posted
My heart is broken. My 17 yr old son is on the varsity tennis team. He started antibiotics last week and had an instant reaction to them.
Doc is trying a new antibiotic at half dose. He leaves for college out of state in Aug. He feels like his legs are lead weights and is not preforming up to his level.
I read about no aerobic exercising during treatment. I am worried he will hurt himself if he keeps up the tennis. He wants to continue treating before he heads out of state but also wants to play tennis his senior year.
I feel he should quit treatment or quit tennis before something irreparable happens. Am I just paranoid?
I am CDC pos. 1 son and daughter Igenex pos. This son not pos but stretchmark rash that disappeared day two of antibiotics.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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posted
Just my opinion, but I would let him play, if he is able to.
It is important to have a life that does not revolve around Lyme and treatment, if you can.
I am not sure if the no aerobics rule is universally believed by LLMD's. It seems that there are many different paths to wellness.
My daughter is sick enough that she spends most of her time laying down, but if she wanted to play tennis, I would encourage it. Obviously, if she got worse and I thought it was related to the exercise, it would be a different story.
None of her LLMD's has ever suggested she should not exercise. One of them even told her to go outside and run around.
Posts: 984 | From US | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Exercise is important but with careful thought. The "no aerobic" thing is for a very good reason. Infection can damage the heart if the heart is overworked.
Hypoperfusion of the brain is also a problem and aerobic exercise makes that worse for many lyme patients.
Can he just play for fun with friends (a few minutes here and there) and not on the team? Is there another team position where he may do well but can go with the flow?
What does his LLMD say?
As you son says his legs feel like "lead weights" he may have NMH, neurally mediated hypotension. It's very common with lyme and adrenal weakness.
It would mean that he is more at risk of fainting. That is a very real concern. I passed out hundreds of times and did much damage to my brain from hitting it so often.
You might get a TILT-TABLE TEST first. But, even then, the way he feels is a clear message. He may not be ready for this.
NMH in discussed in the cardiac thread at the end of post.
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.
======================
NMH (neurally mediated hypotension --- sharp drop in blood pressure after standing a while) is discussed here: --------
Topic: To everyone with cardiac symptoms please read !
=======================
Another concern with tennis is the fast motion of the ball, sudden spurts of other players on the court - and the need to turn the head quickly and not be distracted by other stimuli.
Many with lyme have involvement of the vestibular system (inner, middle ear). Tracking stimuli and BALANCE issues are a big deal for lyme patients. Now, your son may not have any of this but if he does, tennis could cause falls from balance issues. - or overstimulation from visual, auditory or the movement of the head -- or even just they eyes.
I err on the side of safety as I've taken so many falls, so many seizures and I'm just so damaged from all that. I had to figure out so much on my own. So, if I can help others stay whole to begin with, that is a good thing.
In addition to looking up with a bright sun or indoor lights, when playing with a team there is also the AUDITORY aspect. Sudden bells or whistles are very hard on many lyme patients, too. Even grunts from players or applause can be startling.
With care, I do hope your son can enjoy as much as possible about life. For this year, it just may have to look different than he thought. Good luck to him (and to you as his scout).
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
First of all what does your LLMD think about this?
Personally I believe tennis is WAY to strenous an activity for anyone dealing with Tick Borne illnesses. This is just my opinion.
I think exercise is important at a very low to moderate level. Tennis is not moderate by any means. I think it is extremely taxing on the body and takes away from its ability to heal. It is way to overwhelming for a sick body.
My fear would be the ramifications, that in my opinion could possibly be severe. TB illnesses are not to be taken lightly.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- HYPOPERFUSION ( decreased brain perfusion) is decreased blood supply. When the brain can't get enough blood serious symptoms mount up from the garden variety "brain-fog" all the way to fainting, etc. It's very common for lyme patients.
Many years ago, (before lyme dx) I got a copy of this as a handout from our local CFS support group. It is not available to see on the web, but Google books MIGHT have it - or you can call the Nightingale Research Foundation ( www.nightingale.ca )to see if they might send you just the page with the SPECT on it.
Note, too, the conditions under which hypoperfusion increased in this exercise intolerant patient:
- through www.Amazon.com about $28.00 Some libraries may have it.
Buying options through Amazon - or Google the book title for others. Amazon has 3 customer reviews.
Book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome (Hardcover)
by Jay A. Goldstein (Editor), Byron M. Hyde (Editor), Nightingale Research Foundation (Corporate Author), P. H. Levine (Editor)
p. vii. Xexon SPECT scans - Has three sets of 3 images each:
1. Resting: `` . . . represent abnormal resting state of an M.E./CFS brain. There is a perfusion defect . . .''
2. Immediate Post-Exercise State: `` . . . significant decrease in perfusion . . . . The functional resting state [has become aggravated]''
3.-- 24 Hours Post-Exercise: `` severely decreased brain perfusion of the same patient 24 hours after the brain has been stressed by physical exercise. This 24 hour delayed effect may explain much . . . . ``
=================
there is a note to the effect that a normal, healthy patient will probably have increased brain perfusion after similar modest exercise. (Yet, the ME/CFS patient had severe decreases.)
The Nightingale Research Foundation is a Canadian registered charitable organization dedicated to the study and treatment of Myalgic Encephalomyelitis (ME) ...
The book likely is still relevant regarding much. You can obtain the book, or call the Nightengale Foundation for current research regarding SPECT and advice for the most accurate image.
This relates to CFS and I see the connections for those with lyme. However, specifics for lyme would then be discussed with experts who use SPECT for lyme.
-===================
poster's note: This is not to scare people. Not everyone with chronic fatigue (or lyme) will have hypoperfusion - it may be a sub-set of patients (it relates to exercise intolerance). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I would read the Dr. B treatment guidelines, the part on exercise, at www.ilads.org. He says not to do aerobic exercise unless the stamina allows. If your son has the stamina, it might be good for him to play.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
To be on the safe side your son shuld take D-riboze every day 30Grams a day ,Co Q10 200mgx3, whey proteins before tenis ,L carnitine,resveratrol.
Amd most important thing if he has fatigue,fainting filling,lightheaded ,problems with breathing,pain,or can not say a whole sentence after workup should stop.
These signs are telling your heart is working more than it should and if you continue can be demeged.
Posts: 482 | From Nebraska | Registered: Feb 2010
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I can give you some suggestions...pm me. My daughter is an olympic level athlete...and continued her sport with the lyme et al.
IT was not easy, nor did she do as well as she hoped at the time, but it helped her stay focused...to not give up her dream with her new found issues. The mental component for young people is huge...to keep positive during treatment.
She is back and doing fantasic today...better than ever with her sport in college.
some people can keep up the pace whee others cannot, it is individual.
PM me and we can chat off line for some suggestions.
Posts: 1009 | From NJ | Registered: Aug 2009
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