Monday, July 25, 2005

On Becoming An Activist

Community service activity was always a part of my religious upbringing. Being a Campfire girl and later a Girl Scout, not only did I learn to fix a flat tire and to sell cookies, but I learned that it was my duty and my honor to give back. My mother always volunteered her time teaching Sunday school. My father coached the town soccer team. I learned to lead through example. I was taught very early on to give back to the community. I was taught to return everything better than when I got it. No matter how bad your circumstance, there is someone always worse off. I believe these values were ingrained into my persona from a very early age and set the framework for the woman that I am today.

Throughout my lifetime, I have always given (time and money) to a variety of different causes. I am humbled and blessed to be able to do what I love to do. It is selfish really because it gives back so much gratification in return.

During my college years, community service was promoted throughout the curriculum. I visited homeless shelters, hosted food drives, collected clothing, etc. After graduation, I found myself working for a corporation that treats civic responsibility as one of its top values. I know I would be dedicating my time regardless of where I worked, but it meant a lot to me to work for a company that hosted after-hours community events and occasionally took the afternoon off to host team-building, community service projects (E.g., sorting at the food bank or landscaping at the local zoo).

In my post-graduate years, I found a volunteer organization that made me aware of numerous Boston-based Non-Profits, all operating on shoestring budgets, that were in dire need for help.  I quickly became a project manager.

I helped train Special Olympics athletes.
I scooped mac & cheese.
I cleaned local riverbanks.
I wrapped presents, collected backpacks, and entered bowl-a-thons.
I read letters from the incarcerated requesting GED books.
I marched in parades and ran triathlons to raise money.

You name it, I did it. There are so many great causes out there. How can you really choose? You want all these service organizations to exist. Do you really want to gamble on which ones you want to be there when you need them? Wouldn't you be glad to turn to someone who cared in your time of need?

Last year, I tried to become a member of the AIDS community.  -->   I was turned away.

Apparently having an undiagnosed (a)cquired (i)mmune (d)eficiency (s)yndrome is not good enough for the AIDS community, as I was told repeatedly that I could not become a client because I did not have a HIV+ diagnosis. Wow?!  Perfectly healthy HIV+ people get all sorts of funding and free services.  They are not even sick.  Here I am, a sick undiagnosed acquired immunodeficient patient, and I got nothing.  I couldn't find anybody from the medical community, political arena or service organizations to tell me that they care about me --> not even the public health department! Actually, some went so far as to tell me that "nobody cares" .... usually followed by a slamming door.

Why do you need a HIV+ diagnosis to be a client of the AIDS community?

Hello??!  I am the one with the (a)cquired (i)mmune (d)eficiency (s)yndrome here, people.  Pardon my not understanding the inequalities, but don't you think that the funding and services should be going to THE SICK? {Please review my "Let's Redefine AIDS" http://cfsstraighttalk.blogspot.com/2005/07/lets-redefine-aids.html}.

I found myself with a very atypical and uncomfortable feeling -->
ENVY

I felt slighted. No community events with my peers. No pamphlets or literature to read. No weekly newsletters. No one to help guide me with my doctor, my insurance and my legal woes. Nobody to talk with about nutrition tips or treatment options. No weekly dinners or weekend retreats. No therapy groups. No parades. No sponsor to call when times got tough.

I got NOTHING, nothing, nothing...

Now, I had never been one to admit weakness, to ask for help, or to wear my feelings on my sleeve. It is not possible to grow-up with all brothers, and then to have a very successful career in the financial services industry, without possessing very thick skin. "Never let them see you sweat" and "Never ever show fear" were two mantras I often cited. The word mediocrity was never introduced into my vocabulary. "Good, better, best -Never let it rest - until your good is better - and your better is BEST."  For the first time in my life, I had to admit to myself that I was flippin' scared and, even while surrounded by loved ones, I felt very, very alone.

To help fill my void, I found myself volunteering at the HIV/AIDS center.  I figured if I wasn't good enough to become a member of their very-exclusive group (i.e., being HIV+ by FDA standards), I would just hang around.  I would hear the lectures and tune into the community events.  I would read bulletin boards to find out when Magic Johnson was coming to town.  I would read all the textbooks and pamphlets.  I figured I could learn about other people's strife with AIDS, their worries and their fears.  I thought I might learn from their perspectives, their inspirations, and their courage.

When I would look across the room of (very healthy - "I have never been sick") HIV+ members, I would see a big family. When they looked back, however, all they saw was a very tired, heartfelt volunteer helping them out. I know it's not their fault, but I couldn't help but feeling that I am good enough to help everybody else, but nobody is good enough to help me. It was all very humbling...

