Who needs t-cells, anyway?

Baby Blast, by Patrick Gannon

“Throwing the baby out with the bath water” is an expression that implies that an entire idea, concept, practice or project doesn’t need to be rejected or discontinued if part of it is good.

The baby, in this sense, represents the good part that can be preserved. The bath water, on the other hand, usually is dirty after the baby is washed and needs to be discarded, just like the parts of the concept that are bad or useless.”¹

 

There seems to be a natural tendency among some skeptics and questioners that when part of a theory or concept is proven to be flawed, any and all other aspects about it should be dismissed as well.

This certainly seems to be the case for some AIDS dissidents when it comes to discussions about the significance of certain laboratory markers, in particularly certain immune cells involved in fighting infections, called CD4 t-cells. CD4 counts are, arguably, considered by mainstream AIDS experts as the single most important measure of disease progression and risk for patients acquiring opportunistic infections.

I often see leaders and role models in AIDS dissidence circles arguing that CD4 tests should be avoided by those Affected with a positive HIV antibody test result, because the results are “meaningless”, and that knowing them might even be dangerous.

I can’t help but wonder where they are getting this perspective.

Recently, an article written by Clark Baker that does a pretty thorough job of laying out all the ways current test results can be flawed (The Alchemy of Flow Cytometry), is priming the forums on Facebook and Questioning AIDS for a new round of these assertions.

The usual specious arguments about the shortcoming of t-cell testing are raised nearly every time someone newly arrived to AIDS dissidence expresses concern about their own low CD4 counts, or a single recently reported drop in their CD4 cells, based on their latest test result.

It’s not that there aren’t some very good reasons to take a CD4 test result with a grain of salt… there are plenty of them. The problem arises when these known flaws and weaknesses are used to dismiss a serious and well-documented medical condition that is often presaged by the loss of CD4 cells: collapse of the patient’s immune system, followed by infection, often leading to death, if ignored.

We can start draining some of the dirty bathwater right now by getting the shortcomings of CD4 testing that nearly all AIDS dissidents agree on out of the way:

• CD4 counts can vary greatly in the general population. Baker points to studies in the insurance industry as one example. People are being denied medical insurance based on “low” CD4 counts (normal, in this reference is defined as 430-1637), even though they are not HIV-positive and who do not have AIDS.
• CD4 test results can vary considerably from day-to-day and even hour-to-hour. Everybody’s counts are typically higher in the early afternoon, for example.
• Any number of variables in the collection, storage, transport and testing equipment and procedures can affect the outcome of the test. In fact, this seems to be one of the key points Baker uses to argue that the tests are fickle, at best and farcical at worst.

So, do all of these shortcomings, flaws and failings of the medical technology used to measure t-cells mean that those people in the original high risk groups for immune dysfunction and those who test positive to HIV-antibody tests should avoid and ignore CD4 test results?

[pullquote]The very fact that such wildly varying ranges are in use, should tell us that the AIDS industry is pretty much guessing about what is “normal” when it comes to CD4 counts…[/pullquote]Hardly. All medical tests have their limitations, and patients need to be cautious about putting too much emphasis on any individual test result. This is just another difference between the AIDS orthodox, which uses a single CD4 test alone to make treatment decisions, and an informed, questioning patient who chooses to look at much bigger and more complex pictures when evaluating their health and possible illnesses.

Disease, and especially the collection of immune-related illnesses that have come to be grouped together and called “AIDS” have a variety and combination of causes. Not all people with a positive antibody test are sick, but the odds that there is something adversely affecting their immune systems are heightened. CD4 counts are but one marker that can be affected.

Most importantly, especially when considering markers with a wide range of variability, like CD4 counts, there is a difference between relying on the aberrant and outlier test results, and using the information that is available from the accumulation of numerous repeated tests. If you take your temperature with a digital thermometer, and the results is 73.2 F, you take it again. Either the results will come back in a more reasonable range, or you try a different thermometer. If the second and third thermometer also report 73.2, you know you have a serious medical problem.

If your home blood pressure kit returns a result of 33/55, with a pulse of 12, you take the measurement again. If you’re wearing a bulky winter sweater under the cuff, you can expect aberrant results.

These are silly, extreme examples I am using to make a point: while there may be reasons for inaccurate test results, there are often ways to address them, and one of the best ways to eliminate (or at least average out) inaccuracy is to consider cumulative results, rather than individual ones.

Another, even bigger problem I encounter in this debate is the definition of “low” CD4 counts. Unlike the examples of blood pressure and body temperature used above, the range for “normal” CD4 counts is huge, if you can even find an expert source for what is “normal”. These cells weren’t even identified until the 1970s, the decade before AIDS was first noticed. In the insurance industry report cited above, the so-called normal range for CD4 counts is 430-1637. The CDC says 500-1000; aids.org reports 500-1600; blogger chezfat claims the range is 700-1300; an AIDS expert on thebody.com says 500-1500; and the NIH doesn’t even want to guess, telling patients to “talk to your doctor”.

