Deficiencies Chronic Fatigue Syndrome & Fibromyalgia Patients Can Deal With: Studies show CFS and FM patients are likely to be low in several important vitamins, minerals or amino acids, but smart supplementation can help
By Patti Schmidt •
May 9, 2002
Our bodies need a steady supply of micronutrients — vitamins, minerals and essential amino acids— to operate properly. If you have a chronic illness like chronic fatigue syndrome or fibromyalgia, you’re especially prone to nutritional deficiencies; in fact, if you have any physical disability, you’re more likely to be deficient in vitamin C, for example.(1)
Most nutritionists would agree that even sub-clinical deficiencies — those at the bottom end of normal — can seriously effect your health.
“It’s likely that marginal deficiencies not only contribute to the clinical manifestations of [chronic fatigue] syndrome, but also are detrimental to the healing processes,” explains Melvin R. Werbach, M.D., a physician, psychiatrist and scientist from the from the UCLA School of Medicine who suggests CFS patients are deficient in many essential substances. Werbach’s monthly column on nutritional medicine appears in the International Journal of Alternative and Complementary Medicine in the UK and is reprinted in the U.S Townsend Letter for Doctors and Patients and the Australian Journal of Nutritional and Environmental Medicine.
Sometimes—not always— science can help you determine which supplements you need. Your physician can test how much iron is circulating in your blood; if you’re low, he can prescribe iron supplements. After you take them for awhile, he can measure how you’re doing with another blood test.
But it’s not always so simple. For example, doctors can test for magnesium levels in the blood, although most of the magnesium in your body is in bone and soft tissues.(2) If you have anemia, blood tests will show an obvious B-12 deficiency; but since some researchers believe even sub-clinical levels (those at the bottom of the normal range) can cause severe fatigue,(3) many CFS specialists recommend a trial of B-12 for most of their patients anyway.
The smart thing to do is enlist your physician and perhaps a nutritionist to help you figure out what your individual nutritional needs are and how best to meet them. It’s also helpful to have a pharmacist available who can tell you about any potential interactions between the herbs, supplements and prescription or over-the-counter medicines you take.
In your search for a balanced supplement regimen, take this advice from Jack Challem, The Nutrition Reporter™: “Vitamin supplements have their place, but they're additions to a sound diet, not replacements for it. Instead of trying to compensate for what you do wrong, strive for balance. Eat a wholesome diet as consistently as possible, and then add supplements.”
How do you know which supplements to take?
Those of us with CFS/FM usually have deficiencies as a result of those illnesses— one study done in 2000 by Werbach suggests we’re low in the B vitamins, vitamin C, magnesium, sodium, zinc, L-tryptophan, L-carnitine, coenzyme Q10, and essential fatty acids “primarily due to the illness process rather than to inadequate diets.”(4)
Werbach suggests identifying deficiencies with objective testing when possible, treating them effectively, and testing again after treatment to ensure the deficiencies get resolved. But when that’s impossible, he suggests supplementing CFS patients with these nutrients, along with a general high-potency vitamin/mineral supplement, at least for a trial period.(4)
Why? “Because it’s often difficult to rule out marginal deficiencies, because serious adverse reactions are rare, and because nutritional supplements offer a therapeutic benefit,” he said in his study.
In other words, it probably won’t hurt and it’s likely to help.
But that doesn’t mean you should take every new thing that’s advertised as the next big cure. Instead, look at the science that’s being done and try those things that clinical research says might be helpful.
Dr. Darryl M. See, M.D, a CFS specialist from California, suggests that PWCs use “only those supplements that have been tested in a laboratory.”
Most long-term chronic illness patients have learned to try something for a relatively short period of time, gauge its effectiveness, and stop taking it if it’s not showing a clear health benefit.
“Sometimes it takes a few tries to be sure if something works —the benefit may be small but worth it; and sometimes you only realize something was helping you in retrospect,” says Connie Bladeo, a long-term PWC from Arkansas whose current regimen includes B-12 shots, a multi-vitamin and mineral mix and a powdered amino acid drink.