{Editorial Comment: I, like most volunteers I know, do not volunteer expecting anything in return. I continue to give to others, because regardless of the fact that no entity seems to care about me (or my illness) does not mean that I do not care about them. I like serving dinner to perfectly healthy people at their community center.

As for me, I created my own web haven for those, who battle my same "AIDS-like" illness.  I know it's not much, but I hope it makes the world seem less lonely of a place and, at the very least, tells you -- when every other organization has turned you away --> I CARE.}

Disappointedly, I coined my new spectrum of feelings --> DISEASE ENVY. 

It made me sad.  It made me jealous.  Lupus. Jealous. Lyme Disease. Jealous. Epilepsy. Jealous.

I always considered AIDS to be one of the worst things imaginable.  I quickly concluded that being "undetectable" is 1,000,000x worse.  You know you are in trouble when you are turned away by the HIV/AIDS community.   Jealous. Jealous. Jealous.

Where are my peers? Statistically speaking, I know that my idiopathic illness is not rare. So, where are all these other people?

Speaking from experience, I think a good place to start would be to look at the unexplained suicide rate.  Sadly, I can only suspect that there are likely too many untold stories.  Another good lead would be to scout out the local psychiatric hospitals (e.g., McLean or Faulkner), as I suspect that there are plenty of perfectly-ill immunodeficient people who were driven insane listening to their ignorant doctors telling them that they were crazy (while pumping them full of psych meds).  Now, some might argue that I am a CFS/CFIDS patient.  I have chronic fatigue.  I have an immune deficiency syndrome.  I probably would be a CFS/CFIDS patient, if I allowed myself the generic label.  But, did you know that CFS/CFIDS is not a reportable disease?

Generally speaking, if you say to someone that you have CFS, people think you are over-worked and stressed-out.  Big deal, who in this world isn't?  But, if you say you have HIV-Negative AIDS, which is what it is, people very quickly realize that the medical ailment is much graver than the 'yuppie-flu.' I have spoken to CFS organizations. I have been informed that only ~10% of their clients are accurately diagnosed.  I do not believe I am a CFS patient.  Even if you argued that I am, why would I want to be amongst the 90% erroneously diagnosed as such?  What makes me different than most CFS patients is that I know exactly when, where and how I acquired my undiagnosed pathogen.  I know that I have a "viral syndrome of unknown etiology" --> my official clinical diagnosis.  Thus, I prefer to be referred to as a HIV-Negative AIDS patient.

So, I went to the internet.  It did not take long to find many groups of "my peers" scattered across the world in many web forums.  I had email conversations and chat sessions with people I did not know.  We exchanged stories, timelines and symptoms, and diagnostic tests that had been performed on our bodies.  We built phone relationships and forged new friendships.  We emailed photos.  It was interesting to me that we all rejected the CFS diagnosis, and for the most part, we all remain jealous of anybody who has a legitimate diagnosed disease -- JUST GIVE US THE DIGNITY OF KNOWING OUR NEMESIS WITH OUT NAMING IT A SILLY, BELITTLING NAME.  Finally, I had found some peers.  I have since traveled to meet with a few of my new friends.  To this day, I get calls from people internationally.  People anxious to talk to someone, anyone, because their ignorant doctors (like mine) chose not to listen and treated them like they were insane.  It's like we have all found one another since we are smart, driven, and are battling the same flawed medical system.  We associate with one another so well because we are the survival of the fittest.

The Massachusetts State Department of Public Health mission statement states that they are "dedicated to the health concerns of those most in need."  I have reported myself to them multiple times.  It remains unclear to me what benefit I have gotten from doing so.  Apparently, the State health department does not believe that I am in most dire need because I would have to suspect that in accordance with their mission that they would be helping me by now, if they did.  Thus, I can only conclude that having a deadly incurable illness that no test can detect and because it can not be detected it can not be treated does not qualify as "most in need."  I would love to know exactly what category of people is in more dire need than me because the State Health Department has slammed the door on me more times than I care to recollect (at this time). 

As a population, if our public health system does not know how to handle emerging infectious diseases, we have very deep-rooted problems.

So, as my parents once taught me, as bad as my circumstances may seem, I guess there will always be someone far worse off than me. I don't know who they are or where they are, perhaps in Omaha or Africa. So, I will continue to dedicate my time and my efforts to them.

I continue to count my blessings.  I am blessed that I can afford to see endless doctors, therapists, nutritionists, yogis, kinesiologists, acupuncturists, chiropractors, massage therapists, cranial sacral experts, herbalists, and the like.  I am truly blessed with family and friends who I can talk to endlessly, who have never doubted me for a second, who look beyond my illness, and treat me like the same ol' me.  Also, I am truly blessed to be smart enough and strong enough to challenge a flawed health system that nearly pushed me over the edge before I had the chance to share my story with you.

