October #85 : Tough Act to Swallow - by Mark Leydorf

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Table of Contents

Tough Act to Swallow

Worlds Collide

Alone on the Range

Two-Timin' Man

New Head, Same Hydra?

Mup Roar

Land of Oz

Merger Mania

AZT Fraud?

Off The Cuffs

Red Scare

Hardish Times

Fatwa Skinny

What's In A...?

Epis Appeal

Mining for Meaning

Losing Control

No Guest List

Hep Hooray

Home Remedy

Did You Hear?

Status Seeking

Editor's Letter

Mailbox

Obituaries

Sins of Transmission

Porn Again



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


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October 2002

Tough Act to Swallow

by Mark Leydorf

Multis and powders and herbs -- oh, jeez! Angling to nail exactly which nutrients HIVers need beyond what's on their plate, intrepid New Yorker Mark Leydorf braves the dietary-supplement jungle -- and braces to take a new kind of Big Gulp.

I CONFRONT A HEALTHY QUESTION

I just turned 34. If you aren't a fatalistic lapsed Catholic like me, you might not know that Christ died at 33, the age I predicted would also be my limit seven years ago when I got HIV. Realizing that I'm going to be around longer than planned, I've started making changes: career adjustments, yoga, gardening and other steps (12, actually). But my diet remains a disaster. The last thing I cooked was a hot-oil treatment for my hair. You see, I live in Manhattan, where evil trolls sneak around setting the clocks ahead and snipping 10-minute scraps out of every pursuit except waiting for the subway in a heat wave. In other words, I'm just too busy.

On the advice of the first HIV specialist I ever saw, I've taken a daily multivitamin for the past seven years. Oh, and I buy that trendily packaged, supposedly nutritionally enhanced Vitamin Water instead of Gatorade, though deep down I fear I'm being suckered. But a fellow virally enhanced friend who's big on that thing called "wellness" recently put a disturbing question to me: Can I really expect a Centrum multi to haul me over the sludge of take-out, coffee and antiretrovirals in my guts, day after stressful day?

OK, he didn't use those exact words. But he did get me thinking...


I CONFRONT MORE QUESTIONS

I start looking where I find everything else, from plane tickets to playmates: the Internet. Right away I discover this disturbing fact: The world of dietary supplements (DS) is rife with its own hyperbolic language and unproved claims and warnings. The truth is, DS shoppers today have very little guidance from "on high": Supplements are not FDA approved; in fact, according to 1994's wimpy Dietary Supplement and Health Education Act (DSHEA), no one oversees their manufacture except, uh, their manufacturers. Currently there's megapressure on the FDA from both consumer advocates and the DS industry (which wants more credibility) to put into effect existing GMP (Good Manufacturing Practices) guidelines, which would evaluate DS production by standardized measures such as those for the food and drug industries. Until then, we wellness-wooing Americans are left to wade through a swamp of endorsements, suggestions and caveat emptors before bringing common sense to bear upon how best to part with our DS dollars. Short of checking labels for the "USP" seal of approval from the venerable nonprofit U.S. Pharmacopeia or screening brands at www.ConsumerLab.com, you may as well be in the Wild West once you've hit the world of V&S.

But that's just half the problem, because no federal agency has yet come up with official guidelines for what kinds of supplementation HIVers need, never mind how much. All that may change soon, however: Bay Area HIV doc Mary Romeyn, MD, author of the seminal Nutrition and HIV, says that NIH-driven nutrition guidelines (of which she is a co-creator) for HIVers will be published in the coming months in peer-reviewed medical journals. Now that will be a major step. But in the meantime, we HIVers must select our supplements amidst a sea of research question marks.

Eight Is Enough

Here's what the experts call the top HIV-crucial nutrients, along with estimated RDVs for HIVers:

1. Antioxidant vitamins: B complexes (25-50 mg), beta carotene (20,000 IU), C (1,000 mg), E (800-1,000 IU). The Bs help repair livers, beta carotene becomes immune-boosting nontoxic vitamin A, and C and E pump up one another's antioxidant punch. But for HIVers on a PI (especially Agenerase), the amount of E in a good multi is enough.

2. Antioxidant minerals: selenium (350 mcg), magnesium (350 mg), zinc (15 mg). The first is linked with longer life; the second combats fatigue and the blues; the third helps heal wounds and beefs up prostate and immune function -- but one study showed that zinc above 15 mg may spur HIV.

3. Glutamine (10-15 g). This amino acid builds the necessary-but-not-available-in-stores antioxidant glutathione, low levels of which are linked to faster HIV progression. It also brings HIVers with PI-induced diarrhea back onto solid ground.

4. N-acetyl cysteine/NAC (2-5 g). Another key glutathione-builder. Studies of monkeys with SIV found that nonprogressors tend to have normal cysteine and glutathione levels.

5. Alpha-lipoic acid (300-600 mg). A gold-star nutrient. Not only helps the body build glutathione, it's also a strong antioxidant that protects the liver and may relieve neuropathy.

6. L-carnitine (1 g). Helps break down fat into energy, which makes it key for HIVers with wasting who are burning muscle instead of fat.

7. Calcium (2,000 mg). Major mineral not just for women but all HIVers on HAART to fight bone-disorder side effects.

8. Coenzyme Q10/coQ10 (100-300 mg). Critical for immune function, good gums and combating high cholesterol.

-- ML

One thing research has pretty much confirmed is that, for reasons I'll soon explain, HIVers have marked nutritional deficiencies. That's why most nutrition experts believe that federal RDVs (recommended daily values) -- the percentage of which all supplement labels tell you how much of each nutrient they provide -- are inadequate for HIVers. In fact, according to Romeyn, they're not adequate for anyone except those in perfect health and nutritional balance (see "Multi Madness" below).

But FDA and RDA negligence be damned! Five years ago, when I started my cocktail, I was comfortable surrendering my well-being to the Higher Powers of Big Pharma. Today, though my numbers are great -- 900 CD4 cells and an undetectable viral load -- I have mild neuropathy, tummy troubles and leg veins a chimp could swing from. And that's nothing: Friends are succumbing to positively Transylvanian side effects such as bone disorders and lactic acidosis. Shouldn't I take another walk down the vitamin aisle?

So, enticed by the promise of a healthier, longer life (and maybe even powder-powered abs of steel), I begin a search for my own Holy Grail: an affordable, foolproof HIVer's dietary-supplement regimen, a plan that rises above the din of personal opinion, a 2002 gold standard.


I AM LEFT FEELING DEPLETED

The cyber superhighway also leads me to this unsurprising consensus: HIVers have special nutritional needs! Why? One, we're fighting a chronic infection, so we burn more calories and need more nutrients than civilians. Two, our intestines are under stress because both HIV and the meds degrade the body's ability to absorb nutrients from food. Three, the antiretrovirals most of us are taking produce storms of "free radicals" -- unstable molecules that impair normal cell functioning and are thought to lead, over time, to cancers. Antioxidants -- free radical-neutralizing nutrients including vitamins C, E, B-12 and thiamin, plus the minerals selenium and zinc -- diminish, allowing these nasties to wreak havoc throughout the body.

If I've ever felt inadequate, I do now. I put in a call to Mark Katz, MD, regional HIV physician coordinator for Kaiser Permanente of Southern California. "Vitamin and mineral supplementation, for those who can afford it, is something I endorse," he says. For skeptics, Katz cites a watershed 1992 study by R.S. Beach, which documented statistically significant vitamin and mineral deficiencies even in HIVers with normal CD4 counts.

And since 1992? Actually, there just hasn't been much study of vitamins and minerals in HIVers, because DS doesn't make Big Pharma -- the bankrollers of much clinical research -- big bucks. In fact, Marcy Fenton, MS, RD (that's "registered dietitian"), a nutritionist at AIDS Project Los Angeles (APLA), says that when she was part of a recent effort by Health Resources and Services Administration (HRSA) to develop a set of nutrition recommendations for HIVers, it was impossible to produce a section on nutrients due to the lack of what she calls "evaluable research." "We need leadership in this area," she says. "No information and misleading information make for a glaring and harmful gap."

By now, I've trawled all over the Web, and I must say I am left gaping at the gap. But the little I find still makes me yelp "Holy Holistic Healing, Batman!" A 1998 Stanford University study found a strong link between glutathione levels and survival in a group of HIVers (mostly men) with fewer than 200 T cells. And a 1997 University of Miami analysis showed that, among a cohort of HIV positive IV drug users, low selenium levels were 15 times more significant than low CD4 counts as a risk factor for mortality. If this is old news to any of you, I'm sorry -- to me it's bold and italics.

It turns out that, for all the dearth of randomized-double-blinded-NIH-protocol-whatever research, a pretty strong consensus of just which nutrients are most deficient in HIVers has emerged. Time and again, on the Web and talking to experts, I came across the same eight suspects: antioxidant vitamins: the Bs, beta carotene, C and E; antioxidant minerals: selenium, magnesium and zinc; glutamine (the amino acid that builds crucial glutathione in your body); N-acetyl cysteine (NAC), another glutathione builder; alpha lipoic acid; L-carnitine; calcium; and the cryptically named coenzyme Q10 (coQ10). (For more, see "Eight Is Enough.")

Finally I am ready to face my next big question: Just what the hell is the best way to get these eight much-needed nutrients into your body, anyway? I abandon the Web for a good old-fashioned research tool: the phone.


I AM TOLD TO EAT MY SPINACH

A round of calls to some of the nation's leading HIV docs and treatment advocates leaves me with a distinct message: Forego the groaning shelf of pills, powders and potions for a groaning board of leafy greens, fish and whole grains -- or any diet that stresses vegetables and lean protein over fat and grease. Gary Cohan, MD, managing director of Pacific Oaks Medical Group and chair of APLA's medical advisory committee, concurs. "Unless there is an indication of a specific vitamin deficiency, I don't recommend anything," he says. "People should get their vitamins, minerals and trace elements from food, not pills. If a patient is determined to swallow synthetic vitamins, I only suggest a 'standard' high-quality commercial multivitamin like Centrum Silver. And I tell them to buy it in bulk at a warehouse store like Costco so they don't get ripped off."

On a huffier note, Douglas Richman, MD, director of the Center for AIDS Research at the University of California at San Diego, says, "I am continuously amazed -- but not surprised -- that patients see drugs as expensive and potentially dangerous, yet spend billions of dollars on unregulated, useless (until proven otherwise) and potentially dangerous supplements of unknown composition, origin and manufacture. Somehow these are 'natural.' So are opium and poison ivy."

Supplement skepticism is not limited to physicians. HIVer Mark Harrington, executive director of Treatment Action Group, agrees with the docs: "Eat a good diet, and take a multivitamin pill if you want to." Nutritionist Charles Mueller, PhD, of Cornell's Weill Medical College, whom I met over a lunch of grilled chicken salad, also pooh-poohs a V&S approach. I am still on my selenium-is-the-answer-to-everything kick when we meet; he is nonplussed. "Oh, right, an antioxidant," he says curtly. "Selenium might help improve immune function. But they call it a trace mineral for a reason -- you just need a tiny amount."

It should be noted that Mueller, an old friend, works mostly with bedridden elderly patients who get their meals through a tube in the wall of their stomach. In other words, he's come to his bias for solid food honestly -- but his predilection still makes sense to me. Food is the real thing. Why not just spend the money I'd shell out on supplements to treat myself to more fruits, salads and fish?


I AM REMINDED THAT POPEYE DIDN'T HAVE HIV

Full up with food purists, I resolve to hunt down some delegates from the opposite faction -- the one that believes that we "virally gifted" cannot live on bread (nor all the other tiers of the food pyramid) alone. My search is not in vain. First, I get in touch with Charlie Smigelski, RD, a dietitian with many HIVer clients at Boston's Fenway Community Health Center, who laments: "Too many people at even big-name hospitals are told to take a multivitamin and eat the food-pyramid diet. This is tragic." He also sends me his "all-purpose" HIV-nutrition handout, in which meal suggestions under his five key food groups -- proteins, vegetables, fruits, starches and nuts -- share equal space with nonfood supplements for the nutrients HIVers lack.

