When did you become HIV positive?
I have written a good deal about Hiv testing and the people given the diagnosis. I have written from a critical perspective on the tests and drugs used, and have found some significant causes for concern in the field. I think what is most troubling to me is the absolutely final nature of the diagnosis itself. I find it to be terribly shocking, and I think, terribly unfair.
What I would like is to hear your stories, if you’re willing to share them, as I try to better understand the phenomenon of testing positive, and how it affects the people who are given this diagnosis.
I know it is a sensitive and trying subject. I will not permit any criticism or negative comments to be directed at people sharing their stories, whatever their beliefs about Aids or Hiv may be. Please share your story in as much, or little detail as you feel comfortable doing. You can use an alias, and please don’t give any full names of people you reference in your story – a first name and initial is fine.
But please do share how it affected you. I think this is something that people don’t understand well enough, or hear enough about. Getting this diagnosis can be shocking, devastating, and life-altering. I would like to create a better public awareness of how it affects individuals.
Some questions that I’d like to ask are,
- What questions did they ask you when you tested? Where did you test? A hospital, pregnancy clinic, STD clinic, Planned Parenthood, through the mail?
- Who told you? How did they tell you? What did you hear them say? What did you feel, think, say, do?
- Who did you tell? Who didn’t you tell? What were your thoughts and fears?
- How has it affected you since, and what do you think about the diagnosis today?
You can post your thoughts or story below. Thank you for your time and effort.
- Liam
Radio: Join me on "The Robert Scott Bell Show" Mon-Fri 12-2
I´m Spanish, 43 years old.
I was first tested in 1990 in London when I was 25 years old. I wanted to donate blood so I went through a Red Cross caravan placed by the Thames. Before they took my blood they asked me:
- Have you had sex with Africans?
- Have you injected heroin to yourself?
- How many sexual partners?
. 0 to 10
. 10 – 20
. 20 to … ?
I say yes to everything and, by the time, I wasn´t a sexual puritan… I also was married with a north African.
After a month I received a letter: there was something odd with my blood and a urgent visit to a certain place was required. They offered me an ambulance in case I needed. The last offering was the most terrific. I went to a place in London, I don´t remember the location but it wasn´t an hospital, just a smart building surrounded by a nice garden. I went into. A woman doctor received me in a big, elegant and carpeted desk. I sat down in front of a big table. She was in the other side, behind her, a big window with a wonderful view of old trees. It was raining. The table was empty, only a kleenex box.
- “You are seropositive. We have to make you another test to ensure but sure you are. How do you feel, any sikness at the moment?”
- No, I feel healthy…
She pushed the kleenex box towards me. I couldn´t cry, I didn´t want to cry in front of her. She driven me to another room where a young nurse was waiting with a syringe in his hands, ready to make me another test. I wanted to have some chat but I only could say: the worst plague… The nurse doesn´t answered me, he did is work in silence.
After some days they phoned me again and asked to go to the same desk. The same doctor told me:
- “The confirmation test was positive also. You have to know the following: from 5 to 8 years of live left; forget love and having children. Don´t drink to don´t transmit the sickness in case your loose your conscience (I didn´t drink alcohol by the time).
I remember the most shocking announcement was to forget love: I was only 25! I thought: 5 to 8 years without love! Who would hold me in my death bed? Nobody!
Since that moment, my live went into a nightmare which it last about 15 years. I went into AZT and Bactrim for several months in 1991 once I come back to my country. I gave up with it some months later because the drug makes me feel really sick (the CD4 were more low than ever and I also got anemia), I was really sick for first time in my live. My boyfriend of that time, he was in prision for some period, told me that prisoners used to through out the drug into the loo because they could see how people died a few weeks after starting with AZT. For this reason, all the loos in Spanish prisons were clogged with the drug boxes. AZT was given first to prisioners than in the street. A lot of people of my surroundings died soon after starting with AZT so I thought: “well, why to take this drug that makes me feel so bad if I am going to die anyway”.
So I stopped with it in despite of the fear doctors put on me. A lot of people in my area, my neighborhood, Madrid, died that year, 1991. I am talking of about 50/60 people. Some years before, heroin was introduced in our lives. No much people were really junkies, a lot of us we tried it because curiosity and because fashion, we listened “Heroin” of Patti Smith. Was something almost romantic. But most of us were dying a few years later… The real junkies are still alive because they didn´t take AZT.
I stopped with AZT but I took Bactrim for almost four years after that, together with my partner, the one who was in prison, Enrique. He was seropositive also.
We went to live to the countryside, trying to get the better life until death. He died of brain necrosis in 1996, probably due to Bactrim, a potent immunosuppressive made for organs transplanted people. They gave it to us in order to prevent pneumonia, they say so…
After Enrique´s death, I went into heroin because no hope at all. No antiretrovirals drugs at the moment. In the end of 1996 I went to hospital due to an esophagic candidiasis probably caused by using Metadona (in despite of all I didn´t want to be inside heroin). At Hospital they told me that I have only 1 CD4 and even when all the others parameters were ok, they told me about a new treatment which is was going ok with people, stopping AIDS progression. I was so tired that I mechanically said yes to the new thing.
Then, started another stage in my life, the part of side effects, hospitals, studies, painful testings and interventions… that last since 1996 to 2004. By this time I really want to live not because another reason than instinct. my life wasn´t beautiful at all. For instance, doctors diagnosed me a precancer in uterus neck due to papiloma virus. They urged me to be intervented and to take off this part of my body. I said yes, pressed by my family and doctors whom told me no to hesitate in doing it and no thinking about children because what a live I could give to a baby due my condition. I agreed. I was 33.
When I was 39 in 2004, I went into a studio of a new drug, Tenofovir, manufactured by Gilead Sciences. They told me about all advantages of the study but soon after starting the study I felt I wanted to commit suicide for first time in my life and I associated it to the drug. I also could not stand up from bed, lost a lot of weight when I was already quite thin due to ARVs. I went to the doctor, she told me I have a depression and led me to psychiatrist who gave a massive dose of valium. (they know about my suicidal drives!) About the thinness, she told me that is a mere aesthetic problem… Something didn’t fit at all so I opened Internet and found out that the same study was closed in France due a suicidal tendencies caused by the new drug.
I continued looking for and I found that Gilead Sciences belongs to Donald Rumsfeld among others. We were in fully Iraq War so I didn’t want to give any gram of me to such person. Following after, in the same afternoon, I met Duesberg in the net. I shout out. My cat looked at me with fear. I stopped with meds and drugs at the same day. I started living with 40. The only health problems I carry are due to many years of poisoning, anguish and sadness. Only one year before giving up with ARVs, doctors urged a new surgery because another vaginal cancer. They give me 2 years of live. After stopping meds, papiloma virus is gone! Who will pay for all this horrible genocide and torture?
[Reply]
My story begins in 1988. After traveling across Europe and the US, I decided to settle in the UK. I was young then, emerging from my romantic period – experimenting with drugs and my own sexuality. Having said that I never used Heroin. Some pot, a couple of times LSD. Was I promiscous? Not really – I had perhaps 10 sexual encounters during that time.
I was looking forward to studying again, after traveling that much I felt it was time to to build a career and future. Then a former lover of mine told me he tested positive. So I got tested s well – and was positive too.
The doctor at the Kobler Centre in London was nice, and I was told that I have about 5 years of life left. I don’t really remember the following six month. I have no idea how I really survived that period of my life. I became severely depressed. I was only 24 then.
I felt quite healthy, was getting ready to study again, and was given this devastating death sentence. A career, a family, all gone. Why study at all? The message was ‘just get ready to die’.
I always trusted my body more than doctors. Eventually my body and my soul showed me that both simply did not agree with any this ‘death sentence’.
Increasingly I suffered from panic attacks. And one night I woke up panicking. It all became too much. I remember making it to the living room and then collapsed. It was frightening but when I came to, I felt I had had some sort of spiritual experience.
My life changed drastically from then on. I began seeing a therapist to help me deal with the depression. Enrolled to study and nevertheless began building a career.
For a number of years I followed the advice of my “Aids doctors” at the Kobler centre. At first they put me on trials such as the Concorde trial. The treatment did not agree with, so I stopped taking the pills on advice of my social worker.
I saw many die or become very sick on AZT and later on drug cocktails. But many others did what I did as well – not take the drugs. They survived.
Eventually I realised that I wasn’t getting ill. My doctors told me that’s because i had a special ‘gene’. But I began questioning their position.
By that time I had completed my studies and was working full time. I even had married to some one who knew about my status. A mistake I will never make again.
Her family and my wife were constantly worried about me becoming sick and dying. The fact was then that she was more sick than I was was. Like most people I get the flu for a couple of days each year. Who doesn’t. But if I get the flu – every one was just waiting for me to die.
That was when I came across Peter Duesberg’s research and Christine Maggiore’s story. And I asked my doctors about it. And they could not provide any answers. In fact they got frequently angry about being questioned.
Around 2000 I stopped visiting the Kobler Centre. I was divorced then, working full time and in good health.
I am fully convinced that HIV is not causing AIDS. I ams till here, living proof. And if I had listened to anything my doctors told me, I would surely be dead by now.
So many doctors and nurses and health care professionals and scientists and journalists depend on this myth of HIV for an income, it is almost impossible to escape from all of this.
