On darunavir again

 Posted by on 2013-10-30 at 7:47 am
Oct 302013
 
skeleton examining a pill
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I am struggling to find a good way to communicate all that has been going on with me the last few months, and all that has happened since my last update nearly four months ago. If you can’t tell from the title, the purpose of this post is to inform readers that I have resumed taking the protease inhibitor darunavir, and will explain why shortly. First, we have some catching up to do.

It has been a pretty good summer, and my energy and mood have been better than I remember feeling in quite some time. I’ve made two trips to Colorado; one to help a friend recover from a rather bizarre hospitalization, and a second trip with Michael and the dogs—our first vacation in years.

Later this week I will be flying to Houston to attend the memorial service for someone I never met, but who has become an important person in my life from our online interactions and telephone chats. Gos Blank (aka Charles Rich) died of multiple factors, primarily pulmonary fibrosis. While in Houston, I will meet his wife, Lisa Dugger, and hopefully have a chance to review his medical records, as well as strategize about fulfilling another of Gos’ wishes by publishing a book he had written.

Michael’s long-delayed bathroom remodel project that I started a few weeks ago as part of my stress reduction therapy is on hold for a bit, but the point is: I’m obviously not on my death bed—at least not yet—but I am very concerned about some recent lab results.

It’s been five months since I last quit the AIDS drug darunavir. The first sets of labs I have had done since then are not encouraging. I continue to struggle with bacterial and fungal infections in my gut, though I am apparently making some progress on that front, and we have started another, more aggressive round of natural interventions and probiotic supplementation.

Elastase levels—markers of pancreatic insufficiency—not only refuse to improve, but rather continue to decline, so I am now taking a supplement of desiccated lamb pancreas to see if that helps. I just learned that elastase is a protease enzyme, and I’m taking protease inhibitors. A connection? I never had this test done before restarting darunavir, so I have no baseline to compare it to.

Several neurotransmiter metabolites, which improved considerably during the time I was taking darunavir  have once again surged out of range. I should note that I was doing ultraviolet blood irradiation (UBI) and high-dose intravenous vitamin C (IVC) during this period of time as well.

Secretory IGA (sIGA) levels in my gut are extremely low. sIGA is the front line immune defense there, and mine has been low in both my saliva and my gut. I am committed to taking L-glutamine more regularly to try to support and protect the cells in my gut that make sIGA.

To be frank: barring some unexpected breakthrough, I would be surprised if I get to the point that I will do another extended break from that drug, or something equivalent. 

Finally, the surrogate markers for HIV, which were stable and rising while taking ritonavir-boosted darunavir, are back in the toilet. CD4 markers were at their lowest level yet: 64 and 4%. PCR viral load jump back up to a tic shy of a half-million. Needless to say, I have resumed the darunavir monotherapy. I am using the Norvir “booster” for the first week or so, to get the level up quickly, but I am hopeful that I can manage with darunavir alone after that. It seems to do a good job of moving these particular markers back to a reasonable range that is within my own comfort zone. To be frank: barring some unexpected breakthrough, I would be surprised if I get to the point that I will do another extended break from that drug, or something equivalent.  I’m not going to trek down that path any further with this post.

Copies of these updated test results, summaries and graphs have been updated and posted to the “Medical attachments”, which can also be reached by clicking the “attachments” tab at the top of every page. All of these out-of-whack markers point to multiple issues that need to be addressed, especially the really messed up gut.

One surprise, due to some confusion over a lab order, was the result of a Western Blot HIV antibody test. There is no reason for any doctor to order this test after a confirmed diagnosis… especially a nearly 15-year-old diagnosis, but the lab performed one, for whatever reason. I have never before seen the actual WB test results for myself, and it is with regret that I report mine lit up all ten bands like a Christmas tree, as Gos might have said. In the U.S., a person is considered “HIV-positive” if they are reactive on any two of four particular protein bands on the WB. I can’t say why the test reports ten bands, but in any event, all of mine are reactive.

As if crunching laboratory test results wasn’t bad enough, I have also been catching up on the financial aspects of the last two years of alternative treatments. At the very minimum, I spent nearly $7,000 in 2012, not including travel and lodging (which was considerable) and have spent nearly $5,500 so far this year. An accounting of these costs can be found on the “financials” page, or by clicking on it under the “attachments” tab at the top of every page.

