posted
I want to start going to the gym again and do hard aerobic workouts. Why is this dangerous? Burrascano guidelines say it's dangerous, but doesn't say why.
LLMD didn't say anything about exercise, but when I asked him specifically why aerobic exercise is bad, he said because it makes the blood brain barrier more permeable.
But he told my husband it was okay for him to do aerobic exercise, and he has neurolyme too. Like me, my husband also has a desire to start on hard aerobic workouts again.
Re-reading Burrascano, it says no aerobics until stamina has improved. This doesn't seem to say anything about blood brain barrier. On good days/hours both my husband and I feel like we would have the stamina. But we certainly don't want more toxins to go into our brains!
Posts: 311 | From CA | Registered: Jul 2008
| IP: Logged |
Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I've wondered this exact same thing
I swim 4-5 times a week and don't feel any worse for it. When I was symptomatic but without a diagnosis, swimming seemed to settle down my symptoms.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
| IP: Logged |
posted
I always thought this applies mainly to people with Chronic Fatigue, like me. If I do only a tiny little bit of aerobic excercise I'm completely exhausted and feel like death for days.
Chronic Fatigue doctors says that doing excercise can damage the mitochondria in people with CF due to energy production problems. It sure feels like this happens in my case.
If you feel like you can do aerobics then I think you don't have this problem. Myself, I cannot even imagine to do aerobics.
But why not start out with only 10 minutes and see what happens? If you feel well afterwards you might slowly increase the training time.
But this is only my opinion and I don't know what Dr. B. has in mind.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I've always thought if you truly have Lyme, one couldn't exercise due to fatigue. I'm shocked when I hear people working out 6 days a week, biking endlessly, etc. I guess I determine illness by lack of ability to do cardio. Others may have a different defitinition.
Doing hard aerobic exercising would be an indicator you may have beaten your illness IF you don't get sick afterwards.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would think the main thing would be to start slow and not over do it in the beginning. I would start walking a few minutes a day and work up to walking faster farther, and then maybe start the aerobic exercise.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
I have been on disability since 02 and I say having a dog that has to be walked 3 times a day is my best medication.
Most times if you asked me if I could take a walk I would say no but I force myself up and go make funny faces in the mirror to get myself laughing and my body moving & mood up and then I go outside and force myself to walk as fast as possible for the 15+- min. of the walk and then I feel like I won over my disability and that is not a small thing.
I will usually have at least 30 min before I crash again but without the walk I would have had no up time.
Being completely idle causes bone loss and heart problem so I think moderate exercise is a positive.
Posts: 55 | From ct | Registered: Sep 2005
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I think that it depends on the individual and their symptoms.
Exercise is beneficial to every body system. It is excellent at removing toxins, enhancing blood flow, beefing up the immune system, calming down anxiety and lifting depression....
Lyme does not render every victim in a perpetual state of fatigue. Nor does it render every victim an arthritic cripple.
I am unable to exercise not because of fatigue or because of arthritic or muscle pain, but rather severe headaches, and head pressure....lightheadedness.
I definately have Lyme. No doubt, no question.
Dr. B states that one will not get well w/o exrcise. This can mean stretching, slowly peddling an exercise bike, or light weights. As symptoms lift and stamina is gained, one is able to increase their activity level.
I think that a person knows what their body is capable of and should listen to it.
If you feel that you are capable of aerobic exercise, I would start slow and see how you feel and then build upon that.
As far as the blod brain barrier, I would think that aerobic exercise would have the capacity to increase the blood flow to the brain, which is desirable.
The best answer is to listen to your doctor. Maybe he has a good reason.
In my experience, if one exercises to their capabilities. It is always theraputic. Even stroke victims and heart attack victums are started on exercise.
Feelfit (former certified fitness trainer)
I am NOT a doctor, this is only my opinion. Please discuss all medical issues with your doctor. Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
I was an avid runner prior to Lyme (+ Bart, Babs, Ehrlichia and Mycoplasma). The TBD's hit me like a brick wall, sure I had fatigue, but it was more my off-balance, numb feet, completely dysfunctional nervous system that prohibited me from any regular exercise.
