IVC experiment results inconclusive

 Posted by on 2011-04-26 at 9:02 am
Apr 262011
 

Thanks to those of you who have been prodding me for an update on my experiment. A severe case of Spring Fever, along with a touch of procrastination has helped keep me from posting sooner. Now that the rain is keeping me inside, I’ll try to catch up.

When I first started this blog, it was my intention to tell my story.  All of it.  No shading or hiding uncomfortable aspects of my health. It was easy to write about the successful transformation I experienced after quitting 24 prescription drugs in 2007.  It is much, much harder to write about experiences that fail to meet my hopes, in no small part due to me having high expectations.

My personal one-man clinical trial of high dose intravenous vitamin C (IVC) ended a couple of weeks ago.  I had my last infusion of 50 grams of ascorbic acid on April 11 and I have received the latest follow-up lab results, as well as some new labs that I will be discussing in a future post.

I first considered using IVC to protect against a perceived lymphoma scare I went through the last few months of 2010.  When a surgical biopsy ruled out cancer, and blood cultures ruled out tuberculosis and other infections, I decided to try the IVC to see if it could affect ‘HIV-associated’ laboratory markers and the as yet undiagnosed parotid masses instead.  The experiment, as conceived in cooperation with my doctor at the Riordan Clinic in Wichita, Kansas, consisted of 50- gram infusions of ascorbate vitamin C twice a week for 8 weeks.  This was an extension of the more sporadic and varied IVC infusions I had been doing since mid-December.  The objective measures to be used to evaluate the outcome would be CD4 count, viral load and cystic mass size.  In addition, I would also evaluate the more subjective measures of mood and energy.

CD4

Many of my medical records, including the latest charts of my CD4 count and HIV-RNA viral load are available from the attachments page of my blog.  My CD4 count, following the first IVC infusions in mid-December, quickly jumped nearly 200 points, from 307 on October 11 to 496 on December 27, and then declined throughout the duration of the trial to 310 on April 12.

Despite that admittedly discouraging drop after the initial bump, my average CD4 count during the trial period was 389, considerable higher than the average of 279 during the previous 12 month period.

CD4%, another marker that some people consider more consistent and meaningful than absolute numbers, has remained relatively steady the past two years, at 17-19%.

There is another variable that could be affecting CD4 counts.  In addition to the IVC, I’ve been taking low dose naltrexone (LDN) since December.  LDN is reported to increase CD4 counts.  I will continue the LDN for awhile, minus the IVC, and see what happens.

Viral Load

The so-called ‘viral load’, aka PCR RNA, which multiplies and then counts the number of RNA particles presumed to represent the HI virus in peripheral blood, was also up and down, but there is no denying that it has been in a new, much higher range the last year or so, and the last count was nearly double that of the month before, leaping from 76.8K to 158.6.

Some AIDS dissidents dismiss these laboratory markers as meaningless.  I don’t.  I acknowledge the fact that CD4 counts can vary from day-to-day and even hour-to-hour, but I don’t believe it is wise to disregard long-term, declining trends.  I am heartened that these counts are higher overall than they have been for a couple of years.  For the umpteenth time, I will have a much better perspective on what the current counts mean only a few months, or perhaps years from now.

The viral load counts are more puzzling, more susceptible to questioning and challenge as far as I am concerned, even while the latest spike is disconcerting.  I remain skeptical myself that PCR is a reliable method of testing for active virus.  I am supported in my line of thinking by none other than the discoverer of the test, as well as my former HIV specialist who has dismissed previous spikes.

That’s not to say I’m not concerned. I am very concerned.  My average VL during the first 10 years of testing poz, when not undetectable due to ARVs, was tens of thousands. That changed dramatically about a year ago, and the average has since been about 100K. I wonder what is being measured that is increasing so rapidly.  There is at least one correlation between the first spike to over 100K with the Bell’s palsy I had last Spring.  It was only a few months later that I first noticed the swelling lymph nodes and parotid gland.  I have gone through some pretty intensive testing, including a surgical biopsy, and can rule out cancer, as well as any evidence of bacterial, mycobacterial or fungal infection, based on blood cultures. There is more to share about my suspicions regarding these masses, but that will have to wait for a followup post.

