NYBC’s HIV+Aging Series Continues, Now Online!

Jackie Haught offered personal insights into healing from her 30 years as an acupuncture practitioner.

In recognition of World AIDS Day 2014, New York Buyers’ Club hosted another installment in our ongoing free public seminar series, HIV+AGING. Held Tuesday December 2nd at City University of New York’s Graduate Center in Manhattan, the workshop was a great success and – like any good show – left folks craving more.

This thirst can now be slaked online – on NYBC’s new YouTube page, now featuring excerpts from the December 2 event – with more to come in the future!

 

HIV+AGING: What Can Complementary & Alternative Medicine Do for You? featured three outstanding and personable speakers presenting valuable information and insights gleaned from their years of experience in the field of health and HIV.

Panelists included: Dr. Vani Gandhi, Director of Integrative Medicine at Spencer Cox Center for Health at Mount Sinai’s St. Luke’s and Roosevelt Hospitals; Jackie Haught, Founder of Blue Lotus Acupuncture Center in NYC and an acupuncture practitioner for more than 30 years; and NYBC’s own Treatment Director, George Carter, also President of Foundation for Integrative AIDS Research.

Presentations were followed by a hearty and heartfelt Q&A session: attendees not only posed pertinent questions to the panelists, but also opened up with one another about their own personal “CAM” experiences, both positive and frustrating.

We are already planning the next event and welcome collaborators!

Tune in to New York Buyers Club’s new YouTube channel for excerpts from our latest HIV+AGING event and more.

Over 50 And Poz? Join The Club!

Insights on HIV+Aging From Our Resident Expert

Bette Davis was famous for her quip that “Old age ain’t no place for sissies.” Well, many of us, sissies or not, are getting there anyway, and Bette had no idea what kind of challenges would arise with HIV added to the mix.

NYBC is for anyone, with any chronic condition, who wants to maintain health. As a gay man living with hepatitis C, it has helped me enormously to keep my liver in good shape, bloodwork normal, and viral load extremely low. But we formed in the era of HIV. Members of NYBC’s Board of Directors and many in our membership are living with HIV and that remains a priority. Those who survived that era, and a new generation, are now all in mid-life or later, and rightfully full of questions.

The good news is that more and more people with HIV are living into old age. But, as our 2013 HIV+Aging event with ACRIA’s Dr. Stephen Karpiak underscored, there are many challenges that may arise. Some of these are familiar to older folks, but may appear earlier or more aggressively for those who are HIV+.

Much can be done to address these issues, especially by preventing them from arising in the first place. Prevention and mitigation strategies can start when you note risk factors in bloodwork or changes in your physical or mental and emotional condition. At our HIV+Aging event on December 2, NYBC presented comprehensive and holistic methods and means you may use to make life more livable. The information from the presentations available online and through printed summaries.

As always, the first step is you. How are you? How is your weight? Energy? Sexual energy (libido)? Muscle strength and tone? Thinking? Feeling and emotional state? Is there any pain? How is your bloodwork? 

Of course, it is becoming abundantly clear how vital diet and exercise are at the outset. There’s no one simple answer here, and that fact can be a big barrier or challenge for many people. Find help if you need it – but this can also be a place of great self-empowerment. Not just in the things you try to avoid (processed foods, soda, etc.), but in the things you choose to eat. And the good news is that there are many delicious and healthier choices.

A good rule of thumb is just to eat more fruits and vegetables, preferably fresh (or frozen, rather than canned). Fruits such as apples and berries are incredibly high in good phyto-nutrients, as are green and leafy vegetables such as kale and broccoli, and red, orange and yellow fruits and vegetables such as beets, carrots, and winter squash. These veggies are also a great source of the all-important fiber you need for good digestive function! You might think that watery fruits and veggies, such as watermelon, cucumber, and celery, are lower in nutrients, but on the contrary – they are among the most nutritious. Be sure to include legumes in your diet: beans of all kinds are among the healthiest foods you can eat.

Exercise is also something each of us needs to work on. Walking whenever possible, for example. Cycling, swimming or just doing exercises at home can make a very big difference not just for energy and lean tissue, but all the way down to the cellular level, helping your cells’ powerhouses, the mitochondria.