Because a number of recent studies have shown oxidative stress to be a problem for CFS patients,(5) antioxidants are an important treatment option. One study specifically mentions glutathione, N-acetylcysteine, alpha-lipoic acid, oligomeric proanthocyanidins, ginkgo biloba, and vaccinium myrtillus (bilberry) to be beneficial.(5)
Other studies show we’re deficient in growth hormone and NADH. We’ll take a detailed look at many of these substances later, but first let’s talk about proper dosing and efficacy.
How much to take?
This is a real issue with many CFS/FM patients, as well as those with Irritable Bowel Syndrome and Multiple Chemical Sensitivity, because many of us are sensitive to many substances.
“A PWC never can tell how they'll react to a supplement, so trial and error are necessary,” said Dr. See.
In fact, it’s common for people with these chronic illnesses to be so sensitive that even a tiny amount of a drug, supplement or substance will effect us the way a full dose would effect a healthy person. This may mean that you should start out with lesser amounts.
Jeanne Redmon, a PWC for 30-plus years who now lives in Georgia, has become increasingly more sensitive to supplements during the course of her illness. The only thing she's been able to take consistently is Tylenol #3.
"I hope I never become unable to take it," said Jeanne.
While there are some physicians who believe in mega-dosing (taking much higher amounts than the US Recommended Dietary Allowances), most doctors recommend staying at or near the RDA unless research backs up the validity of taking more and you have a medical reason for taking higher amounts.
"Stay within recommended dosages, which are usually conservative, unless your doctor recommends otherwise," says Peter Degnan, M.D., an Associate Professor in Family and Community Medicine at Dartmouth Medical School, and a practicing integrated medicine specialist at Equinox Health & Healing in Portsmouth, NH. "As the number of users of nutritional supplements and herbal preparations rise, there are increasing reports of both efficacy and side effects. It’s important that people taking herbs and supplements work with experienced and knowledgeable practitioners, especially if there are complicating medical problems and prescription medication use."
Experts say if you’ve ever been sensitive to a drug, herb or supplement before, start out with 1/8 or 1/4 of a normal dose and work your way up to either the dose that your body can tolerate or the recommended amount.
Bobbie Sellers, a PWC and an ex-nurse from San Francisco, finds “with supplements it is best to start low and work up to dosage recommended. Even those that help can sometimes cause temporary physical problems unless the dosage is slowly increased,” she said.
How can you tell if it’s working?
Most long-term CFS/FM patients will tell you to begin only one new supplement at a time. If you start taking three things at once, how will you know which is helping or hurting you if you begin to show new symptoms?
Sellers will try something new for 3-6 months, if it doesn't cause an unpleasant reaction; she usually notices the effects of a new drug or supplement “when a symptom goes away or somehow my condition improves in a noticeable way.”
Write down when you begin taking something on a calendar or datebook; if you pay attention to symptoms, write those down, too. That way, you’ll be more likely to see patterns or trends. Ask your family and friends to help you determine if something is helping you — you may not be as aware of a benefit in cognition as those around you.
Vitamins are nutrients in foods that assist essential biochemical reactions within your body. There are 13 vitamins: Four fat-soluble—A, D, E, and K— which your body stores up to four for months; and nine water-soluble: C (ascorbic acid), and the B-complex vitamins: B1, B2, B3 B5, B6, B12, folic acid and biotin. Your body is able to store enough of these vitamins to last for several weeks.
B complex vitamins
The B complex vitamins are essential for the synthesis and repair of your genes. Vitamin B1 (thiamine) helps the nervous system operate properly, and with appetite and energy processes. Every cell of the body requires vitamin B1 to form ATP —the fuel the body needs.(6)
Vitamin B2 (riboflavin) helps the body's oxidation processes and is a key component in certain enzymes. It’s important in proper health of the skin and eyes and in energy production. Vitamin B-3 (niacin) is important to the proper functioning of the skin, the nervous system and mental performance. Vitamin B-5 (pantothenic acid) develops acetylcholine, a neurotransmitter that helps the adrenal glands operate.
