Straight Talk About CFS/ME & Non-HIV AIDS

CFSgate is AIDSgate

2007-12-03T12:13:00.000-08:00

The medical establishment will have you believe that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of mysterious illness, but it’s no mystery to me; CFS/ME leads to HIV-Negative AIDS, idiopathic CD lympocytopena (ICL), a clinical diagnosis that I possess.

How can the AIDS establishment continue with a stale "it's caused by HIV" theory when there are ICL cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money.

The NIH spent $2.9 Billion this year researching perfectly healthy HIV+ people. Sick, ailing immunodeficienct (some of us dying) CFS patients received a meager $4 Million. How can it make sense to you? Source: http://report.nih.gov/rcdc/categories/

It's so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. AIDS patients are simply more CFS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFS iceberg, and it's already well-documented that HIV is not the cause of CFS/ME.

How else do you explain why there is no CFS/ME epidemic in the HIV+ population? CFS/ME does not discriminate. The answer is that there is; any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) is better on ARV's, and/or 3) is severely immunosuppressed (AIDS)...

...is a CFS patient.

Putting causal pathogens aside for a minute...simply rename CFS, ME, and AIDS all to be "low natural killer cell disease" and only diagnosis patients with "low natural killer cells" with it. Everyone would very clearly see that:

CFS + ME + AIDS = low NK cell disease = one catastrophic epidemic *

* not caused by HIV

My government sold-out global public health for the sake of profit --> industry, oil, and Orwellian greed.

Now that the mystery has been solved, could we please stop wasting time and re-allocate all the HIV funding into CFS/AIDS research?

I demand a revolution!

7 Step Plan to resolving our World’s catastrophic public health disaster:

1. Demand research funding parity for CFS with AIDS.
2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
4. Urge that AIDS organizations (like AmfAR) include CFS under their umbrellas so that CFS advocates don’t have to reinvent the wheel.
5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
7. Suggest that next December 1st be declared the first “World CFS/AIDS Day.”

I stopped fighting for myself a long, long time ago.

I fight for humanity.
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If you are moved, disturbed, horrified and/or inspired by my medical plight, please write a letter to your representative(s) demanding that HIV funding be halted and entirely re-allocated into CFS/AIDS research.

The government works for you...not vice versa!

U.S. reps can be found here: http://www.senate.gov/general/contact_information/senators_cfm.cfm http://www.house.gov/house/MemberWWW.shtml
http://www.whitehouse.gov/contact/

HIV Does Not Cause AIDS

2007-08-08T10:43:00.000-07:00

"More and more people are questioning their own diagnosis and the entire issue of whether HIV causes AIDS" http://aras.ab.ca/articles/popular/200706-FarberHIVAlive.pdf
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Why I Quit HIV. by Dr. Rebecca V. Culshaw http://www.lewrockwell.com/orig7/culshaw1.html
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"HIV does not cause AIDS. That was one of the most startling pieces of information to come out of the 21st Annual Meeting of Doctors for Disaster Preparedness (DDP), held recently in Phoenix, Arizona July 19. " sierratimes/03/07/29/blanton
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America's Biggest Cover-up: 50 More Things Everyone Should Know about CFS & Its Link to AIDS: http://www.fms-help.com/aids.htm
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Award-winning documentary, House of Numbers, about how the HIV/AIDS Story is being rewritten. Click here for a 2.5 minute trailer: http://www.houseofnumbers.com/site/ I was able to get a copy from my public library. If they don't have it, make sure they order one for their collection. Everybody needs to see this movie!
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Dr. Luc Montagnier, Virologist, discoverer of HIV, Institute Pasteur Paris: "There are too many shortcomings in the theory that HIV causes all signs of AIDS. We are seeing people HIV-infected for 9, 10, 12 years or more, and they are still in good shape, their immune system is still good. It is unlikely that these people will come down with AIDS later." (Miami Herald 23 Dec. 1990)
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“...My HIV patients for the most part are hale and hearty...Many of my CFS patients...are terribly ill and unable to work or participate in the care of their families...I can tell you if I had to choose between the two illnesses I would rather have HIV.”~ Dr. Nancy Klimas, NY Times “Is a Virus the Cause of CFS?” posted online 10/15/09
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Google "Luc Montagnier and CFS," and you will see that Luc is working on CFS/ME. Facilitated by the United Nations, I flew out of the USA to meet Luc in his laboratory, just before he was awarded the Nobel Prize for the discovery of HIV. A very cool experience for this finance geek. Thankfully I know French! More: http://en.wikipedia.org/wiki/Luc_Montagnier
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I feel like I am running one of my triathlons (like back-in-my-healthier-days) when you surpass a certain point when you are no longer performing on physical strength....but rather on pure mental agility and spiritual motivation. I see my finish line in the horizon: a CFS/HIV revolution!

AIDS in the absence of the virus that causes it?

2007-07-29T16:20:00.000-07:00

"...ICL, is an immunodeficiency syndrome in which...HIV, cannot be detected...ICL can be referred to as Non-HIV AIDS...many Non-HIV AIDS patients have developed the opportunistic infections or otherwise rare cancers associated with AIDS...This suggests that Non-HIV AIDS may also be transmissible. Research conducted at Tulane University..." http://www.autoimmune.com/Non-HIVAIDSGen.html
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I have always understood retroviruses to be cytotoxic; they don't kill cells. I don't see how a retrovirus (e.g., HIV, XMRV, HIAP-II) can be deemed the cause of any acquired immune deficiency syndrome (e.g., AIDS, CFS).
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50 More Things Everyone Should Know About The CFS Epidemic And Its Link To AIDS. By Neenyah Ostrom.

# 1. Some CFS Patients May Be Non-HIV AIDS Cases.

http://www.fms-help.com/aids.htm
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"A disturbing announcement was made at the July 1992 international AIDS conference held in Amsterdam: Several people with symptoms of AIDS, but who had no evidence of infection with either HIV-1 or HIV-2 (the viruses generally believed, at the time, to cause AIDS), had been identified by the U.S. CDC. A few weeks later...Newsweek made an even more shocking announcement: that CFS researcher Dr. Paul Cheney had in his practice 20 CFS patients who had the same immune system deficiencies as the non-HIV AIDS cases revealed at the Amsterdam conference." http://www.fms-help.com/aids.htm
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CFIDS/ME Patients with ICL

2007-07-20T18:52:00.000-07:00

HIV-Negative AIDS (ICL) cases, like mine, are the bridge that connects the CFS and AIDS paradigms. I often wonder: if "AIDS" had been named "low natural killer cell disease", rather than having it's present day man-made definitional construct, if the true nature of the relationship between AIDS & CFS would have been seen 2 decades ago?
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Request to retract Gallo's Science Magazine papers of 1984: http://www.imeassoc.com/Request_to_Science_mag.html
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CFIDS/CFS, FMS, GWI, MCS, and related illnesses: http://www.ncf-net.org/forum/HopewithICL-Fall05.htm
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I remain infuriated by my government's betrayal of her people. Most CFS/ME patients believe that their government has their best interest at heart, and sadly that is entirely untrue. So, to a lesser extent, I remain bothered that CFS/ME patients' do not question authority.

I think it's lovely that CFS/ME patients like to chit-chat amongst themselves in web forums. CFS is not science, however. CFS is not a disease...a syndrome is a syndrome (not a disease). CFS is 100% a political paradigm, and in order to make progress with CFS research "getting political" is the only solution.

To this day, I continue to write at least 12 letters per day. Here are some examples of responses that I've received: http://cfsstraighttalk.blogspot.com/2005/07/few-highlights-of-my-plight.html

The doorways keep opening for me. I can only imagine the profound possibilities of what would happen if every CFS/ME patient started doing the same thing.

If one person can change the world, imagine what 1,000 can do!

Please feel free to use this sample letter: http://cfsstraighttalk.blogspot.com/2006/10/potential-hope-for-cfidsme-patients.html

U.S. reps can be found here:
http://www.senate.gov/general/contact_information/senators_cfm.cfm http://www.house.gov/house/MemberWWW.shtml
http://www.whitehouse.gov/contact/
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AIDS & CFS: African Swine Fever Virus (ASFV) Implicated

2007-07-05T09:37:00.001-07:00

"What do people suffering of AIDS and those suffering of CFIDS - chronic fatigue and immune dysfunction syndrome - have in common? Apparently more than immune trouble.

There is a virus that seems to be present in both, but is almost never tested for. HHV-6A, thought to be a genetic cross between Cytomegalovirus and ASFV, is found in both AIDS and CFIDS patients.

HIV instead, a relatively harmless retrovirus that cannot cause the symptoms of AIDS, has been given all the blame. The hypothesis that HIV = AIDS has been scientifically and quite thoroughly discredited by Peter Duesberg in his book "Inventing the AIDS Virus, ..." http://www.newmediaexplorer.org/sepp/2005/04/28/aids_chronic_fatigue_modified_african_swine_fever_virus_implicated.htm

I AM LIVING PROOF: CFS --> AIDS

2007-06-25T15:31:00.000-07:00

I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that CFS and HIV-NEGATIVE AIDS are basically the same mysterious immune disorder.

Three 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" and a "period of asymptomatic health", I have fallen extremely ill to an unrelenting, progressively-worsening AIDS-like demise. I can pinpoint exactly when I was infected with my "chronic viral syndrome of unknown etiology" and because the "acute infection" stage was so distinguishable, I can also pinpoint exactly when my undiagnosed pathogen left my body and infected yet another host.

Whatever I am currently dealing with, it strongly resembles classic textbook HIV/AIDS disease. But, to add to my inquiry, I also clinically satisfy the CDC's criteria for the diagnosis of Chronic Fatigue Syndrome.

Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFS/ME and AIDS. Most people with CFS/ME do not like to talk about the many symptoms and immune abnormalities that they share with AIDS patients. I also suspect that most ailing patients would rather be told that they have the very mysterious CFS than to be told that they have AIDS.

I have a Master's degree. I am a director at my firm. I used to be a triathlete. I have never used IV drugs. I have never traveled abroad. I can count my sexual partners on two hands. Statistically speaking, I know that my undiagnosed infectious and communicable disease is not rare...so, you tell me, if they are not in the miscellaneous CFS/ME category, where are all these other immunosuppressed people?

Anyone with Chronic Fatigue Syndrome, who does not consider the possibility that CFS/ME will eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their own ability to diagnosis the root cause of their illness.