I never really thought about what an activist was before 2003 while I was sorting clothes and running road races. It wasn't until one day last year when I woke-up and started reflecting on my life (what I had accomplished and what I still intended to do) that I realized that I had become an activist. Over the past couple of years, my lifetime giving has evolved into intentional citizenship.

And while you may never care about my plight, I care and I intend to lead through example.

"Everything happens for a reason" and "Good can come of all evil," both are (and will always be) my unwavering life philosophies.  Thank you for providing me with an amazing opportunity to return this world better than the way I found it.

I already know that I make my parents proud, so all I can say is that the rest is......selfish gratification.

Bittersweet.

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Friday, July 15, 2005

My2cents: Cause vs. Effect

I will give you my perspective and hopefully you will find it useful.

It took me a long time to differentiate between taking care of myself and trying to stop an undiagnosed pathogen from spreading (i.e., trying to save the world). Originally, I thought they were the same, but I have come to conclude that they really are two very different things.

One is cause, and the other effect.

For some time, I was chasing a diagnosis (cause). I was traveling all over the place. I was spending thousands of dollars on flights and out-of-network healthcare costs. Although all part of an amazing adventure, which would make a great book, I concluded it did not really do anything for me.  I realize that I probably know more of what I don't have than anybody on the planet, but diagnostically speaking I am in no better place than when I started out.  Don't get me wrong, if someone wants my blood, my doctors will happily ship it to them. I have had my blood shipped to multiple scientists and Rx companies. I have been contacted by scientists overseas to facilitate overnight worldwide shipments of my blood.  Facilitated by the United Nations, I have traveled out of the United States (twice now) and have met with folks that most people have only read about in textbooks. I have tested for microbes that my physicians had never even heard of before.

However, I needed to learn to differentiate between diagnosing the cause and treating the effect.

There is a big difference between meeting with a doctor for symptom control (effect) and working with a scientist to detect the underlying pathogen (cause). Although a few bad seeds definitely tainted my opinion towards the rest, I can truly say that my present day doctors rock! I do realize that I am blessed to live in Boston. I do realize that Boston is the medical research Mecca of the world. People travel from all over the world to meet with the doctors I see day-to-day. The Mayo clinic turned me away a couple months ago saying "if you can't get in Boston, you can't get it here." Generally speaking, I do realize that the researchers, universities and scientists in this city are second to none.

I concluded that my systemic illness (cause) has no relevance to me any longer. It doesn't matter how I got it. We are all just animals and that is what viruses do. I find no guilt or shame in it. People get sick all the time. People get cancer all the time. People live. People die. I am no different. I certainly can't be reliant on other guys to give me their medical files (although I have tried). Regardless, my body and my blood speak for themselves.

My systemic illness (cause) has no bearing on the care my physicians provide to me (effect). My doctors will continue to treat the effect of my undiagnosed pathogen, not the cause. Even if I did have a systemic diagnosis (cause), my clinical doctors have told me that they wouldn't treat me anyhow because it would be new to them too.

I am not convinced I would want to be on anti(retro)viral medications anyhow, as there is no proof that those meds really help. There is equally as much evidence that they're toxic and will kill you, as there is saying that they will increase your longevity. I have had an Rx company offer them to me. The CDC cautioned me, however, that opting into experimental treatments would alter the composition of my "med-naïve" blood ultimately interfering with the viral culturing process. Rather I am taking a holistic approach to healing that involves a lot of yoga, meditation, and Eastern remedies. My goal is to keep myself as healthy as possible, because I have zero control over any of it. Nobody does.

SO HERE'S MY2CENTS: If the test doesn't exist in your doctor's office and you are not in a medical research program, it really doesn't exist anywhere else. And even if you were systemically diagnosed and you are not in a medical research program, your doctors will not put you on treatment for it anyways. So, what difference does it make?

Get over the need for a systemic diagnosis, because being diagnosed will not make you feel any healthier or any sicker.  It will only label it.

