NYBC Welcomes Nelson Vergel • Friday March 30

New York Buyers’ Club presents
A Conversation with Nelson Vergel:
The Latest on Living Healthy with HIV

Friday, March 30, 2012

5:30 – 7:30pm • 420 West 45th St, NYC

Free admission; light refreshments will be served

Nelson Vergel holds a chemical engineering degree and has over 20 years of experience in health education. He has been HIV+ since 1983.

He is the author of the books Built to Survive: A Comprehensive Guide to the Medical Use of Anabolic Therapies, Nutrition and Exercise for HIV + Men and Women and Testosterone: A Man’s Guide. He is the founder of the Body Positive Wellness Clinic in Houston, and serves as a member of the DHSS’ HIV treatment guidelines review panel, and moderates PozHealth, one of the largest online HIV health discussion groups.

Don’t miss this rare opportunity to ask a peer expert questions that can change your life!

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“Testosterone: A Man’s Guide” by Nelson Vergel

Nelson Vergel’s new book “Testosterone: A Man’s Guide” is especially useful for people with HIV who are considering testosterone therapy to address fatigue and other problems. A well-known HIV treatment activist and educator, Nelson currently moderates the pozhealth group on Yahoo Groups–the largest online forum of its kind. He also serves on the federal government (Department of Health and Human Services) HIV treatment guidelines panel. His knowledge and understanding of how best to use anabolic steroids and testosterone replacement therapy are unparalleled, but he is also extremely well-informed about a wide range of HIV therapies, including use of supplements for symptoms and side effects.

The book also has much useful information on “compounding pharmacies,” licensed pharmacies that do their own compounding or assembling of certain drugs. Compounding pharmacies are a little-known resource, yet often can provide standard quality drugs (such as testosterone) at a tiny fraction of the cost charged by regular pharmacies.

Purchase the book at the NYBC online store:

http://nybcsecure.org/product_info.php?cPath=22&products_id=407

And, you can read more about Nelson’s recent presentation, “Survivor Wisdom,” hosted by NYBC in New York City, on this blog, November 17, 2010.

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.]

Nelson Vergel Speaks on “Survivor Wisdom: Advances in Managing Side Effects, Living Well, and Aging with HIV” – November 9, 2010 at 6PM – CUNY Graduate Center, 365 Fifth Avenue, NY

The New York Buyers’ Club, a nonprofit nutritional supplements co-op, is sponsoring a free community health forum featuring Nelson Vergel, a 25+ year HIV survivor and a leading treatment advocate in HIV disease in the United States. He started his advocacy work in 1988 as a CDC-certified HIV counselor, and later founded his own nonprofit organization, Program for Wellness Restoration, to provide peer-based educational programs and online support to HIV+ people. He created what is now the largest online HIV health discussion group (Yahoo Groups’ pozhealth forum), and is currently an active member of the Department of Health and Human Services (DHHS) HIV Treatment Guidelines Panel.
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Title of Nelson Vergel’s presentation: SURVIVOR WISDOM: ADVANCES IN MANAGING SIDE EFFECTS, LIVING WELL, AND AGING WITH HIV

Date: TUESDAY, NOVEMBER 9, 2010

Time: 6:00 PM – 9:00 PM

PLACE: CUNY GRADUATE CENTER, 365 FIFTH AVE., NEW YORK – ROOM C202

SEATING IS LIMITED AT THIS EVENT, SO PLEASE RSVP TO RESERVE A PLACE AT
NELSON VERGEL TALK: RSVP

Here’s the flyer for this event–feel free to circulate:

Nelson Vergel Talk: November 9, 2010

“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.