I was shocked when I discovered that it has been three years since I have had an acupuncture treatment. It was absolutely wonderful, regardless of whether or not it affects any numbers anywhere, and I noticed an immediate reduction in my sense of anxiety, frustration and despair. Several of the aberrant lab markers relate to stress, and that is one of the hardest things for me to deal with on my own. Acupuncture and hypnotherapy help, and in the mad rush to do other things, like UBI and IVC, they have been dropped to the wayside.

I am relearning that some of those things I did early on really did make a difference in how I actually feel, and I’ve not managed to keep up with them. I’m hoping I will be able to return to what has worked in the past. I feel like I’ve experimented enough to be able to reduce, if not eliminate some of the more extreme measures, especially UBI, and hopefully resume acupuncture and Chinese herbs. I am also convinced that the IVC is a legitimate and beneficial treatment for several of the chronic conditions I am dealing with. Nothing else help restore some energy and mood, without creating adverse effects.

I am dumping a lot of summary information here, without getting into details, but I need to start somewhere. When I zoom out and look at the big picture, it is clear that I am still a long way from being a “healthy” person, and frankly, I no longer expect to become one. The goal now is to mange chronic disease and maintain as good a quality of life as I possibly can.

The details are on the medical attachment page, though I don’t really expect very many people will actually try to read the OAT and CSA tests with as much diligence as I have, but those who do so will have a much greater appreciation for the amount of information these tests can provide. I don’t know why they are not used more by general practitioners.
My other goal is to resume posting about all of these things, and to go into more detail this winter. There are some other tales to write about as well, that are not directly related to my health. First, I have to complete the Houston trip in a couple of days.

Meanwhile, I’m not to bashful to admit that I cannot continue to follow this course of action without financial assistance. I have not be aggressively promoting my GoFundMe campaign, mainly because I felt that my supporters deserve information in return for their contributions. Those who want to help by contributing will find a link in the right column of this page. I pledge to continue to make my personal information available and to continue to write about my own experience.

  4 Responses to “On darunavir again”

  1.  

    Much love Jon! I’m sorry you have to go through all this, but you’re a real inspiration.

  2.  

    Wow, Jon, sorry you aren’t doing better! I have resigned myself to never again being totally off ARVs. I seem to be doing quite well doing just Mondays and Thursdays. I’m toying with dropping the Truvada and just doing the Isentress and seeing if that makes a difference, but I think I should get through the winter first. I don’t even know what my numbers are, since my ID doc is in Africa now, though I’m pretty sure I could email him. Seems like it’s been more than a year since he ran the CD4 count, but my VL remains undetectable as far as I know, for what it’s worth.

    I wish I had enough faith in alternative methods to put a bunch of money into it. My experiences thus far have not been all that positive, though I would much prefer going that route. I’m scared by how many drugs I’m on now, with the Graves’ and all. Of course, I hope I’ll attain remission there and be off them fairly soon.

    I’m anxious to read your test results and hopefully can understand some of them! Thanks for continuing to be so honest. I wish I could join you at Gos’s memorial. I’m sure there will be lots of people there I’d like to meet, despite the occasion!

  3.  

    Hi Jonathan,

    I usually read silently your blog, and I must say I admire how you’re showing us a way to share and to emancipate – and always with the right words. Everyone should learn from it.

    I don’t feel like I could comment your numbers, but something questionned me as I was reading your message. You explain that, when you were first on Darunavir a few months ago, you were doing UBI (ultraviolet blood irradiation) and intravenous VitC at the same time. I have the feeling that, independently of their possible efficiency, they’re likely to act in opposite directions. VitC is thought to act as antioxidant, but UBI is a pro-oxidant therapy (see this link for example :http://www.oxygenhealingtherapies.com/pro_uvb.html). It may be efficient to eliminate some bacterias or fungus just like the immune systeme normally does (generating reactive oxygen species – free radicals – that kills them), but it may also oxidize all other blood cells including T-cells. But maybe you were already aware of this.

    Thanking you again for all – very sincerely.

    •  

      You are not the only person to raise this concern, Jibrail, and I am attempting to get clarification on the question. The clinic that performs the IVC and UBI, which is also a research laboratory, seems to be taking my question seriously as well. They are offering to do pre- and post- infusion tests to determine redox levels…. assuming I’m willing to be a test subject. 😉

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