Is anyone else exercise intolerant due to Lyme?
I literally can't walk very fast without feeling like I'm dying, severe SOB, racing heart etc. I have to walk really, really slow. I feel like I'm 80.
Does this resolve with treatment? I used to love to speed walk along the beach.
What kind of exercise can we do while treating? or is it best to rest?
Also, a strange thing, but does anyone ever get strange sensations on the tip of their ears? Like, they go very cold or something? My ears get these weird sensations and go very red, even in heat. And I always have a fullness in ears type feeling.
I finally came across an amazing GP here in Australia (I got Lyme when travelling though...I think) and I think someone must be looking after me. I was expecting her to call me crazy, like every other doc. Some of the doctors I have seen have said "what is Lyme disease?" and treated me like I'm nothing.
Instead, she was shocked noone has tried to help me and she referred me to one of the only specialists in Oz who believes in Lyme, and who treats hundreds of people here with it. He is setting up a special test for me where they're doing blood smears and so on at the only lab here that properly tests for it. PCR and CD57 test I believe... They can also do Western Blot. Are these reliable?
I spoke to them on the phone and they knew a lot about Lyme, which was a change.
She gave me scripts for Zedd 500mg and said she'll wait to know if I have babs or bart, and she'll give me stuff for that too. She starting listing all the supplements I'm going to need. My symptoms got worse when I started taking 100mg of Mino for acne, and she said that would fit with Lyme because even though 100mg is a small dose, toxins would still be getting released and I'd flare up somewhat.
She was lovely and gave me so much hope. Only a few nights before I was in tears because another doctor threw me out of her office calling me insane. She told me I'd had enough tests done.
It's refreshing to know that not all doctors are completely ignorant though. I am surprised and very happy to have stumbled across this gem of a doctor yesterday. It feels like one in a million. Doctors simply don't believe in Lyme disease in Australia.
Sorry for all the questions, I appreciate your replies ^__^
Posts: 51 | From Australia | Registered: May 2010
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Excercise is important when ill with Lyme, though if you are too weak to do much, go until you can't. I would say the best thing to do right now, since walking seems to tire you out, is light strength training. Using resistance helps build muscle mass & strengthen joints. Just don't overdo it.
I continued working out at Curves during treatment, though it was difficult. When it hurt, I didn't do it. Just keep bending your arms & legs. Swimming would be very good, but be careful. You can beat this monster. Don't give up!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Treatment Guidelines, 16th edition, October, 2008 Joseph J. Burrascano, Jr., M.D.
. . . 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
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. -------------
LYME REHAB-PHYSICAL THERAPY PRESCRIPTION
. . . (there is a P.T. prescription all set to fill out here) . . .
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. . . .
Believe it or not, toxic free radical molecules and oxidation by-products are produced whenever you exercise. . . .
Hint: LIVER SUPPORT is VITAL
Tai Chi, Qi Gong, some kinds of Yoga and Pilates routines . . . strength training . . . walking . . . maybe slow biking . . . water movement (Tai Chi in water is very nice) . . . whatever brings you joy of movement while safely supporting your body. Do what you love. Dancing can be good. Just not at top speed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Honored Contributor (25K+ posts)
Member # 12673
- You mentioned some ear issues. Links here may explain a few things but, first, a diet free of gluten, diary, corn and soy is important to test out. All those cause phlegm and phlegm causes more inflammation.
Specifically for LYME patients - lots of details about ears and what can help --
3/4 of the way down page one, there are lots of LIVER LINKS:
You might try separate posts for each question category. That makes it more bite-sized and may get better responses.
->Is anyone else exercise intolerant due to Lyme?
Absolutely, I'd say that most people are - at least to some degree.
->Does this resolve with treatment?
->What kind of exercise can we do while treating? or is it best to rest?
It's generally recommended that you do not to aerobic exercise, but it is important to do *some* kind of exercise - like gentle weight lifting or stretching. Just learn your limits, because it can set you back in your healing process if you overdo it. Eventually you'll be doing fast walking again! When I was first bitten, I had severe shortness of breath too. I also went from regular 5-8 mile runs to having to crawl sometimes.
->Also, a strange thing, but does anyone ever get strange sensations on the tip of their ears?
I don't know, but it's possible that it's related to lyme. Lyme & co. can cause all sorts of weird neurological and other problems.
-> PCR and CD57 test I believe... They can also do Western Blot. Are these reliable?
Those are complicated Q's that someone else is better qualified to answer, but a low CD57 is a sure sign of Lyme, I think.
Search for the Burrascano Treatment Guidelines. They are very helpful for answering many questions.
It sounds like you are very lucky to find a knowledgeable doctor. I'm glad you are getting help!
Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
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Honored Contributor (25K+ posts)
Member # 12673
- Dance along - A Four-minute VIDEO from YouTube: