I had my first parotid cyst at least 25 years ago, long before I ever tested “positive”. I blogged in March about being diagnosed with Bell’s palsy, presumably caused by “HIV”, simply because I tested positive. About that same time I began to experience what I thought were “swollen glands”, a condition I frequently…
My role as a gay AIDS activist was first featured in a special report on AIDS in the Kansas City Times, July 8, 1989. I recently unboxed some of the early media accounts of my life as an openly gay AIDS activist in Kansas City. The very first words in the very first article…
I could not help but feel a dark cloud lift when the news broke that Fred Phelps had finally died. I’m not particularly proud of that first reaction: one of relief and even something akin to happiness. I didn’t dance around the house right away, but after the news sank in, I admit I did pull up “Ding Dong, the wicked witch is dead,” by the munchkins.
Why would my reaction be considered hateful or negative? I think it was extremely human and natural, if not a bit disrespectful. Like I care if Fred knows I have zero respect for him?
I never imagined that Fred would die like this: alone in a hospice, rejected by much of his family, excommunicated from the cult/church he founded. I expected one of two different stories when his obituary was published.
The latest round of OAT, stool and conventional “HIV” surrogate test markers are in, and the news is mostly good. Regardless of which angle one looks at these laboratory test results from, there is evidence to support an evolving thesis that a multi-faceted approach to immune dysfunction might be as efficacious as the current pharmaceutical-based guidelines for treating “HIV/AIDS”, minus the worst of the adverse effects. The not-so-good news is that the continuation of this seven year long experience (experiment?) is being jeopardized by the lack of financial resources. There, I said it, and I won’t mention it again until the end of this post.
Janine Roberts may well be my favorite investigative reporter on the topic of AIDS and HIV. She has published several books and produced documentary films, on topics ranging from Aboriginal resistance to British colonialism in Australia, to the shame of deBeers’ diamond mining operations in Africa.
Janine has also written the much more personal story about her life as a transgendered person—The Seven Days of My Creation: Tales of Magic and Gender.
The book that has most helped me form an alternative view about what the heck HIV might really be, and its role in the disease most people call AIDS is titled Fear of the Invisible.
As the winter solstice approaches, I am aware of what a noteworthy month this December is for me, in ways that have nothing to do with the holidays. Fifteen years ago this month I was informed that I was “HIV-positive”. Five years ago, I started this blog, primarily to share my experiences with both the diagnosis, as well as previous and new health issues. I will be sharing some exciting news about some changes that will be happening to resistance is fruitful a bit later in this post.
Stop the nukes! No, not nuclear weapons. Well, yes, those too, but today I’m writing about the increase in reports I’m seeing from the AIDS drug medical literature calling for an end to the use of nucleoside(tide) reverse transcriptase inhibitors (NRTIs), not-so-ironically referred to as “nukes”. As I have written previously, there have been rumblings from clinicians and researchers in the medical literature since at least 2010 to get rid of the NRTI class of antiretroviral drugs entirely from treatment guidelines.
Unfortunately, it is unlikely that this change will occur at anything comparable to the speed with which AZT and other poison pills were “fast-tracked” to market more than 25 years ago.
Some folks who have read my story about quitting AIDS drugs and nearly two dozen other prescription drugs seem to think I attribute my improved health to that choice alone. It isn’t that simple. There is no doubt in my mind that taking so many prescription drugs, even under the care of physicians,…
The first real bombshell dropped about six minutes into our chat, while talking about ARV drugs. Almost too casually, JTD said “I haven’t been on meds for going on 14 months now.” I had not yet publicized my own decision to start taking ARV drugs again, though I had dropped some pretty serious hints in our email exchange about “going over to the dark side”, and I was sure he knew I was planning to restart them. The irony of JTD’s comment hit me like a slap in the face. “I can’t believe that,” I told JTD, “you quit the drugs, and I’m getting ready to take them.”
This was probably the pivotal point in our conversation where my doubts and apprehensions about JTD started to soften.
I am dumping a lot of summary information here, without getting into details, but I need to start somewhere. When I zoom out and look at the big picture, it is clear that I am still a long way from being a “healthy” person, and frankly, I no longer expect to become one. The goal now is to mange chronic disease and maintain as good a quality of life as I possibly can.
This site is no longer updated, but kept online for reference. You should not see this popup notice on future visits.
While much of the information on this site is no longer current, it represents almost a decade of my life. It was a period of considerable reflection and writing was my therapy.
I have moved on from that era and am now moving into what will undoubtedly be the last chapter of my life. My love for writing and telling stories-mine, as well as those of others-goes with me. Join me, if you will, at jondbarnett.com for the adventure.