Multi Madness

Last summer, Harvard Med heads declared that yes, American adults are better off taking a basic daily vitamin than not. For HIVers, that's a no-brainer times 10. But how to decide which of the myriad multis gives us at least enough of the stuff we need more of -- and without breaking the bank? POZ can't blue-ribbon any one label, but we can pass along these savvy-shopper tips:

1. Read between the label lines. Fred Bingham, director of the buyer's club DAAIR, says to eschew brands with too many nutrients ending in -carbonate or -oxide in favor of those followed by -citrate, -ascorbate or amino-acid chelate (they absorb and metabolize better). Robert Schmehr, HIV Center head at New York City's St. Luke's-Roosevelt Hospital, says brands labeled yeast- or animal-free are made with plant sources, thus purer. And APLA nutritionist Marcy Fenton says USP means the brand meets U.S. Pharmacopeia (www.usp.org) standards.

2. Pick the punch-packers. Federal recommended daily values (RDVs) for vitamins and minerals aim for the known nutrient needs of neggies, but a landmark U. of Miami med-school study suggests that HIVers need anywhere from six to 25 times those RDVs for key nutrients like the Bs, A, C, E and zinc! No wonder FIAR's George Carter says to look for brands that cram 20 to 50 mg of the Bs into each pill -- a good sign that its other nutrients are robust, too.

3. Supplement your knowledge. Even a generally strong label may not offer enough of certain key nutrients, so check any multi against the RDVs (see "Eight Is Enough" and the "Too Little? Too Much?" chart at www.poz.com). But don't stop there. Talk to your doc before making any nonfood a part of your daily intake. Find an HIV-specializing nutritionist through your nearest ASO or at the American Dietetic Association's www.eatright.org. At www.consumerlab.com ($17.95 annual fee), screen dietary supplements before you buy them. Tap into the wide world of non-pharma HIV therapy at www.fiar.org and www.daair.org. Read AIDS nutrition guru Mary Romeyn's Nutrition and HIV: A New Model for Treatment. And oh -- eat some fruit today.

-- Tim Murphy

Next, I track down George Carter, director of the new Foundation for Integrative AIDS Research (FIAR), which promotes more rigorous clinical studies of dietary supplements in HIVers and those with chronic viral hepatitis. Carter is refreshing: Expecting holistic homeopath hokum, I get a smart-ass Mr.-Smith-Gone-to-Washington instead. "Sure, you have to have a good diet," he cracks when I tell him that most doctors I'd spoken to feel their patients are too supplement happy. "But if you're gonna eat fried chicken and Crisco, just a multivitamin might not cut it." He goes on to recommend his preferred antioxidant, a B complex and the amino acids NAC, L-carnitine and glutamine.

Carter says Bio Nexus' Nutrivir -- a multivitamin, antioxidant and muscle mass-maintenance formula that you mix into juice, milk or a shake -- is an excellent one-stop solution: "I'd be taking it myself if it weren't so expensive." (For the uninsured, the supplement costs $30 to $60 a month, depending on how much you take.) And he's passionate about milk thistle: "I have hep C, and there is really good data that it improves liver function and even protects it against certain drugs." (But it may not jive with some HIV drugs, so talk to Doc first.)

I ask Carter to "prescribe" a formulary for my neuropathy. He offers vitamin B-12 with folic acid, alpha-lipoic acid and acetyl-carnitine. I tell him I fear osteopenia. "Do a multimineral without iron, which can be liver-toxic," he tells me. "Something with calcium, boron, silicon, magnesium. You may want to do the magnesium separately -- to time it if it gives you diarrhea. They don't call it Milk of Magnesia for nothing."

I get more food-ain't-enough guff from Alan Lee, RD, who chairs the New York City-based Nutritionists in AIDS Care: "Certain dietitians harp food, food, food," he says. "But, come on, if you wanted to get enough vitamin E to act as an antioxidant, you'd have to drink 40 gallons of peanut oil. Glutamine, which is critical in chronic infection, gets cooked out of meat. And selenium is found in just a few grains and Brazil nuts." It turns out that Lee has a good word to say about every supplement I mention, including coQ10 and alpha-lipoic acid ("beneficial for lipodystrophy"), L-carnitine ("helps break down fat, instead of muscle, into energy -- which is key for people with AIDS-related wasting"), the exalted selenium and calcium. He also recommends quitting smoking, cutting down on alcohol, starting strength-training and aerobic exercise, and getting regular testosterone screenings to guard against bone loss.

