COMPLEMENTARY THERAPY USE IN HIV-POSITIVE PEOPLE: AN ONLINE COMMUNITY SURVEY

An online survey conducted by our friend, Nelson Vergel and published in Antiviral Therapy. Here is the abstract:

COMPLEMENTARY THERAPY USE IN HIV-POSITIVE PEOPLE: AN ONLINE COMMUNITY SURVEY Antiviral Therapy 2009; 14(Suppl. 2):A34 (abstract no. P-11)

NR Vergel
Program for Wellness Restoration, Houston, TX, USA

OBJECTIVES: To assess the use and types of complementary therapies (CT) and their perceived benefits in a sample of HIV-positive members of a community online health listserve.

METHODS: Members of pozhealth at yahoogroups.com were sent a link to a 13 point questionnaire related to demographics, length of HIV infection, type of CT use, and reasons and perceived benefits of CT use.

RESULTS: The majority of the 135 survey participants were white males over 40 years of age who live in the USA and with least 15 years of HIV infection. The top reported CTs and their perceived benefits were exercise, nutritional supplements, herbs, massage, prayer/ spirituality, meditation, acupuncture, chiropractic and yoga. The most popular supplements and their perceived or studied benefits were fish oils (improved lipids), coenzyme Q-10 (stamina), multivitamins (general health), selenium (immune system protection), N-acetyl cysteine (immune system protection), alpha lipoic acid (improved insulin sensitivity and neuropathy), niacin (improved lipids), whey protein (lean body mass enhancement), acetyl-l-carnitine (improved lipids, neuropathy and cognitive function), DHEA (stamina and sexual function), probiotics (gastrointestinal health and diarrhoea), calcium (bone health and diarrhoea), vitamin D (bone health) and milk thistle (liver protection). A total of 84% believed that they were benefitting from CTs, and 87% informed their physicians about their CT use. CTs were personally funded by 72% of patients, whereas the rest had access to them via community programmes.

CONCLUSION: The majority of this sample of HIV-positive people used CTs and derived perceived benefits. Unfortunately, there are little to no efficacycontrolled data available for most CTs. Also lacking are interaction studies between most nutritional/herbal supplements and HIV antiretrovirals (ARVs). As CT use seems to be common and pervasive in the self-management of adverse events and quality of life, the HIV-positive community would benefit from more controlled studies on popular CTs and supplement interaction data with ARVs.

DISCUSSION: There are obvious limitations to this survey. The majority of participants were long-term survivor/white males over 40 years of age, which might represent those who access HIV-related health listserves on the internet. It is suggested that more information is obtained from other HIV patient populations via other outreach venues. A larger survey sample will be available at the conference.

Advertisements

NEW! Managing and Preventing HIV Med Side-Effects

To mark its fifth anniversary, the New York Buyers’ Club has prepared a special edition of SUPPLEMENT. In it you will find a concise Guide to managing and preventing HIV medication side effects with supplements and other complementary and alternative therapies.

This is an invaluable introduction to how nutritional supplements can be used to counter those side effects that can make life miserable–or even disrupt treatment adherence–in people taking antiretroviral medications for HIV.

Read about approaches to dealing with diarrhea, nausea, heart health issues, diabetes, insomnia, fatigue, liver stress, lipodystrophy, anxiety and depression.

This FREE Guide is available online at:

http://newyorkbuyersclub.org/

On the NYBC website you can also SUBSCRIBE to the nonprofit co-op’s quarterly FREE newsletter, THE SUPPLEMENT, which continues to offer a unique perspective on current evidence-based use of supplements for chronic conditions including cardiovascular disease, diabetes/insulin resistance, hepatitis and other liver conditions, anxiety/depression, osteoarthritis, cognitive and neurorological issues, and gastrointestinal dysfunction.