More and more research is pointing to an underlying common problem: inflammation. This is tested for in a variety of ways, mostly by bloodwork. Even when you are on a good regimen of antiretrovirals (ARV) that suppresses the viral load below detectability, the virus is still there and active. It is causing the body to respond in ways that continue to send out inflammatory signals.

These inflammatory processes have been associated with liver and kidney problems, gut trouble (where most of the HIV virus resides), digestive problems, neurological disease (from neuropathy to cognitive impairment), sugar control (diabetes), hormonal problems (low testosterone), and heart and cardiovascular risks.

Indeed, the cardiovascular risks that people with HIV face are heightened and significant. This is where bloodwork plays a key role. Get complete copies. and work with your doctor to understand it. Is your cholesterol high? What is your LDL (“bad cholesterol”) level? Is your “good cholesterol” (HDL) high enough? What is your vitamin D level? There are some other tests your doctor may consider that can help you understand how your blood moves, such as d-dimer and CRP (or hsCRP).

There’s a wide array of dietary supplements that may help you to address underlying inflammation, and data for some of these agents has been accumulating over the years and show good benefit. The very first is the use of a good, potent multivitamin/mineral formula to provide the essential building blocks your body needs. Even for people who are not on ARV, this simple intervention has been shown to significantly reduce the rate of disease progression to AIDS.

Other elements of a core anti-inflammation protocol include: fish oils (for blood fats and also, perhaps surprisingly, depression), niacin (for LDL and HDL), alpha lipoic acid and N-acetylcysteine (NAC) for inflammation, and acetylcarnitine for neuropathy.

More and more data are coming out on how important the “good” bacteria in our guts are and the value of using probiotics (like acidophilius or bifidus) in helping to heal the lining of the gut. Low Vitamin D levels in HIV have been linked to a wide range of problems, including more rapidly thinning bones. Having not just the D3 and calcium, but a good formula to help bone function, along with resistance exercise, can help keep your skeleton strong.

There’s much more than we can cover here. Crafting a regimen and approach that works for you, allowing that to evolve and develop over time will help to assure that you are, and remain, in the best health possible… so that you can get on with your life! And we hope that our summary of the key nutrients and agents that show benefit will help you on your way.

We are happy to discuss any questions you have to help you in making treatment choices. Consultations are free. Email us questions via the form below, or schedule a time to speak on the phone by leaving a message at (800) 650-4983.

George Carter
Treatment Director, New York Buyers’ Club

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NYBC to Continue!

JOIN OUR EFFORTS TO REVITALIZE!

Dear New York Buyers’ Club member,

You may have received an email from us last month informing you that we had made the painful decision to close the purchasing co-op component of the New York Buyers’ Club after ten years.

BUT NOW WE HAVE A PLAN FOR CONTINUING AND EXPANDING THE CO-OP!
A longtime member with significant nonprofit experience and passion about NYBC’s mission, Bob Lederer, has presented a plan that the board has accepted, to lead an effort to revitalize the organization. Bob will spend the next 3 months fundraising for and conducting a needs assessment of current and former Club members. To the extent the fundraising is successful, he will then spend up to another 7 months researching ways to strengthen the Club’s online and in-person marketing, and exploring partnerships in NYC and nationwide with healthcare organizations and groups representing people with HIV/AIDS, hepatitis C, cancer, diabetes, and other chronic illnesses. Bob estimates that this work, and a very necessary upgrade of our software to a state-of-the-art online commerce site so we can better compete with supplement retailers, will require a total of about $100,000.

We have already begun to receive generous contributions and pledges. So we have decided to keep the purchasing co-op open, even as we continue to reorganize, and, most importantly, as we continue our fundraising campaign to stabilize and strengthen NYBC. Please spread the word to your friends! (Order through our website or (800) 650-4983).

We don’t know whether this revitalization effort will succeed, but we want to give it our best shot. Key to the plan’s success will be the involvement of our members. That’s where you come in. There are several ways you can get involved, whether you are in New York or ANYWHERE.

