Thursday, July 24, 2008

Summer 2008 Update

Seasons have come and gone since I last posted. I am happy to report, though, that six months after starting a more traditional anti-retroviral treatment, I am now "non-detectable." In addition, my CD-4 count has climbed above 350 (and is probably even higher, by now). Just goes to show that, sometimes, you should actually listen to your doctor. Here are a few highlights:

  • After dropping down to roughly 170 lbs., I am back up to 215 lbs., which means I'm actually a bit overweight, now. Better than looking like an emaciated holocaust victim, though!
  • The chronic diarrhea is all but gone. Diarrhea is, of course, a side-effect of anti-retroviral treatments, but it's nothing like the diarrhea hell I experienced, last fall and winter.
  • My mental state is much improved. Although I still have "brain farts," I feel like I've regained most of my mental faculties. Additionally, the associated depression and anxiety have greatly subsided.
In closing, I wish you all well, and I hope that my story has helped to underscore the importance of aggressively treating HIV with proven therapies. Until a valid cure has been found, the moral of the story is that the risk of deferring anti-retroviral treatment in favor of experimental naturopathic treatments is much too great. 

Sunday, January 27, 2008

So long, for now

I realize it has been quite awhile since I have posted an update. All two of you have probably wondered how the trial is going, whether or not my counts came up (or down, as the case may be), or when I might pronounce that I'm cured. As the case actually is, I decided to end the trial around Christmas time.

This past fall, I hit quite a rough patch. Physically and medically speaking, things just weren't getting better. I had begun to adjust my routine to fit the chronic diarrhea. Some days I could eat, some days I couldn't. I began losing so much weight so fast that people at work started doing double-takes when they'd see my gaunt face. Miraculously, I can now wear size 32-waist jeans. OK, although that might sound appealing to the waist challenged, I wouldn't exactly call it the quintessential weight-loss holy grail. A year ago, I was a whopping 228 pounds; as of the other day, I was holding steady at 174.

Despite the AIM case manager's insistence that all of this was a good sign -- my body was supposedly purging and detoxifying -- I had basically crossed into the AIDS zone. My CD-4 count remained at or below 100 and my viral load peaked at about 165,000. After being poked, prodded and "-scopied" from above and below, it turns out that the ballistic bowel movements were related to "candida esophagitis," essentially a yeast infection in the digestive tract. Can you say, "opportunistic infection?" Not surprising, really, given the persistent thrush I had been experiencing for months and months. If only the coolly clinical but decidedly non-intuitive GI doc had thought of that... (No wonder medical costs are skyrocketing.)

To top things off, my mental state was deteriorating at roughly the same pace as my weight loss. The various "vertigo" (i.e., dementia) symptoms were getting worse, and I was having a hard time coping with everyday, routine tasks and conversations. This all came to a head in Europe when, after working at a trade event for three days, I had a major meltdown. Let's just say that health care may be free in Europe, but I wouldn't exactly call it compassionate or caring. And then, there was the fatigue. My energy and stamina had all but left me, and I eventually spent most of Christmas day feeling miserable and/or sleeping on the couch.

Anyway, back stateside, I began to seriously consider a more conventional anti-retroviral therapy. I ultimately decided to give AIM until the end of the year to produce some tangible results. When my December labs came back with a lackluster, status-quo result, I realized it was time to quit risking my health -- and probably my life -- on an unproven and unsanctioned treatment that, for all I know, could be one of the unapproved "goat serum" derivatives, about which the FDA has posted the following advisory:

I have no way of knowing whether or not AIM is related to or derived from goat serum, but I do know this. When I began treatment, I was asymptomatic, my counts were stable and I felt pretty good. My goal was to avoid life-long drug therapy and it's reported side effects. However, as a friend duly noted, I was certainly experiencing a lot of negative side effects while on AIM. I can't say with certainty that AIM produced those effects, but six weeks after ending the AIM experiment and three weeks after beginning conventional drug therapy, I'm already seeing a difference. The diarrhea is becoming less frequent, my energy level is improving, and my mental state is improving. My next checkup is coming up, this week. I'll let you know how it goes.

