Denying the AIDStream

 Posted by on 2011-01-20 at 5:48 am
Jan 202011
 

Some of my AIDS dissident friends reject outright the tests used by mainstream AIDS (AIDStream) doctors to evaluate ‘HIV-positive’ patients and to determine if and when to start treating them with highly active antiretroviral therapy (HAART), more commonly known as the “AIDS cocktail” of drugs.  While I agree with them that we can’t know for sure that CD4 and viral load tests are accurate and viable measures of infection or progression, let alone reliable indicators that a person needs to embark on a lifetime of toxic drugs, I do not dismiss the tests as completely useless and meaningless, either.

That CD4 counts can be quite variable, fluctuating even during the same day is commonly understood.  No single test result should be considered significant on its own.  Viral load could be measuring cellular debris caused by other infections or stressors in the body.  What I am paying attention to for myself is the long term trends of these, as well as other clinical markers, and more importantly, how I feel.

So, why should I get excited about my latest labs?  Following the cancer scare of a few months ago, I undertook yet another significant change in my own treatment plan.  In addition to pursuing Medicare-funded allopathic care from an infectious disease specialist to rule out the possibility of tuberculosis, I am also getting testing, advice and care at the Riordan Clinic, which focuses on improving patients’ health, rather than fixating on fighting individual diseases.  The clinic offers a compelling mix of modern medical practice with an “alternative” perspective that appeals to me. Going outside the system for care has also dug a hole into our retirement savings because much of what they do—particularly intravenous ascorbate (IVA)—is not covered by Medicare or any other medical insurance.

I have already received the results from some of the tests done at Riordan Clinic, such as the Organic Acids Tests (OATS),  and I will be writing more about those soon.

Unlike those recent snapshots of other markers that may be helpful in identifying specific health problems, I have  more than 12 years of history regarding my VL and CD4 counts, so I am able to chart long term trends, which I consider to be significant.  The latest results came back yesterday and they strongly suggest that something I have been doing recently  just might be making a difference, at least in these supposedly important lab markers.

The blood for these tests was drawn right after Christmas, following three infusions of high dose intravenous ascorbate (IVA), or vitamin C a couple of weeks earlier.  The CD4 count, which every self-respecting PWA wants to go up, went from 307 ten weeks earlier, to 496, my highest CD4 count in nearly three years, and well above the levels recommended by all but the most extreme AIDStream authorities for initiating HAART, though they do keep trying to raise the bar, especially in the United States, where funding for AIDS drugs is high.

Chart of 12 years of CD4 test results, showing a signficant increase in the last few months.
My latest CD4 counts are the highest I’ve had in nearly three years, following just three infusions of high dose intravenous ascorbate (IVA).

My viral load result, while not as impressive in terms of scale, is also heading back in the direction that we’re told is desirable—down more than 15,000 copies to 90,400 during the same period.

Now, for all the requisite disclaimers:  I know better than to make any treatment decisions based on a single set of labs, and I often preach this mantra to others,  so it would be equally foolish to draw any conclusions based on one set of labs.  I will continue to track them to see if this is the beginning of a new trend.

Nor do I have any proof for what might have caused this change in these laboratory markers.  There are a few significant things that I can think of that I have done differently since the previous labs were drawn:  I had three infusions of intravenous ascorbate (IVA), and I had restarted the low dose naltrexone (LDN), another alternative treatment that seems promising.  The month prior to the blood draw I was also taking a lot of additional supplements, mostly amino acids, curcumin and green tea extract, as part of an alternative cancer cure, and I have been more diligent about increasing the amount of my diet that is plant-based foods.

I may never know which, if any of these things, or combination of things, caused the reversal of the trend of declining CD4 counts.  That’s one of the problems with being a single patient experimenting with alternative medicine.  This is no controlled trial, let alone a double blind study.  Being consistently methodical is not always an option in my life. This information is part of an anecdote, but that shouldn’t mean it is completely useless or meaningless.

