to me! I don't think I have ever lost my drive to have sex, just my constantly sleeping is getting in the way.
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
to tennisplayer from docdave also tennis playercc
i went into remission 2 years ago and went from bedridden to tournament level tennis in 4 months.
how? not telling you!!!!!!! ok you win i'll tell.
first step is low impact walking and exercise in a THERAPUTIC POOL.this pool is heated to about 94 degrees and is the start to rebuiding muscles.Most ymca's and many sports medicine rehabs have these pools, but it must be 90degree or higher but not hot tub hot.2-4 weeks with instructor trained for this. many places call it arthritis therapy pool.
next go to normal temp pool 75-84 degrees and again low impact walking stretching and slow. i was sick 3 days a week after therapy.
next med to high impact aerobics in pool only. do at the level you feel comfortable. walking in the pool at 4 feet is on of the best exercises without much strain on body.
water exercise is a mustbefore any land exercise. i have relapsed the last 6 months with multiple issues . during that time ,until i got really sick a month ago, i was able to do some water aerobics at our pool.
so join a ymca or jcc with a therapy and get your a-- back on the tennis court. when we both get better i'll woop yor butt. i actual played today with the pro for the first time in 3 months and sleep all afternoon. BUT YOU KNOW WHAT IS WAS WORTH IT. I LOVE TENNIS , AND LIVE AT A COUNTRY CLUB IN FLORIDA THAT HAS 250 TENNIS PLAYERS. THE THOUGHT OF PLAYING GOLF THE REST OF MY LIFE IS AS DEPRESSING AS THINKING ABOUT LYME DISEASE
good luck and we have a match set and court time feb 1 in west palm beach.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
"Just keep swimming" is the mantra around our house these days, too :-)
After reading all of your insights, I feel like I can formulate a plan to beat this thing. (see what a Type A I am?)
I will take on all you tennis players, as soon as I am able.
As for the "no sex" comment--besides the sleeping issues, I am raving paranoid that with all of the antibiotics, the last thing I need is to get pregnant. (Been there, done that) Silly, huh? Can I blame that on the lyme, too?
CC
Posts: 15 | From Rhode Island | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Haven't read all the posts but did read one I wanted to respond too.
I came down sick in Oct. 2001. I was walking every morning before this.
I kept thinking I needed to continue to walk to get my health back.
I kept trying to find a way to be on my feet daily for a certain amount of time.
I never did come up with a plan that worked.
ON the good days, I was able to walk normally for 10 min out and 10 min back.
I could do this for about 3 days. Then be down for months.
When I moved to a new area, I tried walking to the mail box every day and to the dumpster.
That didn't work either.
I still have times when I can be on my feet and be normal but those are few and far between.
It also sets me back several days, weeks and months.
I am on my feet around the house but have the option to also use the power chair when needed.
It is new that I have been able to get outdoors in the power chair for an hour or an hour and a half.
I recently went everyday for a week. The following week, I was not able to go one day.
Still trying find a pattern there.
I was able to get out 3 times a day for short runs to take my dog to toilet in the power chair.
It is new that i can consistantly sit upright for that long.
But, since being off the IV rocephin I seem to slowly needing recline more again.
I am having trouble staying on track here.
Bottom line is I am getting ready to start some kind of walking routine again.
I recently went to the local small lake and cruised around it in my power chair. I would love to have been able to walk around it.
I have only 4 hours a month of help around the house. So, if I need to be wise on how I use up my energy.
I need to keep enough to be able to eat each day.
Doing laundry, dishes and meal prep is not routinely there yet.
I am hoping I am the exception and not the rule when it comes to lyme disease.
I know I have read how much exercise has helped others.
I have forced myself many times to get out there and just walk daily. It has not worked for me..no matter how much I wanted it too.
I even pay for it if I sit upright for too long during the day.
Although I did not have to lie down when I was on the IV rocephin and could recline in the my recliner instead.
My hope is that you will be able to do some sort of exercise each day.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I've been sick with lyme for over 30 years but it didn't get worse until the last 6 years or so.
I was taking karate with my kids at the time. I always felt my best after a workout. Even though I was in a lot of pain, I did get my first degree about 5 years ago - against my doctor's wishes. She said that type of exercise was too hard.
I continued and got my second degree 2 years later. My pain doctor (never checked for lyme) finally said she was proud that I could do it.
I was diagnosed with lyme about a year and a half ago and put on abx. That really made me sick. I still tried my best to make it to karate 3 days a week. I maybe missed a total of 5 days the whole year and a half.
I did find some good ways to detox - I bought a steam tent with oxygen/ozone pumped in - a great way to do a deep detoxing. Another way is Epsom Salt bathes after karate (I did a lot of those before the steam tent and especially during my 6 week training for black belt).
I spend an extra 20 minutes before class stretching and found out stretching helps those tight muscles in my neck and back so much.
Everyone is different and some can't do as much as others. On days I don't work out, I don't feel as well and when we are off for the holidays, I find my overall well-being isn't half as good as my exercise days.
Its not that I can't exercise at home - but its never as long or as hard as when I am are in class!
posted
I don't know how Lyme has affected you, but in my case it attacked my muscles. I was actually diagnosed with an auto-immune muscle disease (dermatomyositis) before finding an LLMD that was willing to treat me. Fortunately the muscle disease ended up being infectious (not sure if it was Lyme or not) and I'm beginning to recover.
In my case I wasn't told not to exercise but I was too sick and in too much pain to be capable of exercise. My muscles were so weak that I needed to use my energy sparingly.
I also read quite a bit about my situation and learned that while my muscles were damaged, it was dangerous for me to exercise until the damage was repaired or it would make it much worse.