Please email us at contact.nybc@newyorkbuyersclub.org and tell us how you can help us revitalize by:

• Joining us at the first of a series of NYBC Membership Meetings on Thursday, July 17 at 6:00 PM at DC 1707 (the union that houses us), 420 W. 45th St., in Manhattan, bet. 9th & 10th Aves. (room to be announced). Refreshments at 6 PM, meeting promptly at 6:30. We will put forward our preliminary analysis of fiscal and technological challenges that we face, as well as our initial revitalization plans, seek your input and suggestions, and break into working groups to begin the tasks of outreach, fundraising, and marketing that are necessary to revitalize this grassroots organization! We are also arranging for remote participation using conference call, Google Hangout (somewhat like Skype), and perhaps other online methods – details to follow. Please RSVP.

• Making a donation. Please be as generous as you can. We are grateful to those who have already stepped forward.

• Reaching out to your friends and colleagues to raise funds. But note that while we always welcome any contributions that people can comfortably afford to give, at this time we are focusing on obtaining major donations of $1,000 or more. So we’d welcome any introductions to such potential donors. We can send a board or staff member along with you to a meeting with such folks if you’d like.

• Helping with:
o grant writing
o writing/editing educational or marketing materials
o doing design/layout work
o computer work
o outreach to other health and community organizations about our services.

• Offering suggestions either for fundraising or marketing to expand the pool of people we serve.

• Sending us a short testimonial (1 to 4 sentences) that we can use publicly about why NYBC’s services and/or particular products have been particularly important in maintaining your health or staving off symptoms or side effects.

• Joining us in a follow-up briefing/work session by conference call and/or online services such as Google Hangout, to be held later in the summer (details to be announced).

You the members are our strength. Together, we can save and grow NYBC!
Thanks for all you’ve done,

George Carter, NYBC Administrator/Education Director
and the Board of Directors of NYBC

Response to Annals Hysteria

Aside from the recent Times article that once again spread a message of fear and misinformation, three articles were published in the Annals of Internal Medicine that were accompanied by an editorial verging on hysteria that proclaimed in stentorious tones: DON’T TAKE THEM!

Is that a justifiable conclusion? Well, when you look at the studies undertaken, I don’t believe the answer is that clearcut.  However, there also may be evidence here that clarifies who may and may not benefit from a simple micronutrient supplement.  At the end of the article are links to other analyses that rebut the claims made.

Let’s take a little closer look at each of these three negative studies. First, one relatively large study, using a low dose combination of often synthetic vitamin constituents (Centrum Silver) among older individuals (1). Using these modest doses, the upshot of the study, which was otherwise well-controlled and randomized, found no benefit of the use of the supplement in offsetting or mitigating cognitive decline over about 10-14 years. This was part of the large physician’s study and the study was limited by the potential that the doses may have been too low for an otherwise well-nourished population. Is this generalizable to older individuals who are well-nourished?

Perhaps so and taking a Centrum is therefore quite probably a waste of money if maintaining cognitive function is the goal. However, this is the same study that had previously reported that even this simple intervention modestly reduced the risk of cancer. Is that a useful endpoint? And indeed, the authors note that the study may need to be up to 20 years or longer to adequately detect any significant differences.

The third study was a meta-analysis or review of the literature that has pre-specified criteria for the selection of studies to be reviewed and then applies stastical analytic techniques to combine the results into a conclusion (3). They sought to assess the use of multivitamins in the primary prevention of cancer or cardiovascular disease. (Drug studies indeed more commonly look at the use of a drug in preventing a second heart attack, for example: secondary prevention.) Having done these, I know there is a certain degree of judgment in what gets selected and the method used for analysis. In this case, the authors note that the primary limitations are as they note is 1) they only assessed four RCTs and one cohort study that used radically different multivitamin/mineral formulas; one of these was a study that used a multi with only 5 ingredients another only 3 vitamins; 2) these were ONLY among otherwise healthy adults (not secondary prevention studies). The PHS-II study, discussed above, and another the SU.VI.MAX study were the two largest studies. So what can we conclude from this? That the extant data do not robustly support the use of a multi for these indications? Possibly, though they also note that the large PHS-II study that found a benefit for reducing cancer risk also detected a benefit for fatal myocardial infarction (adjusted hazard ratio, 0.61 [95% CI, 0.38 to 0.995]; P < 0.048). It may again be that these interventions are not up to the rather daunting task of achieving the endpoint of primary prevention—such studies probably need to be larger and a lot longer to come up with definitive conclusions.