By the Fall of 2003, I had dropped to a size 2 (over 20% weight loss, ~30lbs) in a 4-month timeframe. I started losing all my muscle mass {remember I was a triathlete}. I would get winded climbing a flight of stairs. My eyeglasses needed to be resized because they kept sliding off my face, even my cheeks started losing their fat; I took 4 links out of my watch. Apparently, my EX-doctors seemed to think that wasting syndrome is driven by anxiety. They would talk to me like I was a naive 16 year old: "ohhhhhhhhhhh, yooooooouuuu poooooooooor thiiiinnnnggg, did your boyfriend dump you?"  I looked anorexic / bulimic.  How one is supposed to just "get on with your life" when their legs are twitching and they wake in drenching night sweats @ 4AM is utterly beyond me.  It horrifies me that my EX-doctors, knowing the subject matter we are discussing, continued to tell me that I "should be out developing relationships with men."  Here I am telling them point-blank, flat-out, not-buts-about-it that I have an infectious disease, and they kept saying that I had "an irrational fear of diseases" and would shuffle me over to social services.  It made me realize that their ignorance is the perpetual problem.

I looked like a skeleton.

The lack of proper supplements and nutrients only exacerbated all my symptomatology (driven by my unknown viral illness). Everyone who knew me would stop me and ask if I were okay. Holding back the tears, many would say I could be a model. Albeit an extremely unhealthy way to lose weight, I was wildly excited to start buying clothing off the discount racks -- the items that no one else ever fits into. {Work with me here, I needed to find a silver lining about my undiagnosed idiopathic disorder}. I got tired of listening to my EX-doctors saying stupid things to me like: "Did you call your psychiatrist today? Let me call one for you." Very very reluctantly, I started seeing shrinks to prove to the doctors that I did not have a mental disorder.

GO BIG OR GO HOME: I got a psychotherapist AND a psychiatrist. My whole life revolves around fact, logic, sequence and order. It only takes ~5 minutes with me to know that I am a perfectly normal, logical, enjoyable individual that has a million better things to do than to concoct valid symptoms of an undiagnosed disease. I would go to their offices and rant for hours and hours on end about how eff'in stupid my EX-doctors were. I actually found it to be very therapeutic! :) If you are in my shoes, there is no doubt you are going through a great deal of emotional turmoil, as coming to terms with your mortality at such an early age is no easy task. While coming to terms with my deadly incurable disease that no test can detect, and because it can not be detected it can not be treated, I had to deal with my EX-doctors telling me that I has a psychiatric disorder. Don't get me wrong, it was my EX-doctors that were the primary root of my anxiety (And I quote: "This country does not care about you. The world does not care about you. Stop writing letters because nobody cares about you.");  How are these doctors allowed to practice medicine?  Don't they take an oath to 'first do no harm?'  Can you hardly believe that my deadly incurable disease was actually a secondary factor to dealing with their B/S?

I still see both my head doctors to this day, so I will always have someone (with credentials) that can vouch for my sanity. They will tell you I am one of the strongest women they have ever met. I remain extremely bitter, but am trying to channel my anger into making a difference because I truly do not want anybody to go through what I have been through in the past two years. Challenge me, because it will only make me stronger. I call it --> FUEL.

My plight is no different than running a triathlon. There is a point in all endurance races when your physical conditioning will only take you so far. You typically end up relying on mental abilities, adrenaline, and a whole lot of supporters cheering you on to get you to the finish line. You are not competing against anybody else--->You are competing with yourself. I have come to understand that my chronic illness is 90% mental. Do not let anything distract you from your goal. Purge any negativity and overcome all divergences. Never give up fighting for what you believe in. You can do anything that you set your mind to with determination, inspiration and perseverance.

To this day, I look fabulous on the exterior. How ironic. My body feels like it is battling itself from the inside out and I look great. If you knew me 2 years ago, you know that something is seriously different but probably could not pinpoint it to any one thing. But, for those who have just met me, they would be none-the-wiser that I am a pint-sized walking infectious disease unit. I sleep 12-14 hours per night. In my wake time, I focus on caloric intake. The excitement of guessing which body part is going to flip out next truly adds to the fascination of my idiopathic immune disorder. I put my head in-the-zone and I play mantras through the back of my mind (..."Headstrong to take on anyone"...).

My point in telling you all this is because what I learned is that food, sleep, and exercise (regardless of how tired you are) are medicine. I have since gained back about 10lbs and I have yet another whole new wardrobe to show for it. Also, I learned that family is not just about birthdays, Sunday dinners, and celebratory events. Life is a rollercoaster and they truly want to help. If you are going through what I am going through, please talk to your friends and family about it (hire 10 therapists if you need to).

My family and friends have provided me unconditional love and support. It has been truly profound to have scratched the surface of a support network to realize how rock solid it is. They accepted phone calls into the wee hours of the night and are always there to listen when I randomly show up on their doorsteps, sobbing. My family and friends have kept my life as normal as possible by continuing to schedule dinner and movie dates. They buy me inspirational books and lemon-themed knick-knacks. They started driving me to doctors' appointments (Believe me, your doctors take you much more serious when you show up with your mother, in tow). They picked up groceries for me and helped premake hearty meals, so I could focus on weight gain. They took walks and attended meditation/yoga classes with me. My family and friends kept me focused on moving forward, while making peace with my past. They helped me embrace my new life. As I watched my career coming to a screeching halt, they helped me focus on the fact that I had my own namesake charitable organization. They helped me understand that I am living with a chronic illness, not dying of one. They made me appreciate how truly blessed I am to have them in my life.

