From a Post to the Post-Polio-Med Email List With Permission From
Henry Holland, M.D.


[ Comments by Dr. Holland ] ~ [ L-Carnitine Treatment of PPS Fatigue ]
[ What is L-carnitine? ] ~ [ Where do we get the L-carnitine we need? ]
[ What are the established uses for L-Carnitine? ] ~ [ Dosage and Usage ]
[ Acetyl-carnitine vs L-Carnitine ] ~ [ Prescription or OTC? ]
[ Prescription Carnitine ] ~ [ OTC Carnitine ] ~ [ D-carnitine ]
[ L-carnitine and Coenzyme Q10 ] ~ [ Addendum: Dr. Mavis J. Matheson ]

Date: Wed, 25 Nov 1998 17:05:44 EST
From: Henry Holland Henry4FDR@AOL.COM
Subject: L-carnitine and PPS fatigue

In an effort to provide more information regarding L-carnitine and its use in the management of the fatigue of PPS, the article below is offered for your review. I have used Carnitor (L-carnitine) since early this year. I feel that it has helped me. It is not a cure or a replacement for restful sleep, intermittent down time throughout the day or the pacing of energy. I have contacted Sigma Tau Pharmaceuticals, the manufacturer of Carnitor, in an effort to encourage them to do a double blind, placebo-controlled study on Carnitor in the treatment of PPS fatigue. To date, I have not received a response. Judith Hughes of California gathered and organized the information below. Read this information and make your own informed decision.

Henry Holland
Central Virginia Post-Polio Support Group

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The most basic and necessary treatment for the body/mind fatigue of post-polio syndrome is adequate rest (which might even require the help of mechanical ventilation) and the use of electro-mechanical supports such as braces, crutches and wheelchairs as needed.

What else can be done? We know the polio virus killed nerve cells, both in the body and in the brain. For almost a decade neurologists treating PPS have been prescribing drugs developed for other neuromuscular conditions. Examples are Mestinon and Amantadine, used otherwise to treat myasthenia gravis and Parkinson's disease respectively.

Another approach to treating PPS is to look beyond obvious paralysis and nerve cell damage and consider problems which develop secondarily as a result of polio. One way a person with significant polio damage differs from the norm is that he/she doesn't have as much muscle tissue. By the time one has to sit down most of the time, a great proportion of one's body's muscle mass is gone -- even if the rest of the body still functions. In a normal body, the legs and buttocks carry the weight of the body and have the biggest and strongest muscles.

Does a shortage of muscle itself have any effect on the body? Yes, It limits the amount of L-carnitine stored in the body. Thus, when needed for physical and mental functioning, it is not available. Our remaining muscles, which we push to the outer limits of their capacity, do not have the normal physiological support needed to keep them healthy.

In September 1994, M. J. Matheson, MD, wrote about L-carnitine (levocarnitine) and post-polio syndrome (Polio Network News, and posted later on the Internet). She described the 1993 study in Switzerland done by Dr. Thomas Lehmann who treated 27 persons with post-polio syndrome with 1000 (-3000) 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:

"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."

Addendum: On Dr. Mavis J. Matheson
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What is L-carnitine?
L-carnitine is an amino acid derivative which plays a critical role in fatty acid oxidation, the chemical process by which our bodies and minds are energized. In heart and skeletal muscle, the primary fuel source is mitochondrial fatty acid oxidation. L-carnitine has two functions. It is a carrier molecule that transports fatty acids into cellular mitochondria for their conversion into cellular energy, and it also moves potentially toxic byproduct molecules out of the mitrochrondria after which they are excreted in urine. L-carnitine is known to be important in nerve functioning and in protecting nerves from injury, in part by enhancing the activity of nerve growth factor. Normal muscle cells have a great concentration of mitochondria required to power muscle cell contractions.
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Where do we get the L-carnitine we need?
75% of our bodies' stores of L-carnitine come from dietary red meat and dairy products. We also, in our kidneys and liver, synthesize carnitine from methionon and glutamine (with the aid of vitamin B6, vitamin C, niacin, pantothenic acid and iron). Normal people with an adequate diet do not need to take L-carnitine as a supplement. (Note: infant formulas are fortified with carnitine.) Despite promotion by supplement companies, "carnitine-loading", in which L-carnitine is used by athletes as an ergogenic aid, has not been proven to result in improved endurance performance. There is no known L-carnitine overdosing; excess L-carnitine is excreted from the body.
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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- carnitine; these result in weakness of the shoulders, hips, face and neck muscles and the inability to sustain moderate exercise without kidney damage. L-carnitine metabolism is abnormal in patients with end-stage renal disease; both the process of dialysis and the dietary changes decrease L-carnitine intake. L-carnitine is being used to treat these conditions. Additionally, L- carnitine is being used experimentally for some conditions which include angina, peripheral vascular disease, dyslipidemia, and diabetes. L-carnitine treatment initiated early after acute myocardial infarction and continued for 12 months can reduce the dilation of the left ventricle that normally follows an MI.