Vitamin B-6 (pyridoxine) helps metabolize protein and fat and is needed to make red blood cells and in hemoglobin synthesis. B-12 (cobalamin) is a part of this group, but I talk about it separately below.
One study found preliminary evidence of reduced functional B vitamin levels, particularly pyridoxine (B-6), in CFS patients.(7) Women with premenstrual syndrome have also shown B-6 and magnesium deficiencies, and after taking supplements, many showed improvement in symptoms,(8) especially mood changes,(9) and depression, irritability and tiredness were reduced as well, with no side effects.(10,11)
In some studies Vitamin B6 supplements were useful in treating headache, chronic pain and depression, all of which are associated with serotonin deficiency. This makes sense, since B6 raises serotonin levels.(12)
US Recommended Dietary Allowance (RDA):
B-1: 1.5-2 milligrams per day.
B-2: 1.7 mg. per day.
B-3: 20 mg. per day.
B-5: 10 mg. per day.
B-6: 1.6 milligrams per day for women 19-50 years of age and 2 milligrams for men 19-50 years of age.
B-12: (see below)
Recommendation: The B vitamins work synergistically, so nutritionists suggest you take a B-complex vitamin or other multivitamin supplement which contains at least the US RDA of each of the B-complex vitamins. The amount of B vitamins found in many multivitamin supplements is more than adequate for most people. (Women with PMS may want to make sure they take extra magnesium with their B-complex vitamin just before their periods.)
Vitamin B12, also known as methylcobalamin, is important for producing new blood cells and some chemicals the nervous system needs to operate. B-12 is directly involved in synthesis of genetic material (DNA).
Reports,(13) including high-quality, double-blind ones, have shown that even people who aren’t deficient in B12 have more energy after vitamin B12 shots; so many physicians urge patients with fatigue to try a trial of B-12 to see of it helps.(14) Some discourage those without an obvious deficiency from taking B12 shots despite the evidence of efficacy.(15)
In one preliminary trial, 2,500-5,000 mcg of vitamin B12 given by injection every two to three days led to improvement in 50-80 percent of a group of People With CFIDS (PWCs); most improvement appeared after several weeks.(16) Oral or sublingual B12 supplements are unlikely to obtain the same results as injectable B12, because the body’s ability to absorb large amounts is relatively poor.(17)
One small preliminary study found that CFS and FM patients had increased levels of homocysteine in their cerebrospinal fluid, which the study authors believed to be due to low levels of B-12 in the fluid.(18) This study also found a correlation between homocysteine and fatigue levels. (Vitamin B12 acts with folic acid and vitamin B6 to control homocysteine levels. An excess of homocysteine may increase the risk of heart disease, stroke, and perhaps osteoporosis and Alzheimer’s disease.)
Dr. Britt Ahlrot-Westerlund from Sweden has had success treating CFS and FM with methylcobalamin. She uses it conjunction with folic acid, Vitamin B6 and antioxidants.
US RDA: 2 mcg. (2.2 for pregnant and lactating women in the first six months and 2.6 for the last six months)
Recommendation: Although shots are most effective, sublingual lozenges are also helpful, especially for those who can’t take shots. Take either a shot of 1000-5000 mcg. hydroxycobalamin (which some patients say stings) or cyanocobalamin, or one sublingual dose of 1000 mcg. B-12 per day.
Vitamin C mobilizes your body's self-defense mechanisms that assist your immune system in overcoming disease. It is also a powerful antioxidant required to produce collagen, the main supportive protein in cartilage, tendon and connective tissue. A potent antioxidant, Vitamin C is also credited with destroying or minimizing the effects of free radicals and nitrosamines related to carcinogens.
Although most animals manufacture their own vitamin C — on average, a 150-pound animal produces 4,000 to 13,000 mg. of vitamin C daily— human beings are among only a handful of animals that do not. (Researchers believe that a genetic accident occurred 25 millions years ago in one of our evolutionary ancestors, eliminating our ability to produce this vitamin.)
