New York Buyers’ Club - The Blog

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.

The people at the AIDS Treatment Data Network (ATDN) have developed a series of “Simple Fact Sheets” about treatment and management of HIV. Their fact sheet on “Nutritional Management of Lipodystrophy,” written by an HIV nutritionist at Cabrini Medical Center in New York, covers diet (the right mix of carbohydrates, protein, fruits and vegetables, the right kinds of fats), exercise, and supplements, beginning with a good multivitamin, preferably one that includes a good set of antioxidants. There’s also a description of some supplements that may be useful in reducing lipodystrophy: L-carnitine, NAC, chromium, alpha lipoic acid, B-complex vitamins (niacin may be key among the B vitamins, but the recommendation is to always supplement using a B-complex, since the different B vitamins support one another’s action), and omega-3 fatty acids (fish oil and/or flaxseed).

 To read the entire fact sheet, go to

http://www.atdn.org/simple/nutrlip.html

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.

The Oregon State University/Linus Pauling Institute website is highlighting a number of recent studies, especially from 2005-2006, which have examined the potential of acetyl-l-carnitine or L-carnitine, together with alpha lipoic acid, to counter the effects of aging in laboratory rats. Like the Linus Pauling Institute reviewer, we are looking forward to human clinical trials in the next few years to further define useful dosages and health benefits.

NOTE: a great deal of previous research on acetylcarnitine, L-carnitine, and alpha lipoic acid is reviewed on the NYBC website.

…two studies found that supplementing aged rats with either ALCAR [acetyl-l-carnitine] or alpha-lipoic acid, a mitochondrial cofactor and antioxidant, improved mitochondrial energy metabolism, decreased oxidative stress, and improved memory. Interestingly, co-supplementation of ALCAR and alpha-lipoic acid resulted in even greater improvements than either compound administered alone. Likewise, several studies have reported that supplementing rats with both L-carnitine and alpha-lipoic acid blunts the age-related increases in reactive oxygen species (ROS), lipid peroxidation, protein carbonylation, and DNA strand breaks in a variety of tissues (heart, skeletal muscle, brain). Improvements in mitochondrial enzyme and respiratory chain activities were also observed. While these findings are very exciting, it is important to realize that these studies used relatively high doses (100 to 300 mg/kg body weight/day) of the compounds and only for a short time (one month). It is not yet known whether taking relatively high doses of these two naturally occurring substances will benefit rats in the long-term or will have similar effects in humans. Clinical trials in humans are planned, but it will be several years before the results are available.

This post runs a little long, but we think it’s worthwhile to put up the FAQ about nutritional supplements recently posted by the New York Buyers’ Club. It answers a lot of (sometimes anxious) queries about supplements, and also gives a quick rundown on some of the top uses of supplements among the NYBC membership.

What are supplements?
A nutritional or dietary supplement (or just plain supplement), as defined by the Dietary Supplement Health and Education Act (DSHEA) of 1994, is “a product (other than tobacco) that is intended to supplement the diet and that contains one or more of the following: vitamins, minerals, herbs or other botanicals, amino acids, or any combination of the above ingredients,” and can be taken in tablet, capsule, powder, or liquid form.
NYBC specializes in supplements for those with HIV, hepatitis C, and other chronic conditions. Our Supplement Fact Sheets contain information on more than 100 supplements commonly used by our Members. Our nonprofit purchasing co-op stocks these supplements on a regular basis, and can also special-order many other supplements on request.
Why take supplements?
There is a great deal of research showing that supplements can help people manage serious chronic conditions such as HIV and hepatitis. Supplements can also be useful in addressing many common health issues, such as high cholesterol, diabetes, depression, arthritis pain, gastrointestinal disorders, etc. (see our short list of specifics below). Some supplements are derived from ancient traditions of use (for example, the botanicals of India’s Ayurvedic tradition), while other items (such as vitamins or amino acids) have been isolated and used as supplements much more recently. The scientific study of supplements has blossomed in recent decades, so we now have better evidence about many of them—even traditional botanicals—than we ever did in the past.
Are supplements considered “medicine”?
While supplements may have medicinal properties, they are not regulated in the same way that prescription drugs are, and are therefore accompanied by the disclaimer: “These statements have not been evaluated by the Food & Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.”
The fact that supplements are not regulated in the same way that prescription drugs are naturally gives rise to concerns about purity, efficacy, and safety – so it’s good to have a knowledgeable ally like NYBC on your side! Collectively, we have many years of experience in using supplements, in researching information on them, and in evaluating suppliers to obtain the best quality product.
Are supplements “safe”?
Under current US regulations, supplements are assumed to be safe on the basis of their history of use, or because they are found in the food supply (like the microorganisms in yogurt or the vitamins and minerals in foods). The US Food and Drug Administration is responsible for removing supplements from the market if it finds evidence that they are unsafe, but it’s worth noting that this happens quite rarely. (The removal from the market of ephedra [aka the Chinese herb Ma huang], used at high dosage as a diet pill, is practically the only significant example since 1994). However, while supplements may be “assumed to be safe,” everyone who takes them needs to pay attention to the recommended dosage and any cautions or warnings. If you exceed the recommended dosage of certain supplements, there may be side effects, sometimes serious. Furthermore, a supplement may have negative interactions with other medications you are taking, or a particular supplement may not be a wise choice for you due to other health concerns. That’s why it’s always important to discuss your supplement use with your doctor.

