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Supportive vs Alternative Therapy

Aug 9, 2007

Hello Dr Bob!

Wow, I don't check the forum for two weeks and now I have a lot of reading to do (looks like quite a few, erm, "interesting" questions in the batch {wink}).

You're definitely working on your sainthood in my book. ;-)

I started HIV treatment 10 weeks ago: Clinical Trial: MK-0518 Versus Efavirenz 021-00 IRB# 9098-06-10R0 Start: CD4+:332abs/19% VL: 1,090,000 Week 8: CD4+: 503abs/22.5% VL: 80

My question:

Based on my reading so far, you're not a big proponent of "Alternative Therapy" (to say the least {wink})...

Beyond the "waste of money" issue though, do you have any strong opinions on what I see as supportive therapy (as in addition to my prescribed HIV medications)?

My bigest concerns are issues related to mitochondrial toxicity and "chronic infection" deficiencies.

I found a paper (bear with me now!), that seems to pretty well "sum-up" a good deal of information that I've been seeing "around the Internet". [OK, "found a paper" and "around the Internet", two strikes]. Would you be willing to take a quick look at it [ ] and give me your opinion?

I have actually been on a six month regimen of:

150mg (b.i.d. 300mg/day) alpha-lipoic-acid (R-Fraction) 750mg (b.i.d. 1500mg/day) L-Glutamine 500mg (b.i.d 1000mg/day) L-Carnitine 1000mg (q.d. 1000mg/day) Niacin (as prescription Niaspan) 2400mg (q.d. 2400mg/day) Omega 3-6-9

Based on this paper, I'm also going to add: 1200mg (b.i.d. 2400mg/day) N-Acetylcysteine (NAC)

This regimen costs me about $70 for a 30-day supply (and almost half of that, $30, is the co-pay on the prescription Niaspan!).

In those six months:

Start: Weight: 242lbs Cholesterol: HDL:22 LDL:126 Trigs:307

Most recent: Weight: 200lbs Cholesterol: HDL:31 LDL:100 Trigs:94

Thoughts (be gentle, I vote Democrat! {wink})?

Response from Dr. Frascino


You don't show up for two weeks and you expect me to be gentle??? Oh, OK. How about 10 points from Gryffindor and a week's worthy of detention with Dolores Umbridge and we'll call it even, OK? Now, on to your questions . . . .

You're correct: I'm not a supporter of "alternative therapy," because by its very name it suggests an unproven "alternate" treatment in place of a proven therapy. That makes no sense to me especially when dealing with an illness like HIV where therapeutic miscalculations can cost you your life. What you are calling "supportive therapy" is also a bit of a misnomer, unless there is real scientific proof it actually "supports" something other than an unscrupulous manufacturer's pocketbook! I believe the better name might be "unproven complementary therapy," thereby reminding folks it's "unproven" and that it's designed to compliment or add to therapies with proven benefit.

The paper you reference was written by Lyn Patrick. She is not a physician. Consequently, her knowledge and ability to synthesize the complex topics she references is limited and very definitely biased toward unproven therapies. Some of the basic concepts are true, but her conclusions are not supported by facts. There is also very little research done on potential drug-supplement interactions.

Will your current mix of unproven complimentary therapies hurt you? Probably not, although I have no way of knowing that for certain, particularly when it comes to the potential for drug-supplement interactions. After all, we don't even know which active drug regimen you are on MK-0518 or efavirenz!

Next, will your current unproven complementary therapy combo help? Probably not. Please note, promising therapies for a disease as widespread as HIV are very quickly picked up by Big Pharma, researched, developed, standardized and submitted to the FDA for approval of documented efficiency and safety. Those products that aren't promising or have other problems (such as lack of efficacy) remain on the shelves as complementary therapies and are sold and promoted by non-physicians. All of them carry an FDA label that states: "This product is not intended to diagnose, treat, cure or prevent any disease or medical problem." I believe that warning says it all!

As an HIVer, I want to "be here for the cure" as much as the next guy and I'm willing to take logical risks in order to do so, but as a scientist and HIV specialist, I'm also a realist. If there is no documented upside and a significant potential downside, that risk isn't worth it.

Finally, I should mention I've been popping antiretrovirals for over a decade and the cumulative effect of taking thousands and thousands of absolutely essential pills, capsules, potions and lotions has resulted in my aversion to take anything that I don't have to! Many of us long-termers feel the same way.

All of that being said, I also will never ever argue with success; and your numbers look great so far! Would they look perhaps less impressive or maybe even better if you hadn't been chugging down the expensive snake oil? No one knows!!! Until they do, I'll stay on the sidelines and wait for data and/or a scientific rationale.

There, was I gentle enough?

Be well, Democrat-Guy.

Dr. Bob

Please don't neglect us lesbian magnetic couples!
Give me Woo Hoo or whatever that is

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