posted
I apologize if this is not the correct place to post this...
Prior to getting sick, I ran 3 miles several times per week. After nearly 6 months of Lyme/RMSF, I am ready to start again....I think!
I noted that some of you have started running again despite still being in treatment or still with some symptoms....can you tell me how you went about this...slow start vs jump right back in, did you struggle at all at the start, did you notice symptoms worsen?
Thanks
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
Prior to getting lyme in 2004 I was a competitve runner and triathlete. Had lots of tx off and on since - symptoms come and go..
I just finished a course of tx but think I may have a co-infection and just got tested on Friday. Still feeling really sick.
For me.....like right now when I am not well..The past week a walk to the car felt like a marathon so of course no running.
This morning, however, I woke feeling pretty good so went for a run but did the 50% rule.
I ran 50% of what I felt I could run - not what I wanted to run but 50% of what I felt I could run. I felt I could run 4 miles so I ran 2. This is tough because those sunday run use to be looong ones..13 or 14 miles..now I am lucky to get 2 miles in. I hate lyme...
I know that I will need to rest for days after a run but I find that it helps me to get up a sweat and just helps me to feel in touch with who I am...
Yes, you NEED (IMO) to start VERY slow..Give your body a chance to adapt once again - not just your immune system but your joints and ligaments and cardio. system etc..
Listen to how your body responds to the load of running and moniter it appropriately. Everyone is different and only you will know if running is something that can become a part of your own tx plan.
Best of luck to you.. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
DItto on what TG said....I like the 50% rule...great advice.
Going slow was unfortunately, not a problem for me. In the 2 and 1/2 years that I had to stop all exercise, someone replaced my legs and lungs with those of an overweight 80 year old smoker.
I rarely feel great after running (and I'm only talking a couple of miles), but it doesn't set me back for days. I usually get nausea, chills, and slight flulike symptoms after a run.
I am intolerant to the sun and do feel worse if I run on a sunny day. I get creepy, crawly patchy dysthesias on my legs, which my LLMD says is nerve related. He prescribed Lyrica, but so far that is not making much of a difference.
I used to make goals, but now I try to keep my expectations low and just enjoy whatever my body lets me do on a particular day.
Good luck!
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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posted
gararunner; I came up with the 50% rule through alot of trial and error...I was doing more harm then good to myself and needed to get a hold of my overly competitve nature:)
Intersting about the dysthesias on your legs after a run cuz I have been getting that lately after I run. Though mine could be from the Topamax I am taking, I have noticed an increase since I stopped the Doxy last week.
I find that right after the run I too get slight flu like symptoms that go away and I am left with really bad fatigue that can last for days if I over do it. I may have anemia either from the Doxy or a co. which is not helping things.
Anyway, sick tick I think this is a GREAT post and would love to hear how other runners/triathletes/bikers are coping with lyme and exercise.
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
Thank you for responding! I will start very slow, and expect a set back for a day or so after. I feel strongly that I need to try, as the physical activity is important for so many reasons, including assisting my immune system to fight this, and all the other crud out there. And I am SICK and tired of Lyme dictating my life!!!
I will let you all know how I do....going to start on my treadmill, and will try a walk/run for 1 mile and see how it goes. That is about 50% of what I think I can do (great rule, by the way!) I am also doing very basic yoga poses to loosen up those poor, ravaged joints!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Aerobic exercise can damage the heart if infection is present. It also can further damage the adrenal system and the liver.
Mitochrondria damage is also a huge factor with lyme disease. That must be considered as exercise further taxes mitochrondia - the very supply of our energy.
These are just a few of the reasons why Dr. B guidelines say no aerobics until well - and then - with a very measured approach.
There are lots of non-aerobic options for moving. Choose something that nurtures you during - and afterward. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
TR, I'm sorry you are experiencing the dysthesias, but in a perverted way I am glad to hear someone else has this symptom.