Studies show that people do respond very well to 1-6 grams daily of vitamin C: Their risk of heart disease and cancer decreases, they manage diabetes and other chronic, systemic illnesses better and they live longer. An interesting 1996 Japanese study showed that CFS patients improved after taking intravenous infusions of vitamin C and DHEA.(19) In Dr. Jesse Stoff’s study of 1,357 patients, which he treated using 1000 mg of vitamin C three times daily and Biomune OSF, an immune-modulating substance, he claimed 88 percent of those who had one detected viral infection improved within one year. Those with multiple infections improved at roughly half that rate.(20)
US RDA: 60 mg. per day.
Recommendation: Nutrition Reporter™ Jack Challem suggests humans should take about the same amount as gorillas, among our nearest biological relatives, who eat about 4,000 mg. of vitamin C daily in the wild. Take between 1-6 grams of Vitamin C daily. Break it up into even doses over the course of the day.
The two most well known antioxidants are vitamin C and E. Thousands of research reports have been published in scientific journals all over the world about their importance to health. Vitamin C is water soluble and is important in protecting the "aqueous" parts of our cells and tissues, while vitamin E is oil soluble and protects the "lipid" portions, especially cellular membranes. Prevents oxidation of proteins, fats and vitamin A, protects red blood cells.
A study in 1993 found that Vitamin E reduces the risk of stroke and heart attack by 57 percent and 52 percent. A survey of the members of the American Heart Association showed that over 62 percent of them are taking Vitamin E. With recent research showing that CFS patients may have a higher risk of heart disease,(21) Vitamin E is a potent antioxidant that should be in every PWC’s regimen.
Dr. Zoltan P. Rona, M.D., MSc believes that in low doses (under 800 I.U. per day), vitamin E may have little or no effect on auto-immune disease. In doses well above 2000 I.U., vitamin E weakens (down regulates) autoimmune disease. (She considers CFS/FM a probable autoimmune disease.)(22)
US RDA: 10 mg for males and 8 mg. for females (10 mg. for lactating women)
Recommendation: Take 400-800 IU of Vitamin E once each day.
Minerals are often overlooked in nutritional programs, but they shouldn’t be. In fact, without minerals, vitamins are useless. In their dissolved state, minerals— known as electrolytes or ionized minerals— create and maintain a healthy internal environment which allows other nutrients to do their jobs.
Minerals work with enzymes, hormones, vitamins and other vital transport substances, and participate in nerve transmission; muscle contraction; the maintenance of cell permeability, tissue rigidity and structure, and acid-base balance; blood formation; fluid regulation and movement across cell membranes; protein metabolism; and energy production.
Many minerals such as zinc, copper, selenium, and manganese are antioxidants, protecting against the damaging effects of free radicals. They scavenge these highly reactive radicals and change them into less harmful compounds, helping to prevent cancer and other degenerative diseases such as premature aging, heart and autoimmune and Alzheimer's diseases, arthritis and cataracts.
Magnesium deficiency can cause dysregulation of the immune and autonomic nervous systems, and clinical or experimental magnesium deficiency produces fatigue, depression, poor exercise tolerance,(23) and decreased resistance to psychological stress.(24)
One study estimated that 15-20 percent of the population have a magnesium deficit because most people manage to ingest only slightly more than 4 mg/kg day versus the Recommended Daily Allowance (RDA) of 6 mg/kg day.(25)
“The average daily need for magnesium for an adult is between 500-1000 mg. and a lot of people simply aren't taking in that much,” said Dr. Sidney MacDonald Baker, a scientist who researches the mineral.
For his patients, Baker recommends 1-2 teaspoons a day of a 25 percent solution of oral magnesium chloride, diluted in water or another liquid to make it palatable. After a good response, he sometimes switches patients to Searle’s Slow-Mag, the pill form of magnesium chloride.
