Insane. Me?

 Posted by on 2013-03-02 at 12:28 pm
Mar 022013
 

picture of crazy ladyAfter meeting with my orthomolecular doctor last month to update him on my current status, and to discuss the goals I hope to accomplish this year, I found myself sitting in a chair in the laboratory draw station, waiting for Brad, the phlebotomist, to prepare all the paperwork necessary for the long list of tests that the doctor and I had mutually deemed essential for making future treatment decisions. I could tell that some of these were rather obscure markers we were requesting, as Brad had to make a few calls to inquire about insurance codes and test identification numbers.

After this longer than usual wait, Brad came over to discuss with me which tests were likely to be covered by my insurance, and which required additional signatures from me, agreeing to accept personal financial responsibility. Of the more than $3,000 worth of tests ordered, only about $1,800 worth were likely to be covered by Medicare and my supplemental medical insurance. Once again, I was faced with an all too familiar dilemma: which of these tests could we eliminate, in the interest of saving money? Several hundred dollars for the amino acid profile? I chewed my lip. Now, why did I think I needed that test in the first place?

Oh, that’s right… what if Dr. Heinrich Kremer is right about what really causes AIDS and cancer?

Is there any merit to the argument, summarized by Felix de Fries, that antibiotic abuse and other factors—including antiretroviral drugs—can cause the mitochondrial damage that leads to an immune dysfunction, known as the Th1/Th2 switch, particularly in gay men?

Is it possible that this damage can be halted, or possibly reversed with a targeted nutritional infusion therapy, including amino acids?

Who knows? I am more than a bit intrigued by the reasoning de Fries uses, and believe the concept of cell symbiosis therapy (CST), being investigated in Germany and other places, is consistent with the wholistic track of care I’ve tried to incorporate in the past, and which was derailed when I restarted the pharmaceutical ARVs last May. Before we can even consider CST, it is necessary to have these and other tests done, to better understand the current status of the patient and so that infusions, if they are deemed promising, can be customized for my specific condition.

Bear with me. I know that I am jumping ahead with a story that deserves much more attention to detail than I intended to share for now, but all of these are among the many thoughts that were running through my head, as I came to my decision at the lab. Having as much information as possible is vital, if we are to have any hope of making the best informed choices down the road.

“Do all the tests that were ordered,” I finally told Brad, as I signed the financial responsibility forms.

Because I had started my fundraising effort only three days before, and the initial responses were encouraging, once again it occurred to me that one of the reasons I had chosen to ask for help in the first place was so I could better deal with just such circumstances… so I could make these kinds of decisions based on the need for information, rather than on my ability to pay for them.

I did not know what to expect when I started the GoFundMe event less than three weeks ago. In the past, I’ve found a handful of friends who were wiling to make what I considered to be substantial donations to help me fund alternative care, specifically a project to explore intravenous vitamin C therapy almost two years ago. This time, I was hoping to spread the financial burden among more people, utilizing a crowd-funding service. To say that the response to date has been gratifying would be an understatement.

A week after making this decision to have testing done that I would not have been able to afford otherwise, I received a modest donation from a woman named Stephanie. I did not recognize her name, and I said so as I sent her a thank you note acknowledging her contribution. Her response surprised me so much that I asked her permission to share it here.

No, you don’t know me, but I’ve looked at your blog a number of times and have read a bunch of your posts on questioningaids. What is an HIV-negative, middle-aged housewife doing checking out AIDS dissident sites you might ask? Well, in case you’ve never had the pleasure of staying home and raising small children, I can tell you that it is both wonderfully rewarding and at the same time kind of boring so I spend more time than I probably should online researching random things that pique my interest. (Go ahead, ask me about North Korea or how to spot the difference between vintage and reproduction depression glass.)

I first looked up Christine Maggiore maybe six months ago. I remembered her from the cover of Motherhood; I think it stuck with me, because I was pregnant at the time myself. HIV controversy had always been on the radar for me anyway. I started working in a methadone clinic in New York City in 1988 and i remember how confusing and terrifying that time was with conflicting rumors flying around about what was happening and how. Remember ARC?