It's been with me since spring of 2007 when I started to get really sick. MY LLMD says the nerves are the most difficult to heal and take a REALLY long time to do so,
I'm surprised you're more symptomatic after stopping Doxy since it is associated with sun intolerance. Have you/are treating for Babs?
ST, your plan sounds good ...keep us posted!
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Treatment Guidelines, 16th edition, October, 2008 Joseph J. Burrascano, Jr., M.D.
Page 20: . . .
If treatment can be continued long term, then a remarkable degree of recovery is possible.
However, attention must be paid to all treatment modalities for such a recovery - not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
. . . .
* Page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES . . . .
Page 31: . . .
LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
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.
Regular exercise-related movements can help mobilize lymph and enhance circulation. In addition,there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound.
This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed. The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep.
The trick is to time the exercise days to take advantage of these rebounds. For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts.
However, because T-cell functions do fall for at least one day after aggressive exercises, be sure to never exercise two days in a row. Finally, an in intermittent exercise program, properly executed, may help to reset the HPA axis more towards normal.
On the following page is an exercise prescription that details these recommendations.
This program may begin with classical physical therapy if necessary. The physical therapy should involve massage, heat, ultrasound and simple range of motion exercises to relieve discomfort and promote better sleep and flexibility.
Ice (vasoconstriction) and electrical stimulation (muscle spasm and trauma) should not be used!
The program must evolve into a graded, ultimately strenuous exercise program that consists of a specific regimen of non-aerobic conditioning- see below.
Have the patient complete a gentle hour of prescribed exercise, then go home, have a hot bath or shower, than try to take a nap. Initially, patients will need this sleep, but as they recover, the exercise will energize them and then a nap will no longer be needed.
NOTE: a cardiac stress test may be necessary prior to exercising to ensure safety.
-------------
Page 32:
LYME REHAB-PHYSICAL THERAPY PRESCRIPTION
. . . (there is a P.T. prescription all set to fill out here) . . .
Excerpt:
PROGRAM:
1. Aerobic exercises are NOT allowed, not even low impact variety, until the patient has recovered.
2. Conditioning: work to improve strength and reverse the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions.
This can be accomplished in exercise classes called "stretch and tone", or "body sculpture", or can be achieved in the gym with exercise machines or carefully with free weights (see cautions above).
3. Each session should last one hour. A gentle hour is preferable to a strenuous half-hour. If the patient is unable to continue for the whole hour, then decrease the intensity to allow him/her to do so.
4. Exercise no more often than every other day. The patient may need to start by exercising every 4th or 5th day initially, and as abilities improve, work out more often, but NEVER two days in a row. The nonexercise days should be spent resting.
5. This whole-body conditioning program is what is required to achieve wellness. A simple walking program will not work, and simply placing the patient on a treadmill or an exercise bike is not acceptable (except very briefly, as part of a warm-up), as aerobics can be damaging and must be avoided.
From Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle
Post-polio expert Dr. Richard Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3]
Excerpt:
``when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts. We all know that to play squash with the flu can lead to heart attacks.
Much the same danger can be courted by undertaking hard exercise with M.E. (CFS).'' - End quote.
posted
Keebler, I am glad that you pointed this out. I am probably going to run anyway, but will make darn sure that I rest for a couple days in between sessions, and I like the bath/nap afterwards suggestion. I am just SICK of letting this disease dictate everything I do (or don't do, in this case!)! It has made me fearful of enjoying my acres of woods, I have gained 5 lbs from sitting on my rump (maybe that is partly due to the fact that the only thing that sounded good to eat for weeks was ice cream!), and I feel weak when I once felt strong.
I hope I am making the right decision here....but I did post the question hoping for some guidance, and so I will appreciate any posts either agreeing or disagreeing with it.
Anyone else ready to throw away the logic, the protocol, etc. and do something you love again?
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
Just wanted to let you know that I have been running 4-5 days a week for the past 6 months, and I believe it's been helping me feel great.
I agree with all of the other comments about not overdoing it, either with distance or intensity. For the first 6 months I was sick, I just walked, starting out with 5 minutes and working my way up to an hour. Then I started adding a walk/jog in to the mix. I would always go super slow and never push myself, ever, or I would come to regret it.