Now that my muscles are getting better, I'm still trying to be careful about what I do because I don't want a set back! Yesterday I felt really good and jumped on the swings at the park with my kids...not a good idea! I aggravated something in my arm that has been sore ever since! (But it felt so great to soar on the swings!) I can't imagine what damage I would do if I started walking or running again!
I know it's hard but it's really in your best interest to take it easy and rest. Perhaps you can find a new hobby to keep your mind busy when you want to be exercising. I've been working more on my crafts that I've ignored for the past few years.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
It is so strange to read the posts here, how active we have been prior to Lyme.
I used to run, hike, bike, scooba-dive - you name it! But I decided I better take it easy for a while, and now, after 8 months, I have started to walk almost every day and once a week a short run - just to get that wind blowing through my hair.
So going from zero exercise I am getting better and my body can tolerate more. For me it is important not to get that awful "post-exercise"-feeling. I feel too crappy just with Lyme, so I don't need more.
It is good though, noticing that my body can do more and more. Gives me hope that I might be skiing this winter!! Posts: 155 | From Norway | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
When I am herxing I try not to push threw and do alot of excercise. Just lay around and wait for the herx to clear.
When I am not herxing I still have to be careful. If I overdue I pay for it in the days following. I think what the others have said is a good suggestion. Listen to your body.
I do admitt on adverage days my energy level is still not there. I do have to force myself to keep moving. Even if it is some light house cleaning.
Walking a bit on my down days is good for me in the long run.
Everyones different.
make sure to talk over everything first with your LLMD
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I am a marathoner (10 in my past including qualifying for Boston twice!) and have had Lyme for at least 3 years. I was diagnosed about one year ago so by the time I started treatment the Lyme was pretty entrenched. I have strickly CNS Lyme (no arthritic systoms to speak of...or another way of putting it..nothing below the neck). Anyway, this whole exercise issue is a constant battle for me. I desparetly want to run again but getting healthy takes priority. I now am a walker...putting in anywhere from 10 to 18 miles a week. I will jog 5 or 10 minutes occasionlly but anything more than that puts me out the next day. I was told by my doc to do 50% of what I think I can handle. A good rule to stick by but hard to stick by. I tend to push myself too hard. I hope that isn't setting me back in the end. Time will tell. For me the issue is keeping my heart rate down. When it's up for an extended period of time is when I feel most symptomatic. Good luck and keep us posted on how your doing.
Posts: 90 | From massachusetts | Registered: Aug 2006
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Like many who have already posted I was a very intense exerciser. I was a bodybuilder of sorts, and, other than a few breaks (when unable to train), I managed to keep up training for many years after being infected.
Pretty quickly my recovery ability was effected (affected?), however, and I had to lower the volume of my training (both the number of sets and number of training days). For a time I had to lower my level of intensity as well, as after a particularly gruling set my heart would speed up and not simmer down for hours. But overall, the exercise seemed to make me feel better.
Though this eventually passed, and my ability to work out got less and less until I had to stop completely. Now, at this point, a few loads of laundry -- up and down the stairs -- can set me back 4-5 days with post-exertional weakness, fatigue, malaise, along with a flare of my regular syx. These days, I cannot turn a peppermill without my forearms burning and aching, and then having a VERY negative reaction in the days to come.
Looking back objectively, I believe that my training, pumping huge quantities of spirochete-enrighed blood into each and every muscle, very regularly, ensured that the bugs got as deep into the tissue as was possible. This, combined with frequent sunbathing, with its immune-lowering effects (? there's that word again!), and a few other stupid things I did, all but guaranteed the bugs would dig in.
But ...
Damn, it all felt so good.
If it were me, I would take several years and concentrate on trx and detox, and maybe if you are really lucky tennis will be waiting for you when you are done. But, I know if anyone told me this ten (or so) years ago, I never would have listened. So, if you choose to play -- ENJOY EVERY FABULOUS MOMENT OF IT!
I hope you get well quickly.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Dr. B updates his Lyme treatment guidelines every few years. His most recent guidelines say exercise is necessary to overcome Lyme, but it should be guided and should not include cardio exercise.
I personally do Vinyasa Yoga. It does get the heart rate up, but I've learned to be careful when there is fast and vigorous movement. My pulse gets too high and I feel sick.
But I found getting my body moving, limber and strong was vital to reducing my Lyme symptoms.
Below is the link to Dr. B's guidelines, and I've also pasted some of the text from the guidelines on rehabilitation (exercise).
For more information, including the actual recommendations for physical therapists, go to pages 27-29. Maybe you can print this out and discuss it with your doctor?
LYME DISEASE REHABILITATION Despite antibiotic treatments, patients will NOT return to normal unless they exercise! This is because in most cases the chronic Lyme patient is deconditioned.
More importantly, a properly executed exercise program becomes part of the treatment, as it can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Therefore, a vital part of any plan for recovery must include serious efforts at physical reconditioning.
This may begin with physical therapy: the physical therapy should involve massage, heat, ultrasound and simple range of motion exercises to relieve discomfort and promote better sleep and flexibility. Ice and electrical stimulation should not be used!
The program ultimately must evolve into a graded, strenuous exercise program that consists of a specific regimen of non-aerobic conditioning- see below.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories.
It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive.
Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective.
In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function in the immune system, an obvious potential benefit in an illness like Lyme that is known to weaken immune responses.
To reap this benefit, the exercise sessions should last at least one hour, but never be repeated more often than every other day. The following pages is an exercise prescription that outlines these recommendations in detail.
NOTE: a cardiac stress test may be necessary prior to exercising to ensure safety.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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