Here are just a few examples of potentially dangerous supplement-medication interactions (from the National Center for Complementary and Alternative Medicine’s website) - further proof that consulting your physician about supplement use is crucial:

• St. John’s Wort can increase the effects of prescription drugs used to treat depression. It also dangerously interferes with drugs used for HIV, cancer, birth control, and rejection of organ transplants

• Ginseng can increase the stimulant effects of caffeine (as in coffee, tea, and cola). It can also lower blood sugar levels, creating the possibility of problems when used with diabetes drugs

• Ginkgo, taken with anticoagulant or antiplatelet drugs, may increase the risk of bleeding. Ginkgo may also interact with certain psychiatric drugs and with certain drugs that affect blood sugar levels

Of course, doing your own “homework” is also encouraged. Be sure to bring any notes or printouts from your research to share with your healthcare provider. That way, you’ll both be literally on the same page.
Identity, Purity and Potency
Safety is also a matter of product quality. Is the product what it claims to be on the label (that is, is it really fish oil)? This is the product Identity. Does the product contain any unwanted contaminants like heavy metals, insect parts, rodent droppings? All foods and medicinal products face these issues of Purity. And finally, does it have as much of the claimed amount of a substance? For example, if it says 100 mg of niacin, does it have that amount? This is the product’s Potency. These issues are of ongoing concern. NYBC has done everything possible to assure that products meet these standards. Websites such as www.consumerlab.com can help. Also indications of quality such as USP or other labels further add assurance. The good news is that the vast majority of products tested by consumerlab, for example, pass their tests. Still, NYBC believes an appropriately funded agency of the FDA could do more rigorous, routine and comprehensive testing.
What is CAM?
CAM is an acronym for complementary and alternative medicine. The use of supplements is considered CAM. Some prefer the term integrative medicine.
The National Center for Complementary and Alternative Medicine (NCCAM), a division of the US National Institutes of Health, defines CAM as “a group of diverse medical and health care systems, practices and products that are not presently considered to be part of conventional medicine.” NCCAM, like the US Office of Dietary Supplements, came into being after passage of DSHEA, and marks the federal government’s decision to commit funding to research and education about CAM. Over a billion dollars in your tax dollars have been spent by these agencies since their start.

——————————————————-
Using Supplements
What supplements can I use to improve my immune system?
Agents such as a potent multivitamin, NAC (N-acetyl cysteine), alpha lipoic acid and whey can all help offset oxidative stress and nutrient losses caused by HIV as well as the free radical generation and inflammation-related damage that some antiretroviral drugs cause.
For those with HIV, supplementation can be a valuable assist in restoring the body’s immune system, as evidenced by many studies, such as Dr. Jon Kaiser’s HIV Micronutrient Study, which showed a significant increase (26%) in the CD4 counts of the subjects who maintained a supplement regimen in addition to their regular medications. FYI: NYBC offers a “MAC Pack” (Micronutrient - Antioxidant Combination Pack), a product very similar to the one used in the study.
What supplements can be used to improve gut function?
Acidophilus or bifidus, glutamine, whey proteins, Saccharomyces boulardii (Florastor) and a good multi can all be important to offset gastrointestinal problems, whether HIV-related or of other origin.
What supplements can I use to manage my blood fats (cholesterol and triglyceride levels)?
“Bad cholesterol” (LDL) and triglycerides can be reduced with agents such as carnitine, pantethine, and fish oils. Niacin may be an excellent option which can also help increase HDL (“good cholesterol”). For heart health in general, aside from diet and exercise, CoEnzyme Q10 may also be of help (may also be useful in countering statin-related side effects).
What supplements are used to improve mental function and/or mood?
Acetylcarnitine, 5-HTP, tyrosine, ginkgo biloba, fish oils, SAM-e, DHEA, theanine, or St. John’s Wort may help mental function and alleviate depression, though each of these must be taken with some care (and not all together!)
See also: a full dossier on Memory Loss and Other Brain Problems from our Health+HIV section of Recommended Reading on the website www.newyorkbuyersclub.org; also recommended is the NYBC info sheet on Depression and supplements on this blog, under “Depression.”
What supplements can I use to combat fatigue?
Various conditions can cause fatigue, but in general, B12 (methylcobalamin) and Eleuthero (used to be “Siberian ginseng” - don’t use with high blood pressure!) may all help to improve energy. A good start may also be as simple as a good multivitamin!
For more information about the causes and treatments for fatigue, see our Fatigue Fact Sheet on the NYBC website.
What supplements can I use to stabilize my weight?
For those experiencing weight loss, whey proteins, carnitine and creatine plus CLA may all help - but of course especially in conjunction with a good diet and routine exercise! And we agree with Dr. Jon Kaiser and many others: resistance exercise remains an important component of a successful HIV management plan.
What supplements are used to treat nausea?
NYBC recommends ginger; marijuana, while effective, is not carried by the NYBC, as it is not yet approved for medical use in New York. For detailed information about the causes and treatments for nausea, see Health+HIV section of Recommended Reading on the NYBC website.
What supplements are used to improve liver function?

