health

Checking in: quit ARV drugs again

Checking in: quit ARV drugs again

Gawd forbid this period of inactivity be mistaken as some sort of ill omen. What I can say is that I’m alive and doing well by most measures that matter. I am struggling with fatigue, and depression, which may help explain my absence online.

I quit the low-dose darunavir monotherapy on May 29, almost exactly one year after I had restarted ARVs. I am satisfied with, if not excited about the “numbers”, which I will update in a future post, along with additional news about my health and medical status.

Homemade yogurt

Rethinking MAF 314

One of the most vexing issues I’ve had to deal with since I started exploring alternatives to ART (antiretroviral therapy) for keeping my immune system as healthy as I can, is my inability to abide by some of the most basic rules of scientific research. I’m not beating myself up too much for this…

The end of AZT?

The end of AZT?

As I spend time this week with one of my dearest friends, a man who has been HIV-positive since at least 1987, and who has been on ARVs almost continuously since 1990, I am reminded that Affecteds have always had the option to consider alternatives to conventional pharmaceutical treatment. Last night we recalled some…

Picture of baby Rico Martinez Nagel, with stomach tube delivering AZT and other drugs.

A tale of two AIDS babies

Just a few days after news about Baby Rico broke among bloggers and other AIDS dissident outlets last week, AIDS researchers scrambled to find a way to push a very different story to the top of the corporate news chain this morning.  “Baby Cured of AIDS” scream the headlines. No need to repeat all…

picture of crazy lady

Insane. Me?

After meeting with my orthomolecular doctor last month to update him on my current status, and to discuss the goals I hope to accomplish this year, I found myself sitting in a chair in the laboratory draw station, waiting for Brad, the phlebotomist, to prepare all the paperwork necessary for the long list of…

Join me on my journey

Join me on my journey

Today is Valentine’s Day, and I am sitting in a motel room in Wichita, Kansas, pondering: how do I dare ask friends, family and strangers to give me money so I can continue to experiment with alternative health therapies? The painful answer is:  I have no choice, but to try. I left KC at…

Just another tease

Here’s another short outtake from the pre-show walkthrough that John Grosso and I had in a G+ Hangout On Air (HOA) earlier this week for tomorrow evening’s Rainbow Show. Live stream begins at 7 pm CST.     Please drop in to view the show live, and ask questions via the comment stream on YouTube or Google+….

Sunshine in the veins

Sunshine in the veins

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 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.

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.

The F word

The F word

Enough already with the critics and detractors. I haven’t been doing a very good job lately of keeping current with documenting my personal story, which was and is one of the primary purposes of this blog.

Despite the gruesome pictures from an earlier post, I am not currently experiencing any horribly disfiguring outbreaks, lumps or other obvious manifestations of poor health. The skin on my left leg has healed nicely and is completely intact, with no breaks, scabs or sores, for the first time in more than a year. The mystery lump on the right side of my face, under my jaw, has shrunk considerably, though I can still detect it. My smile is still crooked, due to what I assume is now permanent facial nerve damage resulting from Bell’s palsy. I also have a few persistent skin sores on my shoulders and back that are resisting healing.

I can fall asleep anywhere, anytime.

Other than these minor nuisances, my body seems fine, for the most part, and people who have known me for some time, assure me that I “look good”. What is not so obvious is the extreme fatigue (the F-word),

The numbers game

The numbers game

I’m still trying to wade through the results of several tests that have been done, and I summarize some of the important things I’ve discovered in a youtube video. While I have a lot of new information, I don’t necessarily have the answers yet, just more questions.  At least I now have a better…