They also reviewed single and paired studies. They noted that calcium alone is ineffective overall and possibly dangerous as a single supplement, but you throw in vitamin D, and gosh–lower mortality, though just barely (unadjusted RR 0.94, 95%? CI 0.87,1.01). It begins to beggar the imagination however to think these extremely disparate trials can be combined in any meaningful way when the populations, interventions and even primary outcomes were so significantly different.

The third study, however, did assess the effects of chelation therapy, with or without a multivitamin/mineral combination as secondary prevention for a heart attack (myocardial infarction) (3). It was a relatively short study with a median follow-up of 31 months in the vitamin group. The article notes that there was a huge dropout rate. Of the 853 in the vitamin arm and the 855 in the placebo arm, 584 and 547 were lost to follow up, respectively but the analysis was done “intent-to-treat” and all were included in the final analysis. Further, the study was not powered to see a difference with the few that were finally enrolled and completed the study—i.e., the initial proposal was to enroll 2,372 patients. And there was a small difference: while the primary and secondary outcomes did not achieve statistical significance, one can see in the Kaplan-Meier curves that there is a lower rate of events in the multi arm compared to the control by about 11% and that appears to improve as the study progresses: had it lasted longer or been better powered, might this trend have improved over time? We don’t know. The effect is relatively modest but the study wasn’t powered to detect this difference.

It seems to me that the latter study reflects reality and should calm the anxieties about people using supplements expressed by the editors (4). The upshot: Most people don’t want to take vitamins as suggested by the Lamas study. If THAT conclusion is generalizable, they have little to fear—but is that wise public policy?

The other important fact to note was that all the studies showed no evidence of adverse events. For the most part, side effects of the use of supplements are exceedingly rare and generally arise with the use of single agents (e.g., vitamin E or beta-carotene alone). Probably not the wisest way to use interventions designed to work in a biological way or in a system that is severely oxidatively stressed.

I would suggest several caveats. First, this is irrelevant to people living with HIV. Even a fairly simple formula can have a significant impact in slowing disease progression and reducing mortality (modestly) with the use of a multivitamin/mineral. The results of our meta-analysis will, we hope, be published soon. (This of course does NOT mean they are a replacement for antiretroviral therapy! Absolutely not.)

Second, these are SUPPLEMENTS – diet and access to clean water need to be the first consideration and far too many people have limited access to these basics while millions of others are forced to consume what is available on the market, which is often poor quality, processed, loaded with chemicals, preservatives, antibiotics, hormones and potentially dangerously genetically modified.

And finally, supplements are NOT drugs in key ways. They are supporting the body’s ability to fight disease while retaining an optimal level of health, especially when we are discussing the use of vitamins and minerals (as opposed to botanicals). Whether the optimal dosages have been determined, whether the findings are generalizable to everyone, whether there are groups, like people with HIV, for whom they are demonstrably beneficial—these are questions hardly answered to the point of declaring no one should ever use them as these editors have done.

Links:

Harvard rebuts the Annals of Internal Drugs.

http://www.hsph.harvard.edu/nutritionsource/multivitamin/

Linus Pauling Institute of Oregon State University.

http://lpi.oregonstate.edu/news/enoughisenough-response.html

Michael Mooney’s overview:

http://www.michaelmooney.net/Erroneous_Annals_Of_Internal_Medicine_Study_Says_Vitamins_Don%27t_Work.html

Industry’s Council for Responsible Nutrition:

http://www.nutraceuticalsworld.com/contents/view_blog/2013-12-18/enough-is-enough/?email_uid=dee72d271a/list_id=396c189146/

Michael Murray, ND:

http://doctormurray.com/?utm_source=WOW+-+Editorial+in+Medical+Journal+Promotes+Propaganda+Against+Multiple+Vitamin+&utm_campaign=CCmailing6-12-13&utm_medium=email

References:

1. Grodstein F, O’Brien J, Kang JH, et al. Long-Term Multivitamin Supplementation and Cognitive Function in Men: The Physicians’ Health Study II. Annals of Internal Medicine. 2013;159(12) :806-814-814. doi: 10.7326/0003-4819-159-12-201312170-00006.

