Alternatives to NYBC

Alternative Resources to NYBC

In the vacuum created for our members by the closing of the store, we wanted to make available a list of some alternative resources.

Vitamins, Minerals, Amino Acids

Some of our featured vendors include Jarrow, Super Nutrition, Montiff, TwinLabs, Douglas Labs and Source Naturals. Of these, the best quality consistently has been from Super Nutrition, Jarrow and Montiff. The others have either not been tested or occasionally come up with minor problems according to our own testing (very limited), and Consumerlab upon whom we have relied for assuring identity, potency and purity.

Perhaps rather unfortunately in some respects, you can find most Jarrow products now online through Amazon.com. Often the prices are as good as what NYBC offered and in a few cases, better (which is largely why we are closing the store.)

Over the years, Michael Mooney’s family, through Super Nutrition, has been providing excellent information about and high quality products and formulas that are some of my favorite multis. They use excellent and bioavailable forms of vitamins and minerals. Lately, I’m using their one-a-day multi, Simply One for Men over 50.

Montiff, Inc., headed by Don Tyson who did early work in assessing blood levels of amino acids among people living with HIV, has products online. This site will allow you to review their list of products. If you call their toll-free number and indicate that you were an NYBC member, they will offer a substantial discount (1-877-820-4883).  They have been our source for N-acetylcysteine (NAC), alpha lipoic acid, glutamine (in bulk as well), and acetyl-carnitine.  Montiff also was the company we used to contract manufacture NYBC’s ThiolNAC combo of NAC and alpha lipoic acid, now no longer available.

For those using our Mac Pack version of Jon Kaiser’s K-PAX, get the original! It’s a good blend and many states have it available through Medicaid or ADAP, sometimes as an “enteral” product (the powder), while others also have the tablets available.

Douglas Labs unfortunately is only available on the net at their VERY high internet fixed prices. You’ll have to find a practitioner who has them available and maybe get a better price. Otherwise, much of what they make is available from other vendors at lower cost.

Our other vendors, like TwinLab and Nature’s Way, are also general available online at sites like amazon.com.  One good aggregate one-stop shop for most vendors is Swanson, that some swear has some of the best prices on the internet. For those in New York shopping at brick-and-mortar stores, Westerly is a good option. VitaminShoppe often has good sales and sometimes 2-for-1 sales; their own brand products seem to be fairly good quality as well. And if you are interested in joining Park Slope Food Coop, they also have an extensive supplements section (including Bach Flower Remedies and homeopathic remedies) at their usual steep discount (though not as good as NYBC was for many items.)

Of course, don’t forget about getting some supplements covered by health insurance, where possible. For that, you need a doctor’s prescription, and for our members in New York, we can highly recommend Vani Gandhi, M.D. at the Spencer Cox clinic on the Upper West Side.

Herbs and Botanicals

For our friends in New York City, we wish to point you to practitioners of Chinese medicine who have long been friends of NYBC and helped us in very material ways. Each has also access to some of the Chinese herbal formulas so many have found helpful over the years. These include:

Mark Kuebel, LAc

Alex Brameier, LAc

Jackie Haught, LAc

One member noted trying to obtain Natura-mune through a website called Health Designs, but had some difficulty. So he called Pacific Biologic—this may be a good way to get the best possible price:

Health Concerns also has a long history of working with the HIV community. Some of their formulas were developed by Misha Cohen, LAc, in San Francisco. You can contact them through their website but again, probably better to get via a practitioner—and this assures you get a formula tailored for YOUR personal symptoms and situation.

Many practitioners have these brands, and other great ones like Seven Forests, available. As noted above,  it makes a great deal of sense to see a good practitioner, particularly one knowledgeable about HIV or hepatitis, to get a formula designed specifically for your needs. With Chinese, Ayurvedic and other traditional systems of medicine, this formula can change as your body is brought back into a better balance.

Quality

As we mentioned, NYBC relied on consumerlab.com to provide information on their testing results. You should also look closely at capsules and tablets to see if there is any sign of mold, or if it smells or looks funny. This and piercing a gel cap of fish or other oil to smell for rancidity are at-home tests you can perform.

You can also check out the Food & Drug Administration, though we should advocate for them to do far more testing than they already do. Also, the National Center for Complementary and Integrative Health can provide information.

However, both of these sites have rather significant limitations and a degree of caution that is unhelpful for those of us who have had to fly by the seat of our pants. At the end of the day, remember that you are your own n-of-1:  try to understand what you expect any supplement to do, and see if you can follow that by assessing blood work changes, symptoms and effects.

