Open Letter To One Of My Critics
I stopped caring what people think about the truths of my life, and I share my life with open arms.
The fact that an AIDS Myth community (E.g., AIDS Myth Exposed) will not embrace an HIV-Negative AIDS case, just speaks to the totality of their ignorance. Most AIDS dissidents can not handle the depths of my case, because I am epidemiologically-linkable, and most AIDS dissidents refuse to acknowledge that microbes exist, at all. Denial is a strong place to be, so I hope that they will not be there too long because innocent people are needlessly dying. I suspect that the HIV establishment would find AIDS dissidents far more respectable, if they could find it in themselves to use millions of HIV-Negative AIDS cases to debate the merits of the HIV orthodoxy, but who am I to tell the dissidents how they should be utilizing their time?
I do not understand your comments about the lack of support I have received from Thebody.com, as I actually believe that they have been somewhat supportive of my plight. http://thebody.com/Forums/AIDS/SideEffects/Q160149.html While there have been some ignorant statements, I remain indifferent about all responses (good or bad) from for-profit entities that certainly can not say anything that contradicts what the US-CDC allows them to say for sake of jeopardizing their numerous affiliations (notice all the Rx logos at the bottom of their site). Interestingly, however, I have always found it intriguing that the strongest endorsement from thebody.com came from a Canadian doctor, Dr. Brian Conway ("...I will add my voice to the many who have already congratulated you for your courage and determination...").
Actually, I do not really care what anybody's response is to my fact-based story, as one of my many strategies has been to get myself noticed, while leaving myself to linger long after I have left the room. Your continued, baseless, criticism has proven to me that I have executed flawlessly.
As you will notice, I have no sponsorships and, like Christine Maggiore, a long-term HIV+ individual who also questions whether HIV is the cause of AIDS (http://aliveandwell.org/), have nothing to win/lose in sharing my life with you. I do not want your money. I want your ear and I want your voice! If you would like to learn more about what motivates me to do what I do, please read "On Becoming an Activist" http://cfsstraighttalk.blogspot.com/2005/07/on-becoming-activist.html). Perhaps, one day, when you are fighting for your life, and those of millions of others, you will understand that nothing else really matters… other than:
1) following your heart,
2) staying true to yourself, and
3) looking into the mirror at the end of day and smiling!
I have never said that Laura Hillenbrand has an infectious disease, although she was, by her own accounts, diagnosed “Chronic Fatigue Syndrome” by an infectious disease doctor (http://cfids-cab.org/MESA/Hillenbrand.html). I have, however, used her case (i.e., having become a best-selling author while bedridden) to demonstrate that disabled people are enabled in different, often-more superior, ways. Despite my cognitive problems and physical restrictions (and the fact that I sleep 60-75% of the day), I believe I have found a similar outlet, truly transcending the occasion, and it utterly horrifies me to think that you outwardly perceive that disabled people are somehow inferior to you.
What exactly do you think patients with idiopathic immune disorders do with their time, (because my very active, career-aspiring, martini-sipping, triathlon-running, carefree days are long since over)? With toothpicks holding my eyes open most days, rather than coddling myself and/or watching drivel on TV, I choose to spend my little 'spare' time continuing to keep abreast of idiopathic immune disorders, working with scientists and Rx companies all over the world, trying to understand where my case sits in the HIV/AIDS, CFS, AIDS Myth debate, and trying to educate others about my plight.
I am a humanitarian.
Bloggers, welcome to the 21st century, are simply people who choose to share their diaries with the world. How is me choosing to write a few fleeting thoughts on the web from time-to-time compare to Montel Williams writing a whole book? Or a terminal cancer patient participating in a major fundraising event? Or any ol' sick person writing in a private daily journal, never to be publicly viewed? Should I shrivel-up in helplessness (just because that is what you are implying you would do)? Should I succumb to the pressure of my critics (even though they are ridden with closed-minded ignorance)? Should I turn a naked eye and allow my voice to be muted (just because that is what you would allow to happen)? Are you really that selective about who you deem worthy enough to protect your blood supply? Perhaps you would prefer that I just, selfishly, loaf around on my sofa watching television? Could you please advise me as to what you perceive to be my acceptable pastimes, because what I am hearing from you is that you do not believe that disabled people are entitled to (or capable of) either reading or writing for a couple hours throughout the week? What exactly are you suggesting? Would you just prefer that disabled people no longer partake in your aristocratic society?