Why isn't CFS/ME a reportable disease overseen by our public health department? Why are ME and CFS (i.e., the same exact illnesses) suspiciously categorized as two separate diseases on a worldwide level (i.e., by ICD codes)? Doesn't anyone else but me, very clearly see, the catastrophic cover-up going on here?

Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of CFS) on the front pages of every newspaper in America? And if CFS/ME is Non-HIV AIDS, then, 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.

I want honest answers for myself, for everyone who is suffering from this hideous illness, and especially for those who remain uninfected by my undiagnosed infectious and communicable disease.

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 HIV-NEGATIVE AIDS cases (like mine) are allowed to go undetected -- especially if it turns out that AIDS and CFIDS/ME are basically the same disorder.

You can label my AIDS-like illness whatever you wish. I would even allow you to call it infectious-CFS, even though it is utterly beyond my realm of comprehension as to how the medical establishment can generically name an entire disease paradigm based on just one (of my numerous) symptom(s).

Regardless of how politics may try to dissuade or delude you, all you need to know is that my idiopathic immune dysfunction is infectious! It is contagious! And it is spreading, unleashed, in the world's population!

I am not afraid to say that I have AIDS without HIV -- idiopathic CD lymphocytopenia -- my second official clinical diagnosis. I am equally as unafraid of saying the most obvious thing about CFS/ME: IT SURE DOES LOOK LIKE AIDS TO ME.

We talk openly about preparing for an impending Avian Flu pandemic. Why not talk about the HIV-NEGATIVE AIDS epidemic that already exists (and is spreading) amongst us?

If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak of bravery from coast-to-coast.

CFS, AIDS, & ME: Syndrome vs. Disease

2007-06-06T15:54:00.000-07:00

It took me years to get over this first hurdle, as I used to be so brainwashed. If others can get beyond this hurdle too, I believe that we (as CFS patients) can get to the funding faster.

Chronic Fatigue Immune Deficiency Syndrome (CFIDS/CFS) is not a disease. CFS is a syndrome, as its name suggests.

Acquired Immune Deficiency Syndrome (AIDS) is not a disease. AIDS is a syndrome, as its name suggests.

Neither CFS nor AIDS are diseases. A syndrome is a syndrome.

Myalgic encephalomyelitis (ME) is a disease, just like MS or malaria.

CFS and ME are not the same (one a syndrome, the other a disease). CFS/ME terminology is not interchangeable, and is not accurate.

CFS (syndrome) patients like to align themselves with ME (disease) patients because it helps give our syndrome the dignity and respect that it currently lacks (i.e., due to the silly, belittling name our government labeled it). I coined this phenomenon 'disease envy.' Disease envy's advent: http://cfsstraighttalk.blogspot.com/2005_07_01_archive.html

I don't entirely disagree that CFS patients should do this. CFS patients have to understand however that we are stealing the name of a legitimate disease, ME. This is the reason why ME patients typically don't like to be lumped in with the CFS patients, because CFS patients' dilute the meaning of ME's very well-defined disease. I don't blame them. If I were a ME patient, I wouldn't want a CFS patient lumped in with me either.

There is currently a massive initiative to get CFS (syndrome) patients properly diagnosed as ME (disease) patients. Simply look-up: ME/ICC vs CFS/Fukuda. You will have to acknowledge however that not all CFS patients will quality for a ME diagnosis. I repeat CFS/ME terminology is not interchangeable, and is not accurate.

I see the big picture as to why CFS and ME should not be entirely severed (at least until the initiative is complete), as there is a high correlation and probable same causal pathogen shared between the two maladies. Allied government (political) simply named us two different things so we don't roll-up into the same category (i.e., by ICD-coding) on a world-wide level, which would garner more attention then require their public response.

I always hear CFS patients saying "oh, they're so stupid. They don't understand my illness." The answer is "no, they are not." The people (political) who set it up this way are very, very smart. They mindfully constructed it this way. It utterly horrifies me that we pay these peoples' salaries (political) to mask the very problem that they created. Government works for us (not vice versa), right? Allied government sold-out global public health for profit.

AIDS and CFS (both syndromes) are 100% political paradigms.

An ailing, immunosuppressed CFS patient could die of complications associated with their severe immune deficiency and not have been funded a dime in research or services. This happens every day in USA, UK, and Australia (being that they are NATO allies there are plenty of logical reasons for this geography).

Alternatively, anyone in Africa who presents to a doctor with symptoms (of basically anything) gets diagnosed an AIDS patient; HIV+ is not even a prerequisite. So an African could die of TB or a mosquito bite and their death would be ICD-coded as AIDS. AIDS (political paradigm) will get funded another billion dollars of taxpayer money. This happens every day in Africa, even though it is not HIV that caused their death. So, a patient who is symptomatically diagnosed as CFS or ME in the US/UK/Aussie would be diagnosed an AIDS patient if they were to move to Africa.

HIV is not the cause of AIDS, because AIDS is not a disease.

SCENARIO:
1) If you had the authority to allocate billions of dollars in taxpayer money to scientific research, where glblic health was your #1 priority, would you fund perfectly healthy HIV+ people (most of whom have never been sick a day in their life) or would you fund research for sick, ailing, immunodeficient CFS patients?

2) If you had the authority to allocate billions of dollars in taxpayer money, where acquisition of untapped oil/diamond reserves was your #1 political agenda, would you give it to perfectly healthy HIV+ people (most of whom have never been sick a day in their life) or would you fund research for sick, ailing, immunodeficient CFS patients?

The answer remains crystal clear to me.

These sham paradigms are pure lunacy. Neither CFS nor AIDS are even diseases. They are politically-defined syndromes. CFS and AIDS patients are not dealing with science. They are dealing with politics, and I want a revolution.

PLEASE WRITE TO CONGRESS:

If CFS and/or ME patients truly wanted billions of dollars of funding to be allocated to studying their illness, all they need to do is demand of their government officials’ that the medical establishment (e.g., NIH/NIAID) conduct a “Re-Appraisal of AIDS.”

If you are moved and disturbed by my medical plight, please write a letter to your representative(s) demanding that the medical establishment conduct a "Re-Appraisal of AIDS."

U.S. representatives can be found here: http://www.senate.gov/general/contact_information/senators_cfm.cfm http://www.house.gov/house/MemberWWW.shtml
http://www.whitehouse.gov/contact/

Be Big, Be Bold, and Be Brave.
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Message to François Qt (re: May 9th) ~

Tell your mum, the family, the hockey team, your boyz, the abutters, the radio broadcast, all the girlz, the habit-wearing women, the emt's, the wannabe forgetful people, my dopplinger, and all the other code talkers you had talk to me/us along the way that I say: 'BRAVO!' We always agreed that we were both equally as smart, one just a little bit more. Did you ever stop (even for a nanosecond) to consider that it might be me? If you all weren't so selfish, misguided and pitiable, you would have seen that you were outperformed right from the start. You-had-me-at-hello kisses. Self-proclaimed 'nice guy's are never nice, and it's really unfortunate that you forgot to log-out of your Y-acct when you left one day --> a moral moment that I had to overcome. bonito reloj. equipos de fantasía. You should know that 'playing dumb' is my best tactic. 拉霍亚. I pray that my 'angels' will always continue to keep watch over you (and your 'friend's). 12 parishes. Can you 'set-up' XLVI for me this year? Moondoggies. I am sure that you will agree that in me NOT taking that aspirin it makes us both witnesses of a pure miracle**. Now that I know Team4, I wonder what #1-3 are all about. I still love Glee. Quebec Nordiques. Please tell JackEE that I miss seeing him, and N.O'T that I say: 'kiss my a$s.' I pray that the glaucoma has not worsened w/o proper treatment. Has anyone ever told you that you blink when you lie (tell me that you love me just one more time)? 讓你的敵人更緊密. How many times do I have to tell you that I don't care what other people think of me... as there is only one man who will ever judge me. You certainly made my life rather entertaining, and I have no doubt that you will always remember your first (as your last). Remember your church mouse advice? That's what I say to you now. 'Man' can only dream of being as strong as God made this 'woman!' Knighty, night, nite... it's dreamtime. guffaw.

** Jules (Pulp Fiction): "There's a passage I got memorized. Ezekiel 25:17. "The path of the righteous man is beset on all sides by the inequities of the selfish and the tyranny of evil men. Blessed is he who, in the name of charity and good will, shepherds the weak through the valley of the darkness, for he is truly his brother's keeper and the finder of lost children. And I will strike down upon thee with great vengeance and furious anger those who attempt to poison and destroy My brothers. And you will know I am the Lord when I lay My vengeance upon you..."

Evil vs. good; attempt to poison and destroy ... sounds right to me.

"Chronic Fatigue Syndrome is real, CDC says"

2006-11-04T17:45:00.000-08:00

http://www.cnn.com/2006/HEALTH/11/06/chronic.fatigue.reut/index.html
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"After 20 years of denial, CDC has admitted that CFS is "real." These are excerpts from the recent press conference in which they announced the official government stance that this is a very real, biological, disabling disease. "
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"We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions." http://www.cdc.gov/od/oc/media/transcripts/t061103.htm?id=36410
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From what I can see, the cover-up is occurring in USA, UK, and Australia. Allied NATO Forces. Only troops from these countries returned from fighting in The Gulf (1991) with Gulf War Syndrome (GWS). No other countries have GWS, like France or Arabs.

The first case of HIV-Negative AIDS (ICL) presented inself in 1992, one year after the Gulf War. Initially there was tons of Press and general attention of the ICL cases....why wouldn't there be? But then the U.S. censored the discussion (e.g., the then head of the NIH, Anthony Fauci flew to Amsterdam to the International AIDS Conference) and shut-down all further scientific discussion of the matter. It's hard to even find journal citations now. It took me eons to discover them in the literature, because I had to read back so far. Like myself, my case should be in a medical journal, but the Corporate journals seem to not publish them or perhaps physicians are disswayed from even writing them. It's like we don't exist. We just die, and nobody even cares to acknowledge it.

There is a disturbing connection to the US' public annoucement "HIV is the probable cause of AIDS" in 1984. I find the "1984" connection to be disturbingly Orwellian. I believe these people are so twisted and misguided in greed that it just about fits right to me...but that's just me.

