Lark Lands on the 7 Deadly Sins for those wishing to live long and well with HIV

We’re re-printing below an excerpt from a piece Lark Lands wrote several years ago, because it still has much solid advice for people with HIV/AIDS. A medical journalist and longtime AIDS treatment educator and advocate, Lark was a pioneer in focusing attention on an integrated, “holistic” approach to HIV disease. She served as science editor for POZ magazine, and has also been a contributor to Canadian AIDS Treatment Information Exchange (CATIE) publications.

The title of this piece is “The 7 Deadly Sins for those wishing to live long and well with HIV.” This excerpt has to do with nutrient needs (but see also the other sections, including those on gastrointestinal health and maintaining muscle mass.)


Sin #2: Ignoring the nutrient needs that both the disease and the medicines create.

Whether or not you’re taking antiretrovirals, your body is fighting an ongoing battle. It needs higher levels of nutrients to do that. You can’t power the body’s immune response or build replacement immune cells without the nutrient building blocks. You need to consume:

–good levels of protein
–good levels of unrefined complex carbohydrates (brown rice instead of white; whole-grain breads, crackers, cookies and pasta instead of those made with nutrient-poor white flour)
lots of fresh fruits and vegetables
–moderate amounts of good fats every day (monounsaturated fats like olive oil are best; avoid the partially hydrogenated oils found in margarines, shortenings and many baked goods and snack foods. Read the labels!)
–lots of healthful liquids (water, juices, teas — not chemical- and sugar-loaded junk drinks)

That’s how you power your body to keep up the immense battle against HIV. Numerous studies have shown that disease progression is faster in people with low levels of nutrients, so remember, nutrients are one of your best weapons against HIV. (Always make sure that the food you eat and the water you drink is safe.)

Nutrients can also help prevent or reduce the side effects and toxicity of medications while improving their absorption. You can help your body handle all the pills you’re taking by giving it good nutrition, lots of healthful fluids, appropriate supplementation and plenty of liver and kidney support.

With liver-toxic drugs: Consider L-carnitine (or L-acetyl-carnitine), and the nutrients that maintain glutathione levels in the liver — alpha-lipoic acid, vitamin C, vitamin E, N-acetyl-cysteine (NAC) and L-glutamine. Depending on drug interactions (check!), silymarin (milk thistle extract) may also be useful.

To help with kidney stress: Drink lots of water throughout the day. Aim for a large glass every hour or so, especially each time you pop your pills.

Don’t forget that nutrient supplementation can often help reduce or possibly eliminate HIV-related symptoms such as fatigue, skin problems, diarrhea and gas, memory loss, neuropathy and more. In order to manage a difficult disease long-term, you need to feel good!

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CoQ 10 and HIV-medication related changes in lipid levels: excerpt from the Canadian AIDS Treatment Information Exchange (CATIE) info sheet

Below is an excerpt from the Canadian AIDS Treatment Information Exchange (CATIE) information sheet on the use of CoQ 10 by people with HIV/AIDS. This excerpt focuses particularly on changes in lipid profiles that may accompany HIV medications, and the strategy for addressing these potentially damaging changes:



One common side effect of highly active antiretroviral therapy (HAART) is increased levels of fatty substances or lipids in the blood. Examples of the lipid changes that can occur in HAART users include the following:
increased levels of triglycerides
increased levels of cholesterol
increased levels of LDL (bad cholesterol)
decreased levels of HDL (high-density lipoprotein – good cholesterol)

These lipid changes increase the risk of cardiovascular disease in HAART users. To decrease this risk, doctors may encourage people with HIV/AIDS (PHAs) to make changes to their diet and engage in a programme of regular aerobic exercise. If these steps don’t work, then lipid-lowering agents — commonly called statins — can be prescribed. These drugs work by lowering the levels of triglycerides and LDL while raising HDL. Thus statins can greatly reduce, but do not eliminate, the risk of developing cardiovascular disease. Examples of statins include the following:

Crestor (rosuvastatin)
Lescol (fluvastatin)
Lipitor (atorvastatin)
NK-104 (pitavastatin)
Mevacor (lovastatin)
Pravachol (pravastatin)
Zocor (simvastatin)

These drugs exert their lipid-lowering effect by reducing the body’s ability to produce cholesterol. Unfortunately, Q10 production is also affected by statins. Not surprisingly, the body’s production of Q10 can fall between 25% and 40% with the use of statins. Reduced production of Q10 means that there is less of this important antioxidant to protect cells from free radicals. It is possible that with less Q10 available, there may be an increased risk of developing certain side effects associated with use of statins, including the following:

muscle inflammation, pain and weakness
fatigue
liver damage

Some PHAs who use statins also take supplements of Q10 and vitamin E.

See also NYBC’s entries on Coq10 100mg and CoQ10 30mg . The NYBC information includes reference to a 2007 study in the American Journal of Cardiology on COQ 10 and the relief of myopathic symptoms in patients treated with statins. Please also note cautions on using CoQ 10 with the blood-thinning agent coumadin.

Acetyl-l-carnitine and L-carnitine: Canadian AIDS Treatment Information Exchange Fact Sheet

Acetyl-l-carnitine (often shortened to acetylcarnitine) and L-Carnitine (aka carnitine) are among the most heavily investigated of dietary supplements for their applications to HIV/AIDS. In particular, acetylcarnitine has been studied for more than a decade for HIV-associated neuropathy, especially by Michael Youle in the UK (see other entries under “acetylcarnitine, this Blog). Acetylcarnitine is also a key component in the K-Pax (and NYBC’s low-cost K-pax equivalent, the MAC Pack). Meanwhile, carnitine is also much used by people with HIV, and the prescription form, Carnitor, is made available through some state-funded formularies.

For a very good overview on acetycarnitine and carnitine research and application to HIV/AIDS, see

Acetyl-l-carnitine and L-carnitine: Canadian AIDS Treatment Information Exchange Fact Sheet

A brief excerpt:

Why do PHAs use this supplement?
Carnitine has many potential uses, including the following:

1. helping to heal damaged nerves—peripheral neuropathy (PN)
2. helping to decrease levels of lactic acid in the blood
3. reducing higher-than-normal levels of cholesterol and/or triglycerides
4. helping to maintain muscle growth

1. To manage peripheral neuropathy (nerve damage causing tingling, numbness or burning in the hands, feet and legs)
Levels of carnitine in the blood are sometimes lower in PHAs with peripheral neuropathy, particularly under the following conditions:

• damage from viral infections such as HIV and CMV (cytomegalovirus)
• the use of “d” drugs such as d4T, ddI and ddC
• the use of some anti-cancer drugs and antibiotics
• alcohol abuse
• diabetes

What the medications in the above list have in common is that they can damage the energy-producing parts of nerve cells—the mitochondria. Injured mitochondria cannot supply sufficient energy and nerves begin to malfunction and can die. Nerves in the feet, legs and hands, particularly in the skin covering those body parts, appear to be especially susceptible to PN. Some researchers have noticed that PHAs with PN can develop abnormal sweating, suggesting that nerves in sweat glands can also be affected.

One formulation of carnitine, acetyl-L-carnitine (ALCAR), may play a role in the management of PN. This compound helps mitochondria function and also appears to enhance the effect of a chemical that helps nerves grow—nerve growth factor.

Researchers in England conducted an extensive study of ALCAR in PHAs with peripheral neuropathy. Their findings revealed that most PHAs showed some degree of recovery from nerve damage after taking ALCAR 1.5 grams twice daily for up to 2¾ years.

See also the NYBC entry on acetylcarnitine. Like its predecessor DAAIR, NYBC has this key supplement manufactured by pharmaceutical-grade producer Montiff; this allows for considerable cost savings for co-op buyers compared to commercially available products.

