My HIV doc is following 1985 guidelines in 2010

 Posted by on 2010-05-03 at 2:25 pm
May 032010
 
11+ years of viral load testing

I continue to monitor my CD4 and viral load for a number of reasons that make sense to me, and as a result I can graph the last 11+ years of these numbers.

I have updated these graphs and posted them here so others can see how wildly variable these numbers can be.

According to the mainstream HIV/AIDS theory, if viral activity is UP, the number of CD4 immune system cells should go down. That is certainly not the case with my numbers.

More significantly, these laboratory markers do not track with my actual health. For example, my CD4 count increased both times I was hospitalized for DVT blood clots.  Conversely, some of my worst medical conditions, such as severe neuropathy and measurable brain inflammation, occurred while my viral load was at or near “undetectable” levels and CD4 counts were double what they’ve been the past several years.

When my most recent counts came back a few days ago, my viral load had more than tripled from the last count six months ago, and was nearly 10 times its level 9 months ago.  It is more than double the next highest count during the last 11 years, including at least a couple of “blips” (unexplained spikes in viral load that are either insignificant, or warnings of impending disaster, depending on who one listens to).

Chart showing CD4 counts

CD4 counts fluctuate wildly

At the same time, my CD4 count and CD4 % had both increased, an event which completely contradicts the mainstream explanation of “how AIDS works”.

Because my doctor (a board-certified “HIV-Specialist”) runs his own labs in-house, I wondered if this aberration could be a lab error, so I requested that he order new tests from an outside lab, such as LabCorp or Quest Diagnosics.  I also wondered if the recent Bell’s palsy might be affecting the test results.

Here is my doctor’s response:

Presently, the major indicators for starting HIV therapy is the CD4# not the viral load. We use to consider that to some degree but the CD4 count is the overriding factor for the disease.

I do not think it is necessary to redraw the test since the CD4 count is the major determinant and as that is OK, you are fine. I would not recommend any change in our treatment plan at present.

-Doc

I don’t know whether to laugh or cry. We are apparently back to 1985 in terms of how we monitor immune system performance and possible disease progression.

I cannot challenge him further without leaving his practice (a distinct possibility), but one has to ask:  what is the goal of HAART (Highly Active Antiretroviral Therapy), if not to reduce viral load to “undetectable”?

Why are thousands of people, especially gay men here in the U.S.  and Europe, being terrorized into taking ARV drugs based on these test results?

Doc can say what he wants, but the conventional wisdom being pounded in the heads of gay men via the media, community-based AIDS organizations, and mass marketing campaigns, is that the overriding objective for anyone testing “poz” is an undetectable viral load.

My doctor is an enigma, but in some ways I’m lucky. How many other doctors would be screaming at me to (re)start the drugs based solely on this test result?  I personally know of two of them, because I walked away from them when they tried doing exactly that.

I am disappointed though that he isn’t as interested as I am in ruling out the possibility of a faulty test, or other explanation for this latest “blip” in my viral load results.  I wasn’t asking to retest in order to consider taking HAART again.  It will take a lot more than a single test result to drive me back to that hell.  I simply wanted to verify the test result for my records.

I actually agree with and applaud Doc’s opinion that I not make “any change in our treatment plan at present”, because “our” treatment plan is to to nothing other than try to live as healthfully as possible… without pharmaceutical drugs.

Personally, I think Doc is tired of seeing his patients die of simultaneous, multiple organ failure.  I’d like to think that as much as we butt heads sometimes, some part of him is grateful to have even a few patients remain free of the common ailments affecting people on HAART.

It is his inability to see the flaws in his rationale that drives me nuts. I just want to shake him by the shoulders in the hopes he might wake up from his trance and join the rest of us in speaking out and speaking up about the anomalies (I am being kind by using that word) of the HIV/AIDS theory, as it is currently being practiced in the West.

It is the same tunnel-vision that that researchers in SF and other cities are using to try to justify mass drugging of “pozzies”, regardless of their overall health.  This makes no sense if viral load is not a critical measure of the level of “HIV activity”.

I do have to say that my appreciation for and support of those Affected dissidents who choose not to monitor these counts only grows each time I get my results.  They make a very good argument that getting distracted with markers that are not very meaningful can actually cause poor health.  I believe it.  Despite everything I’ve learned and know by now, I have to admit that when I first saw that spike on my chart, I felt as if I had been kicked in the gut.

It was just such a spike the caused me to restart HAART the second time in 2002 for eight months before quitting them for good.