Leo Galland, M.D., a former associate of Dr. Baker, recommends protecting your magnesium stores by avoiding what he calls “the magnesium wasters:”— saturated fats and soft drinks, especially those containing caffeine.
In a 1991 study carried out in the United Kingdom, investigators described the efficacy of intramuscular magnesium in people with CFS.(26) In a randomized, double-blind, placebo-controlled trial, 20 patients with CFS had lower red cell magnesium levels than 20 healthy control subjects matched for age, sex and social class.
At the November 1990 CFIDS Conference in Charlotte, N.C, Dr. Carol Jessop commented, "Low magnesium levels are common and can only be found using a test whereby you collect a 24-hour urine sample to test for magnesium. You then load the patient with 400 -500 mgs. of magnesium a day for three days. You take another magnesium urine test on the third day to see how much the body retains. If they retained greater than 50 percent, it is significant because magnesium is very important in muscle relaxation. Many of my fibromyalgia patients improved with the addition of magnesium to the diet.”
A study in Paris(27) found a link between magnesium deficiency, chronic fatigue syndrome and mitral valve prolapse (MVP), an abnormality in which the valve between the heart’s left atrium and ventricle malfunctions or is weakened and blood cannot circulate through the heart in the way it should. As many as 75 percent of those with fibromyalgia have MVP, say experts.
But only some MVP sufferers respond to magnesium treatment. Magnesium supplements may not always work because they’re alkaline and can neutralize the hydrochloric acid in the stomach. Nutritionist Adelle Davis is just one nutritionist who has noted that people with digestive problem shouldn’t take magnesium supplements for this reason.
Dr. Zoltan P. Rona, M.D., MSc, believes magnesium deficiency is quite a common finding in conditions like FMS despite a high magnesium intake through the diet or supplementation.(22) He attributes that to leaky gut syndrome, which creates a long list of mineral deficiencies, including magnesium, because the various carrier proteins present in the gastrointestinal tract that are needed to transport minerals from the intestine to the blood are damaged by the inflammation process in CFS/FM. He said if the carrier protein for magnesium is damaged, magnesium deficiency develops as a result of malabsorption. Muscle pain and spasms can occur as a result.
Recommendation: Magnesium 250 mg 3 times daily has produced very good results in fibromyalgia.(28,29) It may be combined with malic acid, 1200 - 2400 mg daily. Dr. Jacob Teitelbaum's treatment protocol for CFS/FM calls for 2 tablets of Pro Energy (a magnesium/malic acid supplement) 3 times a day for 8 months, then 2 tablets a day (less if diarrhea is a problem). He recommends starting with 1-2 a day and slowly working your way up as able without getting uncomfortable diarrhea. (He points out that you can take up to 10 a day for constipation and that taking it with food may lessen diarrhea.) Pro Energy is available from www.immunesupport.com or dial 800-366-6056.
Sodium helps regulate blood pressure and water balance in the body. In people who are sensitive to it, sodium can elevate blood pressure.
Many CFS specialists tell their patients with neurally mediated hypotension (NMH) to eat extra salt and drink lots of water (two to three quarts a day ) as a way to naturally increase blood volume. NMH is an autonomic system dysfunction in which blood doesn’t pump up to the brain when you stand; instead it pools in your legs, denying your brain the blood, and hence, the oxygen it needs to operate normally.
People with severe NMH can faint when standing too quickly and often find that taking hot showers or baths makes them feel woozy. If you have these symptoms, have your doctor schedule you for a tilt table test, which is how doctors determine if you have NMH or any other orthostatic intolerances (OI).
In several controlled studies, CFS patients had a higher rate of OI than healthy controls.(30,31,32,33,34) In one preliminary study, most of those with NMH were helped by additional salt intake (saline).(35)
Nancy Klimas, MD, a Professor of Medicine at the University of Miami VA
Medical Center who conducts research on immunologic abnormalities in CFS, pointed out at a recent conference that if the patient has a positive tilt-table test and increasing salt and water makes her feel better for a few weeks, the kidneys become efficient at getting rid of the extra sodium. When that happens, Klimas prescribes fludrocortisone (Florinef). Another route is to prescribe alpha1-agonists, such as pseudoephedrine. She said the most selective alpha1-agonist is Midodrine.