Liver function can be impaired due to several reasons, including disease, alcohol abuse, and the effects of some cholesterol-lowering drugs (statins).
While making sure there aren’t any interactions with your meds, supplements like milk thistle (Silymarin), NAC, alpha lipoic acid, Hepato-C or Hepato-Detox, Hepatoplex I or II, Ecliptex, SAM-e and Clear Heat are options to consider (again, not all at once!)
What supplements can be used to treat diarrhea?
NYBC suggests supplementing your diet with glutamine and calcium. For more information about the causes and other possible treatments, see our Fact Sheet about diarrhea in Recommended Reading, at www.newyorkbuyersclub.org.
What supplements can combat neuropathy?
Much scientific evidence now points to acetylcarnitine as an effective approach to countering neuropathy (numbness, tingling, or pain, usually in the extremities, which can be caused by HIV, diabetes or by some medications).

Our friends at the Canadian AIDS Treatment Information Exchange (CATIE) have released a noteworthy new publication, freely available online:

A Practical Guide to Nutrition for People Living With HIV

CATIE has a long-standing interest in nutritional supplements and HIV, and maintains on its website a collection of info sheets on a variety of relevant topics, from individual supplements to managing and preventing side effects of HAART with supplements.

This newly-issued guide brings together a wealth of accumulated knowledge in a very readable format, so overall we recommend it highly.

In the section on Vitamins, Minerals and Supplements, the new guide gives an overview of the following topics:

–micronutrient deficiencies and HIV

–antioxidants and HIV

–key vitamins and minerals for people with HIV (B vitamins, vitamins C, D, E, Calcium, Iron, Zinc, Selenium)

–other supplements used by people with HIV (alpha lipoic acid, carnitine and acetyl-l-carnitine, NAC, glutamine, probiotics, and CoQ10)

Very useful is the chart summarizing recommendations and dosing for these supplements, especially in light of more recent findings, which, for example, lead to the recommendation of a higher daily dose for Vitamin D (1000 IU), and more caution in the use of some items (such as Vitamin E and Zinc).

In addition to these pages on nutritional supplements for HIV, we also recommend the guide’s sections on “Managing the Effects of HIV and Meds on the Body,” “Managing Symptoms and Side Effects,” and “Hepatitis C Co-infection.”

Oh, and by the way: “Appendix D: Web Resources” gives a listing for the NYBC website:

New York Buyers Club (for information on nutrition, herbal and homeopathic supplements)  www.newyorkbuyersclub.org/index.html

Here’s a brief extract on “L-Carnitine and HIV,” as presented by www.aidsmap.com, the website of NAM*, the UK-based HIV/AIDS information exchange.

L-carnitine suppresses the production of tumour necrosis factor, which is responsible for wasting in HIV-positive people. Patients taking L-carnitine have reported reduced fatigue and greater energy.A six-month study of carnitine supplementation also significantly reduced the frequency of CD4 and CD8 T-cell death and produced higher CD4 cell counts. There is substantial evidence from an Italian research group that L-carnitine inhibits HIV-related cell death by targeting the immune system rather than the virus itself.

* From the www.aidsmap.com website: NAM is an award-winning, community-based organisation, which works from the UK. We deliver reliable and accurate HIV information across the world to HIV-positive people and to the professionals who treat, support and care for them. NAM is a UK registered charity number 1011220.

NAM’s publications are evidence-based and reviewed by two international medical panels and one of HIV-positive people, which ensure accuracy, balance, relevance, and accessibility.