Ah, sweet hubris!

Friday evening update: Happy to report that I’m 90% better. Congestion largely gone, energy much improved. 1/31

I wrote about clearing up a cold a week or two ago in a day. It worked quick!! But this past Monday (1/27) something nastier came along. Given the sudden onset, deep bronchial hacking cough, clear mucus, joint pain and headache and extreme fatigue, I think flu is a good bet, tho it could be a rhinovirus (but probably not). But viral it is (so far!)

Monday night was relatively rough but I started to wage battle with this. Every couple of hours, I took a couple of beta glucan, a couple of Resist Immune, a nice blend that sadly Jarrow no longer makes called Wellness Optimizer and a couple of grams of vitamin C. Tuesday I was lucky that I could stay home–and slept a lot. Ate very little, to keep the mucus reduced. I didn’t have the energy to even drop off mail at the post box! Tuesday night I slept well with some extra melatonin and when I woke up, I’d take more of the regimen. Yesterday (Wed) the cough was 90% gone and it moved to my head. I had more energy so I actually got out and did some errands and got some work done. Last night I figured the snot in my head would ruin the night’s sleep–but I slept well! I started taking more fizzy NAC (PharmaNAC), a total of three for the day rather than just one along with Cordyseng. And more and more vitamin C — right to nearly bowel tolerance. One should be aware that ramping up the dose of C like I’m doing can give one diarrhea, but I haven’t hit that yet, quite. That’s “tissue saturation.”

Today, better still tho still some head congestion and fatigue. Will continue the regimen.

While I would love to have avoided this (naturally), I’m still glad I had these agents in my armamentarium to wage battle. I’ll see how fast I can knock this out, resting, more fluids and all of that as well, while keeping alert for any bacterial infection development. While this is annoying, too, I bear in mind that many friends are battling far tougher challenges, and that keeps the suffering in perspective.

As my friend used to say, Onward and Sideways through the Fog!

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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

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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

Pomegranate juice and heart health

In the past decade, there have been a number of studies of the potential of pomegranate juice to support cardiovascular health and provide additional health benefits as well. Recently we reviewed a research report published in 2012 that looked at the cardiovascular and immune system benefits of pomegranate juice for hemodialysis patients. This was a randomized placebo controlled double-blind trial (a kind of research design that is likely to produce reliably objective findings). The patients were followed for one year as they used pomegranate juicee three times a week while continuing their dialysis treatments. The results:

Pomegranate juice intake resulted in a significantly lower incidence rate of the second hospitalization due to infections. Furthermore, 25% of the patients in the pomegranate juice group had improvement and only 5% progression in the atherosclerotic process, while more than 50% of patients in the placebo group showed progression and none showed any improvement.

And the conclusion:

Prolonged pomegranate juice intake improves nontraditional CV [cardiovascular] risk factors, attenuates the progression of the atherosclerotic process, strengthens the innate immunity, and thus reduces morbidity among HD [hemodialysis] patients.

Of course, this research involved a special group of patients, those on hemodialysis. But, as a well-designed study, it does, we think, provide a fairly strong endorsement of the health benefits of pomegranate juice.

For more on pomegranate juice, see the NYBC entry

http://nybcsecure.org/product_info.php?cPath=40&products_id=333

Note that NYBC also carries the Douglas supplement Cardio-Edge, which includes pomegranate:

http://nybcsecure.org/product_info.php?cPath=35&products_id=284

Reference: Shema-Didi, L et al. One year of pomegranate juice intake decreases oxidative stress, inflammation, and incidence of infections in hemodialysis patients: a randomized placebo-controlled trial. Free Radic Biol Med. 2012 Jul 15;53(2):297-304. doi: 10.1016/j.freeradbiomed.2012.05.013. Epub 2012 May 17.

Help for Hep C meds–PLEASE SIGN!

We desperately need help in getting signatures to get sofosbuvir and daclatasvir in clinical trials. Please use the short URL (click below or cut-and-paste into your browser):

http://1.usa.gov/WV393T    

Part of the reason/problem is that, as I understand it, these White House petitions need to now have 100,000 signatures (formerly 25,000) in order to get attention. I don’t know how we’re going to manage this but we have to try.

So I am asking you please to sign–and spread the word to family, friends, through networks and lists. Lives depend on it–and over 300,000 people die each year from Hep C for lack of treatment.

Here’s the story. The current treatment for Hep C is PEG-IFN plus ribavirin for 48 weeks. With genotype 1, one has a 40% chance of a sustained viral response (SVR) (no virus 12-24 weeks after finishing therapy). The treatment is costly and HORRIBLY toxic in addition to being not very effective and requiring weekly or twice weekly injections. (And Hep C is global: many people live in countries that hardly have enough syringes for other medical needs.)

