Saturday, February 05, 2005

LEGAL DISCLAIMER + FAQs

How are you?

Surprisingly well considering the circumstances.  I have good and bad days, mentally and physically. The fatigue is debilitating, but I keep myself moving....even if I'm dragging all day. Thankfully, all my family and friends are very forgiving and have adapted to my limitations. I still work my day job, as it remains a fleeting glimpse of the normalcy I once knew. Having worked at my office for over 11 years, I have so many friends who are my second family.

Why don't you look sicker?

One of the bittersweet aspects of my illness is that no one can see my immune system's damage. I may not look sick to you, but I feel it. If you knew me 2 years ago, you'd know something is very different but probably couldn't pinpoint it to any one thing. Being an athlete, I have always been very conscience of and attune to my body. Personally, I think I look radically different. My muscle mass and body fat have continued to displace themselves. My cheeks are so flat and I often cannot get my contact lenses in because my eyes are so scratchy. My metabolism is drastically altered.

Comparatively speaking, if you knew me a year ago, I look fabulous now. I was anorexic, even my Size 2's were falling off. I could go on for hours about all the flukey things that my body does.

How do you feel?

Physically: Like I've been run over by 1,000 MAC trucks (one parked itself on my lungs). Mentally: Like any adrenaline junkie, I'm fueled by the challenge and stronger than I ever knew --> headstrong.

Why haven't you been diagnosed yet?

My doctors have exhausted all clinically-available diagnostic tests. My blood has been flown to the CDC-Atlanta twice. I have had blood shipped to numerous Rx companies and scientists. I have met with famous scientists and yet I am remain systemically undiagnosed. I have been told that it could take decades to discover a new pathogen, patent it, and bring it to the diagnostic market*. {Please read my "LIFECYCLE OF A NEW DISEASE" post, http://cfsstraighttalk.blogspot.com/2005/07/lifecycle-of-new-disease-please-write.html}

*Personally, I believe this statement to be FALSE, as with resources (a.k.a. money) things miraculously happen overnight.

It's like in grade school when the teacher would give you a problem to figure out and you'd finish it before the rest of the class. So, you would just sit around waiting for everybody else to catch up. I am waiting for everyone to catch-up.  Sometimes, I'm totally bored and if it didn't mean life or death, I wish I could go do something else. Other days, I'm wildly excited to wake-up, just to see what's going to happen next.

Why aren't public health official doing anything?

HIV-Negative AIDS is not a priority, since nobody is talking about it. Nobody is writing letters to their senators and asking for funding. I've never seen a marketing campaign touting HIV-Negative AIDS. When was the last time you saw a city bus go by that urged you to test for HIV-Negative AIDS? 

I wasted a solid year battling doctors who told me that my symptoms were a figment of my imagination (like I had nothing better to do with my life). A lot of time was wasted, when I could have been ruling out other viral pathogens (e.g., CMV, HHV6, HTLV, HSV, VZV, mycoplasmas) -- none of which I'd heard of before, and all of which I've only recently tested negative. I've accomplished a ton in just two years, but I believe I'd be a whole year ahead if my ignorant doctors hadn't slowed me down -- refusing to perform tests on me (and failing to refer me in to see infectious disease specialists).

I've incurred 1,000's of dollars worth of OOP health care expenses because my HMO required a referral, which my PCP -- openly and blatantly -- went out-of-his-way to refuse.  I had never been a confrontational person before I had met him, but we have had screaming matches over the subject matter. I scripted, logged, and journaled all of them in my diaries. It took me a whole calendar year to transfer out of a HMO to a more flexible PPO. I had to keep jumping hospitals, so that my medical files would not follow me.  I have fired dozens of doctors who thought they were GOD.

I reported all these self-proclaimed deities to my State's Board of Registration in Medicine, because I wanted their neglectful actions to be formally registered with the proper authorities. Personally, I do not need validation that those doctors' behaviors were negligent.   So, I shouldn't have been surprised, when nobody at the Board of Registration in Medicine cared about the "patient neglect/abandonment," "professional misconduct," and "rude/discourteous behavior" I endured by the agents they claim to oversee. It tortures me that the administrative division overseeing this conduct callously disregarded the compliants with no recourse. Hello? 

Why bother to have a compliant form, if you didn't plan on caring in the first place? 

Why go through all the trouble of creating a caring facade, when you could tell people right from STEP 1 --> you just don't care.

Any doctor who tells their patient:

"THIS COUNTRY DOES NOT CARE ABOUT YOU.
THIS WORLD DOES NOT CARE ABOUT YOU.
NOBODY CARES ABOUT YOU."

.....    should not be allowed to practice medicine. See, how easy?

Are you hopeful that you will some day be systemically diagnosed?

If the last 2 years are indicative of the next two, my answer is "NO." My clinical physicians have braced me with the fact that it's unlikely that I will be diagnosed in my lifetime. Even if I were diagnosed, they would not treat me for it. So, what difference does it make?  My outlook is skeptically-optimistic.

Pathogens aside, according to Autoimmune Technologies, "Non-HIV AIDS patients may comprise perhaps 1% of all AIDS patients." (http://www.autoimmune.com/Non-HIVAIDSGen.html). Personally, I think the number is grossly understated, because statistically speaking, if this undiagnosed pathogen is in my NON-RISK GROUP body, it is not rare!

In the big picture, my undiagnosed disease is not my problem.  So, I think the better question is: How comfortable are you with me being undiagnosed?

How did you get your blood to the CDC?

With countless phone calls, emails and letters, I made it happen. It definitely wasn't easy.