When I ask Lee for a money-is-no-object regimen, he, too, suggests Nutrivir, plus popping calcium, a multi, coQ10 and -- if wasting is an issue -- Juven, a protein-packed powder formula. And a pauper's plan? "For $20 a month you could probably do whey protein," he says. "It's very cheap and has lots of glutamine -- plus some NAC and a generic multivitamin. But why bother? In some states Nutrivir and other supplements are covered by insurance." (Private insurance usually doesn't pay for them.) Finally, I asked about my Vitamin Water. "No. That's 250 calories of corn syrup with a multivitamin. Dumb."

Lest you think MDs and RDs are locked in some sort of food-vs.-supplements smackdown, oftentimes doctor's orders are: Swallow the cocktail to fight HIV, then swallow some V&S to fight the cocktail. The University of Alabama's Michael Saag, MD, recommends a balanced diet foremost, but urges patients with drive-thru diets to take a good multi -- if not more "in cases where specific nutritional deficiencies are encountered, like enhanced B vitamins for lactic acidosis, calcium/vitamin D for osteoporosis and osteopenia, and B-12 for neuropathy." Cal Cohen, MD, director of Community Research Initiative of New England, recommends sustained-release niacin (Niaspan) and folic acid (Folgard) to help correct abnormal lipid levels for patients at risk for heart disease.


I GRAB MY SHOPPING BASKET

When the going gets tough, the tough go to Wal-Mart -- in my case, the Lenoir City, Tennessee, Wal-Mart near my folks, whom I'm visiting for the weekend. At the pharmacy window, I tell Alvin, a bespectacled man on a swivel stool, that I am HIV positive and looking to begin a supplement regimen. Alvin says that he doesn't have any HIV positive customers at the Wal-Mart and then offers to look up some stuff in "the Book." He makes this sound like a trip up Mt. Sinai for more commandments, so instead I meekly ask about my cherished selenium. He impresses me by promptly pointing me to the multi with the most selenium (in this instance, One Source). On powders, he's less literate. He'd seen Juven in the store, he says, but today, amid acres of powdered nutrition beverages, it is nowhere to be found.

Back in New York City, I seek more expert consultation at CVS ProCare, which bills itself as "the nation's leading pharmacy providing specialized care to individuals living with challenging health conditions." Smack on the main drag in way-gay Chelsea, it certainly caters to its customer base: Pharmacist Tom is maybe the hottest pill-counter on the Eastern Seaboard. Wouldn't it figure that the afternoon I pay him a call, a fat zit has erupted on the end of my nose.

Off HAART for two years, Tom credits his robust health (viral load and T cells holding steady at 9,000 and 600, respectively) to $500 a month in supplements: a Solgar multi, Juven, extra glutamine, sustained-release NAC, alpha-lipoic acid, fish oils, selenium, reishi and shiitake mushrooms...you name it. I ooh and aah at the tattoo on his meaty forearm, a crucifix bearing the words Never Give Up. He gives me a bagful of Nutrivir and Juven samples and graciously overlooks my megazit.


I DECIDE WHAT I CAN SWALLOW

I had a great experience with 'shrooms in my 20s, but today, wanting hard-as-it-gets science, Nutrivir seems the way to go. With all the glutathione-builders you could ask for -- plus tons of selenium, B-6, B-12, C, E, muscle-boosting whey protein and levels of all the other vitamins that, by my estimate, seem more than adequate for HIVers' special needs -- it's a no-brainer, at least on paper.

Using my samples from Tom, I do a little taste-test with my friends Barbara and Michael. First we try it in a yogurt-fruit shake. Barbara sucks it down with a very unladylike slurp, then snarls, "Yuck." Michael and I are similarly grossed out. Next we try it in milk, which is not much better. Only straight OJ half-masks the powder's horsey vitamin aroma and gummy texture. We all feel a little queasy when it's over. Do I need to go back to the drawing board?