US RDA: Experts recommend that healthy people not take more than 2400 milligrams a day.
Recommendation: If you have NMH, buy buffered salt tablets available at any pharmacy and follow your physician’s directions in taking them. (Dosage instructions are highly dependent on your individual health concerns.) If they don’t help, you may need a prescription medication. Many with NMH find their symptoms get worse in summer or other hot conditions. Don’t forget to drink lots of water — taking extra salt without extra water isn’t nearly as helpful.
Next to iron, zinc is the second most abundant trace mineral in the body. It’s important in the activity of enzymes needed for cell division, growth and repair (wound healing, for example), as well as proper functioning of the immune system. Zinc also plays a role in the acuity of taste and smell, the metabolism of carbohydrates, and the replication on DNA.
In a conversation between physician and author William G. Crook, M.D., (The Yeast Connection) and Dr. Stephen Davies, editor of the Journal of Nutrition in Medicine, in August 1991 that appears on Dr. Crook’s website, Dr. Davies noted that "CFS patients are nearly always deficient in magnesium. Our research studies show that they're frequently deficient in zinc and copper, too.”
At the November 1990 CFIDS Conference held in Charlotte, N.C., Dr. Carol Jessop commented, "Low zinc levels are common, although only 32 percent of patients show this on the blood tests.”
She pointed out that blood tests are not as accurate as sweat tests, which are hard to do in the office.
“But many patients either have poor wound healing or leukonychia (white spots on the fingernails) which are signs of zinc deficiency,” she said. “Both of these trace minerals are absorbed in the gut and, I think, are being malabsorbed by our patients."
Dr. Zoltan P. Rona, M.D., MSc, believes CFS/FM can cause zinc deficiency due to malabsorption, which can result in hair loss or baldness as occurs in alopecia areata, another autoimmune disease.(22)
US RDA: 15 mg. For males, 12 for females. (lactating women should take 19 mgs. In the 1st six months and 16 mgs. in the second six months)
Recommendation: Take a 15-25 mg. zinc supplement every day.
The human body, minus water, is 75 percent amino acids. All of the neurotransmitters (proteins) but one are composed of amino acids; and 95 percent of hormones are amino acids. Amino acids are key to every human bodily function with every chemical reaction that occurs.
"Amino acids are incredibly important," said Dr. Darryl M. See, M.D, a CFS specialist from California. “No PWC absorbs amino acids well.”
A potent antioxidant, glutathione eliminates free radicals, detoxifies and removes heavy metals like lead, mercury and cadmium from the body, recycles oxidized vitamin C back to useful vitamin C, and protects cells from damage from oxidative stress.
A healthy person produces several grams of glutathione daily, but
Dr. Patricia Salvato of Houston, Texas, has found that CFS patients are often deficient. It may help to take magnesium and glutathione together: in a high-quality study in Belgium, patients who were magnesium deficient (47 percent) had significantly lower total antioxidant capacity in their blood. Magnesium deficient patients whose magnesium stores didn’t improve even after oral supplementation with 10 mg magnesium per day also had persistently lower blood glutathione levels.(40)
Recommendation: Have your physician do a whole blood glutathione or glutathione peroxidase test. If they’re low, Dr. Salvato reports that oral glutathione does not enter the cells even taken in massive doses and proposes intramuscular injections instead. Some CFS patients have taken 100 mg. glutathione combined with 1 mg. of ATP injections twice weekly with good results. (In a study of 276 CFIDS patients —218 women and 58 men— who received weekly injections of glutathione/ATP injections, 82 percent (226 patients) reported less fatigue and 196 experienced improvement in memory and concentration, while 171 experienced lower levels of pain. A few patients had heart palpitations thought to have come from the ATP.)