It seems that the military guys (not many women in the military back then) with GWS returned home, and infected their wives, girlfriends, and sexual partners. If you are not a veteran than you cannot be diagnosed with Gulf War Syndrome. What developed in the women got labeled CFS. CFS is undoubtedly an infectious disease. The children of these families have unprecedented cases of Asthma, ADD, and Autism.

I think it's simply compounded from there.

Chronic Fatigue Syndrome and Myalgic Encephalomyelitis are mindfully named different things in US, UK and Aussie. Although they are the same exact illness probably with the same exact cause. NATO government simply named them two different things so we don't roll-up into the same category (i.e., by ICD-coding) on a world-wide level, which would garner more attention then require their public response

CFS used to be called CFIDS (Chronic Fatigue Immune Deficiency Syndrome) The government mindfully erased the "Immune Deficiency" part out of our illness and called it just 'fatigue syndrome' because it is such a silly belittling name to a very serious multi-system illness that adversely affects the heart, brain, immune system, nervous system, circulatory systems and muscles. They are masking the severity of our illness, so the general public perceives us to be a bunch of lazy a$ses. Nobody gives CFS patients any respect because who isn't fatigued these days? CFS has no more to do with "fatigue" than Cancer does. Fatigue is just one of a dozen major symptoms.

I believe that the HIV component of it is part of a New World Order to reduce world population and kill off what White Supremists perceive to be the 'undesirable' underclasses (e.g., Africans, blacks, drug addicts, homosexuals, hemophiliacs).

A market was created for it. The Big Pharma companies are raking in billions convincing uneducated people in 3rd world countries that they need very expensive anti-retroviral drugs in order to live. They are literally drugging people to death (for profit). Oh the horror.....

In African anyone who presents to a doctor with symptoms (of basically anything) gets diagnosed an AIDS patient; HIV+ is not even a prerequisite. So an African could die of TB or a mosquito bite (malaria) and their death would be ICD-coded as AIDS. And the African would be put on very toxic, very expensive anti-retrovirals. Even though it is not HIV that caused their death. Why would you put a patient on an anti-retroviral when they do not even have a virus? It's pure lunacy and totally inhumane.

I believe the ultimate goal is to kill off all the Africans to gain access to untapped oil and diamond reserves that lie beneath the country of Africa. Google "Africa and oil."

My thoughts here might be a bit scattered...it's all off the top of my head and I am very ill today.

DEAR CONGRESSMAN - SAMPLE LETTER

2006-10-04T18:31:00.000-07:00

Remember the government works for you....not vice versa!

Permission is given to repost this letter. Please share.
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(feel free to edit):

Dear xxx,

As your constituent, I am very much concerned with the lack of funding for research of Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME), often referred to as CFS/ME.

CFS/ME is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems and muscles, including post-exertional malaise and neurological/ cognitive manifestations. See: http://www.imeassoc.com/

Research to help people suffering debilitating illness from CFS/ME, who are often homebound and bedbound, received a measly $6 million in federal funding last year, while perfectly healthy HIV+ people received $3.1Billion.

NIH-Sponsored Research Funding (2011)
HIV/AIDS = $2,906,000,000
CFS/ME = $4,000,000
Source: http://report.nih.gov/rcdc/categories/

We are citizens and taxpayers. We used to be productive members of our society and we would like to be again. Please help us by creating research funding parity for CFS/ME with AIDS. CFS/ME is oddly still considered 'a mystery' 30 years after it achieved notoriety in the U.S.

Just from what we know today, in terms of the immune dysfunction and human suffering, CFS/ME is just as serious a public health problem as AIDS.

Please fund CFS/ME research to help us get well, so we can do our part again.

Sincerely,
xxxx

==================================================
U.S. government representatives can be found here:
http://www.senate.gov/general/contac...nators_cfm.cfm
http://www.house.gov/house/MemberWWW.shtml
http://www.whitehouse.gov/contact/

Do I have CFS or AIDS? Or are they the same thing?

2006-07-27T15:28:00.000-07:00

I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that Chronic Fatigue Syndrome and HIV-NEGATIVE AIDS are basically the same mysterious immune disorder.

Three 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" and a "period of asymptomatic health", I have fallen extremely ill to an unrelenting, progressively-worsening AIDS-like demise. I can pinpoint exactly when I was infected with my "chronic viral syndrome of unknown etiology" and because the "acute infection" stage was so distinguishable, I can also pinpoint exactly when my undiagnosed illness left my body and infected yet another host. I am a link in a chain of systemically undiagnosed, sexually-connected, heterosexual sick people. Whatever I am currently dealing with, it strongly resembles classic textbook HIV/AIDS disease. But, to add to my inquiry, I also clinically satisfy the CDC's criteria for the diagnosis of Chronic Fatigue Syndrome.

Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFS/ME and AIDS. Most people with CFS/ME do not like to talk about the many symptoms and immune abnormalities that they share with AIDS patients. I also suspect that most ailing patients would rather be told that they have the very mysterious Chronic Fatigue Syndrome than to be told that they have AIDS.

I have a Master's degree. I am a director at my firm. I used to be a triathlete. I have never used IV drugs. I have never traveled abroad. I can count my sexual partners on two hands. Statistically speaking, I know that my undiagnosed infectious and communicable disease is not rare........so, you tell me, if they are not in the miscellaneous CFS/ME category, where are all these other immunosuppressed people?

Anyone with Chronic Fatigue Syndrome, who does not consider the possibility that CFS/ME will eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their own ability to diagnosis the root cause of their illness. Why isn't CFS/ME a reportable disease overseen by our public health department?

Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of Chronic Fatigue Syndrome) on the front pages of every newspaper in America? And if CFS/ME is Non-HIV AIDS, then, 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.

I want honest answers for myself, for everyone who is suffering from this hideous illness, and especially for those who remain uninfected by my undiagnosed infectious and communicable disease. 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 HIV-NEGATIVE AIDS cases (like mine) are allowed to go undetected -- especially if it turns out that AIDS and CFIDS/ME are basically the same disorder.

You can label my AIDS-like illness whatever you wish. I would even allow you to call it infectious-Chronic Fatigue Syndrome, even though it is utterly beyond my realm of comprehension as to how the medical establishment can generically name an entire disease paradigm based on just one (of my numerous) symptom(s).

Regardless of how politics may try to dissuade or delude you, all you need to know is that my idiopathic immune dysfunction is infectious! It is contagious! And it is spreading, unleashed, in the world's population!

I am not afraid to say that I have AIDS without HIV -- idiopathic CD lymphocytopenia -- my second official clinical diagnosis. I am equally as unafraid of saying the most obvious thing about Chronic Fatigue Syndrome: IT SURE DOES LOOK LIKE AIDS TO ME.We talk openly about preparing for an impending Avian Flu pandemic. Why not talk about the HIV-NEGATIVE AIDS epidemic that already exists (and is spreading) amongst us?

If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak of bravery from coast-to-coast.

Thank you in advance for your time and attention.

"Probable cause of Chronic Fatigue Syndrome"

2006-04-26T11:11:00.000-07:00

According to Dr Shyh-Ching Lo, senior researcher at The Armed Forces Institute of Pathology and one of America's top mycoplasma researchers, this disease agent causes many illnesses including AIDS, cancer, chronic fatigue syndrome, Crohn's colitis, Type I diabetes, multiple sclerosis, Parkinson's disease, Wegener's disease and collagen-vascular diseases such as rheumatoid arthritis and Alzheimer's.

Dr Charles Engel, who is with the US National Institutes of Health, Bethesda, Maryland, stated the following at an NIH meeting on February 7, 2000: "I am now of the view that the probable cause of chronic fatigue syndrome and fibromyalgia is the mycoplasma..."

http://www.nexusmagazine.com/articles/mycoplasma.html

Bizarro World

2006-03-26T18:21:00.000-08:00

Can't you see that we have it all backwards?

Most HIV+ individuals are not even sick (assuming they are not taking any toxic medications). It's questionable whether HIV+ individuals are even HIV+ since the diagnostic tests are so flimsy, requiring dilution and confirmatory tests, while creating both false positives and false negatives.

HIV+ people, if symptomatic, are just more CFS patients, but no one focuses on the similarities because of the political determination to turn distinctions into major differences. The CD4 paradigm keeps people from looking at the B-cells, natural killer cells, etc. that are dysfunctional in both syndromes. I believe that some HIV+ individuals will eventually progress to AIDS, but only because 1) a second pathogen -- one similar to a CFS patient's pathogen -- triggered their demise or 2) because the repeated intake of toxic medications (E.g. AZT) caused system failure.

AIDS patients are just more CFS/ICL patients, who only by coincidence, have a questionably harmless virus, HIV.

So, the question remains (15 years later): what is the cause of CFS?

I WANT A CFS/AIDS REVOLUTION (AND I WANT IT NOW)!

2006-03-26T16:56:00.000-08:00

Why are Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) -- the same exact disorder -- named two different things in the most powerful nations in the world (United States, United Kingdom, and Australia)? Why are CFS and ME so prevalent in these three allied countries? Why is ME mindfully categorized as a psychiatric disorder, in the United Kingdom, even though there is objective evidence (and millions of immunodeficient patients) that contradicts otherwise? Why does ME have a barely pronounceable naming convention? In the USA, why does the medical establishment label the CFS disease paradigm with such a belittling name, which hardly portrays the severity of the illness? And, why do you only get a CFS diagnosis when you are barely hanging on by a thread? Why does idiopathic CD4 lymphocytopenia (ICL/HIV-Negative AIDS) -- the most advanced stage of CFS -- have such a tongue-twister of a name as well?

Why are Gulf War Illnesses/Syndromes (GWI/S) commingled in the same, we-are-going-to-neglect-you-and-could-not-care-any-less-about-you, bucket as CFS/ME patients? Am I a GWI/S patient? Or are they CFS/ME patients? Why was the major media momentum on HIV-Negative AIDS (idiopathic CD4 lymphocytopenia) abruptly halted at the 1992 International AIDS conference, one year after the Persian Gulf War I?

"As you are no doubt aware, NIAID head Anthony Fauci quelled the only important public debate that ever sprang up around this anomoly, in 1992, when doctors at an AIDS conference in Amsterdam started revealing that they had scores of HIV-negative "AIDS" cases. Fauci flew in to the conference from the U.S. on Air Force Two and held a press conference that swiftly hammered any rising curiosity right out of the press body, by informing them that these cases had nothing to do with AIDS and were their own disease (ICL). He added that focusing attention on this was irresponsible. Heads nodded and notepads whooshed, as pages were filled with the new doctrine. Before you could shake a stick at any of it, the CDC had renamed all HIV-negative cases "ICL,"...
(Celia Farber, NYPress, Volume 18, Issue 2, The Mail)

Do I have CFS/ICL? Or do I have ICL/AIDS?

