Polio Connection Information Book - Volume F
L-CARNITINE TREATMENT OF PPS FATIGUE
By Judith Hughes
The March, 1998 newsletter of the Rancho Los Amigos PPS group (Downey, CA)
was a cornucopia of information about PPS and drugs, both prescription and over the-
counter (OTC). One of the drugs discussed was L-Carnitine.
Coincidentally, I've been taking L-carnitine for over two months. My daily
exhaustion has disappeared. My body feels calm, my brain is alert. I have more endurance.
I am astonished that it has helped me so much. L-Carnitine treatment of polio fatigue in the
United States is still unorganized and sketchy. The Rancho newsletter reported on L-
Carnitine treatment of polio fatigue in Australia and Switzerland.
What is L-carnitine?
L-carnitine is a naturally occurring substance said to be the single most important
molecule in all living things because it is required for energy production. Within our cells,
L-carnitine helps move fatty acids to within cell structures called mitochondria.
Mitochondria oxidize energy rich substances, providing an energy source for many
metabolic processes. Normal muscle cells have a great concentration of mitochondria
required to power muscle cell contractions.
Where does L-carnitine come from?
L-carnitine is produced in our kidneys and liver from methionon and lysine (with the
aid of vitamin B6 vitamin C, niacin, pantothenic acid and iron). Normal people make their
own L-carnitine and do not need to take L-carnitine as a supplement. Any excess is
excreted from the body.
What are the established uses for L-Carnitine?
Some people are born unable to synthesize L-carnitine adequately. They have what
is called a "primary" deficit. The Muscular Dystrophy Association recognizes certain
conditions caused by the body's inability to make L-camitine; these result in weakness of the
shoulders, hips, face and neck muscles and the inability to sustain moderate exercise
without kidney damage. L-carnitine is being used to treat these conditions. L- carnitine is
being used for some cardiovascular conditions. These include angina, acute myocardial
infarction, postmyocardial infarction, congestive heart failure, peripheral vascular disease,
dyslipidemia, and diabetes.
Basic Research on L-Carnitine
On 4/2/98 I did a "PubMed" search on "L-carnitine" and was presented with 5,955
citations of studies in which some aspect of L-carnitine was being studied. (PubMed is free,
medical-search software provided by the National Library of Medicine on the Internet.) The
greatest number of these focus on basic research into L-Carnitine's many functions in the
body and brain. Yes, brain.
L-carnitine easily passes through the blood brain barrier (BBB). Cerebral spinal
fluid concentrations parallel those in blood plasma. Researchers are beginning to study the
possibility that L-carnitine might be useful in helping drugs get through the BBB.
Interesting is the fact that L-carnitine is also a precursor for acetylcholine, the
neurotransmitter whose breakdown is inhibited by Mestinon.
Clinical Research on L-Carnitine
I don't know of any studies being done on L-carnitine and PPS in the United States.
But, there are studies demonstrating L-carnitine effectiveness in reducing symptom levels
in patients suffering from chronic fatigue syndrome (CFS). Like PPSers, the level of L-
carnitine is low in CFS. L-carnitine studies have also been done on early Alzheimer's
patients and significant improvements in behavior and attention have been demonstrated.
Secondary Deficits of L-Carnitine
PPSers have a secondary deficit of L-carnitine. We evidently manufacture L-
carnitine in our bodies, but with reduced muscle tissue, it cannot be adequately stored. In
September 1994, M. J. Matheson, MD, wrote about L-carnitine and post-polio syndrome
(Polio Network News, posted later on the Internet). He described the 1993 study in
Switzerland done by Dr. Thomas Lehmann who treated 27 persons with post-polio
syndrome with 1000 mg/day of L-carnitine. Most subjects reported improvement on a
range of PPS symptoms like strength and fatigue.
In explaining this improvement, Matheson theorized that "the paralyzed or
weakened muscles of the polio survivor are atrophying or atrophied as a result of the late
effects of polio. Because there is less muscle, there is less possibility to store L-carnitine.
When tissues become acidic (lactic acid from overuse) or there is desaturation of oxygen
(due to respiratory insufficiency or bad vascularization) the concentration of L-carnitine is
lower in the blood, tissues and cells.
The (over) use of muscles (whether atrophied or overused in compensation) has
been shown to cause a local fall in levels of L-carnitine. L-carnitine improves the
metabolism of oxygen, fat and glucose and inhibits the use (abuse) of muscle proteins for
energy production. The deregulation or decompensation of the metabolism of fatty acids,
glucose, oxygen, and energy (necessary for good muscle function) because of a lack of
L-carnitine could result in fatigue and weakness of the muscles."
Matheson wrote further, "More studies need to be done and the results published.
Research on L-carnitine is currently being done in Europe and Australia. A strict vegetarian
or "vegan" diet is very low in L-carnitine and could accelerate weakness ... while we are
waiting for the final answer, it would make sense for polio survivors to keep meat in
their diets."
Dosage and Usage
Since this drug hasn't been extensively tested on PPSers, there are no guidelines
for the treatment of PPS fatigue. We need to use common sense, as always. Lehmann's
subjects took 1000 mg / day. When first starting L-carnitine therapy, I'd advise starting with
a lower amount, perhaps 500 mg / day for a week until you get a feeling for how it is
affecting your body. Then you might work up to 1000 mg or even 1500mg.
We are all different. Some people take 1000 mg / day upon waking, on an empty
stomach, and have no problems. Others space L-carnitine over the day. If taken too late in
the day, some people can't sleep. Others can. Those who take L-carnitine in the morning
may find they are fading in the late afternoon and might want to take an afternoon booster.
You need to experiment. If you are taking Mestinon, keep taking it.
Prescription or OTC?
Since L-carnitine is sold both as a prescription drug as well as over-the-counter
(OTC) it would seem sensible to get it in prescription form if you can. With no controls on
the manufacture of OTC supplements, you might not get what you pay for. At 1000 mg/
day the OTC cost is about $50/month. MediCal pays for L-carnitine.
Prescription L-carnitine:
L-Carnitine is available as a prescription drug under the names: Carnitine, Carnitor,
L-Carnitine and Vitacarn. Carnitor, manufactured by Sigma Tau, seems to be the most
widely stocked brand. The generic name is levocarnitine.
Interactions:
There are no known interaction effects between L-carnitine and other drugs or
foods. The are no known diseases for which L-carnitine would be harmful. Note: If your
L-carnitine comes wrapped in plastic containers, leave them wrapped up until you use them.
Out in the air they absorb moisture and can crumple up.
"Supplement" L-carnitine:
Dozens of nutritional supplement companies make L-carnitine. Because of a lack
of quality oversight, there is great variability in purity in "supplement" carnitine.
Supplement companies make a distinction between "acetyl-l- and L-carnitine, saying that
the acetyl form is absorbed more easily. The drug companies don't make this distinction.
**Caution**:
There is a product sold in health food stores called vitamin Bt. It contains a
MIXTURE of D-carnitine and L-carnitine. This is NOT the same as L-carnitine and can
cause you problems. Be sure to take L-carnitine ONLY.
The Boomerang Feb/Mar/Apr 98
FOR MORE INFORMATION SEE LIFE EXTENSION MAGAZINE MAY 2000