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.

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.

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?

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.

Slow and steady wins the prize

Got my latest lab results, and we are seeing some progress. Not as dramatic as I was expecting, but progress, nonetheless. My viral load is nearly half what it was in February, but my CD-4 count is nearly the same. Here are the latest results:

VL: 96,000
CD-4: 285

So, still a ways to go. The docs have decided to give me smaller weekly doses for the next few weeks, partly to see if it helps with the bout of insomnia I've been struggling with for the last month. Otherwise, things are pretty much status quo. Although I had a nasty prostate infection, earlier in the month, that condition appears to be unrelated to my AIM treatment. Anti-biotics and prostate meds seem to be bringing that problem back under control (although I hate taking anti-biotics...). Until next time, peace to you and yours.

Turning the corner

Although it's been awhile since my last post, my intent, from this point on, is to use this blog mainly to post updates and milestones. I'll continue to post other content, as the need arises, but now that I'm seven months into this treatment protocol, I think we're all most interested in one thing: the results!

My most recent lab results were, unfortunately, screwed up. The nurse at my doctor's office was a substitute, and she incorrectly marked the lab form to test for Lyme's disease, but not HIV. Apparently, both tests use a form of the Western Blot method. However, we did get a good CD-4 result, which shows continued improvement. Here are the most recent stats:

3/14: CD-4 - 289

2/13: CD-4 - 272, VL 177,000

Given that my CD-4 had dropped as low as 232, earlier this winter, this is pretty significant progress.

Otherwise, I just received my latest injection on Saturday. Other than having some flu-like symptoms on the first night, the reactions continue to become shorter in duration.

Next month, we will repeat the labwork, but at that time, they'll include a test for the P24 protein marker. This will apparently measure the virus' ability to replicate, with the expectation that it will be very low or non-existent. Otherwise, now that we're past the six-month point, we should begin to see very dramatic improvements. Symptom wise, that is already very much the case, with so many of the chronic or low-level symptoms either improving, or disappearing altogether.

Stay tuned.

Pork bellies are falling

Wow, time flies. I can't believe it's been over a month since my last post. Holidays and such, I reckon. (Or, the more honest answer is that I'm a terrible procrastinator when it comes to blogging.)

Alrighty, then. I have received two AIM injections since my last post: One on about Dec 20th, and another last Thursday. In each case, the reactions were initially mild. However, about ten days after the December injection, I noticed that some of my symptoms began to increase at an alarming level. My vertigo and (officially unofficial) dementia symptoms got really bad over the New Year's weekend, to the degree that I sort of lost a few hours' memory. I felt detached from my body, but not in that good "drunken stupor" kind of way. Then, poof. It was pretty much gone (although it comes and goes, to a lesser degree, all of the time). This time, at about day four after injection, I am feeling kind of flu-ish, which may or may not be attributable to the injection.

In the meantime, I have noticed some strong improvements in my digestion, which has always been problematic for me. Let's just say I'm way more regular and leave it at that. ;-) Further, the cystic acne (that has plagued my back since shortly after my diagnosis) has improved, dramatically. Although, I do seem to experience a mild breakout at about day five after injection. Oddly enough, at the mid-way point between injections, I get these strange acne breakouts all over my earlobes, especially on the right earlobe. Weirdness.

On to other topics. There was a bout of drama since last time, though, as I had my blood drawn about a week too early. After the Dec 20th injection, I agreed to get another set of labs in about three weeks. I didn't realize that it was a literal three weeks, so sixteen days later, I had my blood drawn. (It felt like three weeks.) Anyway, the two-week point is apparently when the medicine reaches its peak, meaning that the viral load and other metrics will seem artifically high (or low as the case may be) at that point in time. At the same time, my thrush symptoms had gone ballistic on me, causing me to break down and get a Nystatin prescription.

Anyway, my regular doctor about had a meltdown when he saw the results of that initial blood test. My VL was >100,000, but what really concerned him was that my platelet count had fallen to 38,000. Immediate talk of drug regimens ensured. However, my regular doc decided to have the lab draw another blood sample to re-test my platelet count. And, thanks to ice storms where I live, I was able to forestall a pharmacological intervention. When that second test came back, my platelets had already returned to a more normal range of 138,000 (he didn't re-test for HIV.) Interestingly, I fessed up to my regular doc about AIM and asked him to exercise a little bit of restraint. His response was decidedly negative, as expected, but he left it up to me to decide how to proceed. However, he declined my request to meet with the AIM folks to discuss the protocol and the expected symptomatic milestones during the protocol.

So, if things go as planned, I should be on the cusp of a major positive turnaround in my VL. I am going to try to have another blood test done in three weeks. Cross your fingers. The news, next month, may be pretty amazing!