The easiest way to explain all of these things, and the message several allopathic doctors have given me, is:  “it’s the HIV,” though they seem at a loss to explain why my overall CD4 has increased, and why I’m not experiencing any of the known common opportunistic infections associated with ‘AIDS’.

Parotid Mass Size

The third “objective” measure that was chosen to evaluate the IVC protocol has proved to be less objective than I had expected.  I had hoped that the parotid masses would completely resolve, or at least shrink to near-undetectable size.  That didn’t happen.  There have been times the last few months when they even seemed to be getting larger, only to seem to shrink back to what I’ve come to consider their new “normal” size, roughly the size of two marbles.  Sometimes I think I can feel new, small kernels in the area, while my doctor and others who have examined them insist there has been no measurable change.

I discussed having MRI scans done before and after, if not during the trial, to go along with the laboratory markers.  There were at least two good reasons I chose not to do so.  The most important one is that these scans would have subjected me to yet more radiation that I don’t need unless absolutely necessary.  The second was cost.  Although Medicare and my insurance have paid for required tests and imaging, that is not a sufficient reason to order these scans without good reason.

In the end, I can only subjectively declare the lymph masses size a draw. They are neither larger, nor smaller than they were prior to the treatment.

Mood and Energy

The results of these subjective measures are as mixed and inconclusive as the supposedly objective laboratory markers. As I reported in my January 26 blog post, I was experiencing some noticeable energy buzzes after infusing 50 grams of IVC, and that continued to be my experience for awhile.  As I grew more confident about self-infusing, I found myself anticipating the drips and I even made the very slight adjustment of my schedule from twice a week to every three days, just so I didn’t have to wait till day four!

Those enjoyable buzzes lasted through Valentine’s Day, but were not sustainable.  By the last week of February I was once again hit by the Fatigue Hammer.  It’s very difficult for me to describe what this feels like.  I remember trying to attending fermented foods class a few days or a week later, and I almost turned around to come home.  I could hardly drive and I felt like I was in a fog and barely functioning while there.

The next several weeks found me in bed more hours per day than out of it.  I was sleeping 10-12 hours at night, only to go back to bed after being up for a couple of hours at best. A trip to the grocery store required a 3 hour nap to recover.

I have had these bouts before and there is no predictor that I am aware of.  They vary in duration, and only slightly in severity, but are measured in weeks, not hours or days.  I’ve questioned whether they are the result of depression, which I’ve also dealt with many times in my life, but the usual feelings of helplessness, despair and desperation are not a part of this malaise.  I do eventually feel down, and yes even depressed, but only after several weeks of the fatigue.  It is clear to me that they can contribute to a depressed mood, but are not caused by it.

As Spring has tried to come on here, the latest round fatigue has greatly resolved.  I have been able to do some yard work and even plant a garden, but eventually need an extended recovery time.  Going out with friends on an enjoyable outing one weekend night was an exception that cost me several days of extensive rest to make up for it.

Summary

While I wish I was able to report an undetectable viral load, soaring CD4 counts, elimination of swollen glands and incredibly energy, I can’t.

I realize only now that another reason I was hesitant to write this update is that it is very difficult to analyze these results, or to draw any conclusions from these counts and markers so soon after ending the therapy. What they really mean will be more apparent and obvious down the road several months, or years from now.  There is little data in such a short period of time to detect any trends, which is what matters to me.  It will be good to have my thoughts now documented for reference however, and I did promise to keep everyone updated.

Do I think IVC is a fraud?  Absolutely not.  I just did not experience a miraculous cure of all that ails me with a modest one-person, 8 week trial. What will never be known is what would these same outcomes have been had I not done the IVC?  Did I do sufficiently high doses often enough and long enough? These are just some of the drawbacks of isolated personal experiences like this one.