The very fact that such wildly varying ranges are in use, should tell us that the AIDS industry is more-or-less guessing about what is “normal” when it comes to CD4 counts, and it doesn’t take much of a conspiracy theorist to suspect that the pharma-backed AIDS orthodoxy would like to set the threshold for starting drug treatment as high as possible. Hence the tendency to declare a CD4 count of 500 as “low”. Early on in the AIDS epidemic the number of CD4 cells found in patients was “nearly non-existent” before the folks at CDC decided to set the danger threshold at 200. Since then the number keeps getting raised, first to 350, and then 500, and now, it doesn’t matter. Anyone testing poz will be offered the drugs.

For more reasons than just inconsistency and lack of agreement, I have found absolute numbers to be rather useless in this discussion anyway. Instead, I have resorted to using the number of digits to try to put forth a case that CD4 counts are not always meaningless and irrelevant.

All of the above official references put the definition of “low” CD4 counts in triple digits, which also just happens to be the number of digits in most of the so-called normal counts. So when I see a concerned post on one of the dissident discussion groups, from someone new to AIDS dissidence freaking out that their CD4 count dropped from 380 three months ago to 350 last week, like many of my fellow dissident activists, I sort of cringe and shake my head. Such a change in numbers between two test results over three months is, indeed, meaningless, and the same differential could have occurred if the patient had tested at 9 am and again at 1:30 pm the same day, or had identical blood tested at two different labs.

This is the mucky, dirty bathwater of CD4 testing that so many Affecteds find themselves in. No wonder we all feel like throwing it out.

However…

There are at least two other circumstances where I consider CD4 counts in a very different light.

One is the patient who has chosen to have their CD4 counts checked regularly over a period of years, if not decades. I include myself in this group. I have more than 80 test results over a period of 13 years now. I have enough experience in data analysis to consider that sufficient information for making some observations and even some assumptions.

The first thing the data in the following chart tells me is what we hear most often from AIDS dissidents: CD4 counts fluctuate wildly, and in my case, that fluctuation existed whether I was taking ARVs or not. Here’s what tracking 13 years of my own CD4 counts in an Excel spreadsheet looks like (the blue bars represent the times I was taking HAART—Highly Active Anti-Retroviral Therapy):

Who can make sense from these numbers? I can’t. I used to try to find correlations between increases or decreases, but it is rare to ever see more than two or three data points in a row going in one direction. I call this the ping-pong chart.

With the help of a trendline, it becomes more apparent that there has been an overall decline in my CD4 counts during the 13 years of data collection. Possible flaws of flow cytometry and CD4 testing tend to diminish, due to the time and number of tests that have been done.

By the time one accommodates the fact that CD4 counts decline naturally with age, I suspect and hope that some of my efforts to improve my health have also helped to greatly slow down the decline of my CD4 counts. For comparison, consider this similarly constructed chart that Emery Taylor asked me to create, using his own numbers, prior to his death almost a year ago.

 

I’ve plotted Emery’s numbers using the same ranges of numbers on both axes of the chart, so they can be compared. Emery did not have as many datapoints, nor did his data cover as long a period of time as mine does, but it is not an insignificant amount of data, in my opinion. What I notice is the degree of decline represented by the trendline. Emery fit both the profile of having a rapidly declining CD4 counts, as well as two consecutive “low” counts, near the end of his life.

I am not trying to give comfort to the orthodox enemy by choosing to use Emery’s numbers. That’s just what I happen to have access to. Because the dissident spiel that CD4 counts don’t matter is so shrill, it is rare to find AIDS dissidents who post their counts publicly. That’s a shame. Knowledge is Power, and who knows what we could learn about the relevance or irrelevance of CD4 counts, if more of us did track and share them?

What is the meaning of meaninglessness?

This is where I part company with so many of my AIDS dissident peers. These numbers are not entirely meaningless. Out of the chaos of fluctuating variables, there is sufficient data to discern a trend. What the trend actually means is a fair question for debate, discussion and disagreement, and it deserves to not be dismissed out of hand as meaningless and insignificant.

I consider my “numbers” are actually pretty damned good for someone who has been living with a positive diagnosis for more than 13 years now. According to the AIDS mainstream, I should be losing about 100 CD4 cells per year, though the record suggests something closer to a couple dozen. If CD4 counts naturally decline with age, which seems probable, the adjusted loss would be even lower. I cannot discern a correlation between any particular course of action that might explain the low rate of decline for myself, but—unlike Emery, apparently—I have tried several wholistic, nutritional and alternative protocols to boost and balance my immune system.