I have tested + for Lyme and company, I have no doubt I am battling the correct beast. I'm not as sick as initially, though still very ill. I do exercise several days a week, lift weights, spin classes, yoga, trail running etc. I guess it's my way of telling myself I'm not dead...yet.
It often makes me feel a little better (mostly while I'm doing it). I believe it's because my heart palps are less noticable, and my crazy-hyped up nervous system is occupied. My LLMD tells me to do what I can tolerate, so I do.
Anyway, just my story. I have some fatigue though not debilitating, very little arthritic symptoms, my nervous system is what has taken the hit; I still wonder if I'll ever recover. 10 months on orals and pretty much still have the thought each day, wondering if Lyme and company is eventually going to kill me...so I live for the moment, I guess, (sigh). TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Ticksuck,
Good for you! I push myself in the same way. Only I am so out of it head wise, that I have to use stationary things for exercise right now.
Elliptical, stationary bike, stability ball, light weights. I will get back to running the trails, but want to be sure that I can avoid the trees and ruts before I do
Good luck and health to all, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
feelfit - I'm like you, my main problem symptoms is lightheadedness... as well as dizziness and feeling out-of-it and my head feeling very full so I feel like I may lose consciousness or faint. So some days it's hard for me to even stand for long periods of time... so exercising seems out of the question on days like that.
I definitely need to start exercising more though, especially when I'm having a good day.
-------------------- 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
| IP: Logged |
posted
disturbedme, same, same...don't mean to give the impression I can do this successfully EVERY day. Some days the balance is way too off, or just feel way to poorly to even try. Some days are better than others; actually for me, it is almost hour to hour, crazy.
Feelfit, as of late, I too have been doing more stationary stuff - bike (spin classes), elliptical, weights, etc...yes, the trail thing is a little more demanding, we do what we can, right? I run with my little Cavalier (dog)...but do worry about passing out or something while off in the woods...mind you, on a very wide trail...if a bush even comes near me I examine myself like crazy for the little buggers, grrrrr....TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
tickssuck, I know what you mean. I work out too and usually feel better when I'm exercising. The symptoms seem to hit me hardest when I'm more idle or trying to sleep.
I have had heart palps in the past also but they never seem to bother me when I run. Since lyme seems to have my pulse rate trending low, I think that raising it through exercise helps somewhat--for a while.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
So Disturbed, Tickssuck,
What is the bugger causing our symptoms? Wouldn't it be nice to know? Then we could bomb the heck out of these nasty creatures.
By the way, my sx, the same as you guys. The feeling like fainting is the worst. And yes, my experience too, it changes, or can hour to hour.
Janice thank you for starting this thread.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Cardiac complications can affect lyme patients and, therefore, for various reasons around that, aerobics could be too stressful for the heart.
In addition, the endocrine system is very weak in most lyme patients and non-aerobic exercise is far less taxing in that regard. (The HPA axis is discussed on p. 4 in the guidelines below.)
And, my doctor pointed out that the liver is stressed much more during aerobic exercise. With all the toxins it has to flush out anyway, adding aerobics to that can overstress the liver and create a severe "pay-back" that actually springs the patient backward in to a relapse upon a relapse, if not careful.
If more toxins are circulating, yes, the blood brain barrier (as it is more permeable with lyme patients) cannot filter out all that is necessary to protect the brain tissue.
There is also the consideration of nerve fibers and the immense challenge of all neurological functions when under the stress of infection - and medication - so not asking the body to do more than it can handle.
On another note:
[Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3] (See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle, page 37.)
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.
Aerobics are still advised to be avoided until a patient is well along the path of improvement.
However, exercise - gentle and strengthening is advised - and is quite necessary to success. There are MANY ways to get moving and get oxygen circulating while also not overtaxing the body.
Even Tai Chi or Qi Gong can be nearly a miracle in this regard. Walking, gently bouncing on a mini-trampoline (if fainting or vertigo are not an issue), certain kinds of dancing or other enjoyable activities . . . .