There is considerable, ongoing research into L-carnitine's many functions in the body and brain. Carnitine easily passes through the blood brain barrier (BBB). Researchers are beginning to study the possibility that L-Carnitine might be useful in helping drugs get through the BBB. Interesting also is the fact that L-carnitine is also a precursor for acetylcholine, the neurotransmitter whose breakdown is inhibited by Mestinon.

While there have been no L-carnitine studies done on post-polio in the United States, there are studies demonstrating L-carnitine's effectiveness in reducing fatigue in patients suffering from chronic fatigue syndrome (CFS). Like PPSers, the level of L-carnitine in CFSers is low. L-carnitine studies have also been done on early Alzheimer's patients and significant improvements in behavior and attention have been demonstrated.

To get an idea about the scope of the serious research being done on L- carnitine, go to "PubMed" and do a search on "carnitine". PubMed is the Medline search service provided by the National Library of Medicine. The site address is: http://www.ncbi.nlm.nih.gov/PubMed/.
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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. There are reports about people in Australia who take twice that amount. When first starting L-carnitine therapy, it would be wise to begin with a moderate 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 1500. 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. Other's 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.
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Acetyl-carnitine vs L-Carnitine
Acetyl-carnitine is chemically related to L-carnitine but is not the same. The body converts L-carnitine into acetyl-carnitine as needed. Apparently, there is a metabolic dysfunction which impairs the transformation from L-carnitine to acetyl-carnitine. Bought OTC, acetyl-carnitine is more expensive, said to be "more easily used" by the body.
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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 less controls on the manufacture of OTC supplements, you might not get what you pay for and, if you don't, you won't get the benefit pure L- carnitine would provide. Medicaid (at least in California) pays for prescription L-carnitine.
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Prescription 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. There are no known interaction effects between L-carnitine and other drugs or foods. There are no known diseases for which L-carnitine is known to 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.
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OTC Carnitine
Dozens of nutritional supplement companies make L-carnitine. Because of a lack of quality oversight, there is great variability in purity in "supplement" L- carnitine. Supplement companies make a distinction between "acetyl-l- carnitine" and L-carnitine, saying that the acetyl form is absorbed more easily.
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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 problems. Be sure to take L-carnitine only.
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Note: L-carnitine and Coenzyme Q10
In a study reported in Molecular Aspects of Medicine, 1997, the effects of 100 mg / day of Q10 on skeletal muscle energy metabolism in middle-aged post polios was studied. The results suggest Q10 supplementation improves muscle energy metabolism in post-polio individuals. Q10 is a nutrient that works with L-carnitine to facilitate mitochondria energy production. L-carnitine and Q10 complement each other metabolically and should be taken together.
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Addendum: Dr. Mavis J. Matheson
Dr. Holland adds the following:
...Dr. Mavis J. Matheson is a physician with PPS. She is the doctor mentioned in the L-carnitine article. She lives in Regiina, Saskatchewan. Camada. She had to give up her medical practice in 1993. In the November/December issue of the Florida East Coast Post-Polio Support Group newsletter, there is an article authored by Dr. Matheson on PPS as well as a short article entitled "My Story." She writes:

"Over a period of about 17 months, about three years ago, I went jogging 2 kilometers daily to needing my scooter to get around the house. Over the past year, I have regained some strength and emotionally, I am in a whole different world. I'm going to be OK! I am a physician with PPS. I gave up my practice of medicine in 1993. I now write articles and read much current medical literature."
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