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.

CATIE booklet on side effects

CATIE, the venerable and sharp Canadian AIDS Treatment Information Exchange, has once again provided a terrific manual entitled A Practical Guide to HIV Drug Side Effects (link – http://www.catie.ca/en/practical-guides/hiv-drug-side-effects ).

The booklet, available as a pdf by clicking the link above, covers a wide array of topics. The language is clear and the layout is easy to follow. They provide information on mainstream medical and “alternative” or natural remedies to manage what can be debilitating side effects of HIV therapy.

Topics covered include the range found in the table of contents:

This Guide Is One Tool to Healthy Living
4 Dealing with Side Effects
8 My Health Map
10 Body Weight and Body Shape Changes
14 Diarrhea, Gas and bloating
17 Emotional wellness
21 Fatigue
24 Headaches
27 Menstrual changes
31 Mouth and throat problems
35 Muscle aches and pains
38 Nausea, vomiting and appetite loss
42 Nerve pain and numbness
44 Rash and other problems of the skin,
hair and nails
47 Sexual difficulties
49 Sleep problems
53 Less common side effects: lactic acidosis,
pancreatitis and abacavir hypersensitivity
55 Appendix: Vitamin B12 and Vitamin D
57 More Resources

HIV and Aging: Living Long and Living Well

By 2015, more than 50% of the United States HIV population will be over 50. There are approximately 120,750 people now living with HIV/AIDS in NYC; 43% are over age 50, 75% are over age 40. Over 30% are co-infected with hepatitis.

What does the future hold for people with HIV and HIV/HCV as they get older?

These statistics and this question furnished the starting point for the New York Buyers’ Club March 28 event HIV and Aging: Living Long and Living Well, presented by Stephen Karpiak, PhD, of the AIDS Community Research Initiative of America (ACRIA).

Dr. Karpiak’s background uniquely positions him to paint the full picture behind the bare statistics, and to provide expert guidance through the complex healthcare challenges faced by the growing population of older people with HIV. After two decades as a researcher at Columbia University’s Medical School, Dr. Karpiak moved to Arizona, where he directed AIDS service organizations through the 1990s, including AIDS Project Arizona (which offered a supplements buyers’ club similar to NYBC’s). In 2002, back in NYC, he joined ACRIA as Assistant Director of Research, and was the lead investigator for the agency’s landmark 2006 study, Research on Older Adults with HIV. This report, the first in-depth look at the subject, surveyed 1,000 older HIV-positive New Yorkers on a host of issues, including health status, stigma, depression, social networks, spirituality, sexual behavior, and substance abuse.

Why are there more and more older people with HIV? The first and principal answer is very good news: HIV meds (HAART), introduced more than 20 years ago, have increased survival dramatically. Secondly, a smaller but still significant reason: older people are becoming infected with HIV, including through sexual transmission. (Older people do have sex, though sometimes healthcare providers don’t seem to acknowledge this reality.)

As Dr. Karpiak noted, HAART prevents the collapse of the immune system, and so it serves its main purpose, to preserve and extend life. And yet, as he reminded the audience, HIV infection initiates damaging inflammatory responses in the body that continue even when viral load is greatly suppressed. These inflammatory responses, together with side effects of the HIV meds, give rise to many health challenges as the years pass. In people with HIV on HAART, research over longer time periods has found higher than expected rates of cardiovascular disease, liver disease, kidney disease, bone loss (osteoporosis), some cancers, and neurological conditions like neuropathy.

That brings us to “multi-morbidity management”—a term we weren’t enthused about at first, since it sounded more like medical-speak than the plain talk our NYBC event had promised. But Dr. Karpiak gave us a simple definition: dealing with three or more chronic conditions at the same time (and HIV counts as one). He then made the case that this is a critical concept to grasp if older people with HIV are going to get optimal care. Multi-morbidity management, he explained, is a well-accepted healthcare concept in geriatric medicine, which recognizes that older people may have several conditions and will benefit from a holistic approach in order to best manage their health. Treating one condition at a time, without reference to other co-existing conditions, often doesn’t work, and sometimes leads to disastrously conflicting treatments.