Statistically speaking, I know that my idiopathic illness is not rare, so why are there no research programs in the USA aimed at determining the cause of CFS and/or idiopathic lymphocytopenia (http://www.clinicaltrials.gov/)? Why, when you search the internet for my idiopathic illness, am I one of the top 10 resources that comes up -- even present-day medical journal citations are hard to find? Why do I (i.e. my blood) have to go keep going out of the USA to pursue a systemic diagnosis? Does anybody actually believe that they can find a cure for an illness, without first understanding its cause? Why was NIH/CDC funding, apportioned to CFS research, throughout the 1990's mysteriously misrouted? And, why do so many CFS/ME patients test positive for the bacteria, Borreliosis (a.k.a. Lyme), even though there has been no exposure to, or risk for, ticks?

Why are US-based scientists, who question the HIV/AIDS paradigm, banished to other countries to pursue their research studies (e.g. Dr. Peter Duesberg Ph.D.), finding that all their government-sponsored funding has vanished (e.g. Dr. W. John Martin M.D. Ph.D.)? Why isn't my government (i.e. those who purportedly work for me, not vice versa) more supportive of, and intrigued by, research for millions of its ailing/dying, CFS-diagnosed citizens? Do you think it's possible that my government already knows exactly what is causing CFS/ME, which would explain why it need not conduct any more research, so rather than spending their time trying to fix the problem they choose to spend their time (i.e. my tax money) trying to mask the truth by creating a facade built of smoke and mirrors?

Why do CFS/ME patients allow themselves to be repressed and muted? We are the ones with the (a)cquired (i)mmune (d)eficiency (s)yndromes. We are the A.I.D.S. patients and all of our research funding goes towards fueling a, clearly bogus, HIV/AIDS paradigm -- which falsely stigmatizes, demoralizes and, in some cases, criminalizes very healthy HIV+ individuals, who are being brainwashed into drugging themselves to death.

Why aren't more people outraged?

I WANT A CFS/AIDS REVOLUTION
(AND I WANT IT NOW)!

I AM NOT AFRAID OF THE TRUTH.
I AM A HIV-NEGATIVE AIDS/CFS PATIENT.
I AM A HUMANITARIAN, AND
I DEMAND A REAPPRAISAL OF AIDS!

PLEASE WRITE TO YOUR EMPLOYEES AND TELL THEM WHERE YOU WANT YOUR TAX MONEY TO BE SPENT:
http://www.whitehouse.gov/contact/

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

http://www.senate.gov/

Anyhow, Gallo's kicking off the keynote speech on HHV6 in Barcolena in just 35 more days: http://www.hhv-6conference.com/.

Also, worth a read: http://www.politicalgateway.com/news/read.html?id=5420.

Research Links

2006-03-25T17:58:00.000-08:00

http://www.ei-resource.org/illness-information/environmental-illnesses/gulf-war-syndrome/
https://hhv6.jottit.com/
http://www.hhv-6foundation.org/
http://hhv6.blogspot.com/
http://www.wisconsinlab.com/
http://www.redlabsusa.com/
http://www.autoimmune.com/
http://www.aegis.com/pubs/gmhc/1992/GM060803.html
http://www.chronicillnet.org/online/enigma.html
http://www.ncf-net.org/forum/HopewithICL-Fall05.htm
http://www.lightconnectiononline.com/Archive/nov04_colums.htm
http://www.ncf-net.org/forum/presidentsMsg0402.html
http://www.merck.com/mmhe/sec14/ch174/ch174d.html
http://www.cdc.gov/ncidod/diseases/cfs/publications/causes.htm
http://mentalhealth.about.com/b/a/054991.htm
http://communitydispatch.com/artman/publish/article_3881.shtml
http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=3772/
http://www.chronicillnet.org/CFS/Ostrom/CFS_book.html
http://www.aegis.com/news/lt/1992/LT920718.html
http://www.newscientist.com/article.ns?id=dn6239
http://www.nexusmagazine.com/articles/mycoplasma.html
http://dailygaycartoon.freeservers.com/dissent16.htm
http://www.sickofdoctors.addr.com/articles/top100_aids_inconsistencies_print.htm
http://video.google.com/videoplay?docid=-6814491427846073388&q=conspiracy+duration%3Along&pl=true
http://http//www.hhv-6conference.com/index.php
http://www.rethinkaids.info/body.cfm?id=1
http://hhv6.blogspot.com/
http://www.aidsmeds.com/news/20010108scie001.html
http://www.afrol.com/articles/11955
http://www.afrol.com/articles/13708
http://www.ncf-net.org/library/PIV5HostChallenge-0606.htm
http://www.ncf-net.org/PressReleases.htm
http://aidsinfonyc.org/hivplus/issue2/updates/link.html
http://www.msnbc.msn.com/id/6448213/did/7036310
http://www.cfids-cab.org/MESA/Hillenbrand.html
http://www.aliveandwell.org/
http://www.meactionuk.org.uk/MECFS_peer-reviewed_research_data.htm
http://www.newmediaexplorer.org/sepp/2005/04/28/aids_chronic_fatigue_modified_african_swine_fever_virus_implicated.htm
http://www.politicalgateway.com/news/read.html?id=5420
http://www.sonic.net/~doretk/ArchiveARCHIVE/Aids/1.%20AIDS%20Biowarfare.html
http://www.ctaz.com/~donavan/mohave.htm
http://www.sv40cancer.com/
http://www.ccid.org/index.htm
http://www.shillfactor.net/pages/1/index.htm
http://www.gulfwarvets.com/article24.htm
http://www.gulfwarvets.com/index.html
http://www.valdezlink.com/gwv/symptomsof-gulfwarillnesses.htm
http://www.autoimmune.com/GWSGen.html
http://www.americanfreepress.net/html/cancer_epidemic_.html
http://www.whale.to/vaccine/cantwell2.html
http://www.ariesrisingpress.com/
http://www.s3support.com/members/scientific/publications/index.cfm#
http://www.whitehouse.gov/contact
http://www.house.gov/house/MemberWWW.shtml
http://www.senate.gov/general/contact_information/senators_cfm.cfm

BOOKS:
Climbing Higher-Williams
Turning the Mind into an Ally-Mipham
Osler's Web-Johnson
Rethinking AIDS- Root- Bernstein
Virus Hunter- Peters
Virus X-Ryan
The Virus & The Vaccine- Bookchin & Schumacher
Betrayal of Trust: The Collapse of Global Public Health- Garrett
The Virus Within- Regush
Inventing the AIDS Virus- Duesberg
CF FM & Lyme Disease-Golberg/Trivieri
The Closing Argument- C. Ortleb
The River- Hooper
Emerging Viruses: Nature/Intentional- Horowitz
CFIDS FMS & The Virus/Allergy Link-Duncan
CFS FMS & Other Invisible Illnesses-Berne

Open Letter To One Of My Critics

2006-03-05T18:01:00.000-08:00

Thank you again for your continued interest in my idiopathic immune deficiency. There remain no inconsistencies, contradictions, or changes to my story. If you had “done your homework” on me, as you suggest, you would know that my non-risk group body has been saying the same unwavering, progressively-worsening, story for the last 1,000+ -- rather enduring -- days.

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/AIDS establishment would find the AIDS dissidents far more respectable, if they could find it in themselves to use my HIV-Negative AIDS case to debate the merits of the HIV/AIDS 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. 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..."). Interesting...don't you think? 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://www.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://www.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 television, 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 ole 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 really, really good!

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! 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://www.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://www.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://www.house.gov/house/MemberWWW.shtml)

If you had "done your homework" on me, as you suggest, you would already know that I like making rain. Good press, bad press -- whatever -- I like that people are talking about HIV-NEGATIVE AIDS! So, thank you again for your time and attention.

Do not falsely assume that I am a team of one. Our paradigms are shifting, and, as I am told, it is history-altering.

All the best for humanity!

Why I Quit HIV. Dr. Rebecca V. Culshaw, Ph.D.

2006-03-02T17:33:00.000-08:00

"For over twenty years, the general public has been greatly misled and ill-informed. "

http://www.lewrockwell.com/orig7/culshaw1.html

"Harpers astonishes the world with the extent of AIDS skulduggery"

2006-02-20T16:41:00.000-08:00

"Anthony Fauci will probably spill his coffee when he read "Out of Control", everyman's guide to the HIV?AIDS scam. Duesberg gets his due as the whistleblower of the Enron of science."
{Source: http://www.newaidsreview.org/posts/1139904679.shtml }

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

But, if HIV is not the cause of AIDS, then, what is?? Because HIV-Negative AIDS patients are not prescribed any toxic antiretroviral medications. Nobody even acknowledges our idiopathic illnesses, never mind to care enough to want to drug us...I believe that to systemically diagnosis millions of ailing, med-free, immunosuppressed CFS patients -- will be to answer the next-most, sequentially-logical question: What is the cause of Chronic Fatigue Syndrome (CFS)?

Orthodoxy: HIV/AIDS

AIDS Myth: HIV?AIDS

Proposal: CFS->AIDS

Please write your representatives requesting a REAPPRAISING OF AIDS and funding for research on HIV-NEGATIVE AIDS cases.

http://www.house.gov/house/MemberWWW.shtml http://www.whitehouse.gov/contact/

REAPPRAISING AIDS: NATURE VS. INTELLIGENCE?

2006-02-12T14:52:00.001-08:00

In 3rd world countries, where HIV diagnostic tests do not exist CFS patients are labeled AIDS patients by sheer symptomatology alone. AIDS / CFS are the same epidemic because viral and bacterial diagnostic tests do not exist. It is just nature running it's course.

It is only in first and second world countries (E.g. USA), where we over-complicate everything with questionably defective diagnostic tests and shoddy intellectual definitional platforms (see below), where achieving the elite status of an AIDS diagnosis must be coupled with (or predestinated by) an HIV+ diagnostic test result. In the USA, all non-HIV viruses and bacteria that cause immune dysfunction (HHV6, HIAP2, EBV, HPV16/18) are defaulted into the miscellaneous CFS category, which clearly represents the masses of ailing acquired immune deficient patients. It is these patients, who run the risk of progressing to the severity of an HIV-NEGATIVE AIDS diagnosis (like me).