While CD4 count and viral load test results are admittedly imperfectly understood laboratory markers, what other measure am I to use to evaluate alternative treatments that my friends are asking me about?  In addition to an improved CD4 count, I have also experienced an improvement in my energy and stamina.  I hope that I have thwarted whatever was causing the swollen glands that led to a diagnosis, first of cancer, then of necrotizing granulomas, and later, possible tuberculosis. Only time will tell.  Changes in symptoms like fatigue can be caused by too many things and are too subjective to be relied on alone as evidence of clinical improvement.  Until I’ve lived a few more years in reasonably good health, these markers will have to suffice to guide me until something better comes along.

The main reason I started this blog was to share my personal experiences, and I know friends and family who follow me here to keep up with what I am doing. As much as I’d like to dismiss these counts, I have to admit that it feels encouraging to see them reverse, and move in such “good” directions, especially following so closely on what has been a very intentional effort on my part to try some new options.

These results are far from conclusive evidence of any kind of success for an alternative treatment.  What they do offer is a strong argument that it is possible to reverse laboratory markers without resorting to ARVs. This seems important to me.

Regardless of one’s opinion about the validity of the HIV=AIDS theory, or the Gallo antibody test for ‘HIV’, or the significance of clinical laboratory markers; if the purpose of ARV drugs are to lower viral load and increase CD4 counts, and if there are other, less toxic and less expensive ways to accomplish these ends, where is the research funding and will to validate what I and others are doing on our own?

  4 Responses to “Denying the AIDStream”

  1.  

    I remember when my doctor first explained to me how variable CD4 counts were, and that this is why, rather than doing frequent CD4 counts, it was standard practice to just do a single count once every 3 months.

    I remember thinking at the time that this didn’t make sense. I have enough mathematical skill to know that if you’re measuring something so wildly variable, the only way to get an accurate picture of it is to increase the sampling frequency and look for averages and ranges. And yet, she was telling me that the standard practice is to do the exact opposite — sample only once every three months and take whatever number you get as an accurate representation of the patient’s CD4 count. I KNEW it made no sense.

    And yet, I never questioned it.

    Sometimes I look back on the guy I was before I became a dissident, and I just want to go back in time to give that guy a swift kick in the ass, smack him across his skull, and say, “WTF, dude?!? God gave you a 98th percentile IQ — FUCKING USE IT!!!! QUESTION!!!! THINK FOR YOURSELF!!!! You’re about to let this fucking quack take you to Death’s door and leave you on the porch in a basket like an abandoned baby because you’ve deluded yourself into believing that she’s your ticket to immortality. As the guy who survived what you let this doctor do to you, I wanna kick your ass so high you’ll have to adjust your collar to take a shit.”

    …But then I remember that it was this dumbass that I used to be that ended up teaching me the hard lessons that I needed to learn in order to become the man I am today, and while I still can’t forgive him, I can at least be thankful for what his incompetence taught me.

    — Gos

  2.  

    WOW.. very interesting change in your numbers, and significant that you had just had iv Vit c. I would love to show my specialist a jump like that in cd4s!! Now that the discoverer of HIV says that water can retain energy (he musta been reading Hulda’s book) maybe instill some good vibes into your next IV for even more dramatic results ! Well done.

  3.  

    Thanks for sharing this John – very interesting indeed. When you had some of your lowest CD4 counts back in 2002, did these co-relate with how your were feeling? How your well-being was? I would be interested to know if you can remember… Thanks, and happy I have found you on the WWW.

    Jason

  4.  

    Sorry for taking so long to reply, Jason. I’ve missed a few comments this week.

    I have never been able to correlate how I felt with the CD4 counts, or viral load, with the exception of how I felt about going below 200 while I was still a Believer in the miracle of modern pharmaceuticals. After 13 years, the stress and pressure about what these numbers mean has been greatly reduced. I’ve thrown out a lot of dirty bathwater since then.  🙂

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