This whole system has no justification for existence unless you are part of it – so they try their best to go to their clinics, take their drugs and listen to their ‘good’ advice.
But all they do is prepare you to die. They do not provide you with any perspective or future. They tell you that you have a deadly virus and that you will die.
And many, once they are part of that system and not strong enough to escape, will become sick because of it.
I got lucky in so far that I had the strength to get out of there. Many others didn’t. They are the real victims of AIDS.
[Reply]
I am very recently diagnosed with hiv. I caught the virus on July 25th ’08, after being drugged at a bar and further, now realizing, being used as a sex toy while I was not conscious. It very hard for me to accept this. I am only 25, and currently in graduate school in the States. I have yet to commence antivirals, and to be honest debating whether I am even willing to live now that this has happened. I consider myself a very well versed, attractive individual, intelligent individual and have serious problems coming to terms with the fact that I contracted this horrible horrible virus. I do not sleep around. And anyone I would sleep with a condom would be to utmost importance, even in a relationship. I figured out that I had contracted the virus by evaluating my symptoms 2 weeks after the encounter. Very obviously something was wrong, I was still in denial. I went to an STD clinic 1 month after I had contracted the virus, my results were negative, again 2 months after the incident, my results again were negative. I was hopeful now that I had hopefully not actually contracted the virus — maybe another STD or something else. Although at the three month point, I went back — and antibody test was positive.
They asked me if I was suicidal, I said no. I immediately went online to look at the prognosis information about the condition, claiming I would live on average to 69, made me feel better. Although after reading more into viral effects on the body, I realized my daily life would be forever changed. The medication side effects, that are AWFUL, hiv dementia that is AWFUL, effects on my physical body (which was wonderful — I am inherently vain), well vain enough to want to die looking like a hiv patient walking down the street with a buffalo hump, protruding belly and completely loss of weight in all my extremeties — the thought makes me throw up. Suicide really seems like an appropriate answer for me. Although I worry about its effects on my family, and friends. I wonder why God allowed this to happen. I understand I’m going off topic but its really harsh to bear, especially since I would NEVER perform acts that would put in at risk for this disease.
[Reply]
My name is Alexandra. I am Greek living in Athens. I am 38 years old.
At the age of 22 I was graduating from university and I was in the perfect relationship with a very charming and powerful man. Our life was bold and beautiful.
I belonged in the higher social class and I was enjoying power and health like I was born only for this. I was lucky having no problems and no problems seem to touch me.
The next year I moved to the same house with my companion, the year after I built the house of my dreams.
After 4 years of relationship I gave birth to my beloved son, a son that I wanted and my companion even more.
My son got sick at the age of 3 months like it happens to many babies. He was in many antibiotics but he was not responding. We took him in the hospital. After 3 months of tests the manager of the hospital announced us that our son had aids. We did the same tests to prove to the doctors that they were doing a big mistake. The next day we were all diagnosed hiv positive. They told us that we had a few years more to go.
My whole world was in ruins and nothing had prepared me for this. The disaster came carrying sorrow at the place of happiness.
I felt fully responsible for the miserable life I had given to my son. Instead of giving him the life I had given him the death. I could not think of my life without my son and my son without me next to him. My only wish was him to live.
My son had died after 2 years taking drugs.
For one year I was struggling for his survival.At the end, I had to face the meaningless of my effort to keep him in a life that had lost any kind of decency. When I realized his end I felt betrayed.
I left my companion since I had the need to leave behind me whatever hurt me. Our relationship was lost from the moment we reacted so differently at our son and the disease. Instead of coming closer we got alienated.
I might have not reacted the way I should but nothing had prepared me for so much grief. The only thing I wanted was to fly away from the disease, the sorrow, the disappointment and the death.
At that time I did not know that I would carry all these wherever I go. If I knew that, I would probably reestablish my relationship with the man I loved more than anyone else.
I never held him responsible for being hiv positive. There was no point. We both got in the relationship without getting any precautions and without anyone knowing that he was hiv +. So nobody holds the responsibility.
After the death of my son, I surpassed the “why to me” and the anger that accompanied that question. I left behind me the sadness and the fugitive impulse that was leading me away from reality. I realized who I was and I abandoned borrowed and short – term roles. The timid in the beginning isolation was the external manifestation of a slow and progressive development of a strong self-esteem.
In the last 12 years I met some interesting men. I did 3 beautiful relationships. The 3 out of the 4 men accepted the fact that I am hiv+. 2 of them made me a marriage proposal.
Although there are very few possibilities a man to get the virus from a woman (except of 2 very specific ways), I always made love in a very responsible way.
I neither wanted to feel responsible for another person since I already felt for my own son nor to attract any other virus since I was the one with the sensitive immune system.
I am hiv positive for 16 years. I never got sick and I never felt sick. I never considered myself hiv positive and as a result the others do the same, although I was treated sometimes with prejudice… I was taking meds for more than 10 years with the only side effects the chnage of my body shape due to lipodystrofia and feeling sick.
For more than a year I am out of drugs feeling better than ever!
My friend’s and my family’s behavior did not change at all and this helped me believing that nothing changed in my life either. Initially they were angry with my bad luck but later their worries diminished as they were watching me coping with me wounds.
The cycle closed. The confrontation with my history and my self came to an end. I accepted both of them. I even loved both of them.
I unfolded my story asking for reconciliation, not pity.
There was a moment of a brilliant shine when I realized how weak I was to keep lifting all alone the unbearable weight of my past. Trying to face the truth I obliged myself to relive its past like the refugees are struggling to preserve their mother language in order not to forget the homeland that they will never see again.
I wish everything was different but if it were, I would not be the person that I am today.
Everything I did, everything that happened contributed to my present evolution or in order to be more accurate to my transformation. Even the actions that I would not repeat or attitudes that I left behind shaped me drastically to make what I am.
And if I testify in front of you my story is not in an effort to justify it but for all of us to get acquainted with it.
Living with HIV is my biggest experience and my deepest truth. I can’t recreate my life the way I would have liked it to be. Life unfortunately is not a book.
I had the strong impulse to share with you such a story from a safe distance, a distance that is imperative for the most of you but very painful for all of us.
I hope that other people will face their truth through mine and be accepted by themselves as well as by others.
Let’s not forget that by recognizing our truth and our freedom in the truth and in the freedom of others we liberate our humanity.
As you can understand so far, at the age of 25 I had everything.
I was successful as very few.
I was ignorant as many others.
Very soon, I either left or lost almost everything.
I did not fight with the monster of my life, I teased it.
I convinced it and all the others that it would not gain.
And the truth is that hiv did not get me.
I left forever the fear and the ignorance.
I gained a new life full of joy, consciousness and intuition.
I enjoy this gift reborn from my ashes.
The monster that would win does not concern you, but what it might concern you is the struggle against what looks bigger and stronger than us.
But who measures the dimensions of it?
The ignorance, the insecurity, the fear. We deserve nothing of these.
The reason I published my autobiography “ It is none of your concern” is to inform the young people and especially the women for something they believe it does not concern them and to use their right to protect themselves.
The sexual liberation was gained from the previous generation. If this generation wants to enjoy the love, it should do it in a responsible way, always using a condom because either the responsible love or hiv will win.
The reason that anybody could be interested in the book is to find the power he/she has to cope with any kind of misery like a separation, a death, a disease, a betrayal of dreams.
Gaining the fight against the monsters of someone’s life he/she wins a self esteem and a new life.
We respect ourselves, we love ourselves when we are the winners in big battles of life.
This is the power I found deep in myself and I gained a better life than ever.
Thank you for interest in a story that does not concern you.
[Reply]
When did I become HIV positive? Well, I got the “news” on January 7, 1988, but I must have been positive long before that as I had NO risk factors (if unprotected sex is a risk factor) for at least 5 years before that. It turns out my biggest risk factors were two experimental public health vaccines. One was the hepatitis-B vaccine given in the late 70′s at the bath houses in NYC, SF, LA and Chicago — the same cities that the first AIDS cases showed up in. The other was a live-attenuated virus vaccine in the double blind studies for the polio vaccine when I was in the fourth grade — in 1954! Both these vaccines were shown to cause a positive test result. That would make me positive for over 54 years!
I was told I had, at most, 2 years to live without early medical intervention. Medical intervention might extend my life an extra year or so, by which time they would have a vaccine or a cure! Haha.
The diagnosis came as a surprise to me, but it didn’t really shake me because I thought I’d found the cure for AIDS, and now that I, myself, was HIV positive, yet hadn’t had as much as a cold in 8 years, I was sure I’d found the cure. In 1980 a good friend turned me on to “rebound exercise,” a vertical, shock-free exercise that pumped the lymphatic system like nothing else on earth, improved circulation of all bodily fluids and built strength at the cellular level. It was promoted as the exercise for the immune system and all the claims made for it appeared to be true. By 1988 I’d introduced several friends who were diagnosed with HIV to this form of immune boosting and all (100%) continued living in good health with no medical intervention. One, who was on the drugs and nearly died from the side effects, recovered after he stopped the meds and started rebounding. In this same period of time I lost over 100 friends to “AIDS.” All of them (100%) had faith in their doctors — may they rest in peace.