Many here find that swimming - if the water is not too cold - can help as that can actually be done at various speeds. Just stretching in the water or doing a sort of Tai Chi (it's called "wai--" something) in a warm water pool can be fabulous (if the chlorine is not too strong, of course). "Water walking" can be great, too. If the pool causes a chill, though, that can take the adrenals.
After treatment has had a chance to really address the infection(s), and you get stronger and better, your LLMD should be able to guide you as to when aerobics can slowly be added back.
---
The most recent treatment guidelines by Dr. Burrascano (October, 2008):
And, as Gabrielle mentioned above, mitochondrial dysfunction can be a huge factor in lyme. Lyme damages mitochondra. So, as the mitochondria are the tiny energy centers of our cells, this presents a huge factor for energy output.
There are things to do to help the mitochondria. Magnesium in one of those. d-Ribose is another.
For more about mitochondria, you can search articles at: www.vrp.com and the CFIDS Chronicle as they have had excellent articles about that.
While not about lyme, there are 19 articles here that either mention or discuss mitochondria
-
[ 04. January 2009, 01:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
With apologies for posting so much here, I've been trying for years, to get past exercise intolerance. By sharing some of I've found along the way, I hope others can get past it - or at least work with it rather than against it - with safety.
Oh, be sure not to underestimate the power of Qi Gong or Tai Chi. It may be slow but it is very powerful. It may sound trite, but a strong and steady turtle can still finish the race. We don't all have to be the hare.
Q&A Session with ME/CFS and Fibromyalgia Doctor Lucinda Bateman, MD - September 14, 2007
ImmuneSupport.com
09-23-2007
Welcome to our Live Chat Event with Lucinda Bateman, MD.
Dr. Bateman: There are a growing number of research publications regarding the use of cardiopulmonary exercise testing for the evaluation of ME/CFS patients.
There were a number of papers presented at the Ft. Lauderdale IACFS/ME scientific conference last January 2007. Abstracts or summaries are available on line.* Finding these names could lead to a search of other publications by the authors specifically, which came from several countries.
My experience with exercise testing was in collaboration with researchers at the University of the Pacific - Mark VanNess, Chris Snell, Staci Stevens, and others on their research team. I referenced a selection of papers in my article, ``CFS and the Exercise Conundrum'' which is available online as well.
Cardiopulmonary exercise studies are still in the research phase and so are available only on a limited basis for clinical use as a diagnostic tool or to guide exercise advice for ME/CFS.
They are usually done by exercise physiologists or in the pulmonary departments of academic centers, rather than cardiologists who do treadmill tests to screen for heart disease. I hope we can soon take the information from research to a point where it can be used more widely in a clinical setting.
* * * *
Q: About your "Exercise Conundrum" article on strength building for CFS & FM patients - do you take into account that some of us get worse with time? I had slow onset CFS, and the amount I could do became less and less.
Dr. Bateman: Certainly the nature and course of illness is different for everyone, but a point I wanted to make in the article is that deconditioning invariably plays a role in functional decline and rise in comorbid conditions over time.
The other point is that we must respect the illness of an individual, and tailor physical conditioning to the pathology that exists. If you can physically condition within limited guidelines, you should. If you try and can't do anything without relapse, then you must obey the pathology, but physical deconditioning still remains an unfortunate insidious co-factor.
============
Here's a nine-page article with tremendous detail to understanding physiological aspects of exercise intolerance or regaining ground after illness - with great information on what can help.
Reading about ATP and mitochrondia was very helpful to making sure my nutritional support doesn't miss something essential.
While this is not specifically about lyme, much of the research is still quite applicable.
``The activity should be restorative, or analeptic, serving to relieve, not exacerbate, symptoms.
Redefining exercise in this way acknowledges that a cookie-cutter approach to exercise therapy for CFIDS will not work because one size does not fit all.
To be successful, any exercise program should be tailored to match the individual patient's functionality and symptom fluctuations.''