Can supplements reduce cancer risk? – Price and pill count drop for NYBC’s low-cost K-pax alternative, the MAC Pack – A healthy response to a recent and sobering New York Times article, “AIDS Patients Face Downside of Living Longer”

These and other stories can be found in the latest issue of the New York Buyers’ Club newsletter, THE SUPPLEMENT, now available online at

http://www.newyorkbuyersclub.org/supplement/index.html

On this page, you can also browse through SUPPLEMENT issues from the past three years, which contain stories on topics ranging from the latest thinking on supplements and cholesterol control, to US practitioners of Traditional Chinese Medicine and their formulas for liver health.

You can also visit www.newyorkbuyersclub.org for NYBC’s full set of information resources.

Taking Vitamins and Minerals When You’re HIV+ Some Advice from the Canadians

If you’re HIV+ and looking for a good introduction to the vitamins, minerals, and supplements that can help you stay healthy, we often recommend an online guide produced by the Canadian AIDS Treatment Information Exchange (CATIE), A Practical Guide to Nutrition for People Living with HIV.  CATIE is a national not-for-profit that’s been providing excellent information services to Canadians living with HIV/AIDS for many years. The Practical Guide is reviewed by a panel of healthcare professionals, and also includes information on such dietary supplements as alpha lipoic acid, NAC, Glutamine, CoQ10, probiotics, and carnitine/acetylcarnitine.  This version of the guide was released in October, 2007.

Here’s the excerpt on Multivitamins, Vitamins and Minerals:


Consider taking a multivitamin-mineral each day.


Several studies have shown that vitamin and mineral supplements can have many benefits in people living with HIV. Taking a multivitamin every day is an important part of a nutritional health plan. Check out Appendix E for a list of studies looking at the effect of micronutrient supplements in people with HIV/AIDS.
B vitamins may help slow disease progression in people with HIV. They are also important for healthy mitochondria, the power-producing structures in cells, and may help decrease the impact of mitochondrial toxicity. B vitamins are depleted quickly in times of stress, fever or infection, as well as with high consumption of alcohol. Keep in mind that the RDA is very low and taking a total of 50 mg of B1, B2 and B3 will more than cover B-vitamin needs. Check the multivitamin you take; if it has 30 to 50 mg of these vitamins, you don’t have to take a B-complex supplement in addition to the multivitamin.

Levels of vitamin B12 in the blood may be low in people with HIV. It can also be low in people over the age of 50 years. B12 deficiency is associated with an increased risk of peripheral neuropathy, decreased ability to think clearly, and a form of anemia. People with low B12 levels usually feel extremely tired and have low energy. This deficiency is also linked with HIV disease progression and death. Ask your doctor to check your blood levels. If they’re low, ask about B12 injections to get them back into the ideal range.

If you get B12 shots and your vision is getting worse, mention it to your doctor, especially if you are a smoker. Some forms of injectable B12 can damage your eyes if you have a rare genetic condition called Lerber’s hereditary optic atrophy.

Vitamin C is one of the most important antioxidants. It is very effective at cleaning up molecules that damage cells and tissues (see “Antioxidants and HIV,” this chapter). Vitamin C has been studied for cancer prevention and for effects on immunity, heart disease, cataracts and a range of other conditions. Although vitamin C cannot cure the common cold, supplements of 1,000 mg per day have been found to decrease the duration and severity of symptoms.

In people with HIV, there is some evidence that vitamin C can inhibit replication of the virus in test-tube experiments, but it is unclear what this means in the human body. The most important benefit for people with HIV is the widespread antioxidant action of vitamin C. The daily experimental high dose is between 500 mg and 2,000 mg, the upper tolerable limit.

Calcium – see under “Bone health,” below.

Vitamin D is emerging as a very important nutrient, with more diverse functions than just its traditional role in calcium metabolism. Mounting evidence suggests that 1,000 IU per day should be the recommended daily intake.