It is questionable whether HIV is even involved in AIDS, which is why I recognized it (as a small category at the bottom). Since I opened my mind to studying the beliefs of all three paradigms (HIV/AIDS, AIDS Myth, and CFS) I believe that AIDS patients are just more CFS patients who, by happenstance, have the questionably harmless virus, HIV. I believe that some HIV+ individuals will evenutally progress to AIDS, but only because 1) a second pathogen -- one similar to a CFS patient's pathogen -- triggered their demise or 2) because the repeated intake of toxic medications caused system failure. Can't you see? HIV may not be the cause of AIDS --> it's just an innocent passenger in a hijacked car forced to take a wild ride. Had HIV not been present, the host would have still acquired the secondary illness, but rather would had progressed to an HIV-NEGATIVE AIDS patient instead.(http://cfsstraighttalk.blogspot.com/2006/02/who-are-aids-dissidents-reappraising.html)

Over the last two years, I have read a lot of medical research literature. HIV Negative AIDS (a.k.a. Idiopathic CD4 Lymphocytopenia, ICL) cases percolate throughout numerous HIV/AIDS research documents. I first stumbled across them in Johns Hopkins "2003 Medical Management of HIV Infection" guide (J. Barlett, J. Gallant - Chapter 2, Page 21) (http://www.hopkins-aids.edu/publications/book/03MMHIV1to3.pdf ). Interestingly, ICL cases also weave their way through the CFS literature (http://www.ncf-net.org/forum/presidentsMsg0402.html). HIV-NEGATIVE AIDS cases are the bridge that connect the CFS and AIDS paradigms. I wonder: if "AIDS" had been called a "low natural killer cell syndrome", rather than having it's present day definitional construct, would the true nature of the relationship between AIDS and CFS been seen two decades ago?

In the USA, CFS patients are the equivalent of an AIDS patient in Africa (see below). If I lived in Africa right now I would have an AIDS diagnosis in hand. Rather, because of geography, capitalism, and politics, I am both a CFS and an HIV-Negative AIDS patient instead. But, in the USA, nobody takes CFS seriously, because the disease has a belittling name -- which hardly portrays its severity. We are sick, suffering, and chronically ill. I recognize and understand that many CFS patients do not like the big, bad, ugly word called “AIDS”, or the thought that they may progress to an HIV-Negative AIDS diagnosis. Believe me, I was not really too keen on the idea at first either, and, as ailing patients, we walk in the same shoes. But, as a humanitarian, I have millions of lives to think about, and you will not find a stitch of stigmata in me.

I know that the "AIDS" naming convention more accurately portrays the horrific essence of the CFS illness. I have found that when you say the word "AIDS", people listen. People quickly understand. People quickly care. If we can get people to care enough to understand the horrific depths of this illness, to care enough to understand it's impact on humanity, and to care enough to fund CFS:AIDS research then CFS patients need to get over their fears of saying such a simple word: AIDS. AIDS. AIDS. AIDS. AIDS. The truth is, if it is triggered by a virus (or bacteria) and it causes an immune deficiency, then it is what it is.

I can already sense that our paradigms are shifting. I am certain that with a clear vision -- and a whole lot of noise -- that change is evitable. I respect anybody who stands for a belief, but the once-progressive AIDS dissidents are becoming just another conformed, closed-minded, orthodoxy with unproven theories and a lot of rules and restrictions. I would rather stand by myself -- as a non-conformist with a fresh ideology -- than to follow misguided people in the wrong direction.

CFS sufferers tell me all the time that they are "willing to try anything" to save their lives. Please write your senator and representatives requesting a “REAPPRAISAL OF AIDS”.

http://www.senate.gov/general/contact_information/senators_cfm.cfm http://www.house.gov/house/MemberWWW.shtml

{click to enlarge}

Who are the AIDS dissidents? Reappraising AIDS.

2006-02-01T15:01:00.000-08:00

There is a relatively powerful movement of non-conformists who question the orthodoxy HIV=AIDS paradigm. Simply put, they are the AIDS dissidents. They claim that HIV is not the cause of AIDS. They claim that there is no stitch of proof that HIV causes AIDS. They claim that AIDS is a falsity. They theorize that HIV, like all retroviruses, is harmless. AIDS skeptics claim that the HIV diagnostic tests are as flimsy as the orthodox paradigm for which they stand, requiring dilution and confirmatory tests, while creating both false positives and negatives. They claim that HIV/AIDS is a fraud, manufactured solely to benefit the pharmaceutical companies, who get rich pumping toxic medications into patients who do not know better to question them, and that it is those very same carcinogenic drugs that eventually kill people. Most AIDS dissidents claim to want a REAPPRAISAL OF AIDS, but then stipulate that there couldn't possibility be any other viruses that cause immune dysfunction.

I have HIV-NEGATIVE AIDS (idiopathic CD8 lymphocytopenia). So, I believe that it is 100% appropriate for me to question whether HIV is the cause of AIDS. One AIDS dissident group has been very clear, however, that they want no part of an HIV-NEGATIVE AIDS patient in their community. It is all very bizarre to me: Why wouldn't an AIDS dissident community be embracing an HIV-NEGATIVE AIDS case? Why wouldn't the AIDS dissident community be leveraging HIV-NEGATIVE AIDS cases to argue their viewpoint? Hello? Cases, like mine, are the whole foundation for their very existence. Why wouldn't an establishment, which claims to offer the most "comprehensive, detailed analyses of every aspect of so-called "HIV" and "AIDS"", be analyzing the parallels between AIDS and CFS?

Oddly, many AIDS dissidents refuse to acknowledge my existence, while still others choose to throw stones -- which, might I add, are coming from people who should be extra-special allies. I can only speculate that my fact-based, epidemiologically-linked HIV-NEGATIVE AIDS case threatens their belief that viruses can not cause illness. And, while my views toward Western medicine have been forever altered (in just two, short, but rather enduring, years), I can say that viruses can cause severe illness, clusters of linked sick people, and even death.

I think where most AIDS dissidents miss the boat is that they are so busy saying HIV is not the cause of AIDS (whether it is - or is not - a cause of immune deficiency I really do not know) pointing to drug toxicity, benzene, lifestyles, water supply, oxidative stress, etc. that they fail to see that other stealth viruses (the result of a faulty HHV6 assay, for instance) are clearly causing immune dysfunction. Certainly, lifestyle, eating habits, and genetic predisposition are all secondary factors that can expedite one's physical demise, but acquiring a nasty virus can most definitely be the precipitating event.

I think where most AIDS dissidents continue to miss the mark is that they are so busy saying HIV is not the cause of AIDS that they fail to see that there is a blazing heterosexual CFS epidemic sweeping across the developed world (http://cfsstraighttalk.blogspot.com/2005/12/do-i-have-aids-or-chronic-fatigue.html). In 3rd world countries, where HIV diagnostic tests do not exist (and/or are too expensive to conduct) CFS patients are labeled AIDS patients by sheer symptomatology alone. It is only in first and second world countries, where we over-complicate everything with questionably defective diagnostic tests and shoddy intellectual definitional platforms, where achieving the elite status of an AIDS diagnosis must be coupled with (or predestinated by) an HIV+ diagnostic test result. That's right people...if I lived in Africa right now I would have an AIDS diagnosis in hand. Rather, because of geography, capitalism, and politics, I am both a CFS and an HIV-Negative AIDS patient instead.

Can't you see that I am living proof that we have our epidemics, and its causal pathogen, mixed up? Can't you see, in the USA, AIDS patients are just more CFS patients, who only by pure coincidence, also have an HIV+ diagnosis? Can't you see that I am living proof that we have it all backwards? Can't you see that we are coddling those with AIDS, while neglecting those with CFS, even though they have the same illness? Can't you see that we are giving all of the funding to just a tip of the iceberg? Can't you see that characteristically I have AIDS, but I don't have HIV? Can't you see that cases like me represent the glimmer of hope that HIV+ individuals have been praying for -- for decades? What if HIV is not the cause of AIDS?

If you can not see that there is something seriously wrong going on with both AIDS and CFS research by looking at an HIV-NEGATIVE AIDS / CFS case of one (E.g me) then you are clearly living a life of denial. If you can not see that there is something seriously wrong going on with both AIDS and CFS research by looking at an HIV-NEGATIVE AIDS / CFS case that can be epidemiologically-linked (E.g. those linked to me) then you are living in a world of delusion.

My case currently sits at the apex of three disparate paradigms: Chronic Fatigue Syndrome (clinical diagnosis: "CFS"), HIV/AIDS (clinical diagnosis: "viral syndrome of unknown etiology"), and AIDS Myth (clinical diagnosis: "idiopathic CD8 lymphocytopenia" - a.k.a. HIV-NEGATIVE AIDS) --> potentially representing over a billion ailing patients worldwide (and while I can not talk about everything, a few highlights of my plight are listed here: http://cfsstraighttalk.blogspot.com/2005/07/few-highlights-of-my-plight.html)

We need to get our paradigms working together, if only for humanity's sake. CFS patients are chronically suffering, destined to be ailing HIV-NEGATIVE AIDS patients although most of them refuse to acknowledge it. AIDS dissidents definitely have a valid point that HIV may not be a cause of AIDS, but they are suggesting the wrong non-viral causes as alternatives. HIV+ individuals, the majority of whom are already part of socially-repressed classes (African Americans, homosexuals, the impoverish), are being falsely stigmatized/demoralized and in some cases criminalized, and possibly, and quite literally, drugged to death by an orthodoxy that may be questionably inaccurate. I really see no reason why there shouldn't be an uprising, because each group has vested interest in the other (and billions of dollars of funding -- i.e. our tax money -- is currently fueling the entire monstrosity. It all just needs to stop!)

I really wish that more of the closed-minded AIDS dissidents would use my fact-based HIV-NEGATIVE AIDS case to expand their mindsets, because I believe that my case is their long-awaited catalyst to an AIDS REEVALUATION REVOLUTION --> which I believe to be our collective goal.