Bioperine for nutrient absorption

Bioperine, an extract of the fruit of the plant that yields black pepper, has connections to the Ayurvedic medicine tradition of India. It is frequently recommended for its ability to increase absorption of difficult-to-absorb nutrients like CoQ10, and may enhance absorption of other supplements as well. Here is a brief account of the whys and hows of its use:

Bioperine (Allergy Research Group). Each bottle, 60 vegetarian capsules. Each tablet, 25 mg black pepper fruit extract (bioperine). Suggested use it to take 1 tablet, with a multi, coQ10, etc., once or twice per day (not more than that). If possible, about an hour or so before you eat to enhance absorption.

Bioperine is the brand name for an extract from the fruit of the plant that produces black pepper (Piper nigrum). It is known generically as piperine. According to research conducted by the manufacturer, bioperine substantially increases the absorption of selenium (30%), beta carotene (60%), vitamin B6 (140-250%) as well as coenzyme Q10. These studies measure the amount found in plasma of these nutrients, comparing the amount found with or without the use of Bioperine.

One theoretical concern is that using this may increase blood levels of some drugs as well. On the good side, could this be a replacement for help reduce the dose of a ritonavir boost for example?

Sabinsa (the supplier) researchers claim it has no effect on the absorption of drugs, stating that research in India found that, Bioperine taken for enhancing nutrient absorption does not significantly affect the level of prescription drugs. Why this would be so is not clear. They also indicate that it is important that the bioperine be taken at the same time as the nutrient supplements, emphasizing that with bioperine, TIMING IS EVERYTHING.

What its mechanism of action is is not clear to us (except they call it a thermonutrient). However, it is an inexpensive addition and may permit lowering dosages of various nutrients. This also conforms with the traditional use of black pepper in many different Ayurvedic recipes. In a study in India, it was shown to be protective of the liver through antioxidant activity but not as powerful as silymarin. It may be best to err on the side of safety and NOT use this with pharmaceutical drugs; however, by contrast, it may help with protease inhibitors which do not get into the plasma well.

For further information, please see the NYBC entry:

Bioperine

SUPPLEMENTS AND OTHER SMART STRATEGIES FOR LONGER LIVING – A panel discussion on traditional, complementary and alternative treatments for HIV

We reprint below our report on this June 2009 forum, which brought together a range of views on managing HIV:

SUPPLEMENTS AND OTHER SMART STRATEGIES FOR LONGER LIVING was the title of a panel discussion on traditional, complementary and alternative therapies for HIV presented on June 25, 2009 by the New York Buyers’ Club in celebration of its fifth anniversary. The event brought together experts whose knowledge spans East and West, and whose experience ranges from community organizing and scientific writing, to clinical research and the practice of medicine, whether as an M.D. or as a licensed acupuncturist and specialist in Chinese herbalism.

NYBC was especially proud to host our Guest of Honor, Sunil Pant, the first openly gay Member of Parliament in Nepal, and Founder/Director of the HIV-support organization the Blue Diamond Society, which was recognized by the International Gay and Lesbian Human Rights Commission in 2007 as “one of the most effective human rights groups in the world.” At the start of the panel discussion, our Guest of Honor gave a moving account of the work he and his organization have done over the last decade in securing rights for sexual minorities in Nepal, and in fighting for decent treatment of Nepalis with HIV/AIDS. Sunil also took a moment to recall the many years he has known and worked with our own George Carter, who has directed NYBC efforts to provide supplements and other aid to BDS.

We also felt privileged to hear from our other panelists: Dr. Paul Bellman, a NYC physician who has been treating people with HIV/AIDS since the start of the epidemic; Tim Horn, President and Editor of AIDSmeds.com; Alex Brameier, a licensed acupuncturist and herbalist; and George Carter, Director of the Foundation for Integrative AIDS Research. It’s true that the first two of these panelists are in the mainstream of AIDS treatment practice, by which we only mean to say that their main area of expertise is antiretroviral pharmaceuticals. Yet Dr. Bellman also spoke of the usefulness of several supplements that NYBC and its predecessor DAAIR have long recommended: alpha lipoic acid, carnitine, and CoQ10. Tim Horn, whose website focuses largely on pharmaceutical treatments, nevertheless also acknowledged that the “holistic” approach to long-term health for people with HIV makes a lot of sense. And he went on to say that he recognizes that a whole range of “therapies” (including even diet and exercise) may be needed to address worrisome trends in heart and lung disease among people with HIV who are taking ARVs.

