Topic: Can Lyme Disease cause Post-Exertional Malaise?
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Disabling fatigue which lasts for days or more occurs after exerting myself in normal physical or mental activities. I know that this is a hallmark of Chronic Fatigue Syndrome, but wondered if it occurs in Lyme.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes it does. I believe Babesia (a common co-infection) can also cause these problems. I think it is not uncommon in chronic infections.
Lyme can cause dysautonomia. I think that is a big part of why people have post exertional fatigue.
I was diagnosed with CFS and fibromyalgia which turned out to be lyme.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This is a sign of babesiosis which is a coinfection of lyme disease. Most people with lyme also have babesiosis.
Here is what Burrascano says about it:
"BABESIA SPECIES- � Rapid onset of initial illness, often with sudden onset of high fever, severe headaches, sweats and fatigue, thus it is easy to know when infection began. � Obvious sweats, usually at night, but can be day sweats as well. � Air hunger, need to sigh and take a deep breath; dry cough without apparent reason. � Headaches can be severe - dull, global (involves the whole head, described like the head is in a vise). � Fatigue is prominent, does not clear with rest, and is made worse with exercise."
I cut off the symptom list at the one that is the subject of your inquiry.
This symptom is extremely common with lyme patients. You really have to watch how much you do so that you don't disable yourself afterward for many days.
Many of us have learned that.
I had lyme, babesiosis, and bartonella. I got rid of all of these diseases 5 years ago by going to a doctor who follows the Burrascano lyme treatment protocol.
I suggest you read and even study the Burrascano document to really get an education on this complex and horrendous disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I don't know what you consider "normal" physical activities, but with any form of CFS or Lyme, aerobic workouts should not happen, period. High stress situations should also be avoided as much as possible.
I'm beginning to form the opinion that there are two kinds of Chronic Fatigue Syndrome: Diagnosed Lyme and Undiagnosed Lyme. All the other viruses and coinfections tag along for the ride.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: Can Lyme Disease cause Post-Exertional Malaise?
Absolutely. First, it's very serious toxic infection. That's a huge "Bingo" right there. Huge. Infection causes fatigue.
Many other reasons are given above and also see the links here for MITOCHONDRIAL dysfunction and for the article:
"When Working Out Doesn't Work Out"
ADRENAL dysfunction is also a huge issue with lyme.
So much more about all that is here: ---------------------------
Topic: To everyone with cardiac symptoms please read ! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks, Thanks, Thanks so much to all of you. I had heard that with Lyme you need to exercise a lot, but obviously, that's not true for everyonee, especially if you are co-infected.
I was bitten last spring. Have a recurring rash from it. Was bitten again this spring, went to Urgent Care and they did a culture and a tick panel. I hope I find out something. I know that the tests are not reliable, but it would be nice if would be accurate for me.
I am getting ready to leave, but will write later.
I wish I could afford a LLMD, and I wish there were one in my area.
I'm not giving up.
P.S. I've been diagnosed with Chronic Fatigue Syndrome since 2000, but I think it is Lyme, because in 2003 these circular and oblong lines (rash) appeared on my face. One is still there. I knew absolutely nothing about Lyme and did not have health insurance nor money at the time.
posted
Post exertional malaise: Prior to treatment and during the beginning of treatment I had it BAD BAD BAD!!! Now I can do a bit more but there are still days when I lie down after doing some things and have malaise--like the lying down actually makes me feel worse for a little while.
But prior to treatment--GOSH!! it was so bad I'd just whimper. So I think with treatment some of this will let up for you. It's so awful and confusing. And like others I had the stupid fibromyalgia diagnoses and even Parkinsons. I have a long long way to go but things have improved somewhat.
On exercise: my understanding is no aerobic exercise but try to do SOMETHING while you're in the thick of it. Walking, yoga, pilates, any muscle strengthening type stuff. Maybe swimming and biking are ok if you don't over do it. I think it's important to keep moving and doing what you can. It's very hard in the beginning.
Good luck Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Exercise - movement - is still necessary. But it's all about manner and degree, depending upon individual capacity. --------------------------
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. . . .
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008)
====================
You asked why no aerobics during infections: (in addition to explanations above) heart and brain are two reasons. With infection, aerobics can damage the heart.
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.
==============
See the post about brain hypoperfusion (and how aerobic exercise making that worse for CFS patients) from the SPECT details from the Nightingale group. This thread also talks about POTS, Mitochrondrial repair, etc.;
Topic: To everyone with cardiac symptoms please read !
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.
There are many speeds to most activities. Do what you love and move at a speed your body will love you for during and afterward - and the next day. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Rivendell - these statements need to be addressed:
You said: "I was bitten last spring. Have a recurring rash from it. Was bitten again this spring, went to Urgent Care and they did a culture and a tick panel. I hope I find out something. I know that the tests are not reliable, but it would be nice if would be accurate for me. . . .
. . . I wish I could afford a LLMD, and I wish there were one in my area.
I've been diagnosed with Chronic Fatigue Syndrome since 2000, but I think it is Lyme, because in 2003 these circular and oblong lines (rash) appeared on my face. One is still there."
end quotes ============
I'm far too tired to address all that but it can't be just dropped. Others will be along with specific suggestions for this thread is not at all just about what we thought: " Post-Exertional Malaise"
This is about untreated infection(s). That is an entirely different thing. Until infection is addressed, your body may not be strong enough to do some of the rehab suggested above. That is for patients who are being treated or who have been treated.
There's a completely different set of activities that are most important now: find a LLMD for full assessment. Somehow.
Learn more about self-care and supplements that might help support your body while the rest is being figured out.
Take a photo of your current rash. In the menu on the lower right of this webpage, compare with the rashes for various tick-borne infections:
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