Get the compounded injections from Family Pharmacy (888-245-5000) or College Pharmacy (800-888-9358). You’ll need a prescription. If you don’t want to take the shots, you could try 500 mg. of reduced glutathione once or twice daily (Positive Health News, Spring 1998 recommends Jarrow Formulas brand.)
Dr. Jacob Teitelbaum’s protocol calls for 500 mg. of NAC (N-Acetyl -L -Cysteine) each day for 9 months, then as needed; or 200-250 mg. glutathione a day. (He considers the glutathione better than NAC but realizes it’s more expensive.) (24)
NADH (nicotinamide adenine dinucleotide) is an enzyme facilitator that occurs in all living cells and plays a central role in the body's energy-producing capacity. NADH also helps make ATP, the energy source the body uses for fuel.
In a small randomized, double-blind, placebo-controlled crossover study, PWCs received 10 mg. of NADH or a placebo every day for four weeks; 31 percent of the PWCs who got the NADH reported improvements in fatigue, decreases in other symptoms, and improved overall quality of life, compared with only 8 percent of those who received a placebo.(36) The statistical analysis of this study was subsequently challenged, however.(37)
NADH has also been shown to reduce the effects of jet lag on cognitive performance and sleepiness.(38)
Recommendation: Take 10 mg. NADH every morning. Many PWCs use the Enada brand, because that what’s was used in the research study.
The anterior pituitary gland produces a hormone called somatotropin, known as "human growth hormone" (HGH), which your body uses by converting it into an insulin-like growth factor (IGF-1) for tissue, bone, muscle generation and generally maintaining healthy bodily functions. Your pituitary gland released HGH most heavily in your teens, but as you age, however, production of HGH decreases.
It’s interesting to note how similar CFS and acquired growth deficiency symptoms are. GH deficient patients’ muscle mass and muscle strength are diminished, with a resulting striking decline in exercise capacity. They also suffer from lack of concentration and memory impairment. Self-rating questionnaires consistently demonstrate reduced vitality, fatigue, social isolation and depression, but they’re unsure whether that’s due to GH deficiency or to another factor associated with hypopituitarism. Most of these symptoms improve after 6 months of low-dose growth hormone therapy.(39)
Michael G. Samuels, DO, of Dallas, said growth hormone “has made treating those with CFIDS and some of my other patients much easier because now we can help the person's body regain and recapture some years.”
ME patients with low growth hormone levels who took growth hormone showed no improvement in the quality of life in one study.(40) In one small preliminary study of just 14 patients, Cheney and Keever reported that of the 14 patients with CFS who were treated with a growth hormone secretagogue (to raise IGF-1 levels), 57 percent noted a beneficial response.(41) Another study by the same group concluded that it isn’t clear whether the tendency for impaired nighttime growth hormone secretion in patients with CFS is a cause or an effect of the condition.(42)
Despite anecdotal reports of improvement with bovine (from cows) growth hormone in selected CFS patients with low GH levels, at the AACFS Conference in Seattle, Wash., in January 2001, participants in a panel discussion agreed that treatment remains controversial because of side effects.
A study of 51 women with fibromyalgia and low levels of insulin-like growth factor was split into two groups. One was given injections of growth hormone (up to 250 ng/mL) the other a placebo. Twenty-three patients in the treatment group, 11 of whom fulfilled criteria for CFS, showed a significant improvement over the placebo group at 9 months on measures of symptoms and disability.(43) (There was often a delay of 6 months before improvements were noted.) After discontinuing treatment, there was a worsening of symptoms. Adverse reactions included carpal tunnel symptoms.
Recommendation: If you have fibromyalgia, it might be worth trying, but otherwise, wait for more conclusive research.
Dehydroepiandrosterone, commonly known as DHEA, is a hormone now available as a supplement. It influences cognition, along with metals such as aluminum, iron, and zinc. DHEA should not be used without the supervision of a healthcare professional.