Would I do IVC again?  I’d love to.  I felt better when I was doing it, despite the lapse into fatigue for a few weeks.  I cannot afford to do it though, unless I learn to mix it myself from powder, a next step that strikes me as risky and problematic that I’m not ready to take at this time, though I now know I could do it if I need to.

What’s next?  I remain committed to making forays whenever I can into promising alternative treatments that might be able to do what the ARVs are supposed to do, without the prohibitive costs and the life-threatening adverse effects. There are some bright lights out there to explore, if I can find ways to make them feasible for a person on fixed income.

I am currently trying to take a break from the intensity of focusing so hard on mysterious health problems and instead try to just enjoy the life I have for awhile.  I can appreciate why some people choose not to play these medical games for fear of getting stuck on the medical merry-go-round, with all the accompanying uncertainties and trial-and-error treatments.

There are other recent lab reports and more health-related information on my desk, unrelated to the IVC, that I will be sharing in the future, as I find time and motivation to write more.  As the weather continues to improve though, you are more likely to find me in the garden, or out walking with my dogs, than at my computer.  I also plan to make my annual visit to visit my mom in Colorado, as she turns 87 next month, as well as host my oldest brother and his partner for a visit in June, to celebrate my own birthday, as  I turn 55 this year.

I ask everyone to be patient with me as I continue to grow older too.

  12 Responses to “IVC experiment results inconclusive”

  1.  

    Thanks jon for the report, fair enough, as you say it is indeed inconclusive.
    Perhaps it works with more infuse, high dosage….but it may also be a good idea to check ldn alone, and vit c alone.
    Is it in your plan to try liposomal vit c?

    Here is a link and it be interesting to you or to take contact with them

    http://www.camltd.co.nz/links.html

    They advised the proocol for the nz patient who was saved from leukamia and swine flu.

  2.  

    Chronic fatigue sucks, because oftentimes people can’t “see” this condition (at least in my case)… I have spent many wasted hours trying to convince and explain to people what it feels like and what I’m experiencing, and they give you that “look” and say, “Well, you look fine…” UUUGGGHH! You are the only other guy I’ve come across in my 24 years with HIV, who has said he experiences this chronic fatigue… mine, however, does not sound as severe, but it has never gone away, or subsided, or provided me with even a brief respite. I hate to say this, because it sounds like “misery loves company” or that I am wishing you ill (I am TOTALLY NOT)… but it is somewhat comforting to know someone out there who understands what this chronic fatigue feels like. So in that small way (among others), you’ve helped me.

    Back to you and your experiment! 🙂

    I think you’re smart for not wanting to get too obsessed with the treatment merry-go-round. Most of the time, illness points to lessons we need to learn on the inside. No amount of “outer”-vention will ever teach us these spiritual lessons. These lessons must be are really harmful ways of thinking that must be unlearned… So, chill out, enjoy life, and pay attention to not only what your body is telling you, but also what the universe is telling you… It’s in the quietest moments that we hear the loudest sounds!

    Thanks for your transparent honesty and courage Jon!

  3.  

    Chronic fatigue sucks, because oftentimes people can’t “see” this condition (at least in my case)… I have spent many wasted hours trying to convince and explain to people what it feels like and what I’m experiencing, and they inevitably give you that “look” and say, “Well, you look fine…” UUUGGGHH! You are the only other guy I’ve come across in my 24 years with HIV, who has said he experiences this chronic fatigue… mine, however, does not sound as severe, but it has never gone away, or subsided, or provided me with even the slightest respite. I hate to say this, because it sounds like “misery loves company” or that I am wishing you ill (I am TOTALLY NOT)… but it is comforting to know that there is someone out there who understands what this chronic fatigue feels like. So in that small way (among others), you have helped me.