And here’s where Dr. Karpiak warned about “polypharmacy”–another medical term worth knowing. “Polypharmacy” can be defined as using more than five drugs at a time. Frequently, it comes about when healthcare provider(s) add more and more pills to treat a number of conditions. But this approach can backfire, because, as a rule of thumb, for every medication added to a regimen, there’s a 10% increase in adverse reactions. That’s why adding more and more drugs to treat evolving conditions may be a poor approach to actually staying well.

In closing, Dr. Karpiak focused especially on a finding from ACRIA’s 2006 study: the most prevalent condition for older people with HIV, aside from HIV itself, was depression. Over two-thirds of those surveyed had moderate to severe depression. Yet while depression can have serious conse-quences–such as threatening adherence to HIV meds–it has remained greatly under-treated. It may seem an obvious truth, but as Dr. Karpiak underlined, psychosocial needs and how they’re met will play a big role in the health of people with HIV as they age. What social and community supports are available becomes a big medical question, and how healthcare providers and service organizations respond to it can make for longer, healthier lives for people with HIV.

And now we come back to NYBC’s contribution to the discussion on HIV and Aging. While NYBC doesn’t keep track of such information in a formal way, we do recognize that quite a few of our members have been using supplements since the days of our predecessor organization DAAIR–going back 20 years now. That’s a lot of accumulated knowledge about managing symptoms and side effects among people with HIV! To accompany the March 28 presentation, our Treatment Director George Carter drew up a pocket guide to complementary and alternative approaches: HIV and Aging – Managing and Navigating. Partly derived from his long experience, and partly drawn from a 2012 Canadian report, the guide ranges over those kinds of “co-morbidities” that Dr. Karpiak spoke of, including cardiovascular, liver, kidney, bone, and mental health conditions. Interventions or management strategies include supplements, but also diet and exercise recommendations, as well as psychosocial supports (counseling, support groups, meditation, and activism).

NYBC has also updated several info sheets from its website and blog, offering these as a way to address some of the most common healthcare issues facing people with HIV as they get older: cardiovascular topics; :digestive health; NYBC’s MAC-Pack (a close equivalent to K-PAX®); key antioxidants NAC and ALA and their potential to counter inflammatory responses; and supplement alternatives to anti-anxiety prescription drugs. These info sheets, together with the HIV and Aging – Managing and Navigating pocket guide, are available on the NYBC website and blog.

We hope that our HIV and Aging: Living Long and Living Well event has been useful to all. Special thanks to our audience on March 28, many of whom brought excellent questions to the session. Now let’s continue the conversation…

To your health,

New York Buyers’ Club


Alpha lipoic acid for diabetic sensory neuropathy

A recent review article suggested that a dose of 600 mg alpha lipoic acid (ALA) daily administered for up to 5 weeks could offer benefits in symptoms of diabetic sensory neuropathy without significant side effects. This review also notes that ALA is already approved for treatment of neuropathy in Germany. Furthermore, it seems obviously a better choice than the opioids often prescribed for diabetic neuropathy pain, as these induce addiction.

For more on alpha lipoic acid, see the NYBC entries:
Jarrow ALA sustained and Montiff ALA. NYBC also stocks Jarrow ALA plus Biotin; biotin is a B vitamin that has also been recommended for diabetes.


McIlduff CE, Rutkove SB, Critical appraisal of the use of alpha lipoic acid (thioctic acid) in the treatment of symptomatic diabetic polyneuropathy. Therapeutics and Clinical Risk Management. Sept. 2011 Volume 2011:7 Pages 377 – 385

Neuropathy pain and HIV: supplement recommendations

You may have read reports in late February 2012 about the FDA’s skeptic ism about a patch called Qutenza, which had been tested for relief of neuropathy pain in people with HIV. Following a meeting to review the evidence, an FDA panel concluded that Qutenza, whose active ingredient is a synthetic form of capsaicin (the compound that makes chili peppers hot) was not effective for HIV-related neuropathy pain.