As NYBC moves forward into its new mission as an educational resource, we will endeavor to keep abreast of best practices, practitioners and resources.

NYBC: Store Closing Announcement

We are sad to announce that NYBC will be closing our members’ purchasing cooperative by the end of July. The world of internet commerce has changed drastically since we began NYBC in the spring of 2004 in the wake of the closure of DAAIR (Direct AIDS Alternative Information Resources).

The good news is that over the last 11 years, many new online sources of low-cost nutritional supplements have become available. While this has created significant market competition for NYBC’s co-op, it means as good or better prices are available. We will be preparing a list of resources for our members to consider for their ongoing and future needs.

As a result of our decision to close the co-op, we will not be replenishing our current inventory. Please see our website–what is online is what we have left–and it is going fast! So please place all orders by July 31, after which time our online shopping cart will no longer be functional.

There is other good news: NYBC is not going away!  While there is a vast amount of information about nutritional supplements on the internet, much of it can be of dubious quality. We plan to continue our mission to continue providing unbiased, evidence-based information on ways people living with chronic diseases such as HIV and hepatitis can continue to survive and thrive using supplements.

We are proud of the work we have been able to accomplish since our founding. And we are especially grateful and honored to have come to know so many of you: our members, patrons, well-wishers, and funders. Your journeys with us have touched us all deeply, and we look forward to continuing our relationships into the future.

With our deepest thanks and appreciation for your membership and support,
The Staff and Board of
The New York Buyers’ Club

MSM in HAND

HIV-Associated Neurolocognitive Disorders (HAND), as well as peripheral neuropathy, affects a significant number of people with HIV. It may manifest mildly or progress to more serious conditions. These include peripheral nerve pain (neuropathy), coordination problems, cognitive and memory trouble to dementia—and this sometimes in spite of antiretroviral therapy.

Research is uncovering how this disease manifests—and some ideas about how to intervene. These data underscore aspects of HIV disease that contribute significantly to the progression of the disease, resulting in damage to the neurological system manifesting as cognitive defects and/or peripheral neuropathies. Part of what happens with HIV is that the body’s response is excessive, causing increased oxidative stress.

HIV proteins like tat can damage cells by inhibiting a regulator gene of redox reactions and detoxification known as nrf2. Normally, when this gene is induced (activated) in response to increased amounts of free radicals, it in turn activates other genes like SOD and catalase, the body’s system of transforming potentially damaging free radicals into water or other innocuous substances. This helps protect healthy cells–and often neurons, not infected by HIV directly, are damaged by the release of excessive amounts of free radicals.

Maintaining an appropriate redox balance is key, as these free radicals are also part of the bodies immune defenses that help to kill infected cells. One problem in HIV is that many cells that die, most CD4 T-lymphocytes and neurons, for example, aren’t infected. But they die due in part to oxidative stress

So what to do? There are data on ways to manage neuropathy, including using 3 grams per day of acetylcarnitine or the judicious use of Cannabis sativa. A drug derived from Tripterygium wilfordii called Celastrol has shown some early promise. In addition, the Men Who Have Sex with Men supplement can help! Woops, wrong acronym. MSM here represents methylsulfonylmethane, often used in formulae to help join function or on its own. Unfortunately, these are only animal studies so we don’t have information on how or if it will help in offsetting HIV-related cognitive disorder.

Could we ever get a clinical trial?

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Abstracts:

Am J Transl Res. 2015 Feb 15;7(2):328-38. eCollection 2015.

MSM ameliorates HIV-1 Tat induced neuronal oxidative stress via rebalance of the glutathione cycle.

Abstract

HIV-1 Tat protein is a key neuropathological element in HIV associated neurogcognitive disorders (HAND); a type of cognitive syndrome thought to be at least partially mediated by increased levels of brain reactive oxygen species (ROS) and nitric oxide (NO). Methylsulfonylmethane (MSM) is a sulfur-containing compound known to reduce oxidative stress. This study was conducted to determine whether administration of MSM attenuates HIV-1 Tat induced oxidative stress in mouse neuronal cells. MSM treatment significantly decreased neuronal cell NO and ROS secretion. Further, MSM significantly reversed HIV-1 Tat mediated reductions in reduced glutathione (GSH) as well as HIV-1 Tat mediated increases in oxidized glutathione (GSSG). In addition, Tat reduced nuclear translocation of nuclear factor-erythroid 2 p45-related factor 2 (Nrf2), a key nuclear promoter of antioxidant activity, while MSM increased its translocation to the nucleus in the presence of Tat. These results suggest that HIV-1 Tat reduces the resiliency of neuron cells to oxidative stress which can be reversed by MSM. Given the clinical safety of MSM, future preclinical in vivo studies will be required to further confirm these results in effort to validate MSM as a neuroprotectant in patients at risk of, or who are already diagnosed with, HAND.

