Movie preview: Dallas Buyers Club

Image Credit: Anne Marie Fox/Focus Features
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Last night we had the chance to preview the astonishing and inspiring new movie, Dallas Buyers Club, starring Matthew McConaughey and Jared Leto. It’s the story of Ron Woodroof, a Texas rodeo rider and electrician who tested positive in 1986, and went on to fight the medical establishment and pharmaceutical companies, searching for alternative treatments throughout the world and setting up a buyers’ club to make these alternatives available to others with HIV/AIDS.

We were astonished by the movie because, having labored for a decade (or two decades, for some of us at NYBC) in the field of buyers’ clubs for people with HIV, we weren’t prepared to think of our work as material for a Hollywood production. If you looked at the NYBC probiotics that have helped people keep their digestive systems functioning thru years of taking HIV meds, or the MAC-Pack that has helped HIV+ people keep up CD4 counts, or supplements that have helped support liver function–it didn’t all add up, in our minds, to a Hollywood movie starring Matthew McConaughey!

We do want to give credit to the movie’s creators for doing an excellent job in depicting that moment, in the late 1980s and early 1990s, when people with HIV decided to fight a slow-moving, closed-minded FDA that was blocking access to alternative treatments and even to some of the early HIV meds that were becoming available elsewhere in the world.

We particularly liked the early scene in Dallas Buyers Club, when the Ron Woodroof/Matthew McConaughey character, who’s been told by a Dallas hospital doctor that he has 30 days to live, drives down to Mexico, and finds an off-the-grid AIDS clinic run by a American doctor who’s had his license revoked. At that point, Ron Woodroof looks in pretty bad shape, and the clinic doctor tells him that first of all he needs to start taking a “multivitamin with zinc, plus some essential fatty acids.” That’s the starting point for Ron’s new treatment quest, which discards the side effect-ridden AZT being pushed by Pharma and mainstream doctors, and scans the world for alternatives. (The Mexican clinic is also importing DDC, an early line HIV med from France, not approved at the time in the USA.)

There’s a lot going on in Dallas Buyers Club: the homophobic Ron Woodroof undergoes a big change of heart as he sets up the buyers’ club with help from the drag queen played by Jared Leto. At one point you’ll catch a glimpse of a TV news story about ACT-UP storming the FDA to protest the glacial pace of HIV med trials. You’ll also see a fight in a supermarket over whether to buy the typical American junk foods, or some real nutrition. And there’s quite a bit of money changing hands as the buyers’ club takes off (the Dallas Buyers Club was NOT a nonprofit, unlike NYBC!). And we should advise that some of the drugs that Ron Woodroof imported for his buyers’ club were promising starts, while others today we’d have to dismiss. In the end, though, we’ll take Dallas Buyers Club for what it’s meant to be: an inspiring tale about how buyers’ clubs brought treatment alternatives to people with HIV/AIDS, even when that quest ran against most of the conventional medical wisdom. And we’d add that while the treatments have certainly changed over the years, we at NYBC still identify with the need for treatment alternatives, and still don’t want to settle for just the conventional medical wisdom.

So—come on down and visit us at http://www.newyorkbuyersclub.org/. We do recommend that you see the movie, too, when it opens on November 1. And if you support any or all of our convictions about the importance of buyers’ clubs for people with HIV, why not make a donation to NYBC at

DONATE TO NYBC

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

Nutrivir – No Sugar Added

Nutrivir, which NYBC has stocked since the start, is an excellent and tasty combination of nutrients in a base of vanilla-flavored whey protein concentrate. In addition to vitamins and minerals, Nutrivir contains n-acetylcysteine (NAC) and carnitine. It was formulated especially to combat wasting syndrome, which can occur in those undergoing cancer treatments, or in people with HIV/AIDS. (Wasting syndrome is defined as unintended and progressive weight loss, accompanied by weakness, fevers and nutritional deficiencies due to malabsorption.)

Here’s a bit more from the supplier of Nutrivir:

Increasing evidence suggests that abnormal metabolism of cysteine and glutathione plays a decisive role in loss of muscle and immune dysfunction associated with [wasting syndrome]. At this time, the most promising supplement for these patients is a cysteine derivative known as N-acetyl cysteine (NAC). NutriVir [supplies]… quantities of NAC and other antioxidants that have been shown in clinical trials to be effective in combating wasting, malabsorption and diarrhea associated with cancer and AIDS.