    Back to you and your experiment! 🙂

    I think you’re smart for not wanting to get too obsessed with the treatment merry-go-round. Most of the time, illness points to lessons we need to learn on the inside. No amount of “outer”-vention will ever teach us these spiritual lessons. These lessons are really just “unlearning” harmful ways of thinking about ourselves, others, and life itself… So, chill out, enjoy life, and pay attention not only to what your body is telling you, but also to what the universe is telling you… It’s in the quietest moments that we hear the loudest of sounds!

    Thanks for your honesty and courage Jon!

  4.  

    maybe essiac would be a good therapy for you jonathan. i think the spike in VL would be normal actually as the vit c dose may be breaking down cyst or tumour or other and releasing into blood system or urine. it cold take many more months and yu would be very tired , need a lot of rest through this process.

  5.  

    I’m sorry to hear the results were inconclusive, as I was looking to your results to go forward with potentially trying it myself. If the results were inconclusive, I might try it to see how it worked for me. However, as I see it, the trial failed because none of your markers improved. Your CD4 went up and fell right back to the start. Your Viral Load continued up without even slowing down. The two masses did not decrease and your energy levels are only slightly increased due to “Spring Fever”. I am also disappointed in that you claimed from the start that this blog was to tell the truth of your health completely. If that were true, you would have acknowledged that this trail was less than “inconclusive”. I live in KC also and will no longer read this blog.

    •  

      No reason to address this to DaveyT, since he won’t be here to read it, but I am compelled to respond.

      I don’t recall ever suggesting or encouraging anyone else to do what I am doing. DaveyT also seems to be reading what he wanted or expected to read, rather than everything I wrote. Even after dropping from the previous two counts, the last CD4 count was higher than it had been for a year-and-a-half. The average CD4 count, as I clearly noted, was considerably higher than the average for the previous two years.

      No one knows what the parotid masses would have done without any intervention, and even my own ‘HIV specialist’ has dismissed the value of viral load testing,as I wrote about here, the first time my VL went over 100K more than a year ago.

      DaveyT chooses to call the experiment a failure, and I understand why. Maybe he didn’t notice the significance of the accompanying graphic I chose: does it look happy?

      I have had some time to consider a lot of things that others who are not so close to my situation may not consider significant, and I concluded that I really can’t declare the experiment a failure. If it’s not a success and it’s not a failure, it’s inconclusive.

      Questioning my truthfulness sounds eerily familiar, and I’d just as soon anyone who doesn’t believe I’m being honest not visit my blog again.

    •  

      Hey DaveyT,

      Take it easy, bro… It takes great courage and yes, integrity and honesty, to share something as personal as ones battle with chronic illness (with the masses, no less!). As usual, Jonathan has taken the high road in responding to your “comment” (something I feel less compelled to do, as a reader of this blog)… Your veiled attack really does beg the question re: your own intergrity, not to mention your concern for others.

      Jon Barnett is a human being, doing what he needs to do and what he wants to do. And he is sharing his story with those of us who want to read it. Show some respect!!!

      Personally, I am ashamed to share the same server space with you, let alone the same initials.

    •  

      Hey DaveyT,

      Take it easy, bro… It takes great courage and yes, integrity and honesty, to share something as personal as ones battle with chronic illness (with the masses, no less!). As usual, Jonathan has taken the high road in responding to your “comment” (something I feel less compelled to do, as a reader of this blog)… Your veiled attack really does beg the question re: your own intergrity, not to mention your concern for others.

      Jon Barnett is a human being, doing what he needs to do and what he wants to do. And he is sharing his story with those of us who want to read it. Show some respect!!!

      Personally, I am ashamed to share the same server space with you, let alone the same initials.

  6.  

    Redundant comments posted via anonymous proxy servers will not be published.

  7.  

    Jon, I wish you had gotten different results. I have done IV Vitamin C and was very pleased, but I did 100 every 3 days instead of 50. Try the higher dosage and I think you will be pleased. I did this treatment for psoriasis, not an HIV issue, but my skin cleared up after only two months at the higher dosage.

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