The FDA’s finding on Qutenza reminds us again that neuropathy (generally, pain or tingling in the extremities) continues to be one of the most troublesome effects of HIV/AIDS and/or its treatment—and one of the most difficult to manage. According to a survey report in 2010, for example, more than one third of those on combination antiretroviral therapy for HIV do experience neuropathy, leading to lower quality of life and often disability. So, it may be worthwhile to repeat some of NYBC’s recommendations on this topic:

Peripheral neuropathy: “nukes” (nucleoside reverse transcriptase inhibitors) such mas ddI (Videx), and d4T (stavudine/ Zerit) – and Indinavir, T20, and even 3TC (Epivir)may all cause this feeling of pins and needles or numbness to toes and fingers. It can travel up the legs and become debilitating. HIV, diabetes, alcohol abuse, and vitamin deficiencies can all be causes of peripheral neuropathy. Supplements that are “good for your nerves” and that have the most robust data include acetylcarnitine (1-3 grams/ day, quite well studied for peripheral neuropathy) and alpha lipoic acid (200-600 mg/day). Other agents that can help are Vitamin B12, biotin, lecithin, magnesium, borage oil, evening primrose oil, choline and inositol.

See the NYBC website for more details about these supplements:

Supplements for the Brain (and Nerves)

“For Your Peace of Mind…”

Recent research on supplements for memory, cognition and other neurological functions
You may remember (we hope you remember!) the Scarecrow’s petition to the Wizard of Oz for a brain. Be advised–we at NYBC do not stock new brains, so don’t come to us with that request.

However, we do follow the sometimes startling new research on supplements, brain function and related neurological issues. In this department, there’s special cause for concern for people with HIV. According to a Canadian study released in 2010, in a group of 1615 people receiving treatment for HIV during the decade 1998-2008, one fourth had neurological problems, including memory loss, cognitive impairment and peripheral neuropathy. Of course being worried about brain function–and neurological function in general–is not unique to people with HIV. As people age, they are more likely to experience memory loss or forms of dementia such as Alzheimer’s. And the nerve condition called peripheral neuropathy (pain, tingling in the feet and hands) is found not just in people with HIV, but also among the growing population with Type 2 diabetes.

Now, on to what we see as some of the most valuable recent findings about supplements and brain or neurological function:

B vitamins can be considered a foundation because they are needed in so many processes essential to the brain’s operation, from energy supply and healthy blood flow, to the formation of neurotransmitters (=chemical messengers of neurologic information from one cell to another). Furthermore, there is evidence that several groups of people, including those over 60 and those with HIV, have a greater risk for Vitamin B deficiencies. So supplementing with a B complex vitamin is a sensible start to cognitive health. More specifically, there is good research linking deficiency of vitamins B12 and B6 to mood disorders like depression—and depression earlier in life is associated with higher risk of dementia in later life. Last, there is also some evidence that B vitamins may reduce stroke risk in older people.

Omega-3 fatty acids (fish oil) support cognitive health in a variety of ways. In 2008, UCLA researchers reported on a lab study showing that the omega-3 fatty acid DHA, together with exercise, improved cognitive function. This caught our attention, because there is wide agreement that regular exercise strongly supports brain function as we age, and here the suggestion is that omega-3 fatty acids multiply that known benefit. A diet rich in omega-3 fatty acids/fish oil has also been linked to lower risk of depression—another plus. And still more: recent research found that omega-3 fatty acids block the development of retinopathy, a chief cause of blindness as we age. (The retina of the eye is actually part of the brain–it is full of nerve cells essential for vision.) All in all, the neurological benefits of omega-3 fatty acids seem both wide-ranging and quite convincing, so it’s high on our recommended list.

The amino acid acetylcarnitine has shown benefit for brain function in a number of studies with humans. In the last decade, acetylcarnitine has also been investigated for peripheral neuropathy in people with HIV. (Some recommend using it with evening primrose oil and Vitamin C.) A 2008 study found that acetylcarnitine influences a chemical process in the brain that triggers Alzheimer’s, so researchers are continuing to puzzle out how this supplement produces its neurological benefits.