Now that I was convinced I had the cure, I tried to go public. I am considered a very effective writer and speaker. Until this time most of the letters I’d written to editors got published. I’ve had letters published in the NY Times, The Daily News, had a half-page in a Manhattan local paper, a page-one article, with photos, in the Manhattan section of the Daily News and even an editorial reply on NBC-TV. For some reason my letters on the subject of curing AIDS did not get the same response. No one was interested — not the Times, not AmFAR, not Elizabeth Taylor, not Oprah, not the Gay Men’s Health Crisis (GMHC), not ACTUP or TAG, not even the White House. I placed an ad on the back page of the Village Voice looking for other people who may have used rebound exercise to “treat” AIDS. (Rebounding had been used successfully in alternative cancer treatments since the sixties.) I didn’t get the response I was seeking, but someone sent me a very interesting report. It was prepared by microbiologists Bill and Claudia Holub and was an evaluation of everything that been published on HIV/AIDS through 1987 with scientific scrutiny. Dr. Holub was a much loved and respected professor at Nassau Community College — until he published this paper. He was fired, blacklisted from the professional community and eventually lost everything, including his home and his life.
The report was fascinating. The Holubs came to a different conclusion. The syndrome was not infectious and not caused by a virus. It was immune suppression for known, understandable and reversible reasons. Unlike all the viral nonsense and death sentences we were getting from the AIDS mainstream, this all made sense.
It was quite by accident that I learned that no one was interested in a cure because of the profit in keeping AIDS incurable. In 1981 I had taken in a homeless busboy/actor to help me with my businesses. I was selling rebounders and a bicycle product I’d discovered overseas. I helped him develop a professional looking resume and an interesting bio. My business collapsed. The American manufacturers of quality rebounders were put out of business by cheap Asian imports that flooded the market. They looked like our units but were vastly inferior in quality, sold without proper education, and resulted in injuries and the end of industry for several years. Fortunately, my friend’s career fared better. By 1983 he was considered a full-fledged star and one of the 40 most influential Hispanics in the US by Hispanic Marketing Magazine. Around 1989, I believe, a friend of ours who was a major party producer in New York approached us to have my friend, who had a large gay, Latino and black following, host the New York segment of what was to be an international telethon for HIV/AIDS. My first question was “Where does the money go?”
“That’s the best part,” he replied. “The money will be divided amongst all the major AIDS organizations.”
“I don’t know if you’re aware of it, but these organizations are the problem,” I told him.
“What do you mean?”
I explained briefly and told him I’d send him some info, if he’d read it. He assured me he would and I prepared several pages of info for him, including a summary of Dr. Holub’s paper, an article from a medical journal, and a one-page article from Penthouse, by Gary Null. I never spoke to him again, but I did listen in on the phone when he phoned my friend a couple of days later after digesting my material.
“I don’t doubt for a minute that what you and Ed are saying is true, but I have to be perfectly honest with you, there’s too much money in this to stop now!”
And that’s what it’s all about. Money. AIDS has become a multi-billion dollar cash cow for some of the sleaziest people ever to walk on the planet, and they’ll do anything they can to keep it going.
Eventually my status, not just as a poz person, but as a dissident cost me my income. For a while I got by by sinking into credit card debt. When that hit the limit, I was facing eviction from my home of 16 years at the time. The stress of that combined with the stress of being a dissident, losing most of my friends, and living in this paradigm with no progress or even hope of progress after several years, I broke out in shingles — a stress-related disease that was considered ARC (AIDS related condition) at the time, and qualified me for benefits to take care of my rent. I used my new found freedom to produce some cable TV programming in NYC, which didn’t change the world, as I had naively hoped, but it did allow thousands of people to change their own lives, and allowed me to meet most of the key players in this AIDS war.
I recovered from the shingles with no medical intervention. It took about a month, but never came back. In fact, I hadn’t had any health challenges until June of this year (2008) when a very strange thing happened. I don’t know if I had a stroke, or what it was, but I was about to cross the street when I suddenly got very dizzy and passed out. I fell straight back and hit my head on the curb. I vaguely remember the ambulance and coming to in the ER. After several hours and about $2000 worth of tests that didn’t find anything, they sent me home. I took a taxi to where I had left my car and then drove home.
A few days later, a day or two before I was to fly to New York, one of my friends said I didn’t seem well and insisted on taking me to the ER. This time they did $20,000 worth of testing before sending me home with the advice to drink more water.
I made my trip to New York, as planned, but to be quite honest, I don’t remember anything after I deplaned. I don’t remember the person who picked me up, or going to my brother’s house or spending four days there. My brother had me admitted to the hospital where I spent the next six weeks but can only remember the last few days before I was transferred to a rehab facility. When I got out of the hospital I was down to 140 lb. and unable to stand or walk unassisted.
After I started regaining my memory and my senses, I learned that I was put on AZT while in the hospital! My brother believes that that is what cured me. I don’t think so. I give more credence to time, rest, my friends bringing me fresh fruit and the many people who were praying for me.
I ended up on meds for about 3 months to appease family and the witch doctors who would point their finger and curse me with a loud “YOU’RE GONNA DIE!” if you don’t take your meds. It was easier to swallow the shit than to deal with the stress. I stopped over a month ago but am still suffering from Atripla flatulence, some muscle loss and weakness, and a layer of belly fat that makes me want to kill myself. (My favorite pastime was going naked on the beach.)
When I finally was discharged from the rehab they had diagnosed me with Creutzfeld-Jacob disease, an incurable, fatal condition (for which there is no diagnostic criteria other than a brain biopsy they didn’t do — thank God) which causes blindness and death within a year — not as good as the 2 year sentence they gave me 20 years ago. I guess when they couldn’t find anything specific they figured it must be that. There was also mention of an embolism and asymptomatic HIV, which makes me wonder why I was put on AIDS meds. They looked and looked and looked, they even performed three spinal taps, but they couldn’t find anything. No infectious disease. No AIDS symptoms.
I’ve been trying to get my records from the hospital for almost three months. They told me they were finally sent out yesterday. If they’re not delivered by Monday, I think I’m going to kill somebody. If I find out I was improperly put on those horrible drugs I intend to sue somebody.
This epidemic has cost me hundreds of friends, the loss of at least two ex-lovers, a step-brother, my best gay friend of 20 years and my sex life. Am I angry? You bet I am!
[Reply]
Can you add to the above, when they offered me early medical intervention, they told me if I couldn’t afford it, not to worry. They could get me into a study! Yeah, right.
[Reply]
I’m Maria, a Greek journalist, 43 years old.
I have told my friends for years, wrote in my first two books, and repeated during interviews for the press and TV, that I first learned of my infection with the ‘HIV’ virus in 1995 and prior to that I could only suspect it. That is not exactly the case. The truth is that my first announcement of death was in 1985 when I was 20 years old. The doctors’ advice was not to speak a word of it to others, for my own good, and I followed their directions. It was costly, especially lying to everyone at home; yet, believing it was necessary, I could only try removing it from my mind as best as possible. “You kept it from me an entire year?” my mother asked me painfully when she finally learned the truth in 1996. I was unable to tell her that “I kept it from you eleven years.”
When I discarded the ‘AIDS’ medication in April 23, 2007, I realized that I was not going to die and that enraged me. Angered for the years of silence, for all that I did unwillingly and for all those ugly things that I could not get rid of even though I was doing perfectly fine now. Revealing the truth was much harder than quitting ‘AIDS’ pills. In my opinion, that is the definition of the so-called plague of the century: lie upon lie, stress upon stress, trap upon trap, too much for one person to handle. One’s own mind can be deadly and yet be emancipating at the same time.
So, I have tried to recall how things transpired at the time, unable to speak of it until now. I still do not know how I managed to keep my secret for so long, finding out I was HIV positive shortly after Dimitri, my beloved at that time, in August of 1985. He had sent a letter to me after a first telephone call:
“It is a peculiar feeling, sweetheart. I first felt it when I was told there was a problem. You have been infected with the virus. Actually, it is not one feeling, it is many together. Bitterness, sadness, frustration, fear, fear again, pain, paranoia, desolation and desolation times ten and I do not know what else.”
“This is the last letter I will send you, undated, yet with many tears and one wish. One wish which I honestly want to come true. Something I have been wishing for 15 days now. If there is a god, dammit (I never asked for one to exist), not knowing what else to say, as long as you have nothing they can tell me I have 15 days to live. Believe me, little one, I want nothing else from life, only that you are well and know that this Dimitri holds you in greater esteem than himself. My mind thinks of nothing but you these days. That face that I love so much is the one I have harmed. I do not want you to feel hatred towards me, it was not my mistake. I want you to be well and if this is an unpleasant chapter in your life then I want you to turn the page, or rather burn it. I just hope you are well. Forgive me if I have done something that could hurt you. I will love you forever, Dimitri.”
Feel hatred? It was more like bewilderment, together with horror. My first test results were negative but I had to repeat the test three weeks later, unable to escape the bad news. I felt the earth moving under my feet, even though I was unable to conceive the meaning of it in my case. Would I meet the fate of all those who perished into few months? Strange, I was still feeling good, needed effort to believe that I was going to die. It’ s not easy to prepare for death when you are 20 and healthy, I had to work on it thoroughly. The next day was my saint’s name day celebration and everyone was joyous for me. I cannot forget the only thought going through my brain was how long I was going to fool everybody and when the time would come that I would hurt them more than they would ever expect. Perhaps there was a way to avoid it? As Dimitri thought only of me, I thought only of my mother, father and brother, the news would devastate them. “How soon do you predict treatment will be available,” I had asked the first doctor who had announced my test results. “It is going to be a while,” “how long,” “perhaps ten years, maybe more.”