2. Fortmann SP, Burda BU, Senger CA, Lin JS, Whitlock EP. Vitamin and Mineral Supplements in the Primary Prevention of Cardiovascular Disease and Cancer: An Updated Systematic Evidence Review for the U.S. Preventive Services Task Force. Ann Intern Med. Nov 12 2013;159(12):824-834-834. doi: 10.7326/0003-4819-159-12-201312170-00729.

3. Lamas GA, Boineau R, Goertz C, et al. Oral High-Dose Multivitamins and Minerals After Myocardial Infarction. Annals of Internal Medicine. 2013;159(12):797-805-805. doi: 10.7326/0003-4819-159-12-201312170-00004.

4. Guallar E, et al. Enough Is Enough: Stop Wasting Money on Vitamin and Mineral Supplements. Ann Intern Med. 2013;159(12): 850. Retrieved 19 Dec 2013 from http://annals.org/article.aspx?articleid=1789253

Top Ten Reasons to Support the New York Buyers’ Club

As we reach the finish of the New York Buyers’ Club fundraiser, we thought it was time to circulate the “Top Ten Reasons” to support NYBC–in case there are those of you out there who aren’t familiar with the unique contributions this nonprofit co-op and information exchange makes to the lives of people with HIV and/or Hepatitis C.

Learn more and make your donation at

http://www.indiegogo.com/projects/empower-people-with-hiv-hep-c-to-thrive

TOP TEN REASONS TO SUPPORT THE NEW YORK BUYERS’ CLUB

1. ThiolNAC. NYBC is the only source for this formula combining two widely recommended and well-researched antioxidants, alpha lipoic acid and NAC (N-acetylcysteine). ThiolNAC is especially useful for people with HIV and those with liver disease. NYBC’s combination formula reduces both cost and pill count.

2. NYBC stocks a unique lineup of high quality, specially formulated multivitamins, including Added Protection and Ultra Preventive Beta from Douglas Labs, and the Super Immune Multivitamin and Opti-Energy Easy Swallow from SuperNutrition, Member pricing for these multis is very low—in fact, Douglas asked us to hide the Member price from the general public!

3. NYBC’s MAC Pack and Opti-MAC Pack provide a mix of antioxidants and micronutrients very similar to those in K-PAX®, but at half the price. (Included in many formularies, K-PAX®, is based on Dr. Jon Kaiser’s 2006 journal article that reported an increase in CD4 count for people with HIV taking the nutrient combination.)

4. NYBC stocks a wide selection of Traditional Chinese Medicine supplements, from suppliers like Health Concerns, Pacific Biologic, and Zhang. (NOTE: Zhang products are available only if you log into the NYBC website as a Member.)

5. PharmaNAC®. This effervescent, extremely stable form of NAC (N-acetylcysteine) supports respiratory and immune function. In particular, it holds promise for people with cystic fibrosis, according to recent clinical trials conducted at Stanford. NYBC has stocked an effervescent form of NAC since 2004, based on its well-supported usefulness for chronic conditions.

6. NYBC specializes in probiotics like Florastor® and Jarro-Dophilus EPS. Probiotics support gastrointestinal health, a foundation for general health. And, a recent review in the Journal of the American Medical Association found probiotics effective for preventing and treating antibiotic-related diarrhea, a common side effect.

7. NYBC monitors and presents to its Members the latest research on supplements to support cardiovascular health, including fish oil, CoQ10, plant sterols, and Vitamin D.

8. NYBC annual membership is a tremendous bargain at $5 (low-income, unemployed), $10 (middle-income), or $25 (higher income). Do you know of any other organization that offers annual memberships as low as $5, yet gives you such significant savings?

9. The NYBC Blog alphabetically indexes more than 400 informative posts, providing the latest research news about supplements in an easy-to-read online format.

10. Yes, you can talk to a live person at NYBC! Our Treatment Director, George Carter, has two decades of experience with supplement research, especially for people with HIV and/or liver disease. Reach him at our toll-free number 800-650-4983.

Why Vitamins B12 and D3 Are Especially Important to People with HIV

Our friends at the Canadian AIDS Treatment Information Exchange (CATIE), a Canadian government-supported education and prevention organization, recently published an excellent guide to managing HIV medication side effects. This online guide covers the territory from body shape changes, to gastrointestinal disorders, to neurological effects, to emotional wellness, to fatigue, to sexual difficulties.

