This article previously appeared in The Positive Side, a publication of CATIE, here.
Une version française est disponible ici.
Iris Budd, 67
HIV+: 8 years
Volunteer at AIDS Committee of Guelph and Wellington County
I am a firm believer in supplements and I know they work for me because of the positive effects they have on my overall health. (Also, I research everything.) I used to take more supplements, but I had to cut back severely for financial reasons, so now I do the best I can. The supplements that I still absolutely must have are:
• PS (phosphatidylserine) for my brain. Although it’s very expensive, I try to never let myself run out. But when I do, I immediately notice the effects—I start to stutter and stammer, and my memory gets really bad, noticeably so
• vitamin D3, 1,000 IU per day [Osteoporosis Canada recommends 800 to 2,000 IU per day for adults over 50]
• vitamin E, together with my sleeping pills (otherwise the sleeping pills don’t work)
• I occasionally use a calcium/magnesium liquid supplement
• oil of oregano (Oreganol P73, produced from wild oregano), a powerful anti-infective agent
I used to buy krill oil, vitamin C packets and co-enzyme Q10, but it became too costly to buy all those supplements so I had to stop taking them.
I gave my doctor a list of the supplements I’m using and she realizes that I’m doing my utmost to get healthy!
Glenn Clark, 73
HIV+: 9 years
Retired, volunteer at Positive Living BC
I take vitamin supplements regularly for the different illnesses I have. Along with HIV, I have an irregular heart beat and a touch of osteoporosis. My supplements and meds all sit in a drawer together, so when I take one, I remember to take them all. If I’m in a rush, I always make sure to take the multivitamin—Centrum 50+. I also take glucosamine and calcium to protect my bones, as well as vitamin C (I use Ester-C).
I carry a list on me at all times of all the meds and supplements I take. On the list I also have the names and contact info of all my doctors—my family physician, my heart doctor and my other specialists. I keep the list in my wallet, so I don’t have to remember the names of all the pills I take. When you get older, you do get forgetful and I’m used to writing notes to myself so I don’t forget things. I also always have some pills and vitamins on me when I go out, no matter where I am.
Ron Rosenes, 66
HIV+: 32 years
Independent consultant for ASOs
I take K-Pax, a very potent multivitamin. I first heard about it five years ago when Dr. Jon Kaiser came to Toronto to talk about this formulation that he had created specifically for people with HIV and other immune deficiencies. We put together a group with Dr. Bill Cameron in Ottawa to do a study of K-Pax in people who were diagnosed with HIV but had not yet started on treatment. That trial is ongoing and we’ll have the results soon.
When I started taking K-Pax in 2008, it was recommended that I take the highest dose to achieve a bounce in my CD4 count, which I did. My CD4 counts had been static at about 300 for several years after I started triple combination therapy in 1997. (Before starting combination therapy, my CD4 count was 0.) After three months on K-Pax, my CD4 count went from 300 to the 500s. Nothing had been changed in my antiretroviral regimen, which I’ve been on since 2002. This is the kind of result we’re hoping to see in the clinical study.
Over the last few years, on a day-to-day basis, I’ve felt like I have a lot of energy considering my age and stage of life and I’ve generally had fewer infections, colds and flus. There are other contributing factors—including my exercise program, yoga and getting enough sleep—so it’s hard to attribute my good health to just the K-Pax, but I think it’s played an important role.
K-Pax is available from a vitamin and supplement store in Vancouver (Body Energy) or you can get it from the U.S. The only drawback is that it’s expensive: I spend $120 a month on a maintenance dose of K-Pax. But it covers all my needs for vitamins, minerals and antioxidants. Now I’m taking fewer supplements because K-Pax contains many ingredients I used to buy separately—including NAC, L-glutamic acid, alpha-lipoic acid and acetyl-L-carnitine. So, on top of the health benefits, I don’t have to take as many pills.
Gary M., 60
HIV+: 12 years
Consultant in the marine and offshore industry
I started HIV medication in 2002 and then found out I was co-infected with hepatitis C. In 2003 I was successfully treated for hep C, and in January 2004 I switched my HIV meds to atazanavir (Reyataz) and Truvada. My CD4 count went up to around 300 and remained there.
In 2008 I started to read up on antioxidants and supplements that stimulate the immune system. My CD4 count was stagnant and I wanted to increase it. I didn’t want to introduce too many supplements at the same time, so I started with a multivitamin, then added vitamin C, then vitamin D3 and then PurKrill. I wanted to see what the effects were of each supplement, so I took one for a while before introducing the next one.
After I started taking a vitamin C complex and vitamin D3, I saw my CD4 count gradually go up. I read that vitamin C would stimulate my immune system, and I haven’t had the flu or any flu shots since I started taking it.
I take 2,500 IU of vitamin D3 per day in the morning. It’s the sunshine vitamin—it’s needed for healthy bones and some studies suggest that it may help improve your mood and enhance immune system function.
PurKrill, a krill oil supplement, is a source of omega-3 fatty acids. I think that it has helped to reduce my bad cholesterol (LDL) and increase the good cholesterol (HDL). Before using PurKrill I talked to my doctor about it. He looked at the information and said he didn’t see any problem with it. After I started taking it, I saw an even greater increase in my CD4 counts.
At this point, I’m using more supplements than medication. I don’t have any side effects whatsoever on anything. My count is up to around 650 cells. My viral load is less than 40 copies/ml and has been for quite some time. But, more importantly for me, my energy level has gone up and I feel good. My CD4 count fluctuates, but really it’s all about how you feel.
Many people with HIV use supplements to compensate for a nutritional deficiency, reduce symptoms or alleviate the side effects of medications. Supplements can, however, interact with both prescribed and over-the-counter medications. Before you take any vitamin, mineral, homeopathic medicine or other supplement, talk to your healthcare team (your doctor, pharmacist, nurse and natural health practitioner), so they can help you avoid interactions and side effects.
Some supplements can weaken the effect of medicines used to treat HIV, hepatitis C and other conditions and some cause new side effects. People with HIV should avoid herbs such as St. John’s wort, echinacea, goldenseal and milk thistle.