In the doctor’s office, in another building on another floor, I remember how Dr. G.P., the AIDS director at the time, had meticulously perused my arms searching for signs of drug use. Disgruntled for a second time, he found no trace. “You don’t have to do anything for now”, he said. ‘The virus will not be activated before a while, and is spread through sexual contact. So, use condoms during sex and do not tell anybody, not even your family”. I left with a small wish to have no need for him any time soon and the reality is I never saw him again. Dimitri was shaken when I revealed to him my diagnosis. We barely discussed the situation. The news at the time was that the virus had made its way to Italy from America and had recently arrived on our shores the summer of 1985, as if it had come with luggage or with a specific loads of drugs Dimitri’s circle of friends was taking. I became officially one of the first recipients of that new virus in Greece.
—
Let me tell you the rest of the story through the chapters of my last book “Good bye AIDS!”, just published in Greek:
In the first chapter, “What I shouldn’t do,” I narrate how my life was up until 1985, how perfect everything was and what unsuspecting people I would have to wound by the announcement that I was bearing the HIV virus. Unless, of course, I kept it a secret. I changed none of my plans and went on to make progress in my studies and in my professional life, although feeling something inside of me broken. In the second chapter, “What was diagnosed for me,” my second positive diagnosis takes place in 1995 marking the beginning of my life as an ‘AIDS’ patient. Apart from the antibody test, they detected a “possible” pneumocystis carinii pneumonia infection and low T4 cell count, a condition the doctors assessed as one in need of ‘AIDS’ medication. It was a critical decision in which I was not given any room to choose. In the third chapter, “The deleterious side effects of the prescribed therapy”, I present what follows after taking the pills from 1995 until 2007, that is a series of life-threatening illnesses. It was Dante’s Inferno at home and at the hospital.
In the fourth chapter, “How I survived,” I get a breath of fresh air with the creation of my web page HIVwave.gr and emails from a Canadian who never found any reliable evidence for ‘AIDS’ transmission, although he was studying in biology at McGill University when the discovery of ‘HIV’ was announced. My first months of marriage with him are included, in which he showers me with information towards my salvation and the Greek-American scientist Dr. Maniotis from Chicago gives clear instructions on how to cease taking the medication. In the fifth chapter, “Total supervision by the ‘AIDS’ establishment”, I am overcome with a feeling that I am practically criminal and surely dangerous because I do not accept the classic model of an ‘AIDS’ patient. I understand how mind terrorism and taboo mentality are cultivated in the media, by doctors, medical students, activists, each one of us, all being revealed to me by a series of arbitrary events in the last two years.
In the sixth chapter, “How I regained control of my health,” I start building a new life into the world of alternative realities with new doctors and persons to trust in the future, and in the seventh chapter, “How I regained control of my life”, I begin posing questions to all those I think responsible, speaking more freely in my interviews, meeting willing accomplices along the way, learning of situations in other countries of court trials and preparing myself for my return to the world, this time with my own rules.
—
I feel a strange serenity since I realized what it was all about, as if it were not such a horrid truth. While my life was aimless under the spell of the HIV belief, now it is a whole different world to discover.
[Reply]
I was diagnosed HIV + in June 1996, after the birth of my second child. I had two difficult pregnancies and multiple surgeries after the first child, which was a vaginal delivery gone wrong. The second pregnancy we did an elective c-section (May 1995- because of the problems the first time around). Got home from the hospital and within 48 hrs, went back in with a massive infection in the c-section that had gone systemic throughout my whole body. I spent almost a month in the hospital, first week in intensive care. Meanwhile, my husband, Joe, was at home trying to take care of a newborn and a 2 1/2 yr old.
They had to open up the c-section and let it heal from the inside out. They sent me home with home health care to tend to the open wound for 2 months, until it fully healed. After that, I never really felt very well. Couldn’t quite put my finger on it, just vague symptoms, tired, fatigued, “couldn’t seem to get through the day”. I started seeing doctors. (first mistake). One doc told me I was just too busy and needed to take a vacation. Another specialist told me I was crazy and put me on Prozac. I was tested for everything under the sun. I saw 7 doctors in one year. My family thought I was crazy too at this point.
It is now June of 1996. Finally, doctor #7 did some tests. Led me to believe that I might have a liver issue. Possibly cancer. He then asked me if I’d ever had an HIV test. I said “no, I don’t think so”. I remember asking him if that’s what he thought it was. He said “no, white, middle-class women don’t get AIDS”. The called me, urgently, back to the office 3 days later. The nurses were all staring at Joe and me. They put us in a room, the young doctor came in, looking down, kind of shaking his head. Said my HIV test came back positive. He just stood there and stared at us. He watched us cry. I remember the room spinning, time seemed to slow down, and speed up, all at once. I heard my husband crying out.
He got up and ushered us to the door and told us to find an Infectious Disease doctor.
My husband and both children were tested. The kids were 1 and 3 1/2 at the time. I was 29. They all tested negative. At this point, my husband and I had been together for 7 yrs, with unprotected sex. It never occurred to me to pursue the fact as to why he didn’t “catch it from me”, understanding that it was sexually transmitted.
I came from a medical background, so I was totally brainwashed into believing that the establishment was NEVER wrong, and to NEVER question them.
I had my first visit with the I.D. doctor and they did the standard lab work. My t-cell count came back at 29 and a viral load of 58,000. He told me to “get my affairs in order, I’d be lucky if I had 6 months.” He said I probably had been “infected” a long time, based on my counts. I was promptly diagnosed with full-blown AIDS. I have to say at this point, I had never had any opportunistic infection or AIDS defining illness. Even when I was told I had AIDS.
I was never in a considered risk group. I had a few boyfriends/partners before I met and married my husband. None positive that I knew of. Never used drugs…. etc blah, blah, blah.
Had a needle stick/exposure in the late 80′s, working on the ambulance. Worked in surgery until I got pregnant with my second child, but never had any other exposures.
I figured I had gotten “infected” then. So, the journey continues.
I get the diagnosis June 17th 1996, with the assumption that I’ll be dead in 6 months. They promptly start me on AZT, 3TC, Crixivan, and Bactrim. I take them faithfully, almost never missing a dose. Took the Bactrim for about 3 yrs before they stopped that. Took the other 3 meds for about 7 yrs with never one med change. I figured they were working pretty well, as I wasn’t dead yet! My doc finally stopped the Crixivan, said it was doing damage to my liver. Put me on Sustiva. I continued to faithfully take the AZT, 3TC, and Sustiva until April 2007.
I have to say that through all of this, my husband was so supportive and caring. He did anything and everything to take care of the children and me. We had this gauntlet hanging over our heads for 11 yrs. though. When might I get sick and die? What will it be like? The odd thing was, I was never sick, and still never developed any opportunistic infections.
What this diagnosis did to us the most was put fear in to us. We stopped having sex, completely. We did not have sex for many years. We did not want to risk him becoming infected, and the children not having parents.
This curse/hex they put on you obviously had a big impact on our young lives, and had changed our marriage relationship in a way that is almost unspeakable.
Fast forward, April 2007. Joe is on the Internet one night, searching out a funny video that a friend had sent him. All of a sudden, out of nowhere, Scovill’s video “The Other Side of AIDS” pops up. The really bizarre thing was that none of these words were in his original search.
He proceeds to watch the whole thing, absolutely mesmerized. He told me about it the next day, and thought I should watch it. We were stunned! We were NEVER told that there WAS another side to AIDS.
Seems as though, any other disease they diagnose you with, they tell you (almost) all your options. All your choices. You get second opinions.
With the HIV/AIDS scandal, you are NEVER told there is conflicting evidence out there.
We are led like sheep to the slaughter. And we go silently and willingly. Never questioning, never demanding proof.
From that moment on, I spent every waking second on the Internet, finding one link after the next. One site after the next. One book after the next. One dissenter after the next.
I had NO IDEA! I felt so deceived. So betrayed. I had been robbed of some of the best years of my life. It was all like a huge, cruel nightmare.
After a couple of weeks of studying, reading, researching, watching videos, reading books, doing our own due diligence, I decided to quit all the meds, cold turkey.
The first week went okay, I was feeling fine. Then things seemed to go downhill. I was doing a lot of different types of detoxing, and had quite a horrible 4 months. My system seemed to be shutting down. I am 5’8” and went down to 114 lbs. I looked like I might die. Never once did I consider restarting the drugs again, as I knew what I believed, and why I believed it. But, things were difficult. In retrospect, I think it was a mixture of multiple forms of detox, way too fast, and massive drug withdrawals. Those toxic drugs are bound to be very hard to the body after 11 straight years.
Four months after quitting, I went back for what I considered to be one last visit to my I.D. doctor. I was going to be polite, tell him what I’d done, and that I wouldn’t need him anymore. I had my final lab tests drawn a week before I went in.