AIDS dissidents need to get up to speed on the CFS epidemic -- which is believed to be caused by HHV6. I suggest reading Hillary Johnson's book, Osler's Web, as a starting point:(http://www.amazon.com/gp/product/051770353X/sr=8-1/qid=1139498368/ref=sr_1_1/104-0661546-9436744?%5Fencoding=UTF8). When later asked: What's the cause of AIDS? Naturally, after denouncing HIV's involvement, all an AIDS dissident would have to say, rather than pointing to all their non-viral secondary factors, is: Why not ask the CFS establishment...They are the one's with millions of ailing immunosuppressed patients.

Regardless of the ignorant, I communicate with the more progressive AIDS dissidents for two reasons: 1) to keep myself educated and 2) to educate others who are intrigued enough to understand what the magnitude of my case represents to the HIV/AIDS, AIDS Myth, and CFS movements. I think that the more progressive researchers truly grasp that there is a distinct difference between being an AIDS dissident (closed-minded with all sorts of rules and restrictions, just like the orthodox community) and being an AIDS REAPPRAISOR (open-minded, to wherever the facts may lead us).

I, unlike many, do not feel that I have the luxury of timelessly listening to stale ideologies. I know I must be doing and saying something right, because I am truly in awe at what I have accomplished -- mentally, physically, academically, and politically -- in just about two years. When was the last time you believed in something, put together a strategy and an action plan, and then communicated it, digging deeper inside of yourself than you ever knew anybody had the depths to dig, only to have the United Nations respond to your concept?

It is clear to me that there is immeasurable passion, determination, and frustration amongst everyone involved, why not work harmoniously together by demanding our politicians to conduct a REAPPRAISAL OF AIDS? (http://www.senate.gov/general/contact_information/senators_cfm.cfm)

My quest has always been to unravel the truth, with an open mind (no stipulations attached!). I like that my case sparks controversy, because stirring the pot is always a great part of cooking a fabulous meal. If you can't handle the truth, you need to get out of my kitchen -- which is currently being used to nourish inquiring humanitarian minds.

I am living proof that one person can change the world. Imagine what a 100 of us could do. Or, 1,000 of us. Or 1,000,000 of us, working together, could accomplish for the betterment of humanity. The possibilities alone boggle my mind...

Vote for Viral Parity

2006-01-25T18:12:00.000-08:00

Why does HIV get the exclusivity of causing AIDS (by man-made definitional construct) when clearly so many other viruses cause immune deficiency too? Doesn't that seem wrong to anybody else, but me...It's stupid to me that my immune disorder (which I can epidemiologically link to other sexual partners) is called HIV-Negative AIDS, idiopathic CD8 lymphocytopenia.

It basically tells me one of a few things (which I have sequenced in compounding horrific order):

1) If the HIV/AIDS connection is 100% correct, then I have an undetectable strain of HIV.
2) If the HIV/AIDS connection is partially correct, then HIV is not the only cause of AIDS and the definition of AIDS is flawed, and in dire need of reevaluation. (Read my "LET'S REDEFINE AIDS" post, http://cfsstraighttalk.blogspot.com/2005/07/lets-redefine-aids.html)
3) If the HIV/AIDS connection is 100% incorrect, then HIV is not the cause of AIDS, which means: OOPS, we got the HIV/AIDS connection wrong. We are so sorry, but we refuse to acknowledge that we could have botched up the AIDS definition so badly (and 'wasted' billions of dollars worth of taxpayer’s money in the process) over the past 2 decades that we can not even bring ourselves to acknowledge it, never mind attempting to fix it. So, rather than reevaluating the definition and recognizing the real possibility that we missed the mark, we are going to create a detractive HIV-Negative AIDS category instead (because these AIDS-like immunodeficient patients just keep showing up and we have to put them somewhere). And, since we definitely do not like smart people asking smart questions, and presenting their medical cases based solely on fact, before one actually progresses to the severity of an HIV-NEGATIVE AIDS diagnosis, we are going to try to dumb-them-down, by tossing them into the mysterious miscellaneous Chronic Fatigue Syndrome bucket. Do you want a pen-pal and a lolli-pop with that? Because, based on our experience, most CFS patients would rather suffer timelessly chitchatting amongst themselves than to get their representatives (i.e. the politicians) rocking out of their seats -- by demanding them to investigate the underlying truths about their hideous illnesses. History has also shown us that CFS patients do not have the tenacity to question our Great and Almighty CFS & AIDS paradigms (i.e. our theoretical frameworks) -- and repressed is just the way we like 'em.

There is nothing more natural for me than to compare the clinical diagnoses of CFS and HIV-Negative AIDS, since the severity of my illness is such that the two sit harmoniously in my medical file. It seems awfully suspect to me that a sick HIV-Negative immunosuppressed CFS patient (E.g. me) looks more like an ailing AIDS patient than a healthy long-term HIV+ patient does. So, I would love for someone to explain it all to me, because there is something seriously wrong going on with AIDS and CFS research. And, if you can not explain my medical file to me, you should be equally (if not more) horrified by it all.

Because, as HIV-Negative AIDS patients continue to present themselves, as they have been dating back to 1992, there is one of four problems going on: 1) we have a new undetectable virus on our hands, 2) we need to acknowledge that perhaps the wrong virus was selected as the causal pathogen of the man-made AIDS definition, 3) we have to redraft our AIDS definition to include all viruses that cause immune deficiencies, or 4) all of the above.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Please express your concerns to your senator and congressmen, regarding the lack of research and funding on "HIV-Negative AIDS cases". I would also submit that, while you are writing your senator requesting a “Reevaluation of AIDS”, you inquire as to how they are planning on classifying “Chronic Fatigue Syndrome” in the US’s adaptation of the WHO’s International Classification of Diseases (in its 10th revision). I believe that the answer, which existed long before I entered the scene, is their early acknowledgement of our very deep rooted problems.

Million Dollar Baby

2005-12-13T20:03:00.000-08:00

To build a fighter you must first strip them of everything they thought they once knew...

MAILBAG --> UNITED NATIONS

2005-11-02T20:16:00.000-08:00

I am truly in awe of my life. So, I have to ask: Have you ever gotten a package from the United Nations?Typically when I open my P.O. Box I dig through form-letter responses. Since I have gotten so many non-tactical letters, I have gotten pretty good at predicting the contents of an envelope based on its size, weight, and formality. There are a few rare exceptions, like the very formal letter I received from the White House on March 23, 2004 or like the one I received from The Office of the US Global AIDS Coordinator last fall (Please see "A Few Highlights" post, http://cfsstraighttalk.blogspot.com/2005/07/few-highlights-of-my-plight.html). An average week's mail includes: a letter from the Federal Trade Commission, perhaps one from the FDA or from a CEO or medical officer of a pharmaceutical company (or someone in their communications division writing on their behalf). There are usually a few "return to sender" pieces, from recipient addresses I inadvertently shipped to, who had no forwarding address, or that I simply forgot to stamp. Next, I will usually find a handful of senator/congressman responses telling me that I am not their problem:

"Thank you for contacting me regarding your medical care. I would very much like to be of assistance. In keeping with long-standing tradition, Congressional courtesy requires that each member of Congress be given the opportunity to directly serve the constituents that he or she represents. Therefore, I have forwarded your correspondence to your Senator {Edward Kennedy} or {John Kerry}. Sincerely..."

Blah, blah, blah...Not my problem, Not my problem...shuffle, shuffle, shuffle....

From time to time, I will also receive a personal letter. These are the ones that are the most touching. They are from random people who read about my plight and wanted to take the time to share their story with me, to wish me well, to support my plight, and to comment on their admiration of my strength (or of my courage). These letters are truly profound, especially the ones where someone tells me that I have helped save their life and/or sanity and have inspired them to find their inner strength to fight on. As a patient advocate, these are the people who are the reason that I share my story. I know exactly what it is like to live with the hopeless feeling that you are traveling down a long, dark, lonely road.

While I recognize that I made the conscience decision to take on many of the complexities that are now my-so-called-life (Please read "On Becoming an Activist" post, http://cfsstraighttalk.blogspot.com/2005/07/on-becoming-activist.html), I am extremely blessed to have family/friends to help me carry the emotional burden of dealing with my unpredictable future. I also know the sense of relief, however, that comes from finding peers, who are dealing with the same problems and frustrations.

It started as a simple yellow postcard in my P.O. box which read: "Please See Postmaster". I wish that I had saved it, so I could add it to my memoirs. What might the postcard represent, I wondered. Who would be sending me something that does not fit in my P.O. box? I had a fleeting thought along with a vision that the CDC boxed-up a few thousand dollars and mailed it to me, so that I could hire my own scientists. I quickly concluded that that would be way too simple and logical to be true. My Utopian vision faded, as I snapped back to reality.

Still perplexed, I walked over to The Postmaster. We exchanged pleasantries, as I handed him my postcard. He left for a few moments, only to return with a large brown-papered package.

The outside of the package looked very official. The United Nations' insignia in the upper left corner, which if you have never seen it, is two olive leaves (I think) encapsulating a circular, bird's-eyed-view, of the globe. I am not sure that I am doing the symbol justice, but you can take a look here: (http://unrisd.org/). My address was hand-written, so I knew right away it is not a standard 'form letter', as I have gotten pretty good at analyzing mail. This package, however, was a sizable heavy-duty package with "CH-1211 Geneve 10" in the upper right hand corner, depicting its prepayment status.

I pondered: Does the United Nations have to pay for postage? I honestly do not know.The return address was listed first in French and then again in English: "Institut De Recherche Des Nations Unies Pour Le Developpement Social", and then "United Nations Research Institute for Social Development".

I quickly concluded, a package.........from Geneve.....Switzerland!......Wow!

A memo inside (first in French and then again in English): "Avec les compliments de l'Institute de Recherche des Nations Unites pour le Developpement Social" and then "With the compliments of the United Nations Research Institute".

It has become glaringly apparent to me that the bureaucrats and the medical/scientific community are well aware of the big, big problem we are sitting on with HIV-NEGATIVE AIDS cases --- documented in medical journals all over the world (dating back to 1992). I wonder when, exactly, someone plans on informing/educating the public....because I am pretty certain that being a chronically ill, idiopathic, immunosuppressed patient is not supposed to be this difficult.

I wanted to share my noteworthy event with you, because I certainly don't get to experience the receipt of a package from the United Nations every day.

As for the contents of the package, I will save that for another day....My life really does fascinate me.

Bittersweet.

