Today is Valentine’s Day, and I am sitting in a motel room in Wichita, Kansas, pondering: how do I dare ask friends, family and strangers to give me money so I can continue to experiment with alternative health therapies? The painful answer is: I have no choice, but to try.
I left KC at 4 am, so I could get here early for the first of what will likely be a series of appointments with my orthomolecular doctor about how best to proceed with my health care, now that I’m starting to consider how and when to quit the ARVs.
For those who don’t already know, I did resume taking antiretroviral drugs last May, when my CD4 counts dropped to very low levels, and my viral load soared to nearly 1.5 million in a matter of months. I wrote about that decision here. I have not been doing the multi-drug cocktail that is virtually mandated here in the U.S. by “The Guidelines”, but instead have been following my own modified version of a therapy that has been showing promise in European trials for more than three years, called darunavir monotherapy. I have taken that protocol a step further by lowering dosages even more than those used in the trials, in an attempt to try to minimize my risk of the adverse effects and toxicity that have caused me so much trouble in the past. I explain this strategy in a blog post, as well as a 30-minute video overview here, but suffice to say that this experiment has been successful in moving those surrogate markers back from the edge, while greatly reducing my exposure to toxicity and adverse effects.
When I’m ready, this will be the third time I have quit ARVs in almost 15 years, and being the hopelessly optimistic guy that I am, I want it to be the last time. I’m not making any promises, but I am reflecting on the sheer volume of new information that has been coming across my path lately, making a strong argument that “AIDS”—at least the version affecting most gay men in the West—is caused by factors in addition to, if not other than, a retrovirus, and therefore must be treated by means other than just antiretroviral drugs, which ultimately and inevitably cause AIDS themselves.
I will continue to share more about the research I am studying soon, as I have been doing for more than four years now, with this blog, on Internet forums, and more recently, via social networking and youTube.
One of the things I have learned about experimental and alternative treatments is that they are almost never cheap, let alone free. Another thing I have learned is that Medicare and other insurers do not cover some of the most helpful tests and promising therapies. In fact, the tests we are starting with today (none of them HIV-related) will cost more than $1,500, and Medicare will not cover half of them.
It is my goal to quit the ARV drugs again as soon as I safely can, depending on test results, and I intend to resume my quest to try to find less toxic and more natural ways to restore and maintain my immune health. My research and queries have invariably led me to Europe, where I have met people online who are working with, and healing people with AIDS, while avoiding ARVs as much as possible. I am in contact with individuals and groups in Germany and Italy who make a strong case that what is called AIDS—at least in gay men in the West—is probably the result of a “perfect storm” of behavioral excesses and inappropriate medical response, including excessive antibiotic abuse in the 1970s and 80s; multiple and recurrent bacterial and viral infections; illicit drug use; and a culture that created a hothouse for exchanging pathogens and other other human cellular material to an extent not seen before.
This analysis fits well with what I know of the earliest cases of AIDS, and my own medical history as a gay men in that era. There is no longer any doubt in my mind that the hypothesis of AIDS as caused solely by a new retrovirus is misguided and based on flawed—perhaps criminally flawed— science, and that the current treatment options are ultimately harmful to patients, and obscenely profitable to the pharmaceutical industry that dominates our medical care system.
What I will be focusing on is evaluating and trying to repair mitochondrial damage, which is the most likely source of the relentless fatigue. I will also continue to focus on the health of my gut, which is my immune system, and attempt to restore balance there, something I’ve already made considerable progress with the last two or three years, though I must confess that I have back-slid on a number of counts the last several months, including my dietary habits and the introduction of unnecessary stress.
There is little doubt in my mind that some therapies, such as high-dose intravenous vitamin C, ultraviolet blood irradiation, intensive nutritional supplementation and other therapeutic interventions helped me avoid antiretroviral drugs for nearly a decade. Insurance does not cover these therapies, nor many of the tests that have proven useful to me, such as stool and gut analyses; nutritional testing or tests for inflammation and oxidative stress, all of which are key factors for management of cancer, AIDS and other chronic disease.