When I got there, it seemed like all hell broke loose. He told me I had done a very stupid thing, and that I’d be DEAD, VERY SOON! My CD4’s were 96 and viral load of 135,000. Now, at this point, I’d very carefully studied these invalid surrogate markers, and they didn’t mean anything to me. My t-cell count had never been very high the past 11 yrs. anyway. Usually hovered between 200-300 tops and the viral load had been “undetectable” for 11 yrs on the meds.
I do think that one has to be very strong in a situation like this. I faltered for a moment in time. The thing that kept sticking out so prominent in my mind though was Michael Ellner’s speech I’d heard about “bone-pointing”. I reviewed that, over and over in my mind, devouring how important it was. That was a lifesaver for me at that time.
And I could never have done it without the constant support and reassurance of my husband. I think this is the most important factor in one’s total health and recovery from this poisonous lie. Someone who supports you completely, and can remind you of the facts when you are weak.
Anyway, my doctor was rude, angry, and seemed completely offended that I would dare to question him, or the AIDS establishment.
I had a good relationship with my pharmacist over the years as well. She was very angry too, to put it mildly, when she found out.
Tell me, why is it the only people that actually get mad and take this personally, are the ones that benefit financially $$$$$? Hummmmmmm?
Something my husband brought up recently that really made me stop and think. Why is it, with any other dis-ease that you recover from (think cancer especially) are you applauded, people are happy for you! It’s a miracle!
Only with AIDS, do they call you a denialist. They are mad that you survive.
I have now been med-free for 1 ½ years, and feeling FANTASTIC!! No more side effects. All symptoms are gone.
I have completely left the medical establishment, with very hard feelings. Believing that they are totally worthless about 95% of the time.
I have found more help, health, and healing in the alternative world than I ever expected.
I exercise every day. I live a mainly raw foods, vegan diet, which I strongly believe has aided in my recovery from nearly being poisoned to death.
I pray every day that my story will continue to be found, and be a great blessing and source of encouragement to others that have also been deceived by this “scandal of the century”.
I am so very deeply sorry for those who have had to suffer the worst of this. The loss of loved ones, of children…..
I am so very thankful, from the bottom of my heart, to those that have walked this path before me, led me along the way, listened to my fears, my thoughts, my questions.
I am forever grateful for all the dissenters out there, who have sacrificed their lives and careers, so that I may live. Those who dared to question this hypothesis built on sand.
I have vowed to not go quietly.
I have business-type cards printed up that say HIV does not equal AIDS, an upside down ribbon, and a few of the websites that continue to help me every day. I leave these cards everywhere I go. Every public restroom, every restaurant, on the table, in multiple places in the library, anywhere.
How has this affected me? Shock, sadness, despair, fear, suspicious, robbed, angry, outraged, collective, reflective, triumphant!
I am an overcomer!
I will tell my story.
I will not go quietly.
Karri Stokely
Hosea 4:6
[Reply]
I was tested positive in summer 2003, i was 26..
i been living in new york and decided to take the anonymous test in the Chelsea STD Clinic. before registering for my test i was asked for my name and address, which surprised me since i wanted an anonymous test. they told me that its just for internal proceedings, i made up a name and they let me take the test. its a grueling process, small room with dozens of people some waiting for results for hours, some waiting for the test. it was a hot day, i remember how hot and sticky and dirty it was there. some people creating scenes, lots of nervous energy. they asked me about my sexual orientation, how many partners i had. this was maybe 3rd year into my coming out as gay and starting to explore my sexuality. My family was in europe, i was in a new place , by myself, number of my partners was very high.. i been picked up and dumped practically every day, and was still unaware how to be sexually responsible, and what real love and partnership means, and where to find it. i was pretty honest with the nurse, didnt want to shock her, so i probably cut my numbers by half. i admitted to have had unprotected sex. she was friendly and very inquisitive, as i remember.. it were very intimate questions, she wrote all my answers down in a file. i was told to come back in 10 days.
10 days later, i am back in that clinic on 9th avenue. now in the role of somebody waiting for the results. actually, why i went there in the first place, i had a scare of having gotten some venereal disease, hiv seemed so remote. i couldnt even imagine it. after an hour or two of waiting, i was called in by a male nurse. he had my file spread out in front of him. he looked at me and said, i have good news and bad news for you, which one you want to hear first. i was a little perplexed by that question and he just continued after a while. good news is you dont have any regular std’s , bad news is you tested positive for aids. i dont think i reacted much. took me probably a few months to realise it. that day i only remember walking 20 blocks or so in the blazing sun, and everything was a blur. so this nurse told me that, and then suddenly he was like, oh i need your ID. i wasnt even supposed to tell you the results before i get your ID. i told him i didnt have the ID on me (the name i gave them was made up anyways). I asked him why the ID if it was an anonymous test, he said that the test wasnt anonymous, it was confidential, and they have to report me to new york state, and its a big problem that i got my results before they could verify my ID, that i was against their policy and law etc. he called another administrative nurse, and they stood there for 15 minutes discussing what to do with me. so that was my first half an hour of living with hiv, i been treated as an offender of the STD clinic policies.. By that point all i wanted was to get out of it, i couldnt imagine that’s what happening with ppl with HIV, you need to be registered right away. and you having HIV is just a job opportunity for a nurse. they made me promise to come back with the ID, and they made an appointment for me with a hospital which was affiliated with them. by that point everything was like a business transaction.. they made me spend close to two hours in that tiny office before they finally released me.
i never went where they sent me. I met somebody who had hiv and he showed me to his clinic. and it was a nice doctor there, who actually helped me to get over the first shock, and helped me through the first year. he helped me to see hiv as something that is not the end of the world, without reporting me anywhere and never threatening anything. actually protecting me from all those laws, i was terrified to lose my job and not being able to get the green card because of hiv.
so now i lived 5 years with that, been taking medication all that time. in the beginning my CD4 was in the 300s, and viral load was 200.000 , some crazy high number which look scary. i been sick for about 1.5 years taking the medications, constant stomach pain, headaches, bad sleep, constant exhaustion. but i got used to it, and am healthier than ever before. still not sure if those meds do more harm or good, but just keep taking them, in case if. been in a relationship for 3 years, with an hiv neg person. taking meds makes me feel safer in case there are such accidents as condom breaks and stuff. never would want him to go through all that hiv scare.
and must emphasize, i never felt sick. i had problems dealing with medications, thats all. and of course a lot of mental issues just dealing with an additional problem and obstacle in life. but thats it. i really am thinking a lot about what HIV really is???
[Reply]
Cleverfool Replies:
April 12th, 2011 at 9:47 AM
Brave brave man…pl take a look at virus myth and rethinking aids and questioning aids…..I mean those r websites just google those terms it may help you to find some strength
[Reply]
For several years, I participated in an African-American gay male “prevention” study at a local gay health organization, getting interviewed/HIV tested every 6 months, along with receiving safer sex education. They’d ask about my sexual activities and drug use. Sexually active since age 18, it wasn’t until my late 20s that I started drinking alcohol regularly and only occasional marijuana (like several times a year). I repeatedly tested negative over the length of several years of bi-annual testing… that is, until my very LAST scheduled study visit. It was the week of my 32nd birthday, and I was told I was now “positive.” I now feel that due to the interpretive nature of the HIV tests, there was a statistical “need” for me to finally test positive before the study ended, probably to insure future AIDS funding.
Anyway, the “case worker” was very professional and compassionate, apologizing for my predicament. My initial reaction was to think of my new boyfriend and how I would tell him the news. It wasn’t until later that I started panicking about being positive, feeling as if the “virus” was surging through my body with every heartbeat. But as a result of my test results, I was enrolled in a weekly group for newly-diagnosed HIV positives (which ran for about 7 weeks) covering all the issues my new status would affect (health, legal, mental, etc.).
Since dating my boyfriend, I had some anonymous sexual encounters with others, but they NEVER included an exchange of BODY FLUIDS (conditioning myself to this practice for a period of 5 or so years). Boyfriend and I were using condoms for maybe the first 8 months (with breakage only about twice), leading to discontinuing our condom use altogether. According to the believed modes of transmission, this would mean I had contracted HIV from him. I don’t believe that to be the case anymore.
I will be approaching the 10 year mark in a few months, and I’m still healthy without meds. A little over a year ago, I stopped seeing my doctor when he pressured me to start taking ARVs (Atripla) and bactrim. He told me I was going to die if I didn’t. I had stumbled across Peter Duesberg and his “HIV does not equal AIDS” theory years before I was labeled “positive,” saving the article for years to see what would ever come of this declaration. It wasn’t until several years after diagnosis that I stumbled across a whole network of dissenting AIDS information and quickly realized how sharing this info brought out utter hostility in people for even suggesting alternative causes of AIDS.
Keeping religiously abreast of new updates on MULTIPLE sides of the debate over the years has been a major support for me, but since I am in the HIV closet to everyone except my boyfriend and two other friends (not including dentist and doctors), there is still a sense of isolation and stress from “hiding.” A few more people MIGHT know my status (no thanks to my ex-doctor, which is another story in itself), but none have confronted me directly.