Numerous all oral drugs are being investigated. The single most promising combination is Gilead’s drug, PSI-7977 (now GS-7977 or sofosbuvir) and the Bristol Myers Squibb drug, daclatasvir. Two pills. Period. The one study of about 400 people showed that the two drugs together CURED 100% of people (SVR12) with genotype 1 with few or no side effects in HALF the time (24 weeks of drug therapy). 12 weeks of therapy may work as well.

GILEAD said NO to further studies of this combo, a move purely driven by greed and corporate envy (Gilead has provided no reasons, medical or otherwise). They have a drug in the same class as daclatasvir and they want to (need to) corner the market. Their version tho, does NOT work as well and seems to require the anemia-inducing horror of ribavirin to work, with only at best an 80% SVR.

GILEAD ALSO pulled a boneheaded move. John C. Martin, CEO, actually BOUGHT sofosbuvir from Pharmasset–for $11 BILLION. THIS IS INSANE – it costs, pharma claims, $1 billion to bring a drug to market to begin with (though others have suggested it is probably much less than that). Pharmasset had only four drugs in its portfolio, one of which had already failed. Essentially, the only drug Gilead is developing is sofosbuvir. And they will want to get a VICIOUS return on that “investment” (that screwed their market capitalization–if I had Gilead stock, I’d sell.)

So they will probably jam their shittier drug in with this drug they bought in a “fixed dose combination” precluding use with daclatasvir and charge a small fortune. The rich get cured and those of us without insurance die.

Meanwhile, even if they DO make it available as a separate drug, we will NOT have information on how it works with different populations. People with HIV co-infection for example or on how it interacts with ARV or those who have relapsed.

GILEAD is a horrible company and to compound things, they spread cash around to a lot of AIDS and Hep C organizations and “community leaders” who then remain silent. And as I recall, SILENCE=DEATH.

Hundreds of THOUSANDS of deaths from hep C every year. More than AIDS these days–and killing my friends with HIV faster too.

New York Buyers' Club - The Blog

Here are some recommended supplements great for cold and flu season that have been the subject of recent, good research.

Vitamin D.  According to some recent thinking, the “cold and flu season” may actually be the “Vitamin D deficiency season.” As the days grow shorter, people get less sunshine, leading to a decline in the body’s levels of this vitamin, which is essential to good health in many more ways than we used to think. Taking Vitamin D during the winter may therefore be one of the most effective ways to prevent colds and flu. Many researchers who’ve studied Vitamin D now recommend at least 1000 IU/day, but those with a known deficiency may be advised to supplement at even higher levels. There’s a simple test available to check for Vitamin D deficiency – ask your doctor.

Cold Away. This blend of Chinese herbs from Health Concerns is…

View original post 500 more words

Multis No Good for HIV?

Spread the word! Multis will KILL YOU.

Well, it’s not quite that hysterical, but once again, the press seems intent on misinforming rather than helping to guide rational treatment choices. (See for example, this link).

In October of 2012, a study published by a group in Tanzania reported not only no benefit but potential harm from the use of a “high-dose” multivitamin formula. The study was conducted among adults with HIV who were taking antiretroviral therapy (ARV) and who were living in the developing African nation of Tanzania (Isanaka, 2012).

This same group had looked at a somewhat healthier (CD4 count mean of 340) group of pregnant women who were NOT on ARV. These and other studies among adults in developing nations were recently reviewed and presented as a poster at the 2012 International Conference on AIDS (Carter, 2012). Positive findings in several studies showed benefits overall in mortality and disease progression, as well as benefits for mother and newborn, clinically.

In the recent study, adults were randomized to an RDA level (pretty low doses) vs a “high-dose” formula who were all on ARV. Around 78% of participants had CD4 counts under 200. The study was stopped early due to a finding of an increased level of a liver enzyme, ALT. Over the time for which they did have data, extending out to over a year, they saw no benefit in terms of mortality, CD4 count or rate of disease progression. 3418 people had been enrolled and followed for a median of 15 months.

The question is whether these findings are “generalizable” to everyone on ARV. There are many reasons to think the findings are probably not relevant to many people with HIV on ARV.

1) the intervention used either RDA or “high-dose” of a few vitamins – the Bs, C and E. That’s it. No A, D or K, no minerals like selenium and the amounts were very small. Indeed, these we would consider subtherapeutic. There is a big difference between an RDA level that is designed to prevent outright deficiency diseases and therapeutic levels needed to overcome both the metabolic, gut damage and other disruptions caused by HIV, let alone the added burden of mitochondrially stressful and otherwise toxic ARV medicines!