The only clinic that I know of that offers me exceptional access to quality alternative care, without regard to my HIV status, is the Riordan Clinic, in Wichita, Kansas, 200 miles from home. In addition to travel expenses, there are times when treatments are extended over a period of time, requiring me to also have to pay for overnight lodging, as I am doing tonight.
As you can see, it is not possible for us to afford these expenses on our income. We have worked hard the last few years to reduce our cost of living after Micahel lost his full time job in 2008. We have dropped many “luxuries”, such as cable television and land line telephone. We are prepared and willing to sell the new compact car that we purchased more than a year ago, so Michael could safely perform a delivery job.
Despite taking these steps, we find ourselves continuing to prematurely dip into Michael’s retirement IRA at a frightening rate each year. Last year, we drew nearly 25% of those funds out to help pay my medical expenses. We see the writing on the wall: if we keep doing what we’ve been doing, and if we do manage to live to be old men, we will have no financial security left at all.
We are trying to be responsible. About a fourth of our monthly income is consumed paying medical insurance premiums (yes, I do pay for insurance, despite being on Medicare). Even with “health care” insurance, Michael still has to pay the first $5,000 of his own medical expenses, and all of his prescription costs, out-of-pocket. My own out-of-pocket pharmaceutical drugs expenses were nearly $5,300 last year, though I did get some assistance from the Missouri ADAP.
None of these essential expenses include the cost of so-called “alternative” treatments that have proven beneficial in the past, in terms of boosting my mood, sense of wellbeing, strength and energy, as well as hopefully slowing (I know that age works against me, so I won’t use the word “reverse”) progression to a worse condition. .
I don’t mean to sound pitiful. We know we are not poor, compared to most of the world’s population, or even compared to some of our neighbors and family. We do not live in Section 8 housing, or in a dump, and we do not rely on food stamps or welfare assistance. In fact, we think our home is quite comfortable, though it is a big step down from what we lived in a few years ago. We are rarely hungry, never starving, and we do not feel we lack for material goods, though it feels as if we live fairly frugally, and it is hard to remember the last time we had a vacation. It is hard to imagine being able to live anywhere else for much less than what our living expenses are here.
This has been one of those years that remind me that I do obviously have chronic health issues, and this past winter has proven to be kinda’ rough.
After a wonderfully active and productive summer, I was hospitalized in September with a serious case of shingles on my face that extended inside my eyelids. What triggered this outbreak at that particular time is not clear. The AIDS doctors are suggesting that it was a case of IRIS (immune reconstitution inflammatory syndrome). Wikipedia calls the concept “paradoxical”, and will not allow me to edit their entry to “completely illogical”. I have had more than one shingles outbreak on my face in my life. The first was quite severe, and occurred thirty years ago, long before I ever encountered HIV. Based on past experience, I think the recent outbreak was likely a reaction to high stress I was experiencing at the time. I only wish they would leave my face alone! I am developing a rather clunky and lop-sided look.
I stopped taking most of the nutritional supplements I have been taking when I started the ARVs last May. For one thing, the doctors at the Mayo Clinic kept coming up with excuses for limiting my drug choices, based on some of the supplements I was taking. I also decided that I did not want any potential problems with the ARVs to be blamed on interactions with nutritional supplements. But truth be told, the cost of so many supplements was as high, if not more than our combined utility bills. It’s the economy, stupid!
The last six weeks have found me miserable with a persistent chest cough. There is no evidence of pneumonia or tuberculosis, and I’m told it’s just something that’s “going around” and will take a few weeks to clear. The coughing got so bad that I apparently pulled a muscle in my back that hurt so bad I thought I had kidneystones again, and I almost went to the ER. Tests showed otherwise, but the only way I could move at all was by taking Vicodin for about a week.
I have spent more time asleep than awake the last three months. This problem with crippling fatigue is a very familiar place to me, and I am determined to track down the actual cause. It does not help that it’s wintertime, and maybe I’m just hibernating like an old bear, but a year and a half ago I was renovating a house! Six months ago I was building balcony off of Michael’s bedroom. I was doing something right, and I want to start supplementing again, based on the results of nutritional testing that was done today.