My boyfriend (also positive for at least as long as myself) hasn’t pressured me to take meds, but he is new-to-yet-leary of the dissenting information and basically believes the current AIDS dogma. An ironic thing is that I was the one getting regular viral load/t-cell counts over the years (starting with a t-cell count of 500-600, declining to 180 the last time I checked a year ago before stopping that whole stressful routine) and my boyfriend’s last t-cell count registered 900 (he hadn’t been subjected to the regular quarterly bloodwork routine like myself). He was told he may be one of the rare people who NEVER have to take the medication. I, on the other hand, am “draft-dodging” an AIDS classification because I’ve dared to fall below the 200 t-cell count… but I haven’t had any opportunistic infections or ill health over the years.
After much effort, I recently found a natural doctor that I’ve been seeing who doesn’t subscribe to the AIDS partyline. I am just starting to explore available alternative health options, but I’m slightly prohibited by it’s out-of-pocket costs. I recently enrolled in a flex-spending plan through my work insurance, so I’m hoping this will help. Meanwhile, I try to concentrate on my life as a whole, and not get bogged down by living under such a “curse.”
[Reply]
I tested positive on 1998.
I did that test just like everybody should do it…at that time i though it was a virus there and well…”to know it’s beautiful” I was in a monogamous relationship for years. Never being a promiscuous guy. So my chances where pretty small to get anything like that. In one of my trips to Paris i did the test. The doctor send me to a laboratory to do the test and they will send everything to him. few days later i was in front of the doctor to receive the results. Little nervous but since i was feeling so good, strong and healthy….nothing to worry.
As soon as i seat she said that i was positive. I was not so clear about what that mean so i ask her if that mean something bad i didn’t know at that time if positive mean bad or good…..she said very bad. I try to control myself and not to cry in from of her, but i couldnt control my body, i was shaking and started to cry. She seems angry and said “well, you expected it right?” i said to her NO not at all…they she said that it was a desease now like diabetes or something like that…i left the doctor office and i walk until my place. i called my family and i tell my closed friend, kind of prepare them to see me die soon. i think in some way i abandoned life from that moment.
After that i was just prepare myself to die….keep money so my family no need to worry about that aspect of my dead. When i walked on the street i was jealous of everyone that seems healthy i suffer so much those days….only who have being on this can understand what i mean. Thanks god i have a wonderful family and a lovely partner, who is negative.
In the family there is someone who is a doctor and specialist in STD. He was of the idea to wait until it was really necessary to make me take “the life saving drugs” he of course believe in HIV so he suggest me to take a test every six month to check my VL and T4 i did for something time,like 5 yrs…
I was all the time in the internet researching about HIV and i don t know how..i found Kim Bannon website…..and then my life started to change. I read everything even it was in english , wich is not my mother language…most of the time i couldn t understand …but something i understood… there was hope….there outside, somewhere some peoples where asking questions…the right questions. So after reading for some time, i decided to not continue with the HIV test anymore. Of course it was a real fight with the family doctor about this, he think i’m mental retarded. It’s like HIV took away my intelligence , when u are HIV they think you are not a wise person anymore if u decide not to trust all what doctors say…
At the time i was thinking that i was really going to die of HIV any sickness scare me so much. any cold could bring me to dead…..and my health started to be “fragil” i got pneumonia twice , the first time i though ok this time im going to die …this is typical of HIV …for my secon pneumonia i have more information. so i didnt panic took medication and end of story. Have to say that when i was negative have also pneumonia once.
Now, i live a “normal ” life , have sex,i eat well and healhty as much as i can, i have plans for the future and i try …try to live as i never hear “Positive”, i live in a country where to be HIV positive means you are not wellcome anymore and treated like a pervert individual so to live “normal” it’s hard. Have somehow to hide…like i was a criminal..but i feel innocent…..i am innocent.!
At first i do not wanted to write my story here but if someone who is afraid ,as i was ,and lost ,as i was, need some information it may help u to know that there is someone who is not taking , never done …any medication for HIV and feeling fine…very fine. i’m not dead …i’m alive and you too will be.
[Reply]
I tested positive in 1996 when I was in the hospital for a respiratory ailment. The doctors urged me to take an HIV test and after years of resisting taking the test I gave in and consented. I had always been suspicious of the test and didn’t know what good it would do to know since the only treatment available at that time was AZT or equivalents, which I would have refused to take anyway. I figured the only thing I could do was to live as healthily as I could and that’s what I thought I was doing.
Then I developed a terrible cough with low-grade fever and weight loss that I left untreated for several months until my partner insisted that I go to the emergency room at a local hospital. Just the endless ordeal in the emergency room and the days following in the hospital would be enough to sicken a healthy person. I was put in isolation for 6.5 days, over twice as long as is required by state law for anyone coming in with respiratory symptoms. Anyway, after much pressure from the staff and others I succumbed and took the test and it came out positive. The doctors told me it was a great time to find out that I was positive because the new meds (protease inhibitors, etc.) had just been released about 6 months earlier. (Yippee, lucky me!)
I agreed to go on the meds because they were presented to me as the only path to take that didn’t lead to sickness and death. I was also advised to make a living will and to generally put my house in order because it was just a matter of a short while when I’d be trading my house for a hole in the ground or an urn on the mantelpiece. I faithfully took my meds for 6 years and had mild side effects. I won’t say they were extremely horrible but I didn’t like the idea of taking these toxic substances and I was starting to get the distended belly and sunken cheeks and I had gas and stool problems. My vanity about the body changes spurred me on to consider what would happen if I stopped taking the meds.
Just at that time I became aware of Christine Maggiore and Alive & Well. I read Christine’s book as well as all dissident literature I could find. I armed myself with a full arsenal of information and was almost evangelical about my new-found knowledge. When my HIV doctor expressed surprise when he became aware that I was put on medication just based on my t-cell count in 1996 a red flag went up for me. I stopped taking the meds and stayed off for a total of three years; during this time I divorced myself completely from the medical establishment. I totally dropped out without a word to my doctor. I felt like a criminal and I attribute the reason I didn’t do better off the meds to the immense sense of guilt that I felt. (Didn’t somebody say this is a religion? ) After about a year off the meds I started having pain in my tongue and then a white coating on it.
I was terrified of going to a doctor because I thought they would force me to go back on the meds and I had set my mind and will against that. I was so ready to feel better than I ever had in my entire life because I’d read so many testimonials of people who had stopped the meds and spoke about how good they felt. I have to say that I did not feel better, in fact I felt quite horrible the whole time I was off the meds. I finally wound up going to a doctor who I was told would not try to push antiretrovirals down my throat and he indeed did not try. He respected my wish to stay off the medications despite the candida, fever and headaches. A few days after seeing him I fell asleep on the couch and got up to go to my bed and I passed out and fell and hit my head, got up, fell again, got up and fell again. My partner called 911 and I woke up several hours later in an emergency room. I was released in the morning and I told my new doctor what had happened and he suggested I be checked out at the hospital he was connected with. They found I had cryptococcal meningitis.
I was treated for it in the hospital but I continued to have incidents where my head would get banged hard. I started walking funny and the nurse practitioner suggested I have a CAT scan. It showed I had bi-lateral subdural hematomas. Two neurosurgeons agreed that there was too much blood to dissipate naturally so they drained the blood out of two holes they cut in my skull. They said that HIV had made my brain atrophy so the bridge veins were stretched to the point of breaking.
About a month before that I started HAART again. It was just out of the question that I not do that. I, of course, didn’t want to, but my faith in my decision to not take the meds had been shattered by my grueling experiences. I was put under the care of an HIV doctor when I was released from the hospital and rehab house for AIDS patients. I was on several combinations of meds the second time for 2 years, each with side effects that necessitated me changing to a different one periodically. After Atripla, which made my sleep hours a living hell my doctor was going to offer me a new, as yet unapproved experimental medication (raltegrivir) to try. I decided that if I’m going to be a guinea pig, I’d rather be a guinea pig in my own research project and I told him that I’d like to experiment with not taking any medication at all. At first he tried to dissuade me, reminding me what happened the last time I tried that, but he didn’t insist and so with his partial blessing I stopped taking all meds. He told me he would continue to treat me with the same degree of care and concern if I take the meds or not. I have to say I was apprehensive and somewhat fearful due to my experience the last time I went off the meds but I felt I owed it to myself to follow what I believe to be the right thing for me to do.
A few weeks after stopping I started feeling strange, sort of weak and spacey. I told my doctor and he said it was probably because my viral load had gone up so high that it was affecting how I felt. I took a trip to Europe for 4 weeks and felt horrible the whole time. I thought I had made the wrong decision in discontinuing the meds and again the guilt got the better of me and as soon as I returned home I went to my doctor and told him I was ready to start on whatever he thought I needed. I took some protease inhibitor that gave me diarrhea (that again!). I was on that a couple of months and then raltegrivir (Isentress) got approved and I started taking it.
I was on it for 10 months and I read some stories about Isentress exacerbating depression in some users. I have been depressed for all the time since I was diagnosed positive but it seemed worse than ever. I told my doctor I wanted to stop taking Isentress to see if the depression would be affected. He asked me what I’d like to switch to so we decided on Selzentry and Epzicom. I filled the prescriptions on October 27 but I haven’t even opened the bottles and haven’t taken anything else since that day. Last week I saw my doctor and told him about my decision to go the no-meds route and he suggested we continue doing the t-cell counts and viral load tests. I told him I’m not interested in those tests and he said he could do them and not tell me the results. I told him I’d think about it and let him know.