Read more details at the NYBC entry:

Nutrivir

Multivitamin Antioxidant Combination (MAC-Pack): a K-Pax alternative available in no-iron formula for those with liver impairment

In 2007, NYBC began offering an alternative to the K-Pax multivitamin-antioxidant supplement, which was added to some ADAP and Medicaid formularies following publication in 2006 of Dr. Jon Kaiser’s study that found CD4 increases in people with HIV taking a micronutrient combination supplement. A first reason for the NYBC alternative, called the MAC-Pack, was price: for those without access to ADAP or Medicaid programs, the double strength K-Pax cost of about $140/month was rather high, and NYBC as a nonprofit co-op was able to present a close equivalent for only $62/month.

But another rationale for introducing the MAC-Pack was its flexibility. In fact, because MAC-Pack uses the AMNI/Douglas multivitamins Added Protection as its core, it can be configured as a formula with or without iron. Having the option of an iron-free MAC-Pack is important especially to people with elevated liver enzymes, liver impairment, or hepatitis co-infection. Taking iron supplements is generally not recommended for this group, since processing the iron puts an extra strain on liver function.

Also note that the MAC-Pack provides somewhat more acetylcarnitine than the K-Pax, which may not be a bad idea, especially if you believe, as we do, that acetylcarnitine is probably a key element in the multivitamin-antioxidant combination. (Two tabs/day is sufficient if you’re just interested in matching the K-Pax formula, but three/day may be better especially for those dealing with neuropathy.)

For more information, see the NYBC entry:

MAC-Pack

Supplement recommendations from Fred Walters / Houston Buyers’ Club

It was great to see an extended interview with our friend and colleague Fred Walters of the Houston Buyers Club in a recent posting on the website thebody.com.

Fred talks about his conservative Catholic background, his early vocation that took him to seminary, and his subsequent adventures as he began and nurtured the Texas-based nutritional supplements purchasing co-op for people with HIV, the Houston Buyers Club. HBC has been a beacon for so many when it comes to information about, and access to, supplements. And treatment activists that we admire a great deal, including Nelson Vergel and Lark Lands, have found a welcome forum at HBC over the years–we’re all better informed as a result.

Here’s an excerpt from the interview, in which Fred describes what he considers to be the most significant nutritional supplements for people with HIV:

I would say number one, a potent multivitamin. The top mistake people make with multivitamins is they are hypnotized by the words “one-a-day.” And there is no such thing as a potent one-a-day multivitamin for people with HIV. If you’re going to do a multivitamin you have to do several, several times a day. My favorites are Superblend by Super Nutrition and the K-Pax [KaiserPax] by Jon Kaiser [M.D., an HIV specialist in San Francisco]. Those are my two favorites. The second thing I would do is NAC, and that is a supplement that helps to increase gluthathione levels. It’s very good for the liver. The third one is fish oils, even if you don’t have high cholesterol or high triglycerides. Fish oils are real important for skin and other things in the body. They help reduce inflammation. That’s probably my biggest thing, the inflammation part. The other would be if you’re taking a high potency multivitamin you should add the selenium […]

If people are taking HIV drugs they have to take Coenzyme Q10, because what happens is that the drugs go into the body, as they’re winding their way through the cave with their guns drawn waiting to shoot at the HIV viral cells, by the time they walk up to a dead body they say, “Oh no, that wasn’t an HIV viral cell. That was a mitochondria.” And so Q10 helps to protect the mitochondria, and if you don’t protect the mitochondria in the body then you start opening yourself up to all kinds of organ and liver issues.

“Oh, how could I forget this one. […] Actually it’s getting a lot of press locally because Baylor University is studying this, but … green tea capsules. We are seeing more and more people who are doing two grams a day of green tea capsules and their T-cells are going up between 40 and 100%. Dr. Christina L. Nance is studying that at Baylor and we see that here, and today I was watching a local television show and of all days for you to call, there was a show on about food as medicine and they talked a lot about HIV, and one of the things they talked about was green tea liquid. They mentioned that it was being studied locally for HIV. So we’re not the only one on the soapbox about this. We’ve seen amazing results with that.

Read the full interview with Fred Walters at

http://www.thebody.com/content/art48991.html?mtrk=10922635

NOTE: As far as multivitamins go, NYBC has followed its predecessor DAAIR in stocking Douglas Labs multis, which are highly bioavailable (= can be easily absorbed and used by the body):

Added Protection Without Iron (a no-iron formula is recommended especially if you have elevated liver enzymes or hepatitis)

Added Protection With Iron

Ultra Preventive Beta This is a version of Added Protection that replaces the Vitamin A with beta carotene and a good mix of carotenoids–a good idea for people with any kind of liver trouble.

