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Ed Sherbeyn
Hi! I'm Ed Sherbeyn and I've been a member of HEAL-SD since September 2000.
I was diagnosed HIV+ in November, 1987 and have never taken any of the
so-called HIV-related drugs and I'm still around, healthy, older, and still
alive. For twelve years I just went about the chore of living, waiting for
the dreaded Grim Reaper to come and get me under the assumption that if the
devil don't get you the Fatima will. All the while I couldn't figure out
what was wrong with me - I wasn't sick or dying. Then after finding out
there was such a thing as an "AIDS Dissident," I found the reasons why I was
staying healthy. No drugs, for one thing. You can read the adventures of my
life after being diagnosed HIV+ in a more lengthy version below:
November 3, 1987: My Big Day!
That's the day I walked into the counselor's office of the Health Department of the County of San Diego, California. He invited me to take a seat, opened my folder, reached out for my hand, and with the saddest look on his face told me that I had tested positive on the HIV Antibody Test. I smiled back and said, well, then that means I don't have to take the test over again. Quizzically he asked me what I meant by that. I told him that quite frankly with the lifestyle I had led all my life, had I tested negative I would have asked to be retested. Looking back, I think the shock on his face came from the fact that nobody had ever received the news that they had tested positive in such an accepting way.
Ah! Another challenge in life to face! How am I to survive this -- if in fact I am to survive?
I was referred to the Early Intervention Program at the County of San Diego and from that day forward I was "Edward #062". I was assigned to one of the most lovely, loving, caring people I think I have ever met, a nurse who would for several years handle my caseload, Carole Norman.
In addition to having my blood work analyzed four times a year to see how the status of my T-cells were doing, I attended four or five group sessions where the newly positive-tested people would receive instructions on proper diet and nutrition and how to change our lifestyles to accommodate our newly found status of HIV+. Every quarterly visit thereafter as well as having my bloodwork drawn,
I talked to a nutritionist and a psychologist, discussed methods of safe sex, and reviewed how I could lessen unneeded tension in my life.
Of course, right at the get-go, I was offered the opportunity of taking AZT, the drug "du jour" for the treatment of HIV/AIDS. I had seen how so many of my friends fared taking the drug that I decided that I would forego this AZT stuff. I felt fine. They certainly didn't. If they didn't have one problem one day, they seemed to have it the next. Besides, I had something else going that I didn't want to mess around with.
I knew my liver was in pretty poor shape from being an alcoholic for 33 years, and I didn't want to tax my liver beyond its limits by having it have to process the
drug AZT.
I finally started on my road to recovery from alcoholism in January, 1986. On Super Bowl Sunday that year I did my normal routine of while driving home from work drinking three beers. I stopped at my favorite bar, had five or six more beers and watched part of the game. I then left, bought a 12-pack and went home to finish watching the game. By the time the game was over my beer was gone and it was all I could do to make it to bed, fully clothed. I woke up during the night and had, for the first time in my life, lost control of my bowels while being passed out. The stench was beyond belief. I knew it had to be the smell of liver bile.
The next day, Monday, I returned to my favorite bar at noontime to get one of their super hamburgers and a beer. I couldn't drink the beer. I couldn't even bring the bottle up to my mouth, the smell was so repulsive. That was was Day One of my sobriety. I knew right then I had to make a decision -- continue drinking and die, or live without alcohol. I thought it might be kinda neat to see my 50th birthday on April 11, which I had never really believed I would ever see.
At about the same period of time when I smoked marijuana I would first get the chills so badly that I would almost convulse. I would hop into bed and cover up with all the blankets I could find, but I couldn't stop shivering. When I finally did, then I would go into sweats. The third time this happened to me I had the foresight to grab a thermometer. When I had the chills my temperature had fallen by three degrees. When I started sweating, my temperature had risen to 3 degrees above normal. For two days after I would be so worn out I could hardly drag myself from my bed to the bathroom, let alone trying to eat or work. I knew my body was trying to tell me that it had had enough.
Now, nearly thirteen years after being diagnosed as HIV+, here I am still alive! And well! All my friends who took AZT and all the subsequent drugs have either been dead or are suffering from side effects of the drugs. During the first year of my finding out I was HIV+ I took almost every vitamin and herb I could down. I spent a fortune on them. But nothing ever happened to my T-cell count. One time they would be up, another time they would be down, but nothing ever very significant.