In one study, DHEA levels were found to be low in PWCs.(44) Another study found that while DHEA levels were normal in a group of CFS patients, they were unable to increase their DHEA level in response to hormonal stimulation.(45) Whether supplementation with DHEA might help CFS patients is yet to be studied.
Another study found that women with CFS showed significantly lower iron and DHEA levels in the blood than controls. Total cholesterol level, on the other hand, was significantly increased, and significantly negatively correlated with dehydroepiandrosterone sulphate.(46)
Recommendation: Have your doctor test your iron and DHEA levels and supplement if necessary. Since CFS patients may have a higher risk of developing cardiovascular disease, have your cholesterol levels checked regularly, especially if you’re over 40.
Carnitine is essential for mitochondrial energy production. Without enough carnitine, a person’s cells can’t break down fatty acids or remove toxic wastes.
A 1994 Japanese study done at Osaka University Graduate School of Medicine showed CFS patients had an acylcarnitine deficiency.(47) A year later, a study done by AV Plioplys of Mercy Hospital and Medical Center in Chicago found CFS patients had significantly lower serum total carnitine, free carnitine and acylcarnitine levels, and found a correlation between levels of total and free carnitine and symptoms. (The higher the carnitine levels, the better people felt.) (48)
A 1998 Japanese study found low levels of acylcarnitine in the blood of CFS and Hepatitis C patients, but not in some other diseases;(49) a study by the same team a year later found lower levels of serum acylcarnitine in CFS patients but not in a majority of patients with fibromyalgia.(50) A Dutch study done by a team at the University of Nijmegen in the Netherlands in 2000 which measured the levels of total carnitine, free carnitine, acylcarnitine and carnitine esters in 25 female CFS patients and 25 healthy, matched controls found normal levels in PWCs, however.(51) One study found oral L-carnitine supplementation improved many CFS symptoms after just eight weeks of treatment.(52)
Medical studies and doctors treating fibromyalgia have found that supplements which cause a decrease in glutamate, or protect against its effects, have a positive effect. Some that have been found to be effective include vitamin B6, B12, L-carnitine, choline, ginseng, Ginkgo biloba, vitamins C and E, nicotine, and omega 3 fatty acids (fish and flaxseed oil-GLA,EPA,DHA).(53)
Recommendation: If you can get a prescription from your doctor for Carnitor, you’ll know exactly what you’re getting in each pill: 330 grams of levocarnitine. Take 3 pills twice a day. Otherwise, take a commercial brand with roughly the same amount.
Drug-induced nutritional deficiencies
Don’t forget that both prescription and over-the-counter medications can deplete the body of vitamins and minerals. Susceptibility to these drug-induced nutritional deficiencies depends on numerous things, including your disease state(s), what other drugs you’re taking, how much of those drugs you’re taking, your diet, and whether you use alcohol, street drugs, or nutritional supplements, to name just a few.
For a complete list of drug-induced nutritional deficiencies, go to
FOR MORE INFORMATION
I found “10 Vitamin Truths: The Vitamin Gospel According to The Nutrition Reporter™ Jack Challem some of the best advice on vitamins. Read it at http://www.nutritionreporter.com/10_Vitamin_Truths.html.
The Life Extension website mentions a complementary physician, Dr. Ed McDonagh, who has an extensive protocol to diagnose and treat both
fibromyalgia and CFS. Go to http://www.lef.org/protocols/prtcl-050.shtml
A great website for learning about lab tests is http://www.labtestsonline.org. It’s reviewed by medical professionals and run by a consortium of medical diagnostic companies and professional societies, including the American Association for Clinical Chemistry. With pop-up glossaries and easy-to-understand language, it’s also helpful for gathering knowledge so you can read and understand your test results yourself.
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3. Ellis FR, Nasser S. A pilot study of vitamin B12 in the treatment of tiredness. Br J Nutr 1973;30:277-83.
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53. Windham B. CFS, FM, Scleroderma and Lupus: The Mercury Connection from the www.immunesupport.com newsletter, available at http://www.ImmuneSupport.com/library/showarticle.cfm/id/3305