Nelson Vergel: “Survivor Wisdom”

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

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

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

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

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

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

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

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

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

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

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

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

http://www.newyorkbuyersclub.org/

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

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Uridine fails in trial

A compound known as uridine or the brand name Nucleomaxx was of some interest to us at NYBC for helping to offset or manage the peripheral fat wasting of lipodystrophy. However, it was only available from Europe at an enormous cost. Unfortunately, a recent clinical trial failed to show any, except possibly a short-term benefit.

Grace McComsey’s team has done research in other areas around nutrition and HIV. The study results are discussed here.

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.

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.

Can carnitine reduce diabetes risk and improve body shape?

We were interested to read about a recent study on carnitine, diabetes risk and body shape in people with HIV, as reported on the CATIE (Canadian AIDS Treatment Information Exchange) website:

Some studies have found less-than-normal levels of carnitine in the blood of HIV positive people. Other studies have found that regular supplementation with carnitine can help to reduce abnormal levels of triglycerides, a fatty substance in the blood. Most of the studies focused on a formulation of carnitine called L-carnitine.

Long-term studies of a different formulation of carnitine—acetyl-L-carnitine—suggest that this substance can help damaged nerves recover from the toxicity of certain anti-HIV drugs such as d4T (Zerit, stavudine) and ddI (Videx EC, didanosine).

Now researchers in Milan, Italy, have conducted a small study with HIV positive volunteers and carnitine, to assess its effects on body composition and other related metabolic parameters. The results from this study suggest the possibility of a decreased risk for diabetes. Furthermore, the research team claims that carnitine supplements increased the fat content in the legs of volunteers. We urge readers to exercise caution when interpreting the results of this small study and we provide critical details later in this CATIE News bulletin.

Read more information on the study at:
http://www.catie.ca/catienews.nsf/00a48c8905294f0b8525717f00661eb8/4c5c394577db43018525763f00731b34!OpenDocument

Read more background information at the NYBC entries:

Acetylcarnitine

and

L-Carnitine

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.