I was shocked to find out that the [AIDS] dissident movement had survived Christine’s death and (forgive me) I figured you all were clearly completely insane. But your comments were always smart and sounded reasonable and the more I read, the more interesting I found the movement. You haven’t totally convinced me – I still believe that HIV causes AIDS – but I am fascinated by the alternative research and I love the counterculture approach to taking charge of your own health. For god’s sake, I know a family practice physician who will blithely drive her young kids around without car seats, so I am very clear that just because someone is a doctor doesn’t preclude the possibility that they are also an idiot and not worthy of blind trust. So in the spirit of thoughtful dissent, I’m happy to kick in a couple of bucks for treatment costs because I think someone as articulate as you are would be able to provide very valuable feedback about a promising treatment option.


Good luck,
Stephanie

 

Of course, this is not the first time someone has associated me or my actions with being insane. 

“Insane?” I ask myself. Me?

I suppose it’s possible, but then, what to make of people like Stephanie, who are willing to take a risk and gamble on a long shot, in the hopes that an individual just might find a way to navigate the kinds of complex health problems I deal with without resorting to a lifetime of conventional pharmaceutical treatment?

Thank you, Stephanie, and all the others who are willing to take a chance on my sanity.

For those who like to read, I am also posting the followup messages between me and Stephanie below.

My response to Stephanie:

Thanks for replying and for helping to fill in some of the gaps for me, Stephanie. If you haven’t heard/read it from me yet, expect to hear it frequently in the future: there must be a middle path for those of us Affected with a positive antibody test, and poor immune health.

Insisting that a positive antibody test, extremely low CD4 levels, and 7-digit viral load are meaningless is a pretty good definition of AIDS denialism, in my book. I am convinced that HIV plays a role in AIDS for many people. That doesn’t address the people I know who seem to have “AIDS”, but are antibody negative, but I think there may be some other markers that are missing, and this is something that Marco Ruggiero shared with me last year.

At the same time, insisting that multi-drug pharmaceutical drug cocktails, costing tens of thousands of dollars per year is the only treatment option, and one that should be initiated as early as possible… even if that means taking them before one even tests “positive”, is equally ludicrous and hazardous to one’s health, as far as I’m concerned.

The question of what—exactly—HIV is is the key. The foundational research by Robert Gallo, that supports almost everything that has been done the last 25 years or so, is extremely suspect. I’ve written about this before, so I won’t go into all that again now, but just for the record, I do think HIV exists. I am not convinced that it is a sexually transmissible infectious pathogen, and I am now all but certain that it is not the sole and sufficient case of AIDS. There are, at the very least, other factors… co-factors, if you will… involved. The variety of co-factors can likely explain some of the differences seen in “AIDS” in gay men, Africans, pregnant women, IV drug addicts and hemophiliacs. I will go so far as to suggest that it seems far more likely to me that HIV is a marker of immune illness, rather than the sole causative agent.

Knowing that you chose to contribute to my own, admittedly amateurish attempt to determine if there are other ways to regain and maintain immune health, with as little reliance on pharma drugs as possible, despite your personal point of view is… well, it’s a lot of things: astounding. puzzling. a bit unnerving, thought provoking, but mostly, it is extraordinarily encouraging.

The only thing that would make this interaction even more complete, would be your permission and blessing to make it public.


Let me know,
Jonathan

 

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And Stephanie’s response:

Ha! Yeah, I think a lot of people have found me puzzling over the years – sorry about the unnerving part. It’s just that I’ve known so many wonderful people who’ve been dramatically and painfully affected by their positive status over the years that it seemed worthwhile to contribute to something off the beaten path that could help. I don’t know enough about the condition to have a super-informed opinion and I’m not married to my current opinion either so if you could prove me wrong and help a bunch of other people in the process, then rock on!

You may certainly make this conversation public; unfortunately I don’t have your original thank you message anymore since I accidentally deleted it, but as I remember it, you thanked me and then very politely wondered who the heck I am.

Regards,
Stephanie

 

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