(NYBC also stocks the SuperNutrition multivitamins.)

Last, we have to say that a major concern for NYBC members has been the cost of supplements. That’s why in 2007 the buyers’ club began offering its MAC-Pack, which is a close equivalent of the K-PAX, but at about half price. The MAC-Pack uses the Douglas Labs Added Protection multis as its base, then adds NAC, lipoic acid, B vitamins and a substantial amount of acetylcarnitine to round out the package:

MAC-Pack (See other entries on this blog for more details.)

The Lowdown on Lipodystrophy – Nelson Vergel on “HIV Lipodystrophy: Where Are We After 10 Years?”

We’d like to recommend this article, by long-time AIDS treatment activist Nelson Vergel, which appears in the July-Dec. 2007 issue of GMHC’s Treatment News

It’s available online at

http://www.gmhc.org/health/treatment/ti/ti21_3_4.html#3

Lipodystrophy has been one of the most discussed side effects of HIV medications in the past ten years, and, as this article points out, its potentially devastating psychological effects have added urgency to the search for scientific understanding about the condition, and treatment options to address it.

This excellent summary divides the discussion into three parts:

–lipoatrophy (fat loss in the face, buttocks, arms and legs)

–lipohypertrophy (fat accumulation in specific areas of the body such as the neck, belly, upper torso, and breasts)

–lipid abnormalities (high LDL [“bad”] cholesterol and triglycerides, low HDL [“good”] cholesterol)

Nelson outlines how Zerit and AZT were especially implicated in lipoatrophy; he also sorts through the ongoing uncertainties about the origins of lipohypertrophy and lipid abnormalities in people with HIV on HAART.

This article is also very useful in reviewing the treatment options for these three conditions, including facial wasting reconstruction therapies like Sculptra (formerly Newfill) for lipoatrophy; prescription drugs for lipohypertrophy (testosterone or Metformin*); nutritional supplements like fish oil and Niacin for lipid abnormalities (these are often most successful when used along with diet and exercise programs, and can enhance the effectiveness of prescription statins).

Nelson Vergel continues to do a great service in making this kind of treatment information available to PWHIV. For more info, you can also visit the website http://www.facialwasting.org, or subscribe to the pozhealth internet HIV health discussion group by sending a blank email to pozhealth-subscribe@yahoogroups.com.

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*See additional posts on this Blog for a recommendation about supplementing with B vitamins when taking Metformin.

“HIV Lipodystrophy: Where are we after ten years?” – Nelson Vergel, in GMHC Treatment News, July-Dec. 2007

We’d like to recommend this article, by long-time AIDS treatment activist Nelson Vergel, which appears in the July-Dec. 2007 issue of GMHC’s Treatment News

It’s available online at

http://www.gmhc.org/health/treatment/ti/ti21_3_4.html#3

Lipodystrophy has been one of the most discussed side effects of HIV medications in the past ten years, and, as this article points out, its potentially devastating psychological effects have added urgency to the search for scientific understanding about the condition, and treatment options to address it.

This excellent summary divides the discussion into three parts:

–lipoatrophy (fat loss in the face, buttocks, arms and legs)

–lipohypertrophy (fat accumulation in specific areas of the body such as the neck, belly, upper torso, and breasts)

–lipid abnormalities (high LDL [“bad”] cholesterol and triglycerides, low HDL [“good”] cholesterol)

Nelson outlines how Zerit and AZT were especially implicated in lipoatrophy; he also sorts through the ongoing uncertainties about the origins of lipohypertrophy and lipid abnormalities in people with HIV on HAART.

This article is also very useful in reviewing the treatment options for these three conditions, including facial wasting reconstruction therapies like Sculptra (formerly Newfill) for lipoatrophy; prescription drugs for lipohypertrophy (testosterone or Metformin*); nutritional supplements like fish oil and Niacin for lipid abnormalities (these are often most successful when used along with diet and exercise programs, and can enhance the effectiveness of prescription statins).

Nelson Vergel continues to do a great service in making this kind of treatment information available to PWHIV. For more info, you can also visit the website http://www.facialwasting.org, or subscribe to the pozhealth internet HIV health discussion group by sending a blank email to pozhealth-subscribe@yahoogroups.com.

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*See the recent post on this Blog for a recommendation about supplementing with B vitamins when taking Metformin.

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.)
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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!

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:

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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.
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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:
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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.