Alex Brameier, the Lic. Ac. on our panel, engaged our audience with an impromptu survey on how people view their acupuncture treatments. She then discussed some of the conditions that lend themselves to acupuncture, based on clinical experience: pain relief, stress reduction, neurological and musculoskeletal disorders, to name a few. Very useful as well was the contrast she drew between acupuncture as practiced in China and Japan (where treatment may be daily or every other day), and the West, where time and financial constraints often dictate otherwise. Her tips on how to get the best out of acupuncture and how acupuncture and herbs can work together were also very valuable.

Last but not least among our contributors was George Carter, who’s had two decades of experience with supplements, from clinical research to acting as NYBC Treatment Director. George, as all who know him can attest, is nothing if not thorough, and for this event he prepared a “Short Primer on Side Effects,” a compact but comprehensive review of HIV medication side effects, ranging from malabsorption/diarrhea//nausea, to lipid abnormalities (of concern for cardiovascular health), to fatigue and insomnia, to insulin resistance/diabetes, to liver damage, to bone issues, to peripheral neuropathy. We hope to produce this super-useful handout as a handy pocket guide in the near future, so stay tuned.

An inspirational, lively, and (if we do say so ourselves) immensely informative event. If you were there, thanks for coming! And if not–we certainly hope to see you at the next one.

Reprinted from the SUMMER 2009 SUPPLEMENT: Newsletter of the New York Buyers’ Club, which can be read in its entirety at

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

In addition to the piece above, this issue contains a report on how research on diet and nutrition has led to new knowledge about supplements (“Are You Ready to Join the Food Revolution?”), and a short review on HIV and cognitive impairment.

Note: Email subscriptions to THE SUPPLEMENT are free to NYBC members.

CoQ10 – 200mg

NYBC has recently decided to stock CoQ10 in a 200mg/capsule format (Jarrow)</, since many research studies involve supplementation at that daily level or even higher. As a not-for-profit purchasing co-op, NYBC seeks low-cost options for people choosing to use supplements, so this format from the well-regarded Jarrow line seemed a good value as well.

An extract from the NYBC write-up on this supplement–

Clinical studies have shown repeatedly that coenzyme Q10 has potent abilities to assist the heart muscle, and as an adjunct treatment for angina, congestive heart failure, arrhythmia, hypertension (high blood pressure), and drug toxicity.

Research has also shown that as cellular levels of coenzyme Q10 decrease, HIV disease progresses. Other studies have documented its immune restorative qualities, including restoration of T cell function. Absorption of dietary fat soluble coenzyme Q10, due to the high inflammatory cytokine levels, is disrupted, so supplementation may help. Many PWHIV believe CoQ10 is an important nutrient to aid in detoxification if one uses nucleoside analogues (AZT ddI, ddC, d4T, etc.) or any toxic drug. Due to this impaired absorption, it’s best to take a form of CoQ10 that is mixed with lecithin or some other fat to improve its uptake. However, it may be that only very high doses will help (like 200-400 mg a day!) This will not be cheap.

CoQ10 is very helpful in conjunction with certain drugs. Studies have shown clear benefit when used with a heart toxic chemotherapy drug called adriamycin. In addition, some have suggested that it is very important to use CoQ10 when taking one of the statin drugs, used to manage high LDL cholesterol since the level of CoQ10 in the blood is depleted when using this class of drugs.

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.)

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

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



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

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

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

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

muscle inflammation, pain and weakness
fatigue
liver damage

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

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