My family and friends brought in doctor friends who I could talk to casually. Through a lot of coaching, I learned to work with a flawed medical system. You can not change anybody else, you can only change yourself. DO NOT, I REPEAT, DO NOT UNDER ANY CIRCUMSTANCES talk to your doctors about other people's symptomatology and ailments. They do not care, and they are not trained to think outside the box. Scientists like theories (cause -- and clusters of sick people), not doctors (effect). Also, doctors do not like when you jump to the punch line before they have gotten there. Doctors may be well-researched in academic, applicational and clincal medicine, but not all doctors not are a smart as you and they certainly do not live in your body.

I learned that a doctor's job is not to diagnosis you. A doctor's job is to take care of you. While a diagnosis often helps them determine how to care for you, it is not their primary objective. Also, contrary to popular belief and insurance pressures, doctors love performing tests.

It's not my fault the healthcare system is broken...I tried to fix it, but no one seemed to cared. So, as the mantra goes: if you can't beat them --> join them.

I learned to play dumb. Tell them what is wrong and let them fix it. For example:

Me: My chest feels likes its being crushed. I get so winded and fatigued. My throat is clogged and my sinuses torturous.

Doctor: Let's order a lung cat scan and a barium swallow. I will write you a prescription for Nasonex. Let's follow-up in 2 weeks.

Also, if your doctor thinks he is GOD, fire him. If your doctor is not listening to you, fire him. If your doctor is not taking you seriously, fire him and get a new one. Remember you are the customer and if you do not fight for yourself nobody will. There are a lot of great doctors out there and it just takes some time to find the right ones. Remember only 1 in 10 of them graduated in the top 10% of their class.

Once I was able to differentiate between taking care of myself (effect) and trying to stop an undiagnosed infectious disease from spreading (cause), I find my plight far more fulfilling and far less frustrating. I look at it like this: When I contact a senator or congressman, I am a humanitarian. I am no longer fighting for my life. I am now fighting for theirs. I no longer need the help of the CDC or the NIH or the politicians. Rather, they need me. If they choose not to listen it does not matter to me, personally, because I will still be sick (effect) and my undiagnosed disease (cause) will still be in their blood supply.

I can only be happy with what I am able to accomplish as just one human being, who has set out to save the world. My life has more meaning and more purpose than I ever thought imaginable. Like Shackleton's Legendary Exploration, it truly has been an amazing journey.

Bittersweet.

P.S. - If you are part of a cluster, please consider reporting yourself to your public health department. I know that they still do not care about me, but if enough people choose to report themselves, public health officials will start to understand what a BIG, BIG problem we are sitting on. These people work for you (not vice versa).

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Thursday, July 14, 2005

LET'S REDEFINE AIDS

How is it that you reach a point in your life when you realize that everything you have been told about everything seems so questionable? My head is still spinning. In just two years, the entire house of cards that the medical community built over the course of my lifetime has crumbled. Never in a million years could I have ever predicted this one.

To qualify for an AIDS diagnosis requires a HIV+ diagnosis plus either:

1) an AIDS-defining opportunistic infection (OI) or cancer
       and/or
2) CD4s below 200.

In a nutshell, that's the definition.

So, definitionally speaking, I can not have AIDS since I do not test HIV+ (by FDA standards). How bizarre? If you asked me 3, 5, 10 years ago if such words would ever be uttered from my mouth I would have thought that you were nuts. I basically have all the characteristics of an AIDS patient. But no HIV+ diagnosis. In my early writings, you will very clearly see that I was very focused on HIV, HIV, HIV. I had been told (perhaps, brainwashed is a better word) for two decades that HIV is the (one and only) cause of AIDS. So, why wouldn't I think that I have undetectable HIV? This was the first letter I ever wrote: http://www.thebody.com/Forums/AIDS/SideEffects/Q160149.html

Through countless hours of research and conversations with amazing scientists, researchers and advocates in the field, my thought process has definitely evolved and become more refined. But, just like I can't tell you what my undiagnosed virus is, I can honestly cannot say HIV is the cause of AIDS. Apparently, the medical establishment can not agree either, and there are vicious debates on the subject matter, but nobody seemed to mention that to me in the last 32 years of my life. (simply google "AIDS alternatives" or "AIDS dissidents")