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Wednesday, November 21, 2007

Two steps forward, one step back

I was fortunate to have visited Barcelona, Spain, earlier this month. It was a working trip, and I admit I was overwhelmed at times. However, I soaked in the beauty and culture and also found the people to be warm, open and passionate.

Upon my return, my latest labs were waiting. This time, they decided to wait 28 days to pull labs vs. 24 days, but there were some mixed results:

Viral Load: 118,130 (about an 11% improvement)
CD-4: 89 (about a 40% decline)

The docs have thus decided to begin treating me every two weeks instead of once a month. I'll get 10ccs during each bi-weekly injection. The theory is that, possibly due to my size, I metabolize the therapy faster than other patients.

I'm hangin' in there, but I think we need to see dramatic results by year's end or it may finally be time to terminate the protocol.

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Wednesday, September 26, 2007

A distant sunrise on the horizon?

Last time I wrote, I was pretty much an emotional wreck. That much hasn't changed, really. However, my outlook is beginning to improve. After receiving a whopping 30ccs of AIM therapy in late August, I anxiously (if not eagerly) awaited my September lab results. My hope was that my CD-4 count would climb back above 200, but my more realistic expectation was that we'd at least see some sort of course correction. More than anything, I wanted to be able to demonstrate some quantitative proof to my ID doctor that this therapy is effective. Further, I wanted to pad my rebuttal arsenal with solid evidence reinforcing my desire to delay anti-retroviral treatment. In the end, my expectation was the more reasonable.

Here are my latest lab results:

VL: 132,000 (down from 249,000 - a 53% improvement)
CD-4: 146 (up from 122 - a 17% improvement)

I completely understand that the viral load is a transient number, and that the CD-4 count is really the more telling benchmark. However, this is still progress. For the last 3-4 months, it felt like I was on an accelerated -- and decidedly downward -- spiral. Today, though, I was able to regain at least a glimmer of hope in the efficacy of the AIM protocol. No, this wasn’t the 180 turn-around I had hoped for, but perhaps we’ve finally begun to turn the corner, as it were.

Symptom wise, I’ve pretty much experienced the same ups and downs as in previous treatment cycles. Week 1: feel like crap. Week 2: feel really good. Week 3: symptoms like “vertigo” and fatigue return. Week 4: start over.

However, this time, a new symptom new cropped up – projectile diarrhea. Not fun. It was an every-other-day-type phenomenon. One day, I’d have diarrhea all day long. We're not talking your garden variety diarrhea, but urgent, if-you-gotta-run-but-you-ain't-having-fun diarrhea. Then the next day, back to normal. The next, diarrhea again. And so on. On the diarrhea days (haha, if I hadn’t lived it, this would sound very comical), I wouldn’t be able to eat much due to a general feeling of nausea. The doc says that these are sloughing-off periods. In other words, my body is detoxifying itself. On the plus side, I’ve lost five pounds in the last month (probably all water weight, though :/).

In addition, my upper sinuses seemed to be perpetually congested. What’s more, I began to detect a strange odor and taste from the constant post-nasal drip. It probably has as much to due with fall allergies as it does with AIM, but up until now, my sinuses haven’t played much of a role in my AIM experience.

So, for at least another month, my AIM experiment will continue. I am cautiously optimistic that next month’s report will establish that the September results weren’t just a statistical blip.

Until then, peace to you and yours.

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Sunday, August 26, 2007

What to do? What to do?

This weekend, I received my latest series of AIM injections. My butt is on fire (literally hot to the touch) and I've had flu-like symptoms, as well. I also received my latest labs, this week, which have set of a bit of a firestorm with my primary care and ID doctors. If I was at a decision point, last month, the current situation is really starting to call my bluff.

Here are my latest stats:

Viral Load: 249,000
CD-4: 122

In purely clinical terms, I guess this means that I've pretty much made the transition into AIDS territory. Even so, I've been bombarded with opposing opinions about what these figures really mean. On the one hand, my primary care doctor has effectively handed me off to the ID doc, ceasing oversight of my AIM experiment. My ID doc, however, has been opposed to this trial from the beginning, and states that anti-retroviral treatment is indicated well before one reaches these levels. I was able to convince him to wait one more month before forcing a decision about anti-retroviral meds, but he insisted that I at least get started on Bactrim (an anti-biotic) to protect me from PCP (pneumocystis pneumonia). I really hate taking anti-biotics, but due to my diminished confidence in the AIM treatment protocol, I consented.