***

Toxicol Appl Pharmacol. 2014 Oct 1;280(1):42-52. doi: 10.1016/j.taap.2014.07.010. Epub 2014 Jul 23.

Celastrol ameliorates HIV-1 Tat-induced inflammatory responses via NF-kappaB and AP-1 inhibition and heme oxygenase-1 induction in astrocytes.

Abstract

HIV-1 Tat causes extensive neuroinflammation that may progress to AIDS-related encephalitis and dementia. Celastrol possesses various biological activities such as anti-oxidant, anti-tumor, and anti-inflammatory activities. In this study, we investigated the modulatory effects of celastrol on HIV-1 Tat-induced inflammatory responses and the molecular mechanisms underlying its action in astrocytes. Pre-treatment of CRT-MG human astroglioma cells with celastrol significantly inhibited HIV-1 Tat-induced expression of ICAM-1/VCAM-1 and subsequent monocyte adhesiveness in CRT-MG cells. In addition, celastrol suppressed HIV-1 Tat-induced expression of pro-inflammatory chemokines, such as CXCL10, IL-8, and MCP-1. Celastrol decreased HIV-1 Tat-induced activation of JNK MAPK, AP-1, and NF-κB. Furthermore, celastrol induced mRNA and protein expression of HO-1 as well as Nrf2 activation. Blockage of HO-1 expression using siRNA reversed the inhibitory effect of celastrol on HIV-1 Tat-induced inflammatory responses. These results suggest that celastrol has regulatory effects on HIV-1 Tat-induced inflammatory responses by blocking the JNK MAPK-AP-1/NF-κB signaling pathways and inducing HO-1 expression in astrocytes.

Micronutrient Article Error

One of the figures in our micronutrient article is wrong–and in fact, it is perhaps the most important one of the paper. The correct figure is attached below and is the one that we originally submitted. The error doesn’t change our findings–these figures have the effect of showing what we found in a graphic. The wrong one tells the story that we found nothing important! The correct one shows how robust our findings actually are.

We are in the process of correcting the error with PLoSOne and will be preparing a more formal response. In the process of re-sizing the figure for editing purposes this past February, an earlier figure was used. This version appears to show no effect from the intervention.

Some might presume that this means we merely cherry-picked the data to find a palatable solution. That would be incorrect as the initial analysis was faulty. Further, the frequentist analysis underscores by comparison our findings of a robust effect.

Our team had, in setting up the analysis, initially used a VERY flat prior probability. This had the effect of squashing the data and distorting such that it no longer reflected the original findings of the studies we were analysing. The reason we can be sure this is the case is that the result did not resemble the original data. I.e., the original data was in fact, for example, Fawzi 0.56 (0.32, 0.98). You can see that clearly in the frequentist analysis (supplementary figure 1).

Upon adjusting to a more accurate scale factor, the result was a strong effect for the impact of a simple multi on the rate of HIV disease progression.

S1 Fig. Forest plot of rate of HIV disease progression, frequentist analysis.

A frequentist analysis yielded a similar 40% reduction in the rate of progression to clinical disease stages (RR 0.60, 95% CI 0.46, 0.78; p = 0.00008) for subjects on MNS, when including supplement arms that included a MNS alone or MNS plus either zinc or selenium.

doi:10.1371/journal.pone.0120113.s001

This underscores also the importance of scrutinizing closely the way data are handled and analyzed. As I have learned over the years in doing this work, a preferred answer may indeed be produced. But in this case, the answer reflects the actual data of the original studies.

George M. Carter

Fig. 2 Bayesian Analysis

Multi Slows Disease Progression

A meta-analysis has been published that reviewed the clinical studies that looked at the use of a multivitamin in people with HIV. There was enough data of people not yet on antiretrovirals and we showed a significant effect on how fast AIDS develops after HIV infection (the progression rate).

CONCLUSIONS: MNS significantly and substantially slows disease progression in HIV+ adults not on ARV, and possibly reduces mortality. Micronutrient supplements are effective in reducing progression with a posterior probability of 97.9%. Considering MNS low cost and lack of adverse effects, MNS should be standard of care for HIV+ adults not yet on ARV.

There was also evidence that it could reduce the risk of dying (mortality). There weren’t enough studies to assess the effect of a multi among those on ARV, though these studies are also discussed.

The first author of the study was NYBC’s George Carter, who was working as part of an NIH grant with colleagues at Mount Sinai in New York.

 

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