Some days, I honestly do not know how I am still standing here to talk about it all. The summer/fall of 2003 was very, very rocky because my doctors, who I thought I hired to help me, continued to push me to the edge. But in the deepest darkest moments of my life, I decided to fight this with everything I have got. There have been many people who have stood by me through it all, but there were 3 things that kept me alive: 1) Montel Williams' book 2) an unsuspecting man (D.W.R.) and 3) Trapt's album. My friends still sing me the lyrics:

"Back off I'll take you on.
Headstrong to take on anyone.
I know that you are wrong.
Headstrong. We are Headstrong.
Back off I'll take you on.
Headstrong to take on anyone.
I know that you are wrong.
And this is not where you belong.
I can’t give everything away.
I won’t give everything away."


So, why can't HTLV cause AIDS?
Why can't HIAP2 cause AIDS?
Why can't HHV6 cause AIDS?

They all do, characteristically. Stop and think: Why does HIV get the exclusivity of causing AIDS, when clearly so many other viruses cause immune suppression as well?

Doesn't that seem wrong to anybody else, but me?

So, maybe I have HIV; Maybe I have a new/different strain that can't be detected; Maybe HIV is the cause of AIDS. Maybe I just have something that strongly resembles HIV, but isn't. Maybe I don't have HIV. Maybe Duesberg is right in that HIV isn't the cause of AIDS; Maybe NON-HIV-AIDS patients (like me) default to HIV, HIV, HIV because we have been brainwashed to think that HIV is the only cause of AIDS. Maybe I am living proof that CFS/CFIDS and AIDS are the same epidemic (caused by a non-HIV pathogen). Maybe, maybe, maybe...

A dear friend of mine recently proposed that AIDS needs to be redefined: "The AIDS definition needs to include any cancer or life-threatening opportunistic infection (OI) brought on by a virus. This includes HTLV-1 induced leukemia/lymphoma, HPV-16/18 induced cervical and anal cancer, rare HIAP-2 conditions, etc. All of these viruses directly and indirectly impair our cells' ability to defend our immune systems." I definitely agree. A quote is a quote, but provided EBV, HHV6 , HHV6(a) & HHV6(b) result in cancer/OIs they belong on the list as well. I do not discriminate, so I am adding them on. There are probably countless others.

So, let's redefine AIDS (using me as an example):

I have a viral syndrome of unknown etiology.
I have an acquired immune deficiency syndrome.
I have AIDS-like opportunistic infections.
I have AIDS.

Thank you for your prayers. There are still so many days that I know I am being carried by A Higher Power. My faith is in God who chose me to be his messenger. I am living proof that one person can change the world. I am humbled and blessed to be given the opportunity to show the world what I have the ability to accomplish.

Bittersweet.
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Tuesday, July 12, 2005

Lifecycle of a new disease. Please write Congress!

* Do you believe undiagnosed infectious diseases?
* Has your doctor exhausted every commercially-available diagnostic available to mankind, but yet you still remain systemically undiagnosed and your body continues to be flipping out on itself?

Here is my two cents:

1) For your doctor to perform a new test on your body, they need to request it from the Rx companies/laboratories.

2) For the Rx company to manufacturer a new test, a scientist needs to discover something (new) and bring it to the marketplace.

3) For a scientist to be enabled to discover a new pathogen, they need to be granted resources/funding to conduct extensive research, control groups, etc. {If you do not believe in undiagnosed diseases, please return to top.}

4) For a scientist to granted resources/funding they need to write grant proposals and garner support from the public agencies / national organizations, such as The National Institutes of Health, Centers of Disease Control, etc.

5) For the NIH/CDC, etc to have funding to grant to scientists (in the form of restricted/unrestricted grants), they must receive it from the Senate (i.e. your taxes dollars).

6) Do you pay taxes?

7) For the Senators and legislatures to provide the appropriate apportionments to health funding, they need to hear support from YOU - THE TAXPAYER! {If you are not a taxpayer, return to Step 6.}

CALL TO ACTION: If you believe in undiagnosed infectious diseases (of any sort) and you are getting NO WHERE with your day-to-day doctors, what you have to do is start writing to the people WHO WORK FOR YOU and tell them where you want your tax dollars to go to!!

You can do it anonymously, if you want to. No need to put a return address on the envelopes (if you do not feel comfortable). It costs just $.39 and a little bit on your time and it will help save your life.

Find your reps/senators here:
http://senate.gov/general/contact_information/senators_cfm.cfm

http://house.gov/house/MemberWWW.shtml

If you live outside USA, I'm sure writing the White House couldn't hurt either --> http://whitehouse.gov/contact.

