Friends help make experimental IVC trial possible

Mark A. Hicks, illustrator

I made a commitment last month to give intravenous vitamin C (IVC) a serious shot at resolving some ongoing health concerns I have, especially these mysterious lymphatic masses, or cysts, or whatever they are on the side of my face.

I made that decision during my latest visit to the Riordan Clinic, which has been studying IVC, especially for cancer patients, for more than 30 years now.

After consulting with my life partner, we decided it was worth investing another grand or so to decide whether or not this therapy has any value for my condition. Defining my condition, and what measures to use to determine improvement was not so easy to do. Yes, I’m HIV-positive, and in fact, according to the CDC, I’ve had full-blown AIDS since at least 2002, the first of three times that my CD4 count dropped below 200. Despite that, none of the most disabling medical diagnoses I’ve had to deal with are considered “AIDS-defining”.

I am more than skeptical about the value of the two key markers used by AIDS specialists to track progression, viral load and CD4 counts, but I have been tracking these numbers since 1998, and there has been an overall decline in CD4 counts, as well as an overall increase in my viral load, including a nearly 10-fold jump in that marker between my last hospitalization for a DVT blood clot on the Fourth of July weekend in 2009 and the Bell’s palsy incident eight months later.

After discussing my interest with both my allopathic and my alternative doctor, we settled on a two-month course of biweekly vitamin C infusions. We would judge the “success” of this privately funded trial by monitoring changes in CD4 count, viral load, and size of cysts, as measurable outcomes. We’d also consider such things as mood, energy and general sense of well-being, as secondary and subjective outcomes. Any positive changes achieved in the former outcomes, based on the same criteria used to support the use of ARVs, can be used to argue for further study of and support for IVC. Improvements in the more subjective measures of “feeling good”, while not meaningless, will likely be dismissed as a placebo effect.

All of this budgeting was based on the assumption that I could achieve the desired serum levels of ascorbic acid by doing 25 gram infusions. Unfortunately, the post-infusion tests showed sub-optimal levels of vitamin C in the bloodstream. To increase these levels, we would have to increase the dosage to 50 gram per infusion, at an additional cost of about $800, which we simply did not have.

This meant that we would have to change the protocol in significant ways, reducing either the frequency of infusions, or the duration of the trial, if we were to keep within our budget. I am using the term “budget” loosely. When I first started investigating IVC, to treat what seemed likely to be cancer, as suggested by the parotid cysts, we had tentatively set a limit of $1,000 out-of-pocket costs. I live on a fixed disability income, and Michael, who is less than two years shy of being eligible for Social Security, works two jobs just to earn a fraction of what he made before getting laid off from a major bank a couple of years ago.

The point is, I could not justify continuing to withdraw money from Michael’s retirement funds for my medical experiments, but I also hated to lose any momentum I might have already achieved. To date, we have spent considerably more than $3,000, much of that on credit cards.

Before giving up, or settling on a sub-standard protocol, I took the risk of embarrassing myself by asking some friends for help. It’s not the first time I’ve begged for money, and in fact I’ve spent much of my life fundraising for one cause or another. This was, however, the first time I’ve ever asked for financial help for a personal medical treatment.

Thanks to the generosity of four friends, in just a couple of days I was able to get the commitments needed to do the full monty and we are moving ahead with the original experiment. In fact, today’s infusion will mark the halfway point of the eight-week trial.

I don’t know what words to use to express the gratitude I feel for those who made this possible, so I’ll simply say: thanks. I hope and pray it proves to be worthwhile, and I look forward to sharing the results in a few weeks.