I found a great contact at a diagnostic Rx company. It was this individual who gave me the contact names of doctors and scientists at the CDC.  I started calling people in Atlanta to see if my blood had arrived.  A lot of name-dropping.  The second time my blood went to the CDC was much easier than the first since I already had established contacts in Atlanta, and had already circumnavigated The State.  I cannot totally say whether the health department was a willing participant, and for sake of singling-out the negligence of any one person, I will spare you the nightmarish details. Nobody will fight for you, unless you fight for yourself.

What are your CD4s? What are your symptoms?

I don't like posting statistics on websites. Although my CD4s are low normal, my primary issue has always been my lack of CD8s. I'm a big walking symptomatic mess. Pick-a-body-part, any-body-part, there is something wrong with all of it.

What are the symptoms of others in your cluster?

Although I've spoken with the others, I'm not willing to discuss them.

Since you are not given any treatment, what are you doing to keep yourself well?

I keep living. I sleep 12-14 hours/night. Everything I do is related to my health. I attend yoga and meditation classes. I go to acupuncture and massage therapy sessions. I started seeing an herbalist and began exploring Eastern remedies. It saddens me that I can not perform at my 'normal' level, but, as the saying goes: when one door closes, another one opens.

Why don't your doctors put you on anti(retro)viral (ARV) medications?

No clinical doctor will put a patient on a medication for a disease that a test cannot systemically detect. They would be treating me 'blindly.'  I'd need to be in a medical research program, if I wanted to pursue these therapies. I'd need to sign waivers to be a guinea pig.

I am not convinced that I would want to be on ARVs, anyhow. There is no evidence that those meds actually help patients. There is much evidence that they are toxic and would probably expedite my demise.

CDC also cautioned me that opting into experimental treatments would alter the composition of my "med-naïve" blood. They asked me, that if I opted to go this route, that I call them so that they could be able to store some of my blood first because otherwise it would interfere with any scientist's ability to conduct viral-culturing.

For humanity sake, I would rather keep my blood pure.

Is HIV the cause of AIDS?

I seriously doubt it.

Do you think AIDS and CFIDS are the same epidemic (caused by a non-HIV pathogen)?

I believe CFIDS is the *miscellaneous* category for every unknown/stealth pathogen out there. I do not believe all CFIDS patients have the same undiagnosed pathogen. CFS/CFIDS is the dumbest thing I ever heard --> I am a HIV-Negative AIDS patient.

What if you are wrong?

My official clinical diagnosis is: "viral syndrome of unknown etiology." Viruses by nature must be "acquired." I have a non-HIV "acquired immune deficiency syndrome."  So, what's to dispute?

What I am saying is neither radical nor far-fetched, as every word I speak is linked to medical journal citations and scientific literature. I.C.L. cases have been recognized since 1992.  I.C.L. was already a reportable disease, and it was only a matter of time until someone like me (i.e., smart, driven, nothing to lose, and willing to talk) entered the scene.

One can scream "BOMB" on a plane or "FIRE" in a theatre, if one actually exists....The CDC knows exactly who I am. Actually, in a memo dated May 30, 2004, the CDC thanked me for my appreciation and support of public health programs.

During a phone conversation with the CDC last year, a physician advised me: "Take it to the Press. Be a whistleblower. History will get altered; Religions formed, and movies made."  He was a cool guy.  I like him!  It's exactly what I intend to do. :-)

Tell us about the Making LemonAIDS / Gulf War Research Foundation.

{The Making LemonAIDS / Gulf War Research Foundation is now closed.}

Contributions to The Fund were irrevocable and immediately tax deductible to the fullest extent allowed by law. 

 I am NOT seeking funds nor do I spend any time raising monies.   Why is it always about money?  There is already plenty of it to go around ---- and most of it is being misused. Rather than money, I want your TIME & VOICE.

I believe that all HIV funding should be:

1) halted, so that we can assess the situation,
2) redirected into a re-evalutation budget and/or
3) redirected entirely into Gulf War Research.

Please write to your senator demanding a REAPPRAISAL OF AIDS -->

www.senate.gov/general/contact_information/senators_cfm.cfm

MY RE-APPRAISAL OF AIDS --> CLICK HERE 


Do you have any role models?

Many. I will start with my parents:

My dad - who taught me to follow my heart, to trust my instincts, and not care what other people think.

My mother - for her immeasurable compassion and altruistic spirit.

My brothers - My brother was the best player on any field, because he was the *invisible glue* that makes any team great.  He's the bond that makes everything strong.  I will always believe in him, like he has always believed in me. He has always known, with the right gust of wind, that I was capable of flying.  My brother is my hero, unquestionably, the silent wind-beneath-my-wings.   "Shape of an Eagle. Form of a Cyclone." https://youtube.com/watch?v=jorJh8DTMVM

Montel Williams, who was my inspiration for my foundation's establishment.

Gandhi, who quoted: "The truth can never be wrong even if no one hears it."

Martin Luther King, who questioned "life's most persistent and urgent question is what are you doing for others."

Shackleton: On the brink of death, Courage was his only weapon.

Do you mind all these questions?

I appreciate any opportunity to help educate others with what I've learned over the past two years. It can be difficult because sometimes people don't appreciate how much effort it takes me to put my head-in-the-zone. My plight has been a Herculean effort, but at the end of the day I am only human.

What have you come to learn?

I have always set the bar high for all my accomplishments. I always knew that I had great potential to do anything I set my mind to, but I've surpassed my wildest dreams. I'm often in awe that this is my life. It's believable in an unbelievable sort of way.  When you accept your mortality, it is truly amazing how you start to appreciate what is really important in your life.

What next?

I have big plans. So, stay tuned.  Please write a letter to your representatives asking for funding.

I propose the letter reads --> "1) HALT HIV SPENDING. 2) FUND GULF WAR SYNDROME."


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MY FEDERAL TESTIMONY --> NON HIV AIDS 
Washington, DC via conference call 
5-minutes (starts @ Minute-0):