The Appendix to this guide focuses on two vitamins, both of which have been highlighted as especially important for people with HIV: B12 and D3. Deficiency of these two vitamins appears to be common among people with HIV, and supplementing to correct the deficiency can bring about major improvements in health. So it’s definitely worthwhile to check your B12 and D3 status, and, if you’re deficient, find a good supplementation strategy. Note that NYBC stocks both of these inexpensive vitamins: the methylcobalamin form of Vitamin B12 recommended below; and several strengths of Vitamin D3, including the commonly recommended D3 – 2500IU format.

Below are the CATIE recommendations:

Vitamin B12

A number of studies have shown that vitamin B12 is deficient in a large percentage of people with HIV, and the deficiency can begin early in the disease. Vitamin B12 deficiency can result in neurologic symptoms — for example, numbness, tingling and loss of dexterity — and the deterioration of mental function, which causes symptoms such as foggy thinking, memory loss, confusion, disorientation, depression, irrational anger and paranoia. Deficiency can also cause anemia. (See the section on Fatigue for more discussion of anemia.) It has also been linked to lower production of the hormone melatonin, which can affect the wake-sleep cycle.

If you have developed any of the emotional or mental symptoms mentioned above, especially combined with chronic fatigue, vitamin B12 deficiency could be contributing. This is especially true if you also have other symptoms that this deficiency can cause, including neuropathy, weakness and difficulty with balance or walking. On the other hand, these symptoms can also be associated with HIV itself, with hypothyroidism or advanced cases of syphilis called neurosyphilis. A thorough workup for all potential diagnoses is key to determining the cause.

Research at Yale University has shown that the standard blood test for vitamin B12 deficiency is not always reliable. Some people who appear to have “normal” blood levels are actually deficient, and could potentially benefit from supplementation.

The dose of vitamin B12 required varies from individual to individual and working with a doctor or naturopathic doctor to determine the correct dose is recommended. Vitamin B12 can be taken orally, by nasal gel or by injection. The best way to take it depends on the underlying cause of the deficiency, so it’s important to be properly assessed before starting supplements. For oral therapy, a typical recommendation is 1,000 to 2,000 mcg daily.

One way to know if supplementation can help you is to do a trial run of vitamin B12 supplementation for at least six to eight weeks. If you are using pills or sublingual lozenges, the most useful form of vitamin B12 is methylcobalamin. Talk to your doctor before starting any new supplement to make sure it is safe for you.

Some people will see improvements after a few days of taking vitamin B12 and may do well taking it in a tablet or lozenge that goes under the tongue. Others will need several months to see results and may need nasal gel or injections for the best improvements. For many people, supplementation has been a very important part of an approach to resolving mental and emotional problems.

Vitamin D

Some studies show that vitamin D deficiency, and often quite severe deficiency, is a common problem in people with HIV. Vitamin D is intimately linked with calcium levels, and deficiency has been linked to a number of health problems, including bone problems, depression, sleep problems, peripheral neuropathy, joint and muscle pain and muscle weakness. It is worth noting that in many of these cases there is a link between vitamin D and the health condition, but it is not certain that a lack of vitamin D causes the health problem.

A blood test can determine whether or not you are deficient in vitamin D. If you are taking vitamin D, the test will show whether you are taking a proper dose for health, while avoiding any risk of taking an amount that could be toxic (although research has shown that toxicity is highly unlikely, even in doses up to 10,000 IU daily when done under medical supervision). The cost of the test may not be covered by all provincial or territorial healthcare plans or may be covered only in certain situations. Check with your doctor for availability in your region.

The best test for vitamin D is the 25-hydroxyvitamin D blood test. There is some debate about the best levels of vitamin D, but most experts believe that the minimum value for health is between 50 and 75 nmol/l. Many people use supplements to boost their levels to more than 100 nmol/l.

While sunlight and fortified foods are two possible sources of vitamin D, the surest way to get adequate levels of this vitamin is by taking a supplement. The best dose to take depends on the person. A daily dose of 1,000 to 2,000 IU is common, but your doctor may recommend a lower or higher dose for you, depending on the level of vitamin D in your blood and any health conditions you might have. People should not take more than 4,000 IU per day without letting their doctor know. Look for the D3 form of the vitamin rather than the D2 form. Vitamin D3 is the active form of the vitamin and there is some evidence that people with HIV have difficulty converting vitamin D2 to vitamin D3. Historically, vitamin D3 supplements are less commonly associated with reports of toxicity than the D2 form.

