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Sunshine in the veins

Researchers are still studying light therapy after more than a century of medical use.

I first learned of ultraviolet blood irradiation (UBI) a few months ago from a mutual friend. UBI is also known as extracorporeal photopheresis (ECP) in the medical literature, and most recently BioPhotonic Therapy and Photoluminescent Therapy. Photopheresis been around for more than a century, and started gaining attention in medical circles as early as 1902. Like many promising alternative protocols, the spectacular success of antibiotics to fight battle field infections in WWII captured the hearts and minds of physicians and started the West’s love affair with pharmaceutical solutions to disease, at the expense of non-pharma options.

Today, as best as I can tell, UBI is approved by the FDA for only two purposes: cutaneous t-cell lymphoma and graft-vs-host disease. It’s use is far more widespread in Europe, Russia, China and South America for a variety of conditions, though it is currently being studied in the U.S. as an alternative treatment or adjunctive treatment for malignancies, auto-immune disorders, and yes, AIDS.

One of the earliest studies of UBI on patients with AIDS-related complex (ARC), published in Annals of Internal Medicine in 1990, reported some pretty amazing results, though the sample size was admittedly very small. Five sero-positive patients with ARC underwent monthly ECP for more than a year.

Measurements and Main Results: Symptoms resolved in four patients. Lymphadenopathy disappeared in all five. Four patients had delayed-hypersensitivity reactions to skin testing (as defined by the Walter Reed staging classification). All showed increases in p24 and gp120 antibody levels. The CD4-cell percentage increased in four patients and declined in one after 6 months of therapy, but the absolute CD4 count decreased in two patients. At 15 months, the CD4 percentage remained at or increased over the baseline value in three patients still in the study but decreased in one. Levels of Beta2-microglobulin decreased or remained stable in four patients. All patients were culture positive for the human immunodeficiency virus (HIV) before treatment. One patient had a negative viral culture after 5 months of treatment with confirmation. Two other patients became HIV culture negative, one at 14 and one at 15 months: The former patient became positive at 15 months and the latter patient remained negative at 16 months.

Three of the five patients who underwent ECP actually sero-reverted from HIV-positive to HIV-negative, based on culture, not antibody reactivity tests or the so-called “viral load” tests commonly used today.  No wonder the authors concluded that ECP “deserves further evaluation”.

An extended study of 20 patients, conducted a few years later, was less promising, though I can’t help but wonder if it might not have been reported more positively had it been a new blockbuster pharmaceutical drug. I only have access to the abstracts, which severely limits my ability to evaluate the followup study. (NOTE: I’d welcome the chance to review the full report, if any readers have access to it.) I do not know how much blood was removed and irradiated in these patients, for example. It seems possible that the researchers were basically irradiating the patients’ entire blood supply, while today, only a small amount of blood is drawn and treated.

In any event, “a subjective improvement was noted in the majority of patients,” the authors wrote. And, “some decreases were noted in the CD4 cell counts but the decline may be less than is normally seen at corresponding stages of HIV infection.” No reports in the abstract of attempts to culture virus either before or after, but as I said, my access to the data is limited.

After that, research into UBI for AIDS patients seems to pretty much disappear from the medical literature, which seems odd, considering such promising preliminary results. There are currently only three trials of ECP for AIDS listed at clinicaltrials.gov, and two of those trials involve the use of “photosensitive drugs”; in other words, the emphasis is on some form of enhanced chemo, rather than the potential of ultraviolet irradiation alone.

I am sharing this important background information, at least in part, as defense against some of the criticism I’ve received for resorting to “woo-woo” alternative medicine. I want to make it clear that I try my darndest, as a lay person, to do some due diligence. I consider the evidence for UBI therapy to be as legitimate as that for many of the pharmaceutical treatments being prescribed today, and the safety profile for UBI/ECP blows ARVs out of the water. It isn’t that hard for me to suggest that putting one’s faith in ARVs might also be considered pretty “woo-woo”.

Another problem that I continue to encounter with alternative healing practices is that few healers seem to question the viral causation theory of AIDS. UBI, for example, is supposed to “kill pathogens”, including, presumably “HIV”. If, as some AIDS questioners suggest, HIV has not been isolated, or if it is not the pathogen that Robert Gallo claimed, then attempts to control it may be futile. On the other hand, proponents of ultraviolet light therapy also claim the treatment can stimulate the immune system, oxygenates tissue and promotes an anti-inflammatory response, among other things.

My personal approach to health the last several years has been to try to support my body’s innate ability to heal disease, not “fight” a virus. While I have not been successful in affecting the conventional laboratory markers, such as CD4+ counts, there is really no way for me to know, let alone quantify what positive and healing effects these alternative treatments may have had. I have been able to remain off of the pharmaceutical ARVs for more than 10 years, and I wonder if that would have been the case had I not tried some of these alternatives. ARVs are also prescribed as lifetime therapy, while at best I’ve “dabbled” with high dose intravenous vitamin C and UBI.

The version of UBI I’ve been trialing involves drawing about 30 cc of blood from a vein, diluting that blood with a few hundred ml sterile saline, adding a bit of heparin to prevent clotting, and then passing the blood through a chamber containing ultraviolet light bulbs before drippiing it back into my veins. I’ve undergone a total of at least two dozen such UBI treatments since the beginning of the year.

[youtube http://www.youtube.com/watch?v=c7EuTlXXcQs]

Unfortunately, I don’t have any grand pronouncements to make. I told one promoter of a UBI device who offered to treat me in Mexico that if he was able to reduce my viral load to undetectable and/or cause my blood to test “HIV-negative”, I would climb up on the roof of my house and shout the news to the world.

There is no such news to report. My numbers suck worse than ever, and that will be the topic of my next post.

Additional reading about UBI and ECP

 

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  • 97

    97. That’s my latest CD4+ count, less than half the count from six weeks ago.

    That’s it. I have tried as many alternative treatments as I can think of to reverse the decline. I will be starting my third round of pharmaceutical ARVs as soon as I can get a prescription and fill it.

    This decision has been a long time coming, and in hindsight, I probably should have restarted a few months ago. There’s nothing magical about 97, or being below 100, but it’s as good a breaking point as any. I’ve long argued that there are two things to keep in mind about CD4 counts: one is the long-term trend; the other is single- or low double-digit counts.

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    Gay men deserve to know that all the claims for Truvada reducing the risk of acquiring HIV-positivity  are based on trials—funded by Gilead—that emphasized the importance of using condoms…

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    There’s a whole thread on a very popular Facebook page called “Rethinking AIDS”, discussing my open letter to Dora. Last I looked, that thread had nearly 100 comments, and very few of those comments were about Dora, Ruggiero or the defense of academic freedom.

    No, the gist of the thread was whether or not I am in “the AIDS Zone.” It seems that because I did not use “air quotes” around the term “HIV disease”, I’m not really an AIDS dissident. Others took issue with my post for daring to publish that some AIDS Rethinkers hold a very narrow view about “HIV” and “AIDS”, while others of us are merely “questioning” the whole affair. None of them chose to comment directly to me here.

    Some of the most visible and vocal Rethinkers seem intent on imposing their own “beliefs” (another loaded term that deserves quotes) on the entire movement. There has long been a tendency to try to impose a sort of litmus test to determine whether or not one is a true “AIDS dissident”.

    Since I first met the AIDS dissident community via the AIDS Myth Exposed forums—since renamed Questioning AIDS—several years ago, I’ve become aware of several of the various factions, distinctive personalities and divisions within that broad group. Now I’m finding it ironic just how guilty some of these people are at their own version of “bone-pointing”.

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