I don't care what country manufactures a test to diagnosis me.  :-P

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Monday, July 11, 2005

A few highlights of my plight

World Bank: Global HIV-AIDS Program {Fri, Aug 6, 2004 10:43}:  "Let me applaud what you are doing. In those countries in which progress against HIV-AIDS is being made, it is because of efforts of people such as you."

Office of the U.S. Global AIDS Coordinator - Chief of Staff, Washington, DC {October 20, 2004}:

"Thank you for letter to the Office of the U.S. Global AIDS Coordinator regarding HIV-Negative AIDS. We have taken the liberty of referring your letter to the Division of AIDS at the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institute of Health.

American Red Cross CEO & COO {July 20, 2004}:  "I am very impressed with the altruistic spirit that you have adopted in this difficult time."

Deputy Executive Director - Geneva Switzerland: {Tue, 10 Aug 2004 16:20:55}: 

"Thank you for your letter and for sharing your frustration vis-a-vis the numerous health problems you are experiencing...we are forwarding your request to the World Health Organization...we hope our colleagues there will be able to provide you with further guidance...wish you every success in your search for assistance."

World Health Organization: HIV/AIDS Communication and Advocacy {Thu, 15 Apr 2004 17:43:38}:  "The World Health Organization is a public health body, and as such, we do not address individuals' health concerns. However, we intend to keep your message on file for our reference. If the Centre for Disease Control (CDC) and other national U.S. bodies contact us regarding these issues, then of course we will seriously consider a serious response on a population basis."

Office of the Vice President: Washington, DC {March 23, 2004}:

"Thank you for contacting Vice President Cheney for assistance in dealing with an agency of the Federal government." "The Vice President has asked me to respond. We are forwarding you matter to the Department of Health and Human Services...We have requested that they respond directly to you with a copy to us for our files, and we expect this to done at the earliest possibly opportunity. Thank you for contacting the Vice President. Best Wishes."

Department of Health & Human Services {October, 2004}:  "Thank you for your letter requesting information on the diagnosis of new diseases, particularly immunodeficiency syndromes..."

Department of Health & Human Services {May 30, 2004}:  "We appreciate your interest and support of public health programs within the CDC."

U.S. State Senator {June 22, 2004}:  "I appreciate being kept abreast of this situation. I have forwarded your concerns to Director of the CDC...Thank you again for writing."

CDC - Director Immunology & Virology (Atlanta, GA): "Take it to the Press. Be a whistleblower. Religions will get formed and movies will get made. You will alter world history."

=======================================================

  • My blood has been to CDC-Atlanta (twice).
  • My blood has been shipped to the Washington-DC U.S.A.F. pathology labs.
  • I participated in a Gulf War study @ Georgetown University, Washington, DC.
  • I participated in a Gulf War study @ MGH in Boston.
  • I administrated a Gulf War group w/ 7K+ veterans for ~6 years.
  • Facilitated by the United Nations, I have been abroad (twice) to meet with Luc Montagnier (Nobel Prize for his HIV discovery) and his Parisian colleagues to provide blood samples.
  • I have spoken with the producers of 60Minutes on a few different occasions.
  • I have been published 35 times on 4 continents --> 


QUOTE FROM MY FEDERAL TESTIMONY:

 "after opening my private foundation, I got the White House to open an investigation, Senator... to forward my case to the head of the CDC, & U.S. Global AIDS Coordinator to forward to NIH/NIAID.

Amongst other things, my blood has been to the CDC-Atlanta (twice) and to the Washington-DC pathology labs. I have sat on conference call with the American Red Cross. Facilitated by the United Nations, I have been out of the USA (twice now) to meet with a Nobelist...." 


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

Sunday, July 10, 2005

DEAR CONGRESSMAN

Dear Congressman,

I have a severe immune deficiency -- idiopathic CD lymphocytopenia -- that has gone systemically undiagnosed for over two years now.  I believe that I acquired my “chronic viral syndrome of unknown etiology” through a sexual exposure and I also believe I have sexually-infected another man.  Thus, I believe I have an undiagnosed acquired immune deficiency (or what many researchers call "NON HIV AIDS").

Initially, I thought my doctors were supposed to be helping me, but they have now exhausted all clinically-available diagnostic tests.  Later, I thought the Center for Disease Control (CDC) would assist me, but after some very specialized testing they no longer acknowledge me.  Because I am not diagnosed, I am offered no treatment.  My once seemingly prosperous future remains bleak.