So I quit those too.
About three years ago my nurse at SDCHD, Carole Norman, went into retirement. I transfered my caseload to the Owen Clinic at the University of California San Diego. My files were sent to them from San Diego County and for the very first time I was given a viral load test. Negative. No replication of the virus could be found. So instead of being assigned to a doctor (since at that time they saw no need to recommend my getting on the "majik cocktails" of protease inhibitors), I was assigned to a doctor's assistant, Kathy McCormick. Well, she proved to be a pretty good substitute for Carole. She is really a very caring, loving person, too.
After two years of quarterly visits one of the viral load tests did show up finally with "negligible" postive findings. I did some thinking. Why am I doing this? Why am spending four and five hours sitting in a clinic waiting room just to be told that nothing was happening since my last checkup? Besides, I had already made up my mind that if they ever did say that it was time for me to take any of the protease inhibitors I would not take them anyway. So I simply stopped going.
It was not until August 28, 2000, when I read the cover story of Newsweek - a scathing article on Christine Maggiore of Alive & Well, Los Angeles, entitled "The HIV Disbelievers" - that I was not alone in resisting taking drugs for my HIV+ condition. I looked Christine up on a search engine on my computer and emailed her asking if there was an Alive & Well Chapter in the San Diego area. Within hours she had emailed me back telling me that no, there was not, but there was a similar organization called HEAL (Health * Education * AIDS Liaison). I contacted the local founder, Mark Conlan, and he told me that the next monthly meeting would be September 19. I went. I was home! This was just what I needed. I used to feel like I was out here in the world alone; now I know that the suspicions I had harbored on my own were in fact widely held beliefs. I knew and had heard that there were many people who were considered to be "long-term survivors", but I had no idea that they were ORGANIZED!!!!!
Now, approaching my 65th birthday (April 11, 2001), I have a whole new meaning in my life: to tell others my story. I'm surviving and I'm HIV+ and I don't take any drugs!!!! Not only that, but I'm alive and well, and I'm working hard doing part-time work to supplement my Social Security Retirement Benefits. And I'm never sick. And it's been eight years since I've even had a cold!
I'm volunteering my services with HEAL - San Diego. On Sunday, October 1, 2000, I started by leafleting the San Diego AIDS Walk and 10K Run. I helped to distribute literature and talked to folks. If I can reach one person each day and inform them about the HIV=AIDS=DEATH myth, then I have spent my time fruitfully.
People who volunteer their time by counseling people who are HIV+, people who devote their time and energies in helping to raise money at AIDS fundraisers -- these are my family. They are truly devoted and are caring, loving people who want to help in the best way they know how. Many of them have had lovers, friends, relatives who have died from what they believe to be AIDS. They firmly and emphatically believe that their loved one's life was prolonged by taking the drugs simply because they have bought hook, line and sinker all the propaganda that the drug companies, the government and the popular press has spread about. They have accepted as fact the conclusion that HIV does in fact become AIDS, and that AIDS does result in DEATH. For many people, to even question that premise is dangerous psychologically for them.
It's a very difficult thing for someone to admit that they may have been wrong all along, that they contributed in some way unbeknownst to them at the time to their loved one's death by urging them to take the drugs. I can relate, being an alcoholic, to their situation. They are just not ready to admit to even the possibility that they might be wrong. Until such time as they are ready, they must be handled gently, and with love and care. They are guilty of nothing. They are at the most guilty of one thing, and one thing only -- they didn't ask questions! They accepted as fact what higher authorities had told them. They are going to have to hear over and over and over again that they've been duped by the profit-making drug companies into believing that something is fact when in reality, it is not fact. Someday they may listen, but it will not be until they are ready to listen. Some may never listen.