Sex, Politics, & Religion

2005-10-04T18:50:00.000-07:00

Why is it that we tiptoe around so many of the important subjects, all of which have been the epicenter of my universe: sex, politics, and religion? My days are filled with endless questions and yet nobody seems to be willing to provide me with any answers. It's no wonder I needed to learn how to meditate at the local Buddhist meditation center because I spend my days in everlasting ponder.

One of the doctors at the viral epidemiology branch at the National Institute of Health/National Cancer Institute recently advised me to "Keep The Faith". I came to him with questions about an undiagnosed acquired immune deficiency-- idiopathic CD8 lymphocytopenia -- spreading unleashed in the world's population and his words of advice to me were: "KEEP THE FAITH".

Such simple words that I have continued to reflect on. What did he mean? I still wonder....

- Did he mean faith in a flawed health care system that nearly pushed me over the edge before I had the chance to share my story with you?

- Did he mean faith in my doctors, who only recently learned how to listen to me, who have no idea how to care for or to treat me? - Did he mean faith in my government, who shuffle my letters around, who showed up two weeks too late to millions drowning/homeless in the Gulf Coast, while fighting a very questionable war in Iraq?

- Did he mean faith in the "HIV/AIDS establishment", an entity that has spent billions of dollars of our tax money on a disease paradigm that may be wrong?

- Did he mean faith in the pharmaceutical companies, who get rich pumping toxic medications into HIV/AIDS patients (who may or may not even be sick)?

- Did he mean faith in the state public health department, who I have reported myself to on multiple occasions, who have yet to assist me or to formally acknowledge my request for an investigation, which was transferred to them from The White House, on May 12, 2004?

- Did he mean faith in my fellow citizens, the majority of whom have not been told there is a disorder called HIV-Negative AIDS and/or that many scientists still question whether HIV is actually the cause of AIDS at all?

I recently read a quote by William Newton Clarke, which read: "Faith is the daring of the soul to go farther than it can see". Maybe that doctor meant "Keep The Faith" in a higher-power? Did he mean Keep The Faith in God?

I pledge allegiance to the flag

of the United States of America

And to the Republic for which it stands

one nation

under G.O....

That doctor definitely could not have meant "G-O-D", because certainly going any further would make any such statement a religious statement--even a prayer! You can't say "God bless you" anymore when someone sneezes because you never know how someone might misconstrue the courtesy. Why not just take the word "Christ" right out of "Christmas" by simply calling it "Merry X-mas"? I understand and respect that not everybody believes in God and/or Christianity, but how can you take "Christ" out of "Christmas"? He is the whole foundation of the holiday, the day intended to commemorate the birth of Christ. Why can't we talk openly about such important topics? Why can't we learn from one another's perspectives, through practice and application of our various belief systems? Why not, in our time here, try to understand and to educate one another so that we can learn from one another without judgment?

Maybe that doctor just meant keeping the faith within myself, because it appears to me that as a society we just can not talk about certain subjects anymore. Some topics have just become way too controversial --- and, well, better to dodge them altogether (hoping they will go away) than to stir the controversial pot...

I am pretty pious, as far as my spiritual belief system goes. I am keeping my faith, as blind as it may be. But, as pragmatic as I am, I can not think of a time when FAITH systemically diagnosed anybody. Apparently, the concept of early intervention is no longer a phenomenon to which we, as a society, subscribe. And, somehow I can not wrap my head around waiting until a million (if there aren't that many already) HIV-Negative AIDS patients present themselves before someone responds to the problem.

Humanitarian Seeks Assistance

2005-08-24T22:24:00.000-07:00

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.

Inititally, I was definitely fighting for myself, but I have come to humbly accept that my plight transcended me a long, long, time ago. I am no longer fighting for my life. I am now fighting for yours.We live in an amazing democratic society where every voice counts. If you are moved by the content that you are about to read, please write a letter to your representatives, on behalf of my cause.

I submit that the letter read something like: "I support funding and research on HIV-Negative AIDS cases".

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

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

http://www.whitehouse.gov/contact/

Bittersweet.

The Serenity Prayer

2005-08-19T19:28:00.000-07:00

God grant me the:

Serenity to accept the things I can not change;

Courage to change the things I can; and

Wisdom to know the difference.

143 Lighthouse Way

2005-08-14T18:44:00.000-07:00

Your light lead me through the darkest. Now, with the brightest of our stars finally shining, destiny is all that I see.

On Becoming An Activist

2005-07-25T08:20:00.000-07:00

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 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 was always coaching for the community 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.

Throughout my college years, community service was promoted throughout the curriculum. I visited homeless shelters, hosted food drives, collected clothing, etc. When I entered my professional years, 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 food at the food bank or landscaping at the local zoo).

In my post-graduate years, I also found a volunteer organization that made me aware of numerous Boston-based non-profit organizations, 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 at soup kitchens. 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 help raise money, all for great causes. 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 A.I.D.S. community. Shockingly I was turned away. Apparently having an undiagnosed (a)cquired (i)mmune (d)eficiency is not sufficient enough for the A.I.D.S. 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 services. 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 become a client of the A.I.D.S. community? Hello? I am the one with the acquired immune deficiency syndrome here, people. Pardon my not understanding the inequalities of it all, but don't you think that the funding and services should be going to sick people like me? {Please review my "Let's Redefine AIDS" post, 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 for me. 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 three brothers, and then to have a very successful career in the financial services industry, without possessing 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." But, for the first time in my life, I had to admit to myself that I was 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 community center. I figured if I wasn't good enough to be a member of their very-exclusive group (i.e., possessing an HIV+ diagnosis), perhaps 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 figured I could learn about other people's strife with AIDS, their worries and their fears. I thought I could learn from their perspectives, their inspirations, and their courage.

When I would look across the room of (often 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 and worn-out, heartfelt volunteer (who is immune deficient, might I add) 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 their time 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 other people at their community center (even though they all seem perfectly healthy to me). As for me, I created my own forum (albeit a web haven) for those, who battle my same AIDS-like illness, so people can read about the choices that I have made throughout my journey. I know it's a small step, 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 -- THAT I CARE.}

It made me sad. It made me jealous. Disappointedly, I coined my new spectrum of feelings: disease envy. Lupus. Jealous. Lyme Disease. Jealous. Diabetes. Jealous. I always considered AIDS to be one of the worst things imaginable. I quickly concluded that being undetectable is a 1,000,000 times 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 unpathogen. 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 pictures to one another. 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 without naming it a silly, belittling name. I remain touched by anyone who opens their life to me. It is truly amazing to hear all the stories. 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 states in their mission statement 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 statement 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, specifically, 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 and respond to 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 will 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 disease and just treat me like the same ol' me I have always been. 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.

Some days, I really wish I could just obliviously accept my CFS/CFIDS diagnosis. I would still be equally as sick and equally as tired, but at least I wouldn't feel like I had the weight of the world on my shoulders. Why hasn't anybody heard about HIV-Negative AIDS (i.e., idiopathic CD4+ T-lymphocytopenia (ICL) --> a mysterious AIDS-like disorder with citations in medical journals dating back to 1992? Why did I need to lock myself in the Boston Public Library researching for months before I discovered it? Why not, at the very least, tell the medical/public health community that there is an undiagnosed viral illness spreading, unleashed, so that they do not treat their patients like they are insane (perpetuating the problem)?

Did you know that only ~800 people died of SARS and that was all over the news? Why do a million people have to drop dead of 'a slow disease' before we start talking about it?

I can't say that I ever 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 --> a holistic approach towards giving. And while you may never care about me (or my plight), I care and I intend to lead through example.

I can only hope that I can continue to share with you my untold story, which I can only speculate is too scary to put on the 5 o'clock news. What horrifies me is that we are not talking about it.

"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 earth 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.

My2cents: Cause vs. Effect

2005-07-15T22:00:00.000-07:00

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 disease from spreading (i.e., trying to save the world). Originally, I thought they were one in the same, but I have come to conclude that they really are two very different things. One is cause and the other effect.

For quite 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 I am sure will make a good 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 diseases 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 meds 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-naive 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 my two cents: 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 at 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 about 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 effin 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).

LET'S REDEFINE AIDS

2005-07-14T22:00:00.000-07:00

How is it that you reach a point in your life when you realize that everything you have been told about HIV/AIDS 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 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.

Lifecycle of a new disease. Please write Congress!

2005-07-12T10:09:00.000-07:00

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, please return to Step 6.}

CALL TO ACTION: If you believe in undiagnosed infectious diseases (of any sort) and you are getting NOWHERE 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 and senators here:

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

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

Also, if you live outside the US, I am sure writing the White House couldn't hurt either

(http://www.whitehouse.gov/contact).

Personally, I don't care what country ultimately manufactures a test to systemically diagnosis me.

A few highlights of my plight

2005-07-11T22:00:00.000-07:00

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 US bodies contact us regarding these issues, then of course we will seriously consider a serious response on a population basis"

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 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 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."

US Senator, John Kerry {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."

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

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 US 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.

Dear Congressman

2005-07-10T23:34:00.000-07:00

Dear Congressman,

I have a severe immune deficiency -- idiopathic CD8 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 HIV-Negative 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.

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 official diagnosis: “Viral syndrome of unknown etiology"

2005-07-09T19:49:00.000-07:00

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.

Frequently Asked Questions

2005-02-05T08:33:00.000-08:00

How are you?

Surprisingly well considering the circumstances. Both mentally and physically, I have good days and bad days. The fatigue is debilitating, but I keep myself moving....even if I am dragging all day long. Thankfully, all my family and friends are very forgiving and have adapted to my limitations. I just don't have the time or energy anymore. 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 sides of my illness is that no one can see the destruction of my immune system. I may not look sick to you on the exterior, but I feel it. If you knew me two years ago, you know that 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 can not get my contact lenses in because my eyes are so scratchy. Both my metabolism and diet have been 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 me. I have regained about 10lbs, so I look much healthier now. I think a lot of people forget how sick I am because physically I look okay on the exterior. Some people will stop and sometimes ask me if I am better now. Unfortunately, however, I still feel equally as chronically ill. I could go on for hours about all the fluky things that my body now does.

How do you feel?

Physically: Like I have been run over by 1,000 MAC trucks and one decided to park itself on my lungs. Mentally: Like most adrenaline junkies, I am fueled by the challenge and I am 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://stragihttalkcfs.blogspot.com/2005/07/lifecycle-of-new-disease-please-write.html} Personally, I believe this statement to be grossly untrue, as with resources (a.k.a. money) many things miraculously seem to happen overnight.