I started running again this summer (I was finally off abx after treatment for a year), at a pace/distance that I was at before I got sick. My LLMD said it was ok at this point to push it. At first, I would get a headache afterward, but that went away after a week.
I run outdoors, on a track or on wide, paved pathways/trails. Not brave enough to venture onto dirt paths again.
It has been great for body and soul, in my experience. Good luck!
Posts: 67 | From SF Bay Area | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sick Tick,
As Julie points out, she had been finished with treatment for a year before going back to running - and had her LLMD's advice on her protocol.
You said you've been sick for 6 months. How long have you been treating?
Have you had your heart checked out by a LL doctor? Has your LLMD agreed with your plan?
You might consider Tai Chi as that can be very helpful but not taxing. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I became ill end of May this year, and was fortunate enough to be treated within 48 hours of my first symptoms (had rmsf too, so got acutely ill which helped me get taken seriously in the ER). I have been off meds for almost 3 months now and feeling better all the time-although slow progress.
I did have an EKG at one point during treatment that was normal, but that doesn't tell you much, I know.
From the beginning, I have continued to go out to my horse barn, and work up quite a bit of sweat out there (water buckets, throwing bales of hay, cleaning out stalls), so I think I am better off than most when it comes to the physical activity endurance.
Tell you what-I will start out by walking the 3 miles for a few weeks before starting the jogging again.
I want this to go well, and will listen to the voices of experience on this one.
Thanks, all of you....for everything!!! Runners, I will post when I am once again jogging, and keep you posted as to my progress...and Keebler, thanks for the concern and thanks to the rest of you for the encouragement. 3-4 months ago, I seriously thought I would never run again.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad to hear you got prompt treatment. Hey, when you do you walks, may I suggest to walk in circles so that you don't have too far to go to get back home at any one point? From experience, circles really help.
Also, while I hate to be the voice of caution, you simply cannot trust how you feel when you get out there. I've been out on a beach, feeling like I could walk forever, only then suddenly, with no warning, requiring two people to hold my body up to get off the beach. Then, weeks before I could even stand again.
Several times over. When one feels good "running with the wind" we want to run away from illness, run back to our old lives but I just seemed to run deeper into the ground, even when walking.
This experience is not unique. However, most of us never got diagnosed or treated so you are lucky in that regard.
I'd say listen to your body but I know that, often, our bodies are like the dog that just can't wait to get out and off his leash. How you return can determine your future, though, so listen to wisdom all along the trail. Your spirit may say "soar" but listen to your brain. Keep in mind the rationale and science behind the cautions.
Be sure your adrenal and liver support is in place. d-Ribose can also help your body acclimate to exercise. You can search for literature about that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yeah, I remember one night wanting to run until I could not run any more just to escape the intense neurological symptoms I was experiencing. I wouldn't have gotten too far back then, though!
You are probably right...I feel like I can do almost anything I had done prior to the illness, but I bet once I start, it won't feel that way.
Bummer.
But walking is a start....I can live with that, and can even be grateful that I can do that!
I will check out that supplement you mentioned. I have already drawn up a plan for detoxing based on an LLMD's recommendations....one that involves just food modifications and not the addition of stuff I have never heard of. I will not be doing that though until AFTER Thanksgiving....I made and froze some pretty tasty apple pie filling made from my friend's apple orchard fruit, and I am NOT missing out on that!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
Just wanted to clarify: I had been under treatment for a year (and recently off abx) when I started running again, not off abx for a year.
But, as Keebler pointed out, I ALWAYS checked with my LLMD before bumping up my exercise regime.
Also, like you, I started treatment somewhat "early" (6 weeks after my bite), and I exercised regularly before becoming ill, so I think that made it easier to start up again.
Don't rush things, you'll get there eventually.
Posts: 67 | From SF Bay Area | Registered: Jun 2008
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posted
Sick Tick; Sounds like your version of the 50% rule! Good for you and keep listening to your body.
