Why Vitamins B12 and D3 Are Especially Important to People with HIV

Our friends at the Canadian AIDS Treatment Information Exchange (CATIE), a Canadian government-supported education and prevention organization, recently published an excellent guide to managing HIV medication side effects. This online guide covers the territory from body shape changes, to gastrointestinal disorders, to neurological effects, to emotional wellness, to fatigue, to sexual difficulties.

The Appendix to this guide focuses on two vitamins, both of which have been highlighted as especially important for people with HIV: B12 and D3. Deficiency of these two vitamins appears to be common among people with HIV, and supplementing to correct the deficiency can bring about major improvements in health. So it’s definitely worthwhile to check your B12 and D3 status, and, if you’re deficient, find a good supplementation strategy. Note that NYBC stocks both of these inexpensive vitamins: the methylcobalamin form of Vitamin B12 recommended below; and several strengths of Vitamin D3, including the commonly recommended D3 – 2500IU format.

Below are the CATIE recommendations:

Vitamin B12

A number of studies have shown that vitamin B12 is deficient in a large percentage of people with HIV, and the deficiency can begin early in the disease. Vitamin B12 deficiency can result in neurologic symptoms — for example, numbness, tingling and loss of dexterity — and the deterioration of mental function, which causes symptoms such as foggy thinking, memory loss, confusion, disorientation, depression, irrational anger and paranoia. Deficiency can also cause anemia. (See the section on Fatigue for more discussion of anemia.) It has also been linked to lower production of the hormone melatonin, which can affect the wake-sleep cycle.

If you have developed any of the emotional or mental symptoms mentioned above, especially combined with chronic fatigue, vitamin B12 deficiency could be contributing. This is especially true if you also have other symptoms that this deficiency can cause, including neuropathy, weakness and difficulty with balance or walking. On the other hand, these symptoms can also be associated with HIV itself, with hypothyroidism or advanced cases of syphilis called neurosyphilis. A thorough workup for all potential diagnoses is key to determining the cause.

Research at Yale University has shown that the standard blood test for vitamin B12 deficiency is not always reliable. Some people who appear to have “normal” blood levels are actually deficient, and could potentially benefit from supplementation.

The dose of vitamin B12 required varies from individual to individual and working with a doctor or naturopathic doctor to determine the correct dose is recommended. Vitamin B12 can be taken orally, by nasal gel or by injection. The best way to take it depends on the underlying cause of the deficiency, so it’s important to be properly assessed before starting supplements. For oral therapy, a typical recommendation is 1,000 to 2,000 mcg daily.

One way to know if supplementation can help you is to do a trial run of vitamin B12 supplementation for at least six to eight weeks. If you are using pills or sublingual lozenges, the most useful form of vitamin B12 is methylcobalamin. Talk to your doctor before starting any new supplement to make sure it is safe for you.

Some people will see improvements after a few days of taking vitamin B12 and may do well taking it in a tablet or lozenge that goes under the tongue. Others will need several months to see results and may need nasal gel or injections for the best improvements. For many people, supplementation has been a very important part of an approach to resolving mental and emotional problems.

Vitamin D

Some studies show that vitamin D deficiency, and often quite severe deficiency, is a common problem in people with HIV. Vitamin D is intimately linked with calcium levels, and deficiency has been linked to a number of health problems, including bone problems, depression, sleep problems, peripheral neuropathy, joint and muscle pain and muscle weakness. It is worth noting that in many of these cases there is a link between vitamin D and the health condition, but it is not certain that a lack of vitamin D causes the health problem.

A blood test can determine whether or not you are deficient in vitamin D. If you are taking vitamin D, the test will show whether you are taking a proper dose for health, while avoiding any risk of taking an amount that could be toxic (although research has shown that toxicity is highly unlikely, even in doses up to 10,000 IU daily when done under medical supervision). The cost of the test may not be covered by all provincial or territorial healthcare plans or may be covered only in certain situations. Check with your doctor for availability in your region.

The best test for vitamin D is the 25-hydroxyvitamin D blood test. There is some debate about the best levels of vitamin D, but most experts believe that the minimum value for health is between 50 and 75 nmol/l. Many people use supplements to boost their levels to more than 100 nmol/l.

While sunlight and fortified foods are two possible sources of vitamin D, the surest way to get adequate levels of this vitamin is by taking a supplement. The best dose to take depends on the person. A daily dose of 1,000 to 2,000 IU is common, but your doctor may recommend a lower or higher dose for you, depending on the level of vitamin D in your blood and any health conditions you might have. People should not take more than 4,000 IU per day without letting their doctor know. Look for the D3 form of the vitamin rather than the D2 form. Vitamin D3 is the active form of the vitamin and there is some evidence that people with HIV have difficulty converting vitamin D2 to vitamin D3. Historically, vitamin D3 supplements are less commonly associated with reports of toxicity than the D2 form.