It is best to do a baseline test so you know your initial level of vitamin D. Then, have regular follow-up tests to see if supplementation has gotten you to an optimal level and that you are not taking too much. Regular testing is the only way to be sure you attain — and then maintain — the optimal level for health.

With proper supplementation, problems caused by vitamin D deficiency can usually be efficiently reversed.

NYBC Fundraising Campaign Almost There – Please Donate Today to Take Us Over the Top!

The New York Buyers’ Club, your community-minded nutritional supplements co-op, provides access to low-cost, high-quality supplements especially selected for people with HIV, Hepatitis C and other chronic conditions. NYBC also reports on the best and most useful scientific information on using supplements to stay healthy–see, for example, our previous post on a ground-breaking November 2013 study in the Journal of the American Medical Association, which points to an important role for multivitamins and selenium as a means to slow progression of HIV.

Please help us continue our important work—donate today:

DONATE TO NEW YORK BUYERS’ CLUB

(NYBC is a 501c3 nonprofit organization recognized by the IRS, so your contributions are tax-deductible!)

You can also visit the NYBC website and online catalog at

http://www.newyorkbuyersclub.org/

New study in Journal of the American Medical Association shows that a multivitamin + selenium slows progression of HIV

The Journal of the American Medical Association has published a new study showing that a multivitamin and selenium combination supplement significantly reduced immune decline and morbidity in people with HIV who were treatment naïve (=not on antiretroviral/ARV therapy). This was a two year study with individuals who had CD4 counts above the recommended threshold for beginning ARV treatment. Over the two-year period, the combination of a daily multivitamin plus the mineral selenium cut by about half the risk of reaching the point where ARV therapy would be recommended (CD4 count of 200-250).

This study shows the importance of daily multivitamin + selenium supplementation for HIV+ people who are recently infected and/or have relatively high CD4 counts. It also provides further confirmation of the value of multivitamin, multimineral supplement strategies like the one included in the NYBC MAC-Pack.

CATIE booklet on side effects

CATIE, the venerable and sharp Canadian AIDS Treatment Information Exchange, has once again provided a terrific manual entitled A Practical Guide to HIV Drug Side Effects (link – http://www.catie.ca/en/practical-guides/hiv-drug-side-effects ).

The booklet, available as a pdf by clicking the link above, covers a wide array of topics. The language is clear and the layout is easy to follow. They provide information on mainstream medical and “alternative” or natural remedies to manage what can be debilitating side effects of HIV therapy.

Topics covered include the range found in the table of contents:

This Guide Is One Tool to Healthy Living
4 Dealing with Side Effects
8 My Health Map
10 Body Weight and Body Shape Changes
14 Diarrhea, Gas and bloating
17 Emotional wellness
21 Fatigue
24 Headaches
27 Menstrual changes
31 Mouth and throat problems
35 Muscle aches and pains
38 Nausea, vomiting and appetite loss
42 Nerve pain and numbness
44 Rash and other problems of the skin,
hair and nails
47 Sexual difficulties
49 Sleep problems
53 Less common side effects: lactic acidosis,
pancreatitis and abacavir hypersensitivity
55 Appendix: Vitamin B12 and Vitamin D
57 More Resources

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

The MAC-Pack: a unique multivitamin – antioxidant package for people with HIV

The New York Buyers’ Club continues to stock its multivitamin-antioxidant combination package, the MAC-Pack. At half the price of K-PAX, the MAC-Pack provides a similar package of multivitamin supplementation (with emphasis on the crucial B vitamins), together with acetylcarnitine (especially important, we believe, if you are dealing with neuropathy) and the antioxidant combo, alpha lipoic acid plus NAC (N-acetylcysteine).

A 2006 research study found an increase in CD4 count among HIV+ individuals using this type of multivitamin-antioxidant combination. Dr Jon Kaiser, the study’s author, subsequently developed K-PAX, which has been included on various Medicaid and ADAP formularies, but is often just too expensive for those who must buy it out of pocket.

For more details, see the NYBC entry:

MAC-Pack

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