I know of a mother who was in a car accident and her four-year-old son sustained injuries to the point of having to have blood transfusions. He was tested afterwards and it was discovered he was HIV+. Here was a woman who was in the state of panic, of feeling the depths of guilt, feeling it was her fault that her son was injured so badly in the car accident because she was driving. Now she is being told by the doctors that her son has to immediately start taking AZT or he will surely die. Can she say "No! I won't allow him to take those drugs!"? She can't. The pressure is on. She is being told if he doesn't take the drugs he will die. And then she will have one more thing to feel guilty about. She succumbsto the pressure, and he starts the drug regime. Her son died at the age of 13 never having attended formal schooling. He'd been too sick with one thing and another and never had any more than two or three days in a row where he felt good at all. Through all this her doctors kept reassuring her that the drugs had allowed him to live longer than he would have ever lived had he not taken those drugs. Now she has no son, but she also has no guilt, because she has been led to believe she did the right thing. How can this woman all of a sudden admit to herself that the drugs were responsible for son's death? Nearly impossible, because all of a sudden she would start having those guilt feelings again, that she, after all, had done the wrong thing by allowing him to take the AZT. It's difficult for her to hear that her son would be alive and well today, be in college and possibly on the football team, dating, and leading a normal life. It's something she is not yet ready to admit -- that she is not guilty -- that she has been duped. Will she ever be able to change her outlook? Maybe, maybe not. But I would tend to believe that only when she can do so without feeling the pain of guilt, will she do so! In her own time. In her own way. In the meantime, she needs to be treated with the utmost respect. After all, she did do what she felt was right at the time given the circumstances in which she found herself.
I have anger at what has been and is happening regarding this "AIDS" crisis. But there are deeper feelings within me that takes precedence -- sympathy and empathy. From these feelings comes the realization that we are all victims! As such we need to love each other and find a way to support each other with kindness and not meanness. I have the same common goal as those who support AIDS fundraisers and those who volunteer their time to help those people who are facing the immediate crisis of being diagnosed as HIV+. But my method is different. My method is trying to educate people that they are being fed a pack of lies by profit-making drug companies and politicians and the popular press.
I firmly believe the HIV-related drugs are killing people. There is not one shred of evidence that supports the premise that the drugs are doing anything other than killing people. People must learn for themselves how to take responsibility for their own lives. ASK QUESTIONS, A LOT OF QUESTIONS!
If after exploring for yourself all of the possibilities, all the pros and cons, you still maintain that you are right -- then you must act accordingly. I urge that you not accept as truth ANYTHING unless you have personally educated yourself to all sides of the argument. Then come to your own conclusions and decide what is best for YOU!!
I am not alone in continuing to live healthy without drugs. Why are so many people dying after taking the drugs?
Ed Sherbeyn 10/2000
2002 UPDATE:
I have taken two major vacations since writing the original My Story. In April 2001 I went back to Ireland for the second time and spent three weeks traveling by car counter-clockwise from Dublin into Northern Ireland and around to Galway and then to Cahersiveen where I climbed Skellig Michael, a real challenge for a 65-year-old. From there I continued on to the Rock of Cashel where I had this picture taken of me in my ACTUP-SF sweatshirt. Then on to Dublin and home.
Just before departing on this trip I noticed I was having urinary problems. By the time I got home it had become quite severe. While I was in Ireland I celebrated my 65th birthday and when I got home I was fully qualified for Medicare. I had elected to pay additional coverage and have Kaiser-Permanente as my HMO so I called them when I got home and set up an appointment to have a first interview with a primary care physician. Under Kaiser's plan, you choose your own primary care physician and at any time for whatever reason you can change to another physician.
After we had introduced ourselves I immediately told him that I was there to hire him if he met my criteria. He was very attentive and curious. I doubt seriously that he ever had anybody quite approach him in that manner before. I told him I had been diagnosed as HIV-positive in 1987, that I had been watched in the Early Intervention Program for about ten years and most recently had been a client at the Owen Clinic but had not been there for quite some time. I told him that if I were to hire him he would have to agree to my terms which were that I would never submit to having blood drawn for any kind of workup pertaining to HIV or AIDS. No CD4 counts. No viral load tests. I told him I wasn't one bit interested in my t-cell count nor viral load, because no matter what the results of those tests were I would never take any of the drugs associated with HIV and AIDS. Secondly, that if ever during our doctor/patient relationship I came down with anything that required drugs that we would first explore together alternative means to drugs. I would take drugs on a last resort basis only. And last, that I be treated just as any other old person is treated irrespective of my HIV status, as a person who's body was just naturally wasting away with age.
He first told me that he totally disagreed with my stance on the HIV/AIDS issue, but that he would be happy to be my primary care physican and abide by my wishes.