It is best to do a baseline test so you know your initial level of vitamin D. Then, have regular follow-up tests to see if supplementation has gotten you to an optimal level and that you are not taking too much. Regular testing is the only way to be sure you attain — and then maintain — the optimal level for health.

With proper supplementation, problems caused by vitamin D deficiency can usually be efficiently reversed.

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Nelson Vergel: “Survivor Wisdom”

A Talk by Nelson Vergel: “Survivor Wisdom: Advances in Managing Side Effects, Living Well, and Aging with HIV” – New York City, November 9, 2010

How could you not be impressed by the schedule HIV treatment activist Nelson Vergel keeps? A few days before he arrived in New York to share his “Survivor Wisdom” with New York Buyers’ Club members and guests, he was an invited participant at the 12th International Workshop on Adverse Drug Reactions and Co-morbidities in HIV in London. The founder and moderator of the “pozhealth” group on Yahoo—the largest online discussion group for HIV issues–Nelson also finds time to answer questions on a forum hosted by thebody.com. In addition, he serves as a community member of the federal government’s Department of Health and Human Services HIV treatment guidelines advisory board. And did we mention that he’s the author of a new book, “Testosterone: A Man’s Guide,” especially useful for people with HIV who are considering testosterone therapy to address fatigue and other problems?

As you might expect, Nelson also covered a lot of territory in his NYBC talk, which was co-hosted by the City University of New York’s Graduate Center. He briefly updated the audience on new treatments and guidelines, then reviewed the exceptional case of the HIV+ “Berlin patient,” whose apparent cure following a bone marrow transplant has opened up, at least tentatively, some new lines of research about curing HIV.

Most of Nelson’s talk, however, dealt with familiar issues in managing HIV symptoms and medication side effects: cardiovascular health challenges, lipoatrophy (facial wasting especially) and body fat accumulation (lipohypertrophy), aging with strong bones, fighting off fatigue, minimizing the risk of anal cancer.

Amid this discussion of symptoms and side effects, Nelson spent time on the topic of supplements. His first point, which NYBC would certainly agree with, is that a lot of good evidence has accumulated about the benefit of multivitamin supplementation, and a multivitamin plus antioxidant combination, for people with HIV. These “micronutrients,” as they’re called in the scientific literature, can enhance survival, delay progression of disease in people not yet on HIV meds, and increase CD4 counts in people taking the meds. We have to admit we were pleased when Nelson also took a moment to praise NYBC (and especially our Treatment Director George Carter) for making available an inexpensive, “close equivalent” of the multivitamin/ antioxidant combination that was the subject of Dr. Jon Kaiser’s well-known research and that led to the development and marketing of K-PAX. New York State residents, as Nelson pointed out, have access to many such supplements through formularies. But for residents of other states, this half-price version of the multivitamin/antioxidant combination (MAC-Pack or Opti-MAC-Pack) can provide welcome relief in the budgetary department.

Our speaker then ran through a list of about a dozen supplements that have reasonably good evidence to support their use by people with HIV. He chose to focus more closely, however, on just a few:

Niacin. Despite “flushing” that makes it difficult for some to use, niacin can be very effective in bringing up levels of HDL (“good”) cholesterol in people with HIV. Since cholesterol control is a major long-term health issue for many people on HIV meds, and since recent research suggests that raising HDL cholesterol levels may be an extremely important factor in reducing cardiovascular risk, niacin may be a top choice for many. (Fish oils/omega-3 fatty acids, plant sterols, pantethine, carnitine, and CoQ10 are other supplements that NYBC and many others put in the category of “supports cardiovascular health.”)

Vitamin D. Seems that, even at the London conference Nelson had just attended, the “sunshine vitamin” was a hot topic. Partly that’s because people with HIV have recently been found to have a high prevalence of Vitamin D deficiency, and then because Vitamin D, calcium and other mineral supplementation is a logical approach to addressing long-term challenges to bone health in people taking HIV meds. (Look on the NYBC blog for a whole host of other recent studies about Vitamin D’s potential benefits, from reducing cardiovascular risk to cancer prevention—even as a way of warding off colds and flu.)

Carnitine. This is a supplement, Nelson told the audience, that he’s taken for many years. Reported/perceived benefits: to improve fatigue, lipids, brain function and neuropathy. (NYBC Treatment Director George Carter put in that “acetyl-carnitine”—a form of the supplement that crosses the blood/brain barrier–has shown the most promise for dealing with neuropathy.)

Probiotics. The vulnerability of the gut in HIV infection, and the well-documented problems people with HIV experience in absorbing nutrients, make probiotics a very helpful class of supplements for long-term health maintenance. (Probiotics, good or “friendly” bacteria residing in the gut, are available in a variety of products, from yogurt to supplements. There’s quite a bit of research about the effectiveness of different varieties, and note as well that there are some newer formats that don’t require refrigeration.)