The psychological toll of tracking a disease that is supposedly lethal is enough to make one ill.  It takes incredible  effort and energy to challenge the contradictions and inconsistencies of an entire industry created around this constructed and manmade disease that isn’t really a disease at all.  Unfortunately, the alternative is to passively accept ridiculous answers that include a lifetime of chemotherapy with combinations of toxic drugs.

Thanks, but no thanks.

I have made the mistake of making treatment decisions based on these lab results in past, and do not intend to repeat that mistake.  Still, I’m afraid that I have been tracking these numbers too long to stop now.  Like most options in life, there is rarely one “right” answer as to what is the best path to travel.  I have chosen this one and will continue to follow it, at least for now.

  11 Responses to “My HIV doc is following 1985 guidelines in 2010”

  1.  

    I know you don’t always appreciate my input on your health, but I saw this and thought with the DVT you probably already monitor your D~Dimer, PT, INR, PTT but this study suggests including hsCRP and IL~6. Just thought you might wanna see it.
    t.
    http://www.sciencedaily.com/releases/2008/10/081021073859.htm

    •  

      What would Baylor do without you as their online diagnostician?

      Just remember that if I die of a heart attack caused by a DVT clot, Todd, to be sure and tell your friends that I died from a “non-AIDS” event.

      •  

        I just saw this snarky reply. You really should learn to be humble and appreciate the fine line between help offered from sincerity and being an asshole.

        Perhaps if you learned a little humility and stopped being such an arrogant asshole, you might have better health.

        Extremely negative people such as yourself tend to manifest their own health issues. And from the litany of poor health issues you have, you are an even more angry, disturbed individual than I originally thought. Also, your anger at yourself goes way beyond your projection of that anger on me and others.

        JTD

        •  

          The line between sincerity and assholery isn’t really that fine, Todd. It’s more like a four-lane highway, actually. Just thought you should know that.

          In a previous comment you suggested that my health was good. I’m confused. Again.

          As for anger… stay tuned. I’ve got a post drafted about that very subject.

          You are so inspiring, Todd. Have I said “thanks” lately?

          BTW, when you requested that I stop “fucking with your life”, was that a one-way request? Or are you willing to cease and desist your harassment here as well? I really don’t want to continue bantering with you, and at some point I will put you back on the spammer list so me and others don’t have to read your tiresome whining.

  2.  

    Jonathan,

    I don’t say it often enough, but I’m grateful for your frank disclosure of what’s going on with your health and how your interactions with your doctor are playing out. Thank you my friend!

    Tony

    •  

      I know you don’t mean to imply that these test results mean my health is poor. It may be that having poor health contributes to some of these weird numbers though. So many things make no sense, but I’ll keep tracking and asking questions. Thanks for the supportive comment.

      •  

        I didn’t intend to imply any connection at all. I was simply thanking you for two separate things, your frank disclosures about your health and your experiences with your doctor. I can imagine it’s not easy writing about those subjects, and you’re brave for putting yourself out there.

  3.  

    I find this entire post very hypocritical. What is the point of following these results and getting so stressed out and fighting with a doctor you do not believe in over test results you do not believe in?
    Although your hypocrisy is consistent. If I remember properly, when you first got Bells Palsy, the first thing you did was call your Infectious Disease Doctor for a condition that is probably more neurological and probably not HIV related. Also it is hypocritical that you live off disability insurance and advise others to do so when you are very healthy and can work AND you fraudulently claim disability due to a virus you do not believe exists or is even pathogenic!!

    Keep up the hypocrisy, it suits you.
    JTD

  4.  

    Jonathan, you made a comment that I was your “nemesis”. I do not understand this. For me to consider you my nemesis would mean that I consider you my equal; you are not. You are not my intellectual equal nor are you equal to me as a human being. Please do not deceive yourself into believing that I ever consider you. Sorry to disappoint.

    As for the comment you made about your friends not taking their meds until before a doctor’s visit and then telling their doctors they are taking their meds as prescribed. What do you think you accomplished with that? To me, that only proves that your friends are deceptive, duplicitous liars, just like you. I guess it is true what they say, “birds of a feather…”

  5.  

    Thanks so much for posting this data.
    Do you know of any other people who are posting their HIV data online?

    •  

      The most comprehensive site I’ve seen for this kind of data is patientslikeme.com.

      I do questions how complete and accurate those self-reports are, though. I know I have not kept my own profile there up-to-date.

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