Why shouldn't I help other people, even though pretty much nobody was there to help me: "This world does not care about you. This country does not care about you. Stop writing letters because nobody cares about you."? SELFLESSNESS: http://webster.com/dictionary/selflessness -- you should take a sip of it, because it tastes great!
I do not need validation that the road I have chosen is the right one, because, as a humanitarian, my plight transcended me ~999 days ago. My quest, since Day1, has been to systemically diagnosis my underlying pathogen. The fact that I have been thrown into an extremely controversial HIV/AIDS, CFS, and AIDS Myth debate has all come as a secondary event and was one I did not know existed when I started down this very dark - clearly nasty - road. As you know, since you've "done your homework" on me, I was very focused on HIV, HIV, HIV when I started out, as I knew nothing other than what has been advertised on every city bus in downtown Boston for the past 20 years, HIV--> AIDS. You can thank the dissidents for me questioning the whole HIV/AIDS paradigm and now they want to rid me of their establishment. Ironic…huh? Now, you can understand why using the 'AIDS Myth Exposed' crew in an argument is actually laughable to me. Ha! What a bunch of hypocritical frauds they are!
AIDS dissidents might actually be on to something (HIV?AIDS), but it's really no wonder why they are offered no respect from the HIV/AIDS orthodox community, because they repeatedly - and rather comically - sabotage their own creditability. Ha! Ha!
An AIDS Myth community that does not care about an HIV-Negative AIDS patient....it is rather humorous, isn't it? Ha! Ha! Ha!
Knowing everything I know about my personal medical file and now knowing everything about the concurrent HIV/AIDS, CFS, AIDS Myth debates, how couldn’t I question the merits of all 3 paradigms? Wouldn't you? Shouldn't you, knowing about me, question them too? Why does HIV get the exclusivity of causing AIDS -- by man-made definitional construct -- when clearly so many other (a)cquired pathogens cause (i)mmune (d)eficiency (s)yndromes too? Doesn’t that seem wrong to anybody else but me?
Any organization that shuns me from their membership fears the truth. I should rightfully be a member of all three, but, let's see: I have been banned from AIDS Myth Exposed. I have been banned from AIDSmeds.com and thebody.com (both sponsored by pharmaceutical companies), even The AIDS Action Committee tells me that I am not good enough for their very prestigious services (which they prefer to provide to very healthy HIV+ individuals). Hello? I am the one with the (a)cquired (i)mmune (d)eficiency (s)yndrome, here, people! I am not totally convinced that the CFS folks are too keen with me (i.e. the CFS/ICL/AIDS connection) either, but they do not have any choice than to accept me, as I am told, I am one of the most progressive CFS activists in the USA (...probably the world). Everybody fears the truth, and they do not like what my case represents. I do not really care, because I can not control what my medical file represents (i.e. the colliding of the paradigms), and fear is certainly not an attractive quality. I would rather stand by myself -- as a non-conformist with a fresh ideology -- than to follow misguided people in the wrong direction. Hello? I know I must be doing and saying something right, because when every other door slammed in my face -- I kept knocking -- and the ones that opened were at the United Nations. Clearly, I am one of very few people who can see the forest through the trees.
Medical literature suggests that both CFS and ICL are infectious diseases. As you know, with these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS is transmissible, something that the medical establishment seems unable to admit or to acknowledge (naturally I have researched numerous reasons why). I also believe it makes me living proof that Chronic Fatigue Syndrome and HIV-NEGATIVE AIDS are basically the same mysterious immune disorder. Can't you see that we have it all backwards? HIV+ individuals are not even sick (assuming they are not taking any toxic medications) and AIDS patients are just more CFS patients, who only by coincidence, have a questionably harmless virus, HIV. So, the question remains (15 years later): what is the cause of CFS?
You can see why so many scientists are interested in little ole me, and I have/will happily provide my medical files to you, if protected by HIPAA.