It is frustrating to me that the acclaimed diagnostic process takes so long. It's like in grade school when the teacher would give you a problem to figure out and you would finish it before the rest of the class. So, you would just sit around waiting for everybody else to catch up. Some days, I can honestly say that I am bored by it all. If it didn't mean life or death, I wish I could go do something else. Other days, I am wildly excited just to wake-up and see what's going to happen next.

Unfortunately, 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 have never seen a spokesperson or 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? What exactly would you test for (certainly that's what I would like to know)? It's an unfortunate reality that there is only so much money to go around...and there are so many other threats and diseases out there (like malaria, TB and a war in Iraq).

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 (like EBV, CMV, HHV6, HTLV, HSV, VZV, mycoplasmas, and countless others) -- none of which I had heard of before, and all of which I have only recently tested negative for. I have accomplished a lot in the past two years, but I believe I would be a whole year ahead if my ignorant doctors had not slowed me down by refusing to perform tests on me (and failing to refer me in to see infectious disease specialists).

I have incurred thousands of dollars worth of out-of-pocket health care expenses because my HMO required a referral, which my primary care physician -- openly and blatantly -- went out-of-his-way to refuse to provide to me. 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. As I mentioned in previous posts, it took me a solid year to learn how to work with a flawed health care system. I have fired countless doctors who thought they were God.

I reported all these self-proclaimed deities to the Commonwealth of Massachusetts - 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. But, I don't know why I should have been surprised, when nobody at the Board of Registration in Medicine seemed to care about the "Patient neglect/abandonment", "Professional misconduct", and "Rude/discourteous behavior" I endured by the agents they claim to oversee. It truly tortures me that the administrative division overseeing this conduct callously disregarded the compliants with no recourse. Hello? Did you hear anything I have said? It's totally absurdity. Why bother to have a compliant form, if you did not 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 that you just don't care.

Any doctor who tells their patient that "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?

My outlook is optimistic, but realistic. If the last two years are indicative of the next two, I would have to say 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 anyhow. So, what difference does it make? Like most viral infections, my doctors will continue to treat only my secondary AIDS-like opportunistic infections.

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

In the big picture, my undiagnosed disease is not my problem. So, I am pretty content with the fact that I may never be systemically diagnosed.

So, I think the more important 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 was not 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. 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 can not 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 in between.

It is your life and nobody will fight for you, unless you fight for yourself.

What are your CD4s? What are your symptoms?

I do not like posting a lot of statistics on websites, for privacy reasons. Although my CD4s are low normal, my primary problem has always been my lack of CD8s. I have an acquired CD8 deficiency -- idiopathic CD8 lymphocytopenia. I am a big walking symptomatic mess. Pick a body part, any body part, there is something objectively wrong with all of it. I have read about HIV strains that target CD8s, rather than CD4s. I have also read about new strains of HHV6 that target CD8s as well. Regardless of the disease-specific literature, I have read about ICL cases in downtown Boston -- all with no CD8s and severe deadly opportunistic infections. They were journaled: idiopathic CD4+ T-lymphocytopenia (Non-HIV AIDS).

What are the symptoms of others in your cluster?

Although I have spoken with the others, I am not at liberty to discuss their medical ailments. Regardless, my body and blood speak for themselves, and the sequence of events has been laid out in great detail, in the form of a case study, for many immunologists and virologists.

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

I keep living my life as normally as I can. I sleep 12-14 hours per night. Everything I do is related to my health. I attend yoga and meditation classes regularly. I go to acupuncture and massage therapy sessions. I started seeing an herbalist and began exploring a variety of Eastern remedies. It saddens me that I can not perform at my 'normal' level. I try not to over-exert myself. I can no longer do a lot of physical excursion (like sorting food at the food bank). It has been sad to give up the things I once loved to do. But, as the saying goes: When one door closes, another one opens.

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

From what I have discovered, no clinical doctor will put a patient on a medication for a disease that a test can not systemically detect. They would be treating me blindly. I would need to be in a medical research program, if I wanted to pursue these types of therapies. I would need to sign waivers, so scientists could start treating me like a guinea pig.

I am not convinced that I would want to be on antiretrovirals, anyhow. There is no evidence that those meds actually help patients anyhow. There is equally as much evidence that they are toxic and would probably expedite my demise. Generally speaking, all meditations are potent and cause severe side effects, often worsening symptomatology.

The last thing I need -- with an immune deficiency -- is more symptoms. Patients would to be foolish to just allow toxic meditations into their body without researching the benefits first, and, especially as it relates to AIDS INC., first questioning who makes the profit.

The CDC also cautioned me that opting into experimental treatments (even if they made me feel better) would alter the composition of my med-naïve blood. They asked me, that if I opted to go this route, that I would call them so that they could been able to store some of it 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 and continue with my holistic approach towards wellness.

Is HIV the cause of AIDS?

I honestly do not know. I have learned that the HIV/AIDS connection is not as black & white as city bus campaigns may have you believe. Apparently, the medical establishment can not agree either and there are vicious debates over the subject matter. It took several trips to the library and bookstores, but the literature is all right there. What I find rather odd, however, is that nobody seems to be mentioning anything to the public. At what point, is the omission of the truth the same as a lie?

Here's a quick test: Stand me, a sick HIV-Negative acquired immunosuppressed patient side-by-side with a healthy long-term HIV+ person.

What do you think? Is HIV the cause of AIDS?

You have to be a little skeptical...

At this point, I believe that HIV is probably only one of many pathogens that cause AIDS-like illnesses (please review my "Let's Redefine AIDS" post, http://straighttalkcfs.blogspot.com/2005/07/lets-redefine-aids.html). However, there seems to be a lot more focus, on a more recently discovered pathogen, HHV6 (a) & (b). Many scientists and researchers believe it plays an active role in AIDS, CFS, Myalgic Encephalomyelitis (ME), Fibromyalgia (FMS), and Gulf War Syndrome (GWS), to name a few. I have tested negative for HHV6. I have been told that this testing has its limitations and that like most viruses, new mutations/strains present themselves.

Ultimately, it will only be a scientist that can answer that question for you.

Why not ask your senator? (www.senate.gov)

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 illness and stealth virus out there. I do not believe all CFIDS patients have the same undiagnosed illness. I believe CFS/CFIDS is the default category for everyone the medical community can not figure out. I do not believe I am a CFS/CFIDS patient. I am a HIV-Negative AIDS patient. Statistically speaking, I know that my undiagnosed illness is not rare. So, I do believe that other patients (like me) are probably, unknowingly, in the CFS/CFIDS category.

What if you are wrong?

Wrong about what? I have a viral syndrome of unknown etiology (my official clinical diagnosis). Viruses by nature must be acquired from somewhere. I have an immune deficiency. I have an undiagnosed acquired immune deficiency. I have idiopathic CD8 lymphocytopenia (my official clinical diagnosis). 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. ICL cases have been recognized since 1992. ICL was already a reportable disease, and it was only a matter of time until someone like me (smart, driven, nothing to lose/everything to gain, and willing to talk about it) entered the scene.

I made a mindful decision two+ years ago, when I put my entire life, reputation and livelihood on the line, because I know how sick I am and I know exactly when it all began. My entire life is based on fact, logic, sequence and order. I do not gamble and I have never doubted myself for a minute (although my ex-doctors tried to entice me, which still irks me). Also, no one (not even my doctors) knows my medical files better than me.

Unlike my EX-doctors, my present day physicians can not dispute that there is something seriously wrong with my body (that they can not diagnosis). You can not dispute blood. Sadly, with every passing day, my medical files become more and more concrete. I never needed validation for what I was saying, but the letters and stories I see from all over the world have only solidified my greatest fears.

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, they advised me to take it to the press: "Take it to the Press. Be a whistleblower. Religions get formed and movies get made". It is exactly what I did / intend to do.

Hypothetically speaking, even if I were wrong, I will have fought for what I believed in, if I only become fact (and a medical journal citation) on the day I die. I believe that everyone should be so passionate about a cause that they are willing to die for it. I urge every body to find their cause and embrace it.

Tell us about the Making Lemonade Foundation.

Making Lemonade Foundation is a charitable gift fund, donor-advised fund program. Contributions to The Fund are irrevocable and are immediately tax deductible to the fullest extent allowed by law. Contributions can be made at any time while my grant recommendations to nonprofit organizations may be made on a seperate timetable to support my charitable mission. Actually, I am not seeking funds nor do I spend any time raising monies. I actually believe that all funding for HIV/AIDS should be: 1) halted, so that we can assess the severity of our situation, 2) redirected into a reevalutation budget and/or 3) redirected into CFS research. Rather, I am currently seeking your voice. Please write to your senator requesting a REAPPRAISAL OF AIDS / HIV NEGATIVE AIDS cases:(http://www.senate.gov/general/contact_information/senators_cfm.cfm)

Do you have any role models?

Many. I will start with my parents: My dad - who has always taught me to follow my heart, to trust my instincts, and to not care what other people think about my convictions. My mother - for her immeasurable compassion and altruistic spirit. 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?

Generally speaking, I appreciate the opportunity to help educate others with what I have learned over the past two years. I definitely don't mind answering questions about my health and/or my plight, but sometimes it can be difficult because sometimes people don't appreciate how much effort it takes me to put my head in-the-zone. Yes, 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 have truly surpassed my wildest dreams. I am often in awe that this is my life. It is believable in an unbelievable sort of way. I often do not know whether to be fascinated or horrified by it all.

When you accept your mortality, it is truly amazing how you start to appreciate what is really important in your life -- reevaluating all your priorities. A lot of things that used to bother me just don't anymore (like my electrician showing up an hour late because of a flat tire or waiting in line at the grocery store). My pace is much slower. I started to appreciate the smaller things in life, like the smell of my body wash, the vivid color of the rose blossoms at my doorstep and the aroma of my favorite tea. I love spending time with my family and friends just hanging out. I just love seeing kids smile with pure innocence. It reminds me of a time when life was just so simple and carefree.

It's so cliché, but it's all so true.

What next?

I still have big plans. So, stay tuned. Until then, I hope you will join in my small, but growing, parade. In the meantime, please write a letter to your representatives asking for funding. I propose that I letter reads: "I support research on HIV-Negative AIDS cases".

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

http://www.house.gov/house/MemberWWW.shtml http://www.whitehouse.gov/contact/

Bittersweet.