Strange things are happenin'

Since receiving my last AIM injection, earlier this month, I have really begun to notice an accelerated series of biological and constitutional reactions. First and foremost, my chronic digestive problems have dramatically improved, of late. My very annoying but constant companions, constipation and reflux (diagnosed as IBS, years ago), have suddenly gotten much better. I have become much more regular (yeah, I shoulda warned you to cover your ears), and my ever-persistent reflux symptoms, have all but disappeared.

But what really makes me certain that something's going on, deep inside of me, is this constant feeling of vertigo that I just can't seem to shake. I am not sure if I would call this "euphoria," but I sort of feel kind of high and loopy, all the time. At times, it's more of a hollow and foggy feeling, and it sometimes scares me to think that maybe the HIV dementia symptoms will get worse before they will get better. I've also been sleeping more, lately, which is probably a good thing. Even though I feel tired, a lot, the years of low-grade insomnia have probably left me more than just a tad bit sleep deprived.

Anyway, I will get my next shot, later this week. Dr. T has indicated that, now that we've hit the three-month point, we should start to seem some dramatic and positive changes in my lab work. My next blood draw will take place in mid-January, so I am very excited to see if what I am intuitively feeling, inside, will be validated by my labs.

Should I not have a chance to write again before the holidays have come and gone, I wish you warm and happy moments with those you care about, most.

Sailing smoothly

Got a shot on Friday, and now we're cooking with gas! The least reaction, yet. One poke in the right cheek, and other than a more painful (think bee sting) injection than usual, the after effects were negligible. A little bit of swelling and heat the first night, but as of now, just a little bit of redness. Phew! The doc got it right, again!

It's only a flesh wound

Yesterday, I received my first follow-up treatment. Again, now that the loading phase is complete, I will now receive a single treatment, each month, through August, 2007.
For whatever reason, my butt is on fire after yesterday's treatment! I received a half-dose in each butt cheek, and initially, had very little reaction. However, by the end of the day, the injection sites had become painful, hot and swollen. This reaction also occurred during the loading phase, but not as severe. I know this is an expected reaction, so I am not at all concerned. Last time, the discomfort gradually abated over about a week.

While I was sitting in Meridian's waiting room, I had a really interesting conversation with the folks at Meridian's house. I was amazed to hear one prevailing theory about HIV's origins. I was told that, although the jury is still out, many believe that HIV was engineered by the Germans during World War II. As the story goes, the well-known Nazi genocide programs were becoming costly and difficult to manage. HIV presented the supremicists with a stealth means to wipe out the "undesirables" without direct blame. I have no independent verification about this claim, but I do love hearing conspiracy theories.

The other interesting thing that I heard, yesterday, is that the AIM treatment protocol, in third-world countries, is far less intensive. That's because the various AIDS cocktails and HIV meds have, over time, caused the HIV virus to adapt and become much more resilient. US strains, in particular, are much more difficult to treat than those in less developed countries. As they described it, HIV meds only mask the virus, forcing it into retreat. Like an earthen dam during a heavy downpour, eventually the virus breaches the artificial pharmacological "defenses," and when that happens, the patient's health degrades very rapidly. Just one more reason for me to forestall pharmaceutical treatment.

Je Suis Fatigue

I have this endearing (to me, anyway) tendency to do my research after having jumped headlong into something. In this case, I listened to the AIM radio testimonials podcast over the weekend – after getting my three loading doses of AIM. It was then that I learned about some of the initial side-effects of AIM.

First, I found out that approximately one week after treatment, the injection site usually becomes somewhat hardened and itchy (as I try to sneak a scratch here at my cubicle). Doh. Anyway, I now know that the best place for these injections is the butt, not the abdomen. I now have this big red bump, with a slight bruise encircling it, on my belly. As if I weren’t already self-conscious enough in the gym! Hah. Who knew?

Otherwise, the most notable post-treatment side-effect has been massive fatigue, although I have no way of knowing whether or not there is a direct correlation. I have always had low energy issues, but this is kind of like having a low-grade flu over a period of several days. As I understand it, though, the AIM patient’s body will naturally start “asking” for what it needs while on the treatment. In my case, having had several years of insomnia issues, I think my body is simply begging for rest. I am usually wired at night, but not lately. Also, I have been taking naps much more frequently, and I run out of energy (i.e., doing boring chores) more rapidly than before.

Interestingly, my chronic back issues (arthritic, degenerative disks) seems to improve on some days, but not others. AIM tackles a broad array of inflammatory conditions, so if my back problems improve during the course of the treatment, all the better. BONUS!

Otherwise, I was finally able to speak to my primary care physician about AIM. He's a younger D.O., and is pretty open-minded to alternative treatments. He has agreed to supervise me while on AIM, and thus, I had my first post-treatment blood draw, today. I am anxious to see if the results bear out the expectation of an elevated viral load and/or a decreased CD-4 count.

More to come.