The tests we drew blood for today came to more than $2,500, but we worked at it until we got them down to less than half that, of which Medicare will pay at least half, leaving me with a bill of “only” $600 for testing alone. I return to the clinic in the morning to get 75 grams (yes, GRAMS) of vitamin C shove into my veins in about an hour. That will cost about $200.
I intentionally scheduled this visit to coincide with the meeting of the clinic’s board members, hoping to accidentally bump into some of them, so I could lobby them to consider increasing their research focus on “AIDS”. The community activist in me is still alive and kicking (and coughing). There are some amazing research projects going on at similar small orthomolecular medical centers in Europe and I want to see more options open up for some of us here in the U.S. and North America, as well as global collaboration on some of the most exciting health research that I’ve seen yet. The answers do not always have to involve pharmaceutical drugs, folks!
We also believe that there are some new and potentially promising health care options that I could pursue to repair mitochondrial damage, if money was not a consideration. I think they are worthy of consideration.
Just for the sake of comparison, my so-called “legitimate” medical costs, that is, the total of my “Medicare approved” hospitalizations and medical expenses, plus pharmaceutical drug costs last year—the year I started taking ARVs and stopped most of my “alternative” care and supplementation—was $68,720!
I managed reasonable well for ten years without ARVs, using alternative care that we paid for out-of-pocket. I’m not claiming I was a picture of health all of that time, or that I did not have some expensive medical problems, such as the DVT blood clots in my legs. On the other hand, if I had been a good little boy and took the drugs The Guidelines insist I should be taking, we could add at least another $200,000 to the above figure, and perhaps the cost of a liver transplant, to boot.
I am convinced that there has to be, not only a less expensive way, but a better way to manage my health, but I will never convince the insurance companies to pay for them. So I am looking to others to help me find out and, if successful, to make my case.
I’ve made a commitment to share my story—the good and the bad, the successes and the failures—on my blog, social networking sites, and Internet discussion forums, and I will continue to do so. Based on some of the responses that I get, it is clear to me that the information I document and share has proven to be encouraging and helpful to others in similar situations. It is a rare day that I do not have contact with someone in need, or with questions or information, via Skype or email. They come from every hemisphere on the planet. But even blogging costs money, and I’d like to expand that to include more video interviews with key people, as I was able to do with professor Marco Ruggiero, from Italy, who spoke at Riordan’s Cancer Symposium last year. At the risk of sounding immodest, that was a direct result of some of the connections I’ve made with my personal research efforts.
I hate asking for money, maybe as much as you hate being asked! After much consideration, discussion and soul searching, the only alternative I see is to slow down, or worse yet, halt my journey at a time when things seem quite promising. I’m willing to swallow my pride and find out if others consider what I do to be important enough to help support it financially, before I’m willing to quit now.
Some of you have been quite generous in the past, when I’ve asked for help. I cannot tell you how important that was to encourage me to continue seeking better answers to what sometimes seem to be impossible questions. I am as grateful for a $5 donation as I am a $500 gift. Money is a mysterious and relative thing. I’d love to know 500 people who can offer $5, but ultimately this will probably require a mix of small and more substantial contributions.
Please consider what seems right to you. If you yourself struggle to make ends meet, then please do not even think about responding to this request, and consider it an informational update. If, on the other hand, you are financially secure enough that you want to drop some bucks in the bucket, please do. Either way, you have my gratitude and appreciation, and my commitment to nurture your confidence and trust by sharing all that I can discover and learn from this venture I am on.
In the interest of transparency and openness, I will document expenses as I incur them on a new page here soon.
[gfmdonate color=’mint’ size=’blog’ url=’http://funds.gofundme.com/resistanceisfruitful’]
[Note: For those who would prefer to make a designated tax-deductible, major donation
of $500 or more directly to the clinic, please contact me for more details.]