Specifically:


Vitamin———-Low dose———-High dose

Thiamin———-1.2 mg———-20 mg
Riboflavin——-1.2 mg———-20 mg
Vitamin B6——-1.3 mg———-25 mg
Niacin———–15 mg———-100 mg
Vitamin B12——2.4 µg———-50 µg
Folic acid——-0.4 mg———-0.8 mg
Vitamin C——–80 mg———-500 mg
Vitamin E——–15 mg———-30 mg

2) They stopped the trial early because of elevations in ALT (liver enzyme) somewhere over 40 but mostly under 200, more in the “high-dose” arm. The overall event rate was 1239 events per 1215 person-years vs 879 events per 1236 person-years (RR, 1.44; 95% CI, 1.11-1.87). Which is to say BOTH arms had high numbers of people with elevated ALT—whether the “high-dose” multi was a cause or just correlated is unknown.

An ALT above 40 is just above the upper end of normal. MOST trials would not stop unless there was a significant number at 5 times the upper limit of normal (ULN) or 200 and here it was only 2% of the patients who saw this >5ULN. Specifically, the ALT above the upper level of normal (ALT>40 IU/L) and the ALT 5 times the upper level of normal (ALT>200 IU/L) were reported in 38% (n=1118) and 2% (n=54) of patients with ALT measurements, respectively.

3) At NYBC, we have never seen ANY of those vitamins CAUSE liver damage and to the contrary, tend to protect the liver. Nearly everyone was on a fairly liver toxic regimen with either stavudine (d4T/Zerit) or efavirenz (Sustiva/Stocrin). Several patients had a BMI<16 which is VERY underweight–my hypothesis is that perhaps the micronutrients started cleansing a liver now being whacked by the ARV.

The elevations in ALT were peculiar–I've never seen that in all my years–but they were also probably clinically irrelevant (they wouldn't make anyone sick) and the effect was seen in those underweight/malnourished.

4) They DID see that the "high-dose" reduced neuropathy. For a person living with HIV, the question is whether this benefit, especially among people on Zerit (d4T or stavudine) outweighed the possibly clinically irrelevant finding of elevated ALT. Again, the specific numbers indicated a statistically significant finding of a reduced risk of neuropathy: 1213 events per 1503 person-years vs 1365 events per 1450 person-years; incidence rate ratio [IRR], 0.81; 95% CI, 0.70-0.94.

5) While this study showed no benefit for CD4 or mortality (the primary endpoints), it was stopped early. Previous studies by the same group, though, had found numerous clinically relevant benefits (including for mortality), however those were done also in adults with HIV in developing countries who were NOT on ARV therapy and they had overall higher CD4 counts (350 thereabouts) than in this study of adults in Tanzania ON ARV (median CD4 around 140).

Not to mention that a full 72% of people in the study (in both arms) progressed to AIDS or died—underscoring that the ARV treatment wasn’t working very well either in this fragile group of patients. Though unfortunately, the double whammy of toxic drugs and a the multi provided were unable to alter outcomes significantly, this is still a disappointing result (particularly for the trial participants).

However, there are ways that this limited (not “high dose” in my view) intervention may have contributed—especially as pretty much was on regimens that included nevirapine or stavudine, both known to be hepatotoxic. Could the multi have enhanced those toxicities?

By contrast, Kaiser’s study among people on d4T or ddI as backbone ARV regiments where they looked at an antioxidant and robust multi formula saw an increase in CD4 and no liver abnormalities. However, it was in fewer people for a shorter duration. Just the same, I think it is safe and prudent to use an antioxidant regimen to offset ARV side effects. The study is important, disappointing and just the same, not definitive.

So SHOULD people, based on this study, abandon a multi who are on ARV? According to the scientific media, many are satisfied: throw out the supplements.

We disagree. While it is always prudent for people to check their ALT level, as well as kidney function and other bloodwork abnormalities that clinicians often ignore, all the studies we are familiar with that look at some of the elements of this limited protocol suggest they protect the liver. So that finding is peculiar indeed.

Unfortunately, this study may be used to dismiss any notion of programs that help people to have access to a multi. Clearly, the data among those not yet on ARV suggest a clear benefit from using a multi. And the cost is relatively low, ranging from $12-38/pt/year in developing nations.

And yet, also literally millions of people are dying for effective, less-toxic (or ANY) ARV, let alone food and clean water. While ARV access should clearly be prioritized, ARV in the context of food insecurity doesn’t work—as with treatment and prevention, there is no “versus” in a smarter, more compassionate world. These interventions are not mutually exclusive and demand anything less than what we get in the US or Europe for our friends in Africa and Asia and South America would be a despicable notion and quite probably a very foolish notion.

Frustratingly, though, this leaves us with that old refrain “more studies are needed.” Each of us must be aware of these data and make our own personal choices as to what to use—to the extent we can afford to do so!

****************
Study cited:
Isanaka S, Mugusi F, Hawkins C, Spiegelman D, Okuma J, Aboud S, Guerino C, Fawzi WW. Effect of high-dose vs standard-dose multivitamin supplementation at the initiation of HAART on HIV disease progression and mortality in Tanzania: a randomized controlled trial. JAMA. 2012 Oct 17;308(15):1535-44. doi: 10.1001/jama.2012.13083. PMID: 23073950.