CHRONIC FATIGUE SYNDROME AND THE EXERCISE CONUNDRUM
by Lucinda Bateman, MD
08-28-2007
Excerpt:
Patients with CFS who are unable to remain active become deconditioned, but their ability to tolerate exercise stress and raise the threshold may be impaired compared to normal individuals.
Indeed, recent studies published by the CDC Computational Challenge teams suggest that CFS patients may have more difficulty than others recovering from common physical stressors, as measured by increased allostatic load (Maloney).
It is possible that some stressors leave a mark or permanent injury in patients with CFS, as if their normal stress response and recovery mechanisms are dysregulated or chronically depleted.
In addition to physical deconditioning, there are many partially understood aspects of CFS, well established in the literature, that might contribute to an exercise threshold, the exceeding of which could result in pathologic injury. This might include:
* Defects of oxidative metabolism,
* Dysregulation of the autonomic nervous system and HPA-axis (CRH, cortisol and aldosterone),
* Presence of chronic or latent reactivating infection,
* Dysregulated immune or inflammatory systems (cytokine production, natural killer cell function, complement activation)
* And other yet-to-be clarified processes.
It is not difficult to imagine an exercise or activity threshold in someone with CFS after which the body experiences physiologic injury that contributes to post-exertional malaise.
It is not necessary to understand this before we respect it.
- full article at link
============================
While some (many?) cases of CFS might be undiagnosed lyme, this information may be helpful to patients across the board.
Even if from lyme, it helps us understand how better to take care of ourselves while seeking treatment/resolution.
Cardiac Insufficiency Hypothesis - article and many links, including to: Pittler MH, Schmidt K, Ernst E., Hawthorn extract for treating chronic heart failure: meta-analysis of randomized trials. Am J Med. 2003 Jun 1;114(8):665-74. [PDF Format]
VIDEO: A three-hour talk by Dr. Cheney on diastolic cardiomyopathy and ME/CFS.
CFS and Diastolic Cardiomyopathy - Paul Cheney, M.D., Ph.D.
---------
New Research on Cardiac Insufficiency
several articles
There is new research from a New Jersey team, authored by Doctors Arnold Peckerman, Benjamin Natelson et al., which found left-ventricular dysfunction following exertion and orthostatic stress in patients with myalgic encephalomyelitis/chronic fatigue syndrome.
The WedMD article and the press release are available at the link below. In an NIH-funded study on impedance cardiography also linked below, Peckerman and Natelson found that low cardiac output correlated with symptom severity in ME/CFS.
Dr. A. Martin Lerner . . . Viral infection persists in the heart, causing left-ventricular dysfunction, producing exercise intolerance. Exercise, in turn, worsens the cardiac dysfunction. . . .
More recently, physicist, physician, long-time ME/CFS researcher and clinician, and heart-transplant recipient Paul Cheney, M.D., Ph.D., has offered an alternative theory that a subset of ME/CFS patients suffer from a diastolic cardiomyopathy, a problem with ventricular filling resulting from mitochondrial dysfunction and low ATP energy in the heart.
=====================================
Again, presented not to sadden, but if there is a dysfunction, treatment for underlying infections and employing support measures can make a difference.
the link to the Hawthorn research above holds hope. I feel so much better when I take that.
posted
Ditto jmb here. This stuff hasn't killed me yet. If I quit my active lifestyle I'll feel like it has killed me, or that it is beating me anyway.
Mind you, there are days I just can't do it. I really try to listen to my body and am nowhere near the fitness level I was prior to Lyme and company. I had never done Yoga in the past and have added that to my genre of activity. The strength work and especially the calming aspects of Yoga are really great for me since my nervous system is so whacked.
Yes feelfit, sure wish I could bomb the heck out of the little critters. I have so many infections, every TBD possible, I never know what's causing what (yes, I've read the symptom lists extensively), and forget about any cycle to my symptoms, crazy stuff.
Thanks Janice, this has been an interesting thread for me. TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[spinning smile]](graemlins/spinsmile.gif)
Printer-friendly view of this topic