He sent me off to have an urinalysis done and it confirmed that I had a severe bladder infection as well as an enlarged prostate gland. He said that because of the severity of the infection there wasn't time to explore alternatives and prescribed an anti-inflamatory drug which cleared the problem up within three days. I've had no problem with my bladder since that time.
For my enlarged prostate gland he told me to start taking Saw Palmetto with Pygeum and it has worked wonderfully.
On September 9, 2001 I arrived in Casablanca, Morocco for a 12-day vacation tour. I was in Rabat on 911. We were due to arrive back in San Diego on 9/20 but didn't make it until 9/23. The people of Morocco were hospitable to almost an extreme. We couldn't have had a worse tour guide had we prayed for one. There were ten members of the tour, all American, and five of them can at best be described as "Ugly Americans". (The lady in the picture with me was one of the exceptions.) I will go into no details other than to say it reconfirmed every worst expectation of what a tour can be. That's why I prefer to travel independently and will continue to do so.
For over a year I have had some very minor problems with my right leg and foot. Finally just before Christmas 2001 I suffered from a self-diagnosed pinched sciatic nerve, pains running from my lower right back down through my hips, leg and foot. Even though it went away after about a week the pains and problems in my foot would come and go. Finally a swelling occurred and I made an appointment with my primary care physician at Kaiser to have it checked out. Wednesday, February 6 I had three xrays taken and am now awaiting word as to the outcome of the xrays. If necessary I will be referred to a podiatrist.
When the nurse called me in from the waiting room to give me the blood pressure test and take my temperature she started in on me. "We have your file earmarked for a pneumonia shot today," she smilingly said. That was the last smile out of her for that visit. I told her she could earmark my file to her heart's content but that she wasn't going to get near me with a needle. She became very indignant and told me that I was making a dreadful mistake, that I could catch pneumonia and die. I assured her I was fully aware of the consequences of pneumonia but that I would cross my bridges when I came to them, and right now that involved taking a shot, not pneumonia, and I was refusing her offer. Now she got really indignant! "Take MY word for it," she says. "No, thank you, I will not take your word for it. I have my own sources of information which I refer to and your word isn't good enough for me."
She slammed my folder shut, curtly told me to follow her to the examination room, slammed my folder down on the desk, and slammed the door as she exited. Authority does not take it lightly when you defy them. I'm not what you would particularly label a "good patient" which is equivalent to a being a "good child" in authorities' estimation.
I think the nurse had cornered the doctor before he came in to see me because he wasn't exactly friendly either, at first. But I just "shined him on" as he examined my foot. I shared with him Bette Davis' assessment of growing old: Growing Old Ain't For Sissies. Well, by the time we left the examination room he was all smiles and relaxed.
On another front, I've been quite active with HEAL San Diego pamphelting and carrying a sign in front of the Gay and Lesbian Centre in San Diego on the days they offer free HIV testing. The sign reads "BAN THE HIV TEST". That gets their attention. Then we hand them the literature "Should I Take the HIV Test? Informed Consent" which includes a copy of the disclaimer on the HIV Elisa Test Kit which reads "At the present there is no recognized standard for establishing the presence or absence of antibodies to HIV-1 and HIV-2 in human blood. Specificity is based on testing of random blood donors and hospitalized patient populations (serum and plasma specimens)."
The first day we were at the Centre a local TV station covered our event for their 10PM broadcast. The Gay and Lesbian Times sent a reporter who did a very good writeup in the following issue. But the Editor decided to get into the situation and published an editorial riddled with errors and false assumptions as to what HEAL and dissidents in general were all about. The following two issues contained letters from both members of HEAL and from some people supporting the GLT's position on our picketing the Centre on the days they gave free HIV testing. [Click here for transcripts]
Each week the GLT takes a poll. The same week that the article and editorial appeared the poll read "Should HEAL SD have the right to picket in front of the Centre on days on which HIV testing is being performed?" To me the frightening thing was that 40% of the people responding thought we should not have that right. A basic Bill of Rights issue, and 40% do not support the Bill of Rights protections! No wonder it was so easy to pass the Patriot Act! I am frightened that so many people do not believe in the right of free speech.
Well, you are now up-to-date on what's been happening in my world.
Best of health to you all! May the wind always be at your back!
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