Above and beyond the treatment issues involving supplements, meds, and other strategies, Nelson referred several times to areas where there’s a need for advocacy. He mentioned the cure project, for one, but also a national watch list to help people follow and respond to the devastation created by recent funding cuts and the resultant waiting lists in the ADAP programs of many states, such as Florida.

All in all, NYBC members and guests would doubtless agree: a very thought-provoking presentation, with much helpful information to take away. For more on these and other issues, be sure to check out the NYBC website at:

http://www.newyorkbuyersclub.org/

[A version of this article also appears in NYBC’s free e-newsletter, THE SUPPLEMENT, along with additional reporting on a new Mayo Clinic guide to supplements, and a look at the current state of regulation and research on supplements in the US.]

CordySeng – 60 tabs from Health Concerns

Here’s some background information on Cordyseng – 60 tablets, available through the NYBC purchasing co-op.

CordySeng is a Health Concerns formula most often recommended for fatigue associated with chronic illnesses or during recovery from an acute illness or operation; also recommended generally for supporting immune function. The ingredients of HC CordySeng are: a proprietary mix of Cordyceps fruiting body extract, Ganoderma (Reishi) fruiting body, Astragalus root extract, American Ginseng root extract, Licorice root extract, and Ginger rhizome extract.

Suggested Use: One to three tablets 2-3 times per day between meals.

Warnings and cautions: not intended for use by pregnant women. Note that less that 1% of users may notice a Ganoderma allergy, which results in a itchy rash. If this occurs, discontinue.

A note about Health Concerns:

HC was among the first companies to manufacture Chinese herbal products in the United States for practitioners trained in Traditional Chinese Medicine. Most HC products are available in tablet form, which is the preferred method of administration for American patients. HC formulas draw on both Traditional Chinese Medicine and modern biochemistry and have been developed by experienced practitioners such as Dr. Fung Fung, Andrew Gaeddert, Misha Cohen, Bob Flaws, and Jake Fratkin.

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.

Fatigue, sleep disturbances, low energy, depression: dietary supplements may help address special health concerns for people with HIV

As we were mulling over the recent New York Times piece on the billions of dollars Americans spend each year on sleep aids that are only mildly effective (see today’s other post under “Melatonin”), we thought we’d reprint this article from the NYBC newsletter THE SUPPLEMENT, which appeared earlier this year.  It deals with the constellation of health concerns, from fatigue to depression, that often affect people with HIV, and gives an overview of some of the dietary supplements that have been used to address these issues.

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Sleeping poorly? Energy low? Feeling down?

Dietary supplements may have something to offer

Sleep disturbances are the third most common complaint among people with HIV seeking medical attention. Everybody knows what it’s like to sleep poorly, then feel cranky and fatigued the next day. But persistent insomnia, followed by chronic fatigue, can become major medical issues for people with HIV (we’re talking about lower CD4 counts and poor medication adherence), so it’s worth reviewing options for dealing with these problems.

A 2005 research presentation suggested that melatonin supplements can improve sleep patterns in people with HIV. Melatonin, a hormone secreted by the pineal gland, has long been studied as a sleep regulator—levels increase in response to darkness, then fall during daytime. It’s also been investigated as an anti-cancer agent, where it has shown the capacity to combat solid tumors. (But melatonin should not be taken by people with cancers affecting immune cells, such as lymphoma or leukemia.)

Good news: a recent trial indicates that low-dose melatonin (0.5 to 1.0 mg) may be perfectly effective as a sleep promoter, making it a very inexpensive option for this purpose.

Fatigue can stem from other causes besides sleep disturbances. Anemia, a shortage of red blood cells, is another leading cause of fatigue among people with HIV, and is especially common among women. (A recent large study found that about 30% of people on HAART had moderate anemia. Women had an 80% greater risk of being anemic than men, and African-Americans had a risk of anemia 2.6 times higher than whites.) It’s important to learn the source of anemia in people with HIV (taking Retrovir, AZT, is a drug-related factor). Treatment options include increasing intake of iron, vitamin B12 and folic acid. Note that NYBC stocks multivitamins with iron for those concerned about their intake of this mineral. You’ll also find folic acid and B12 in our multis, and may want to consider adding a separate vitamin B supplement as well.

While for some people with HIV treating anemia can be a key to helping them overcome fatigue and its frequent companion depression, there are other cases where low energy is not connected to low red blood cell levels, and where the treatment options are therefore different. Particularly in HIV+ men, steroid hormones (testosterone and DHEA) have proven to be useful in combating the fatigue-depression combination. Recent federally-funded research on DHEA showed it to be an effective anti-depressant, with the added interesting feature that it can enhance sex drive (rather than undermining it, as do certain common prescription anti-depressants).  And a Columbia University study of DHEA for fatigue and depression in people with HIV has found it to be a successful treatment for some, with the added bonus that, unlike some prescription energy boosters, it doesn’t carry the risk of addiction.