On the other hand, I have the AIM folks telling me that this is all to be expected. They say that my body is actually rebuilding non-infected t-cells, and that the t-cells I do have are healthier and more responsive than someone with a higher CD-4 count but where those cells are infected. Further, they point out that I haven't been sick (other than the prostate infection) during my year on AIM, and they also mention that my strong injection site reactions indicate a very good immune response. What troubles me, though, is that every time I report my general condition and symptoms, the AIM folks get defensive and try to shift blame to other factors. In my opinion, researchers conducting a clinical trial should approach my condition-related reports without bias or a ready rebuttal. The AIM folks have even gone so far as to call into question the efficacy of the labs that I use (per insurance guidelines), requesting that I only use one of the two major labs here.

One other thing that's causing me to have doubt is this. I was originally told that I'd reach undetectable levels after six months, with the subsequent six months of maintenance treatments designed to leech out any latent or hidden virus. Here we are, a year later, and my counts are worse than they've ever been. I'm no clinician, but even I have enough sense to realize that I'm literally betting my life on this regimen. I realize that they've switched me back to the original AIDS formulation, but is it too little too late?

The thing that really troubles me is that my memory, concentration and focus have really diminished over the summer. I am having a difficult time composing this post, in fact, something that used to come very naturally to me. I am further concerned that these symptoms, coupled with fatigue, will start to have a noticeably negative impact on my work performance. It's a catch-22, really. I have got to keep the job in order to maintain health coverage, and despite my doubts, AIM could still come through for me. However, if I lose my job because of a stubborn insistence that an experimental treatment will result in a cure, I am risking everything. If I were to become unemployed with full-blown AIDS, what then? Institutionalized health care? Bureaucratic case workers? Partial or full disability?

What would you do?

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Tuesday, July 17, 2007

Decision points

I received my latest lab results, today. Although my last AIM treatment was still composed of the newer, modified AIM formulation, I still had high expectations for continued improvement. Instead, my counts have moved in the wrong direction.

VL: 155,000 (up from 96,000)
CD-4: 202 (down from 285)

At this stage of the protocol, I had fully expected that my viral load would be at or near zero, and my CD-4 count would be closer to 500. For whatever reason, that is just not the case, and I am beginning to feel like it's time to consider more conventional treatments (as much as I would prefer to avoid a life-long drug regimen).

As mentioned last time, July's treatment will be composed of the original HIV formulation, and I have decided to give it a fair shake. However, if my August lab results show continued movement in the wrong direction, I will have to consider my options. Although so many other symptoms have improved over the last ten months, persistent minor symptoms (such as thrush, fatigue, memory issues and insomnia) continue to plague everyday life. Lately, I've also started to develop a persistent pain in my chest. That pain grows progressively worse in the afternoon and evening, and at times, makes me feel very faint.

I'm choosing to remain optimistic, but I can't help feeling some doubt where only hope once resided. I could use your support and encouragement during this time.

Saturday, June 30, 2007

Quit dilly-dallying around

...As my dad would say when we were kids. Yes, it has been two months since my last post, but I keep waiting for some "big" news to deliver. At the moment, things are pretty much the same as they were back in April. After my no-fun prostate infection, it seemed like perma-fatigue really set in, persisting into the present. Paradoxically, I've also been battling insomnia. Lo and behold, that's another one of those under-reported HIV symptoms. My doc and I didn't want to rush into using the more powerful prescription sleeping aids, but after much trial and error -- and a couple of visits to a neurologist and a pulmonary sleep specialist -- we've found Ambien to be the most effective treatment. The insomnia was literally driving my nutty, but for the moment, it's back under control.

As for AIM, I received two smaller doses in May and one big one about 10 days ago. They are saying that they're going to revert back to the original formulation for AIDS patients, given my slower-than-expected rate of progress. They've been trying to standardize a formula (production costs are very high, both in terms of labor and raw materials), but true to form, I'm proving to be the "exception." I haven't had blood work done for awhile, and the next set of labs won't happen until mid-July. Until then, I thank you for your warm thoughts and prayers.

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