Vitamin D is found in some foods, but these sources generally do not provide enough vitamin D on a daily basis. Also, people who live in northern climates (like Canada) probably do not get enough sun exposure to make adequate vitamin D. And the use of sunscreen, which is highly recommended to prevent skin cancer, blocks the skin’s ability to make vitamin D.

For people with HIV, vitamin D supplements are a sure way to get the recommended daily allowance. Vitamin D is found in multivitamins and calcium supplements as well as individual vitamin D pills. Look for vitamin D3; it is the active form of the vitamin. Be sure to add up all the vitamin D from different supplements to be sure you are not getting too much.

Vitamin E has been used as an antioxidant, typically at doses of 400 IU per day. However, studies have found that people who take more than 200 IU per day may be at higher risk of developing heart disease. Until this is fully studied, it may be a good idea to reduce vitamin E supplements to 200 IU unless your doctor suggests you take more.

Vitamin E deficiency is associated with faster HIV disease progression. People with poor fat absorption or malnutrition are more at risk of being deficient in vitamin E. Use supplements from natural sources and those with “mixed tocopherols” for better effect.

Iron supplements to treat iron-deficiency anemia (low levels of red blood cells) should only be taken if prescribed by your doctor. Iron-deficiency anemia is diagnosed by having a low hemoglobin level in the blood. This can be confusing in someone on HAART because some anti-HIV drugs, especially AZT, can cause low hemoglobin levels. There are other blood tests that can help determine whether there really is an iron deficiency. The important point is to not take high doses of iron unless they are prescribed. Iron is a pro-oxidant (the opposite of an antioxidant), which means it can damage different tissues in the body.

Zinc is a critical mineral for the immune system; a deficiency can cause severe immune suppression. People with chronic diarrhea, new immigrants from refugee camps and malnourished people with HIV, especially children, are at high risk of having a deficiency. Be aware that high doses of zinc supplements in people who are not deficient can decrease immune function.

Selenium helps regenerate glutathione, the major antioxidant in cells. Studies have shown that low selenium levels in the blood are associated with an increased risk of disease progression and death. Deficiency is associated with low CD4+ cells. One small study found that a daily supplement of 200 micrograms might have a positive effect in some people with HIV. Studies of the general population suggest that selenium supplementation may provide some protection from cancer.

Why Vitamin B12 and Folic Acid (Folate) are important to people with HIV

We’ve adapted this piece from the NYBC Info Sheet on Vitamin B12.

NYBC members often supplement with B-right B complex or with Methylcobalamin, a form of B12 that is better absorbed by the body than other forms of B12.


B-12 may play a very critical role in preventing HIV disease progression: a large Johns Hopkins University study found that people with HIV who are deficient in B-12 have a two-fold increased risk of progression to AIDS. In this study, those who were B-12 deficient progressed to AIDS four years faster than those who were not. The exact mechanism by which adequate B-12 in the body may slow progression is not known, but the finding is not surprising, given all the roles B-12 is known to play in healthy human function.

B12 and another B vitamin, folic acid, are critical to prevent or eliminate the often-overwhelming fatigue that so often accompanies HIV disease, as well as to help prevent some forms of neuropathy and brain and spinal cord changes. Maintaining adequate B12 levels also supports the bone marrow’s production of blood cells (crucial to prevent white and red blood cell decreases), and helps protect the heart.

There are countless anecdotal reports from people with HIV that using B-12 supplementation has dramatically improved their lives by its ability to reverse fatigue, often restoring normal energy to people who had previously been so exhausted that their daily functioning had been greatly affected. Many people have also reported significant improvements in memory and mental functioning, improvements that have made a huge difference in daily life. The possibility that B-12 supplementation might also help prevent or reverse the spinal cord changes that can have such devastating effects on some people is also very encouraging.

B-12 and folic acid should always be given together. Doses of B-12 (1000 mcg given daily via pills, or one to several times weekly via prescribable nasal gel or injections) and folic acid (800 mcg daily via pills) may be useful for restoring energy, treating neuropathy, protecting the heart, increasing overall feelings of well being, and boosting mental function (especially when combined with thiamin, niacin, and folic acid, since all four of these B vitamins are needed for normal neurological function) even when tests don’t indicate obvious deficiencies.