I haven’t broadcast my decision to stop meds to friends this time because I know all I’ll hear from them are warnings and reminders about what happened the other times I stopped. In my estimation this whole HIV thing is a group fantasy in which almost every literate person on the planet is participating, including me, albeit with a few waking years or months here and there. Presently I think I’m in a re-awakening phase. Nowadays I’m spending lots of time reading dissident literature in an effort to deprogram myself from the HIV=AIDS dream. I figure there’s no antidote to falsehood better than some good doses of truth.
If I have one regret in my life it’s this: that I ever took that damned test.
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Cleverfool Replies:
April 12th, 2011 at 10:17 AM
Take care man
I saw on YouTube one African who took arv meds got internal bleeding in his one eye and lost it. I think in your case it is because of the med u got that bleeding in your brain
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Thanks Liam,for giving us the opportunity to share our experiences.
In 1995 I came out to my girlfriend of 6 years,repressed and tired of lying to her and myself, I told her the truth and after the break up,I was destined for the gay community and a religious stance for HIV Testing was the common mantra I heard so often from so many of my ‘new gay’ friends.
I found an anonymous clinic founded by prominent black AIDS activists here in Florida.(which no longer exists) I was a frequent ‘tester’, every three to six months was what I was told by so many because that is the so called ‘window period” for HIV. From 1995 to 1997 I tested Negative,my ELISA tests were Non Reactive. I began experimenting and dating tryng to find my way in the gay community,I partied every Friday and Saturday Night and hook ups were ‘natural’ for me for I was no longer that repressed homosexual, the Truth had set me free. I never touched recreational drugs other than pot occasionally and someone in the midnight hour would often shove a bottle of poppers in my face. I had many drunken stoopers which kept me in a party lifestyle that I wasn’t use too.
July 1997 landed me in a brief relationship with a guy,we rented an apartment and made some ground rules and became the perfect couple(at least in my world). I had asked him one day ” everything is okay with you? You get tested regularly right? he looked and me and said:” Im kool..”we’re fine”. He had many friends and many ‘buddies’ that I wasn’t aware of. I came home from work [early]one night to find my perfect boyfriend in an ‘orgy’ (if a 5-some constitutes an orgy),I was floored! I couldn’t beleive my eyes and I ran out of there like a bat of hell. I confronted him and asked why? and he was cold and non responsive.
This made me feel angry and I confronted him again with leaving on my mind,so I asked him again if you are having this kind of sex and rolling on X-tasy with all of your buddies you will put me at risk! How do I know that your not okay? He reached for his wallet and pulled out his HIV test result and showed it to me,and what a relief.. it said negative.
The next day I packed up and moved out because this is nothing I wanted from a so called ‘gay’ relationship.
Things were calm for several days and I got over it, life moved on until I ran into a few of my ex’s friends at a restaraunt and they invited me over to their table and so I did. They revealed to me that my ex had full blown AIDS and that they had all been a victim of a player,they had all slept with him once believing his lies. I called them liars and was upset at first, and I said:” I saw his test result”, one spoke up and said “oh yeah the 4 year old test result ploy that most guys don’t even bother to look at the date”.
I was terrified and couldn’t eat my dinner.
The next day I went to the clinic,I told them the story or the news I had received the night before. I gave them my blood and for 2 nerve wrecking weeks I awaited my results.
I had called them and asked for my results and she wouldn’t tell me over the phone. I went in that day with severe [Night Sweats]..it only took about 10 seconds after I sat down and she said: “You’re Poz”. I immediately snapped into a twilight zone,I remember I literally could hear her voice but all I could fathom at that moment was death, the fears of no one wanting to touch me,I could never build a healthy physique, I could never go dancing,I could never have sex again,I could never have a realtionship again and life as I knew it was over , and so I fell into her arms crying like an infant.
I remember driving myself home that day and I called a dear lesbian friend of mine who broke down and cried over the phone, I must have lied in the kitchen floor for over 5 hours crying myself sick. Yeah this is my story of the wonderful AIDS Zone that I was put through,I get angry sometimes when I think about the emotions I felt that day.
It’s 2008 I have never been sick with anything defined or labled by the CDC or HIV Industry as HIV,GRIDS or AIDS.
I have had to endure these Axioms in almost 12 years:
a sure death sentence within 8 years, Crixivan,Combivir,Nevirapine,an Indeterminate test result after 6 years(a reason for them to re-test me)ridiculous theories by different HIV Doctors, bogus Doctors orders,acute Aneamia,Neuropathy,rejection,hatred and an epithet of denial.
My indeterminate test result in late 2003 led me into research that I never knew was outside of the mainstream. I questioned HIV/AIDS and I questioned the Other Side of AIDS too and despite my confusion the only answers I was getting was from my own medical records.
When I think back at my ex who I so viciously hated for “infecting me” I eventually reconciled his actions in my heart, I had felt raped and stripped of any integrity left in this world because of him. some of his friends told me that he died of an Annuerism due to an X-tasy over dose in 2003 but for the majority surrounding his family and friends they claim “he died of AIDS”.
“Education to the front”! this is a common phrase in most HIV clinics today, it’s a sound warning of those potential victims that stand in line of ancedotal stories like mine,I often tell people that being poz is a good thing! I have immunity thats what an antibody test is for but this is not what the world beleives.
Almost 12 years now and I am alive and very well. January 2 2009 will be my 5th year, far, far away from the AIDS Zone that was so deceitfully planted in my heart and soul.
I encourage people to break down the language and terminology that have been so skillfully planted into our everyday vocabulary by the media, CDC,NIH,The FDA and the Pharmaceutical Industry.Once you have deconstructed this barrier in understanding of HIV-GRIDS-AIDS then and only then do we understand why anyone would test HIV positive in the first place.
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I didn’t read the questions Liam asked about the details of testing carefully enough so I didn’t put in those details in my earlier posting so I hope it’s alright that I tell some of my memories of finding out the positive test result.
A social worker/counselor at the hospital gave me the news. I ‘have to say I was surprised on one hand and not surprised on the other.
‘Surprised’ because I had always practiced what later was to be called ‘safe sex’, meaning I didn’t take in semen orally nor anally. In fact I never was penetrated anally, except one time in an Amsterdam bathhouse in 1984. After showing positive in 1996 I figured that had to be the time I got “infected”.
‘Not surprised’ because the first mention of what was later going to be called AIDS included everything from hand-shaking to toilet seats to kissing someone’s elbow to other more ‘juicy’ sexual activities as modes of transmission. I figured I’d done everything at least once so there’s no way I could be spared. I spent the years 1981-1984 just waiting to get sick and obsessively inspecting my body for purple marks and knowing that every time I had a scratchy throat that this was ‘It’. It wasn’t a matter of ‘if’ but ‘when’. I think it was around 1984 that they revised the list of the modes of transmission to anal reception with ejaculation and possibly ingestion of semen so since I didn’t engage in those activities I felt like I had been given a reprieve. My anxiety lessened but never went away.
So when I finally succumbed to testing in 1996 I had by then convinced myself that since I had avoided ‘risky’ behavior it was safe to take the test because my chances of being positive were slim to nil. I remember thinking to myself that i would only agree to take the test if I could accept hearing either result with equanimity. I thought I’d reached that level of enlightenment but obviously I was mistaken. I was released from the hospital after a couple of weeks without a diagnosis of what brought me there ever being made. I was told I’d probably had a bacterial pneumonia but that it was already resolved by the time I came to the emergency room two weeks earlier.
I went home and within several hours I had what could be called a ‘break with reality’. I became paranoid and imagined that radio broadcasts on NPR were secret messages to me that had to be deciphered and I got a friend to help me do the deciphering. It was actually sort of fun but my partner and my friend became alarmed at my behavior so they took me back to the hospital and I was put in the psychiatric ward and remained there for two weeks. They proclaimed I had AIDS dementia and gave me Haldol. All the patients there were walking up and down the corridors doing the ‘Haldol Shuffle’. To show how paranoid I was I remember seeing an article in a newspaper about a terrorist attack in Israel or Palestine against some Americans and I thought I was the terrorist and that they were going to find me. I admit I was screwed up in the head but that place was run by lunatics.
I finally convinced the doctors that I didn’t need Haldol but it took a while so I had to act like I was taking it because they watched you swallow and sometimes the tablet would disintegrate in my mouth before I could spit it out. In such cases I’d be doomed to suffer the effects of what I called “Hell-doll”, which for me were terrifying.
When things settled down I started thinking about who I would tell the news to. I told my sister and she, in her usual manner was totally accepting and supportive. I discussed with her and my aunt if I should tell my mother. We decided it would be better not to tell her because she was the worrying type of mother who would make it even harder on me with her obsessive concern. She died in 1999 never having been told. No other family members were told and since I live halfway across the country from them it’s easy to never have to deal with it. I went to a support group for a couple of years but when it became just a place to report which meds members were on and what the side effects were I lost interest and pulled out of the Poz scene.
I guess I’ll stop here because the rest of the story is in my other posting. I’m finding it’s helpful to my recovery from the HIV fantasy to remember and document the insanity connected to taking this test. It’s difficult to not be enraged and bitter about spending all those years of my life either anticipating testing positive and then later living with the death sentence that actually testing positive can place on one. To top it off, coming to know that the test is bogus and signifies nothing in reality is at times almost impossible to digest. It can feel like this experience was all for nothing, though I know that’s not true and I’m excited and grateful that the truth is coming to light thanks to Liam, the dissidents and all of us here.