No, I plan to stick with Nutrivir -- at least for the few weeks my free samples last. If I can get used to the stuff, it will become part of my morning routine. At least it forces me to drink an extra big second glass of OJ (to wash down the hay-glue taste of the first). It's no bargain, but in pricey Manhattan, where I already pay $120 a month for yoga and the gym, I might consider forking over another $60 for a true breakfast of champions -- and another visit to mouth-watering Tom. If I don't go for this gold-coast approach, I'll find a new multi with high levels of selenium, magnesium, calcium, B-6, B-12, C and E, and add L-carnitine for my neuropathy and glutamine for my gut.

I admit I still don't really know what a coenzyme is. But with the guidelines I managed to cobble together from many sources on my expedition through the brambles of V&S territory, I feel like I have a pretty good para-HAART plan. Hell, I'd give a fellow HIVer advice on the topic, even if I wouldn't appoint myself messiah.

Speaking of that, I guess it was a little grandiose to think I'd die at the same age as Christ. Truth be told, I've always felt I had more in common with Mary Magdalene anyway.

Where My Girls At?

Briefly burnt out on expert opinion, I decided to find out what pills and powders -- the legal ones, anyway -- my HIV positive pals are downing to round out their diets of leafy greens, turkey burgers, venti iced lattes and Camel Lights. Their V&S intake (and out-of-pocket) astounded me. Even 36-year-old Rob, who tested positive just last month, has already started taking selenium. But I wasn't the only supplement-naïve one in my circle: When I asked one friend why she passed on the multis and Myoplex shakes, she barked, "Because I have too much else to take!" Here are my findings-cum-my snarky comments:

Craig, 29, receptionist
Cocktail: Combivir and Sustiva (also Allegra-D and Prozac)
Multi: Two without iron three times a day
And beyond? Two doses of predigested collagenated protein a day. Assorted supplement drinks and bars after workouts. And 6 to 8 mg melatonin at night to keep sleep regulated.
More in store? "I'd like to but can't afford them."
Monthly damage: "About $60."
Lunch today: "A can of albacore tuna in water, an avocado and a cherry ginger ale."

Jim, 43, nonprofit development
Cocktail: Sustiva, 3TC and d4T (also Valtrex, Flonase, Claritin and Androgel)
Multi: Yes (Solgar)
And beyond? [Take a deep breath -- he sent me an Excel spreadsheet.] Alpha-lipoic acid, L-glutamine, chondroitin sulfate, conjugated linoleic acid, creatine monohydrate, DHEA, milk-thistle extract, niacin, pau d'arco extract, St. John's wort extract, aloe vera gel, Methoxy-Tech with EcDy, Gluco Tech, Growth Tech
More in store? "No!" [What's left?]
Monthly damage: "I shudder to think, maybe $300 or so."
Lunch today: "Cold sesame noodles, beef with oyster sauce."

Iris, 46, counselor
Cocktail: Kaletra, 3TC and d4T
Multi: One in the morning
And beyond? Vitamin C, 2,000 mg, twice a day. "Ensure in the morning and evening with my meds."
More in store? Yes -- antioxidants
Monthly damage: Nothing. Medicaid pays.
Lunch today: "Fish sandwich on wheat, fries and a Coke."

Tim, 31, health writer
Cocktail: "Crixivan, Norvir, Ziagen and 3TC, taken with leftovers like cold pizza at 6:45 a.m."
Multi: Two Solgar VM 2,000 tablets a day
And beyond? "Nope. I don't believe boosting nutrient levels beyond what the body needs does much good -- it may, in fact, be harmful." [Did I mention Tim is a health writer?]
More in store? "Not particularly, though I'm fascinated with the marketed -- as opposed to proven -- benefits of protein supplementation, creatine and the other mass-building products." [Did I mention Tim is a super-buff health writer?]
Monthly damage? "$25 tops."
Lunch today? "Salami on rye with onions, tomato and mustard."

-- ML




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