Deficiencies of B-12 can result in deterioration of mental function and neurologic damage that will yield such symptoms as memory loss, decreased reflexes, weakness, fatigue, disorientation, impaired pain perception, tinnitus (chronic ringing in the ears), neuropathy, burning tongue, and various psychiatric disorders. B-12 deficiency can also cause canker sores in the mouth, impaired bone marrow function, loss of appetite, and loss of weight, as well as impaired antibody responses to vaccines.

Folic acid deficiency can also cause fatigue and weakness, along with irritability, cramps, anemia, nausea, loss of appetite, diarrhea, hair loss, mouth and tongue pain, and neurological problems. In addition, folic acid deficiency is believed to play a role in the development of numerous and varied types of human cancers.

A combination of B-12 and folic acid deficiency can allow increases in blood levels of homocysteine, a chemical that can damage artery walls and contribute to heart disease.

One of the known causes of B12 deficiency is chronic viral illness with resulting poor gastrointestinal absorption. AZT use may contribute to deficiencies of both B-12 and folic acid. Many other drugs may worsen folate status in the body including TMP/SMX (Bactrim, Septra), pyrimethamine, and methotrexate (all three of which are folate antagonists), as well as phenytoin (Dilantin), various barbiturates, and alcohol (all of which block folate absorption). B-12 deficiency can also worsen folate levels in the body because B-12 is required to change folate into its active form.

Maintaining optimum weight: recommendations for people with HIV from University of Maryland Medical Center

Here’s a good overview of some issues related to maintenance of optimum weight for people with HIV. This is an excerpt from the University Of Maryland Medical Center’s Complementary/Alternative Medicine website.

Some of the key supplements mentioned below are:

Glutamine

Arginine

—-

Weight loss can be a serious problem for people with HIV. This symptom may begin early in the course of the disease and can increase the risk for developing opportunistic infections. Weight loss is exacerbated by other common symptoms of HIV and AIDS, including lesions in the mouth and esophagus, diarrhea, and poor appetite. Over the last several years, weight loss has become less of a problem due to the new protease inhibitors used for treating HIV. Reduction of muscle mass, though, remains a significant concern. Working with a registered dietitian to develop a meal plan to prevent weight loss and muscle breakdown is extremely helpful. Resistance training (lifting weights) can also protect against muscle breakdown and increase lean body mass.

Preventing diarrhea and ensuring that the body absorbs enough protein to maintain muscle strength has become a major goal of HIV/AIDS preventative care. One program for combating diarrhea includes using soluble fiber (not insoluble fiber, such as Metamucil and psyllium husks). For some people, soluble fiber can help food stay in the digestive tract for longer periods of time, increasing the amount of nutrients that are absorbed, and lessening bowel frequency. Good sources of soluble fiber include apple pectin, oat bran, and flax seed. Because diarrhea can be a potentially life-threatening situation, soluble fiber therapy should be used under the strict supervision of a trained professional.

Using certain supplements may help in maintaining body weight. A well-designed study compared the use of a daily supplement regimen that included enormous amounts of the amino acid glutamine (40 g per day), along with vitamin C (800 mg), vitamin E (500 IU), beta-carotene (27,000 IU), selenium (280 mcg), and N-acetyl cysteine (2,400 mg) to placebo. People who took the supplements gained significantly more weight after 12 weeks than those who took the placebo.

Another study found that a combination of glutamine (7 g per day), arginine (7 g), and an amino acid derivative called hydroxymethylbutyrate or HMB (1.5 g) helped people gain lean body weight during 8 weeks of treatment compared to placebo. High doses of arginine however, may be linked to an increase in herpes viral outbreaks. To find the right dose that offers benefits without dangerous side effects, consult with a trained nutritionally oriented physician.