I have been offered antiretroviral (and numerous other experimental) medications. However, I am not convinced that I would even want them, (gosh, have you read Harper's recent article? http://newaidsreview.org/files/newaidsreview-P1040792.jpg). Nevertheless, some folks at the CDC advised me that opting into treatment, even if they were to help me, would taint my med-naïve blood, interfering with any scientist’s ability to conduct microbe-culturing. Much to my family's dismay, I am forced to make mindful decisions about any narcotic that goes into my body (even if they would, selfishly, alleviate my symptomatology). For the betterment of mankind, I like to think that I am taking-one-for-the-team by keeping my blood pure…
Since having AIDS requires an HIV+ diagnosis by man-made definition (at least in the USA), Chronic Fatigue Syndrome (CFS) is the incubation period for HIV-Negative AIDS (or ICL). Statistically speaking, I know that my idiopathic illness is not rare.....so, you tell me, if they are not in the very mysterious Chronic Fatigue Syndrome category, where are all these other immunosuppressed people? You can sit around in your rose-colored world saying "ICL is rare. ICL is rare. ICL is rare.", but depending on who you believe, there are anywhere between 500,000 - 14,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS epidemic ---> TENFOLD. The worldwide phenomenon makes me exponentially nausea!
PLEASE WAKE UP AND, IF ONLY FOR HUMANITY'S SAKE, PLEASE, PLEASE, PLEASE START WORKING TOGETHER!
I do not believe that my single case, solely, disproves that HIV may be a cause of AIDS, but if everybody is so certain of the proof, why does everybody fear a REAPPRAISAL OF AIDS?
HIV-Negative AIDS cases do cast significant doubt on the HIV/AIDS paradigm and linking CFS and HIV-Negative AIDS makes for a perfect -- doubtful-- trifecta. Diagnosis me! Tell me what my underlying pathogen is (which is not HIV or a retrovirus of any kind)!! The day that I am systemically diagnosed, and I do remain hopeful (optimistic, but realistic) that it will happen in my lifetime, will be the day that the walls between the -- currently disparate -- paradigms, crumble.
Everybody I know thanks me for sharing my story and for raising awareness of HIV-Negative AIDS (http://cfsstraighttalk.blogspot.com/2005/07/few-highlights-of-my-plight.html), and nobody who has seen my medical file doubts my clinically-diagnosed idiopathic immune deficiency.
I do not know how to resolve your skepticism towards me, as I have found that the more facts that I provide to you, the more you choose to distort them. I have provided you excerpts scripted directly out of my medical files, only to be belligerently told by you that I have concocted them. So, I am clearly in a circular situation, continuously providing you more and more information, for which you will never be content. I guess that I am left with saying that: My request for an investigation -- and my selfless activism for the betterment of mankind -- was initiated from The White House, Vice President Cheney's Office, on March 23, 2004 and was transferred to The Commissioner at the Massachusetts State Health Department on May 12, 2004. If you have concerns about who I am, of my creditability, or of my research affiliations, please feel free to write them: http://mass.gov/dph/about/feedback/feedback_health.htm, since investigations have already been opened on my own merit and accord. Why not ask them to confirm their investigation of me (which I proactively initiated)? Why not ask them to confirm that I am who I say I am (since I have already proactively reported myself to them)? Why not ask them to confirm the contents of my medical file (which I have already proactively charted for them on numerous occasions)? Why not support me in my quest for a systemic diagnosis (if only for your own selfish reasons)? You clearly have quite an imagination, making up all sorts of fictitious things about me, so I am sure you'll come up with something extraordinary to say. Since you'll be in a writing mode, and clearly engaged in my altruistic cause, please feel free to drop a letter in the mail to your representatives and senators, demanding a "Reappraisal of AIDS" and your support of research for "CFS/ICL/AIDS" cases. (http://house.gov/house/MemberWWW.shtml)
If you had "done your homework" on me, you would already know that I like making rain. Good press, bad press -- whatever -- I like that people are talking about HIV-NEGATIVE AIDS!
Don't falsely assume that I am a team of one. Our paradigms are shifting, and, as I am told, it is history-altering.
In the fight for humanity!