Throughout my journey, I have had several doctors tell me that my symptoms were “a figment” of my “imagination.”  They told me that "nobody cares" about me.  They advised me to “stop writing letters” and to "stop fighting” all together.  I purged most of their ill-directed advice and argued them that they were wrong.  I know that with the unwavering support of my family and friends that I will fight this until the day I die.  But, I am too sick and too tired to fight this alone any longer, as trying to save the world has taken a great physical and emotional toll on me. I am just hoping for a little advice as to where I should focus my diminishing energies. My life (not unlike yours) is dedicated to the humanitarian effort of speaking for those that do not possess the same abilities.

I am not writing to you today for funding.  I am not writing to you for a diagnosis.  I am not even writing to you today to help me find a cure.  My plight is very simple: 886 days post-infection getting my body into a medical research program remains my only goal.  I believe this to be a very simple and reasonable request that requires your support: one (1) phone call, email or letter from you to the National Institute of Allergy and Infectious Diseases.

I am your daughter.  I am your coworker.  I am your sister, your aunt, and your best friend. 

What would you do?

What would you do if you were fighting for your life and potentially the lives of millions of others?

Thank you for your time and attention.


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


U.S. Reps here:

 
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Saturday, July 09, 2005

My official diagnosis: “Viral syndrome of unknown etiology"

I believe that I have a form of AIDS that is going undetected by standard HIV screening. Two+ years ago, after a heterosexual sexual encounter, I became seriously ill with what looks like the natural disease progression of AIDS. After an “acute infection stage” and a “period of asymptomatic health”, I have fallen extremely ill to an unrelenting, progressively-worsening physical demise. Whatever I am currently dealing with, it strongly resembles classic “early stage” HIV disease. Upon review of my medical files, it would be reasonable to suspect that I will be an HIV-Negative “AIDS” patient with a bleak future.

As my blood indicates, my body is reacting to its undiagnosed foreign invader with: altered CD4:CD8 ratios; a rapid decline in lymphocyte percentages; a decline in CD3s; inflated LDH, CH50, Cortisol and segmented neutrophils levels; and a low T3 uptake. In accordance, my body is reacting to its immunodeficiency with severe and extensive abnormalities ranging from minor ailments, such as extreme weight loss and debilitating fatigue to far more disturbing lung/thyroid tumors and AIDS-like opportunistic infections.

As worrisome as my health is to me, I am extremely troubled by the strong likelihood that more people are being infected every minute that cases like mine are allowed to go undetected. So, with the immeasurable support of my family and friends, I have decided to wage a loud noisy fight in hopes of sparing more innocent lives.

I have received a tremendous amount of invaluable advice and have spoken extensively with the most senior public health officials in this country. Over the past year, my blood has traveled to CDC-Atlanta (twice) and has tested negative for HIV strains: one, a, b, c, d, e, o, two and generically for reverse transcriptase (i.e. all known HIV’s, HTLV’s, spuma, FeLV, BLV, FIV, CAEV, VISNA, EIAV, BaEV, and GaLV, etc.). I have, however, read about many new HIV strains (a clade n and a highly divergent type two) as well as newly discovered retroviruses: HIAP-II, HTLV-3 and HTLV-4.

While I am relieved to have garnered attention from medical professionals, scientific researchers, and key governmental agencies, I do not feel that their attention alone is enough to spotlight the potentially explosive issue of HIV-Negative AIDS (a.k.a. idiopathic CD4+ T-lymphocytopenia). It is very apparent to me that we have a very big problem on our hands requiring substantially more research, funding, and media coverage.

Those of us who have what seems to be a Non-HIV form of AIDS should certainly think twice before donating blood. For the sake of public health, the American Red Cross should be trying to identify the infectious agent that is in our blood. Even though we do not test positive for HIV, I would hate to think that we are unknowingly and unintentionally spreading a new form of AIDS to our sexual partners. Unfortunately, during my asymptomatic dormancy phase, I believe I transferred my undiagnosed disease to yet another host, a heterosexual man who (after an "acute infection" and a "period of asymptomatic health") is now suffering from his own form of a mysterious illness. For all we know, we are in the early days of a Non-HIV AIDS epidemic.

I have come to appreciate that no one can diagnose us overnight. I just want someone to help me get my body into a medical research study. Why is this such an unreasonable request when you live in one of the wealthiest, most prosperous countries in the world? In an effort to further my cause, I have established a fund in order to make grants to fund my own study. I will knock on every door in the world, if I have to. Tell me, what would you do if you were fighting for your life and potentially the lives of millions of others?

What I need to understand, today, is how new diseases get diagnosed. Who cultures viruses? Who are these scientists? Where are their laboratories? Can you help me find them? How do pharmaceutical companies come to manufacture tests to diagnose diseases?

I welcome your thoughts, prayers, advice, and guidance.

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