Back in 2005 seven months after IV treatment I came back to running better then I ever had. I PR'd across the board in every distance I raced and felt soo good.
I felt like superwoman!!!! Until I got bit again and again...
Since then it has been touch and go, but just wanted to let you know that it is possible to come back from Lyme and be well again. I was - if only for a little while and have that glimmer of hope that it can happen again.
Best of luck to ya! TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
For sudden energy, I recall that's what I got when I took malic acid and mg - called supermalic. So don't know if that combo would help some of you run easier?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
ChuckG; That is a perfect way to describe the muscle feeling... Hitting the wall at mile 2 instead of 24 (never got to 100 miles!!). A great way to think of the many ways Lyme /Co.s effect our physiology. Wonder if NT Factor is good for that?
Robin123; The overall lack of energy is a killer so thanks for sharing that info. on supermalic -I for one will check it out. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
Interesting ChuckG...my very thorough neurologist ordered a muscle biopsy for me, looking for mitochondrial issues. This was after MRIs, EMGs, nerve conduction tests, and lumbar puncture. They even ordered DNA sequencing for my now missing piece of right quad. In the end, everything was completely normal, except for a slight carnitine defiency. I wonder if they would have found Lyme in the muscle if they were looking.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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posted
Shame on me....but I jogged for just a little while during my walk....thus far, I feel fine....maybe a little increase in my neuro symptom (just a little though) but the lymph nodes didn't swell up worse.
Thank you for the words of encouragement....and gee whiz, how does one get to the 100 mile thing? I thought I was a hotshot to be running 5K's at my age!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
I was also a semi-competitive runner. I got sick in late 2003. For me my symptoms have been pretty much from the neck up (dx with Bart) so I've also felt that the benefits I get from running outweigh any negatives at this point.
I've been running ever since but its toned way back these days. I used to bang out 40-50 miles a week with track work outs, tempos, longer runs and plenty of races. Now I'm pretty much a penguin running around 20 miles a week with almost no faster running (occasional striders or tempoish stretchs). I'm 45 years old.
I have been curious over the past few years if running was indeed hurting me but there were times when I didn't run for 2-3 weeks and I did not any notice positive impact in my symptoms/treatment progress to warrant me to consider dropping it all together.
I used to run no matter how bad I felt. Now I listen to my body alot more and will scale back or bail on the run entirely if I don't feel up to it. Every LLMD I've ever had has evaluated me being in a state that could handle the aerobic activity.
The toughest thing is when I run while in a herx and am panicky and anxious - at those times I fight off negative thoughts like I'm about to die right here and now. Thankfully those days are rare and to date I'm still here!
I also had to scale back running while taking Levaquin as it made my tendons sore.
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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here's my two cents...i wasn't running at all until 6 months into treatment and i had to go very very slow. I did manage to get myself in good enough shape to run a 5k over the follwong 6 months. But since switching meds in June i am on again off again. if you find yourself in that position be very careful.
what i mean is i was running 3 times a week and my body was accustomed to it. My health now is such that i may run 3 times a week and then miss a week...i had to learn the hard way that if you go back after a week you cannot resume the same mileage. i made that mistake and my knees are paying for it...nothing to do with Lyme per say.....
also i firmly believe that you do whatever you can....my training schedule is so sporatic right now but i keep saying the goal is just do to something...who cares if its less weights or less time....its more than sitting on the couch.
Keep the Faith,
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
I promised an update.....this weekend, I pushed myself to the max-not running yet, but in my horse barn. Shoveled and hauled 9 wheelbarrows full of sawdust from one barn to the next, cleaned a tack room, raked my barn aisles and changed bedding in 3 stalls....etc. etc. Haven't worked that hard since before becoming ill! Yes, my neuro symptoms returned today, but are already going away tonight!
I am going to go ahead and bump up to straight running-I am convinced that I am ready! I will keep the 50% rule as my guideline.
Wish me luck! And I would love to hear updates from all of you as well!
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