Antioxidants. There’s much suggestive research about how antioxidants counter destructive oxidative processes in the brain, thus blocking memory loss and cognitive decline. For example, a 2003 report found that the antioxidant combination alpha lipoic acid and NAC reversed memory loss in aged laboratory mice. And there’s also been a lot of attention to the combination acetylcarnitine and alpha lipoic acid for memory impairment. Furthermore, other antioxidants such as curcumin are under study for their potential to fight the processes that lead to declining brain function.

Acetylcholine. The first neurotransmitter to be identified, acetylcholine is closely associated with memory, with lower levels linked to memory loss. NYBC currently stocks two combination supplements that support acetylcholine levels in the brain, while also providing other nutrients for neurological function: Neuro Optimizer (Jarrow), which includes acetylcholine enhancers, acetylcarnitine, and alpha lipoic acid; and Think Clearly (SuperNutrition), which includes B vitamins, as well as acetylcholine enhancers and a botanical traditionally used for cognitive support, ginkgo biloba.

Resveratrol. In the past decade, there has been intense scientific interest in this compound, most famously found in red wine. While some research ventures have hoped to find in resveratrol a life-extending supplement (a capacity demonstrated in animal studies), others have focused on its therapeutic value for conditions like diabetes or cognitive decline. For example, Cornell researchers reported in 2009 that resveratrol reduced the kind of plaque formation in animal brains that causes Alzheimer’s. And a year later another lab investigation, this one at Johns Hopkins, found that a moderate dose of the compound protected animal brains from stroke damage.

Ginkgo biloba, a botanical derived from Earth’s most ancient tree species, has been widely used for cognitive function. In the late 1990s, two reviews of dozens of ginkgo studies concluded that it could improve symptoms of dementia. However, a long-term trial of ginkgo published in the Journal of the American Medical Association in 2008 found that the supplement did not prevent development of dementia in a group of more than 3000 older people who had normal cognitive function at the start of the research. One possible conclusion: ginkgo may help symptoms of cognitive decline, but doesn’t address underlying causes.

NYBC’s RECOMMENDATIONS: A B complex supplement (like Jarrow’s B-right) and fish oil (like Jarrow’s Max DHA) are foundations for maintaining cognitive health, especially important for people with HIV or people over 60. There is some evidence for acetylcarnitine, alpha lipoic and acetylcholine supplementation for memory impairment and possibly for cognitive decline. Acetylcarnitine and other supplements can be used to address peripheral neuropathy. And stay tuned for emerging research on preserving brain function with compounds like resveratrol, NAC and curcumin.


NYBC has issued a new info sheet on ACETYLCARNITINE, a key item in our catalog.

Below is some background on this supplement, as well as some of the important evidence supporting its use.

Or–click on the image above for the full-sized INFO SHEET.

Acetylcarnitine is a form of carnitine, an amino acid found in nearly all cells of the body. Carnitine plays an essential role in the mitochondria, the energy factories within cells. The acetyl component of acetylcarnitine provides for the formation of the neurotransmitter acetylcholine, key to memory function in the brain. Acetylcarnitine is often regarded as the preferred form for carnitine supplementation because it is better absorbed from the small intestine than L-carnitine and more efficiently crosses the blood-brain barrier.

Significant research on acetylcarnitine:

• Acetylcarnitine may have a triglyceride-lowering effect for some people, as well as helping to elevate HDL (“good”) cholesterol levels. It may have cardioprotective activity in addition to beneficially affecting cardiac function. It may also have antioxidant and neuroprotective properties.
• There has been a great deal of attention to carnitine because it may help counter the mitochondrial toxicity experienced in HIV infection and all the successive problems which that may cause, including neuropathy, myopathy, bone marrow suppression (and resulting decreases in red and white blood cells and platelets), pancreatitis, fatty liver, lactic acidosis, and fat loss (lipoatrophy).
• Acetylcarnitine has also been studied for its capacity to enhance memory and other cognitive function.

Please visit the NYBC product entries for more information:

Acetylcarnitine – Biosint

Acetylcarnitine – Montiff