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WELL SAID, Eddie!
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I wanted to do this, but I wasn’t sure I was up to rehashing everything again. Now I want to tell my story in honor of Christine, even though it may not totally confirm all she believed in.
How many people really know when they actually became “positive”? Most of us probably only know when we first tested positive. At the end of 2000, I was running a small restaurant with a partner who had been my boyfriend until very shortly before. Although he was very much younger (23 years!) and had never promised me forever, we had been together about 6 years and it was the best relationship I had ever had. I guess I was 52 at the time and about as far from the “risk groups” as you can get, being a white middle class female.
The breakup hit me very hard and seemed to be almost as tough on him, but he had decided it was time to find someone with whom he could have children. He left the restaurant several times, mostly to go back to school and get a degree, and more of the responsibility fell on me. Cooking was the only part that I was really good at.
In any case, in January, 2001 I got a cold or flu that just never seemed to go away. I was even finding it very difficult to eat, which was very unusual for me. I developed a cough and shortness of breath which gradually gor worse and worse. I saw several doctors, mostly of the integrative type ro no avail, and at one point requested a chest x-ray, which apparently showed nothing wrong.
I dragged on until I could barely walk and was really unable to work. Near the end of May, I finally asked a friend to take me to the ER at Duke. They got me on oxygen so fast it made my head spin. My oxygen level was 78, which is extremely low. I was so sick I don’t remember the sequence of everything, but they called my daughter and she came and at some point I was asked if the could do an HIV test “just to rule it out”. Well of course it didn’t, and 2 doctors came to my room (I had been admitted) the next day or so and broke the news. They seemed surprised that I was as upset as I was and told me that it was no longer a death sentence.
One of my first thoughts was how to tell my ex-boyfriend. I assumed that I had not contracted it from him because he was a frequent blood donor. He took it amazingly well and eventually arranged to be tested anonymously. He repeatedly tested negative, so that was a relief. My daughter, when I told her, sort of gasped and staggered to a chair. I told several friends, with varying reactions, though everyone seemed supportive. My daughter told my father at some point. I was kind of glad that my mother had lost her battle with ling cancer, because she was a world-class worrier and would have been devastated. Although I had very little respect for orthodox medicine, it never occurred to me that there might be alternative views regarding the cause.
I spent about a week in the hospital, spiking a fever the first or second night. I was treated with all the usual, prednisone, Bactrim and I don’t remember what else. They had confirmed, via chest x-ray and I think a bronchoscopy, though I don’t recall any sedation, that I had PCP. I guess this happened before I got the news, because I remember asking if I had AIDS, and they said yes.
I went home and took a lot of time recovering. I could barely rise from a seated position without my thighs screaming, and I felt like I’d lost a lot of muscle. I had lost quite a bit of weight while eating very little. Fortunately, my appetite had returned before I left the hospital.
So they set me up with an appointment at the infectious disease clinic about 3 weeks later, at which time they asked me if I’d like to participate in a clinical trial. Just think! All those life-saving drugs for free! Ir seemed like a good idea at the time, so I signed my life away. It took a while for my numbers, which started out at CD4 100 and viral load about 700,000, to improve, but they did and everyone was pleased with how well I was doing. I did start to feel a lot better and had very few side effects–maybe short-lived mild diarrhea. I found out later, although I always suspected this was the case, that I was on Trizivir and Sustiva. I stayed on the trial until it ended in February of 2005, going in at the proper intervals to have blood drawn, my body measured, and my brain tested with various little puzzle things. I had signed up for a few additional studies that went along with the main one.
When the study ended, they got me on the ADAP program, so the state paid for my drugs. I had since sold the restaurant at quite a loss and had become mammy for my grandon who had been born in March, 2003. Shortly after that I filed bankruptcy, being unable to pay the credit cards I had run up trying to keep the business afloat.
In May, 2005, while checking out a positive personals site recommended by a guy in Florida with whom I had struck up a phone friendship, I happened upon an ad that mentioned a few dissident sites. This intrigued me, so I decided to visit virusmyth and see what those nuts had to say. Well, I was hooked almost immediately and read voraciously for weeks and then months. Every time I said, “Well, what about…?”, there was a plausible answer. I had recently developed a rash on my arms and chest, my “numbers” were excellent, and I had begun to feel that maybe my body had had enough of the drugs, so just before my next Duke appointment, I went cold turkey off the drugs. I can’t remember whether I told them before I did it or right after, but they were pretty nice about it. No one yelled or threatened me with imminent death.
Shortly after quitting the drugs, I began to experience allergy-like symptoms. It was mostly an increase of mucus accompanied sometimes by a cough. The very act of eating seemed to aggravate it. I don’t remember how quickly things progressed, but they did. The cough got worse and over time my digestion got really bad. I was plagued by worsening fatigue and could barely climb my stairs without resting. I had bloodwork done and my liver enzymes were high and getting higher. My platelets and white blood cells were low and eventually my ferritin levels were through the roof. I had chest x-rays and an abdominal CAT scan which didn’t show much except a slightly fatty liver and mildly enlarged spleen. I saw a gastroenterologist for my liver, but all he did was talk me into an endoscopy and colonoscopy, which were normal except for a little esophageal candid, so I was prescribed Diflucan and Nexium for reflux I didn’t think I had.
A few months before these tests, I got a bronchitis sort of thing that never went away. This was when I got really sick and could barely eat without immediately regurgitate due to the coughing. Things were just a mess between this and the fatigue and the digestive stuff. My daughter was starting to research nursing homes. I could barely do anything.
Eventually, I broke down and agreed to go back to the ID doc at Duke. Of course, everything was because of AIDS and the only hope I was offered was a new drug–Atripla. Reluctantly I went on it and here is where it gets freaky. I improved almost immediately and continued to do so. Matt Irwin, the dissident doctor in Alexandria, VA, with whom I had been corresponding since having seen him once, said it was probably that the drug was suppressing my immune system and that I had something autoimmune going on. This sounded pretty plausible to me, but who knows? Nothing natural that I had tried seemed to work at all.
So here I am about a year after starting the Atripla, and I am gradually weaning myself off it. No more cold turkey. I will be consulting with Matt, probably by phone, to begin some natural therapies before totally quitting the drug. I know everyone around me would consider my actions sheer folly, but I cannot in good conscience continue on a drug with such toxicity. I have high hope that things will work out this time, and am improving my diet, especially to include more probiotics and cultured veggies. I believe there is a good chance that my digestive system, where a large part of the immune system is located, is key. I think leaky gut syndrome may be part of the problem, and part of what I’ll do is practice skilled relaxation and continue my yoga. I’m more convinced than ever that the mind/body connection is very important.
So wish me luck. It will be a long journey, but think I know more this time around. I won’t be doing any harsh cleanses, though! My deepest condolences to Christine’s family and friends. I hope the truth comes out.
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This is neat. Corresponds with my early introduction to all of this, when I was studying/apprenticing in macro cooking with my friend/mentor, who was running a large cooking group for people who had cancer or tested hiv pos.
http://www.youtube.com/watch?v=rTHhTpmmz_I
http://www.youtube.com/watch?v=DbFGJwC8xX4&feature=related
http://www.youtube.com/watch?v=LWfU8b9DQmE
http://www.youtube.com/user/TheGaryNull
Null has got books on recovery as well. Interesting stuff – jibes with current mainstream peeks into Selenium, Vit A, Glutathione, essential fatty acids, probiotics, ‘micronutrients’ etc…
http://archinte.ama-assn.org/cgi/content/abstract/167/2/148
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=18923
http://www.nutraingredients.com/Research/Selenium-may-protect-against-artery-furring
http://www.nutraingredients.com/Research/Selenium-pills-may-slow-HIV-progression-says-study
http://www.nutraingredients.com/Research/Probiotics-may-ease-gut-problems-in-people-with-HIV-AIDS
http://www.thebody.com/content/living/art39550.html
http://www.aidsmap.com/en/news/1A45A664-23B6-427B-8C44-717A5F3A0509.asp
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1397854
See also:
http://www.robertogiraldo.com/eng/papers/RoleOfNutrition.html
http://www.thenutritionreporter.com/selenium.html
http://www.woats.co.uk/pages_articles/health_frauds_07.htm
Also, pushing back from the slavery to surrogate markers:
http://www.aidsmap.com/en/news/796E5C58-223A-48E2-AE15-B2C6EB1130D4.asp
NY Times on Concorde trials
From 1993:
NYT 2nd article on Concorde
Don’t rely on TCells as Surrogate markers…
http://pagesperso-orange.fr/sidasante/azt/allazt.htm
Aids patients have a right to do more than refer to these 2 surrogate markers for all or any major or minor decisions about health.
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Just to comment on LindaS’s story – regarding your worsening healt after quitting the medications cold turkey, maybe this could be the explanation – http://exlibhollywood.blogspot.com/2009/05/has-sustiva-solved-hiv-mystery.html
Myself I really don’t know, I’m just an observer who discovered the whole HIV/AIDS hoax few weeks ago and has been reading a lot recently. These stories here tell an stories about the amazing strength of human spirit in the face of immence challenges. I hope you all get better.
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