I choose to not feel guilty admitting that the overall decline concerns me enough that I intend to continue to try to find ways to keep these numbers as high as possible as long as I can, without resorting to ARVs.

The other circumstance that I would take CD4 counts seriously would be the case of someone who gets tested while hospitalized for an illness, for example, or for any other medical problem, and learns that their CD4 count is single- or low double-digit. There’s nothing magical about this threshold, I have just chosen to draw a line somewhere. It is just not reasonable, in my opinion, nor responsible to suggest that there’s nothing wrong with a person whose test results repeatedly return 4, or 18, or even 55 CD4 cells.

In cases such as these I follow the definition of “low” CD4 counts used by those who observed the originally identified AIDS patients: “nearly non-existent”.

The Bathwater

As an AIDS dissident I will continue to emphasize to newcomers and veterans alike that trying to make sense of a single CD4 test result is an exercise in futility. Like trying to understand how one turn left and two turns right will lead you out of a maze is confusing only until you can zoom out and see the bigger picture that may be available to those with a history of tracking these counts.

(click to solve)

Instead of trying to decipher the maze, by tracking the options—right or wrong—and sharing our communal knowledge, too many AIDS dissidents simply dismiss the maze as either non-existent, meaningless, or irrelevant.

As an AIDS dissident, I continue to assert that CD4 counts may not be the most reliable indicator of immune dysfunction and risk of disease progression. We need to do a better job of identifying and publishing a list of those markers that do a better job of measuring immune health.

As an AIDS dissident, I continue to assert that CD4 counts do not correlate with the other commonly used test, PCR “viral load”.

As an AIDS dissident, I continue to advocate against the use of antiretroviral drugs (ARVs), solely to increase CD4 counts. Every person must weigh the possible benefits of ARVs with the known long-term risks. For those who do make an informed decision to choose ARVs, for whatever reason, there is strong evidence that the drugs need not be taken for life.

The Baby

Despite all of the known variables and fallibility of CD4 testing, we shouldn’t forget that:

Before “HIV” was ever announced and before AZT was ever dusted off its shelf and trialed, clinicians noticed that nearly all of the gay men dying of previously rare diseases like PCP and KS had very low (i.e. practically non-existent) or rapidly declining CD4 counts. This marker, as flaky as it may be, stood out to those who were treating the earliest patients, and until Gallo came along, CD4 counts were the defining clinical marker for a breakdown of the immune system.

I cannot find anyone practicing any form of medicine, allopathic or alternative, who suggests that a person lacking any subset of immune system cells can remain healthy for long.

CD4 testing is readily available to every HIV-positive person, at least in the U.S. and developing world, regardless of their economic status. Other, better tests, are often not covered by insurance or publicly funded programs, and therefore unattainable for many people at risk.

As an AIDS dissident, I will never stop examining better, less toxic ways to stabilize or reverse the decline of CD4 counts in those people experiencing them, other than the use of antiretrovirals.

As an AIDS dissident, I will continue to share my own experiences and, yes, datasets with others in the hope that we can try to find correlations and evidence between extremely low (single- and low double-digit) CD4 counts and illness, or even death.

As an AIDS dissident, I will always respect the informed choice of others to test or not test their CD4 counts and/or their PCR viral load, just as I respect those who make informed decisions  to take ARVs, after evaluating any possible benefits with the known risks.

I am writing this because I feel like a lonely voice in the conversations I read online. It seems that the decision to dismiss CD4 counts as meaningless is quickly becoming a De facto statement of Faith for those who find themselves questioning the mainstream view of AIDS.

Nearly every time I raise an alternative point of view, I am accused of being under the spell of the Orthodox meme, or something. I am the victim of “bone-pointing”. Some of my dissident friends are concerned that my “fixation” on CD4 counts alone is sufficient to make me sick.

Balderdash.

The chart of my CD4 counts is but a small  part of a much larger library of information I have accumulated over the years. I make no decisions based on that marker alone. I have long been taught and tend to believe that Knowledge and Information is Power.

I do understand that those who are still under the hypnotic influence of the orthodox AIDS treatment campaigns might indeed suffer anxiety over their CD4 counts. The shaman loses his power to bone-point, once his followers start to doubt him. Further, I would counter that there is also an equally dangerous risk of fear and anxiety that often occurs when one must live with the unknown. I support those of my Affected friends who choose to not monitor their “counts”, but I have also heard some of them express uncertainty and doubt about whether that is the right decision too.

There is no absolute “right” or “wrong”, and when we, as a community, try to impose such dogmas, we have handed the AIDS orthodoxy a victory.

ADDED 11/01/2013: Please refer to more recent charts of my CD4 counts on the “attachments” tab above. You might also want to read AIDS Treatment Guidelines: Deify or Defy?