By Christine Maggiore
To mark the fifth anniversary of my accidental involvement in alternative AIDS work, I am sharing some of the reasons why I continue to pursue this challenging path. The following letters represent a tiny fraction of the messages that arrive daily through this column and the Alive & Well web site.
Alive And Grateful
I am 31 years old and for the last 13 years, have lived with an HIV-positive diagnosis. I did so without question and mostly without hope. I have taken my meds faithfully for the past five years and until recently, never questioned them or their validity. I guess what changed my mind, or began to cause a change, was the fact that at the beginning of the meds, I was healthy, and although I had a “high viral load,” I felt fine. I always had. However, as I stayed on the meds, my health began to slip. Insomnia, a feeling of physical unease. I brought my concerns before my doctor who suggested I see a psychiatrist!
When I moved and changed doctors, this one stated that despite my good health, I should take more drugs, because everyone is taking three, not two. So I started on Combivir twice a day. My T-cell count went up, but so did my viral load. This renewed my skepticism. Then ironically, on my last visit to his office, there was a magazine with an article about your organization. This caused me to be curious, visit your site and buy the book.
I am so thankful for you and all the others who have researched this and offer a voice of pragmatism in a world of fear and over reaction. I have decided today to flush my meds and begin to take care of my body naturally. I miss feeling like myself and hope the old me will return, the strong happy me. Now I have real hope. Thank you Christine for not backing down and for being there when I needed to hear I could do it.
May God bless you and keep you close.
I just want you to know that you were the one who has brought me out of the depths of despair into the light of hope. My life thanks you. Tonight there is a meeting of HIV positives in my town. All of them are taking drugs. My heart tells me I should give them the information about the other side of the story so they can make an educated choice.
I have been an AIDS activist for a while and certain things didn’t add up to me. I looked over your website and now I know why. I plan to spread the word of your work and refer people to your organization. Keep up the good work. I will try to do my part.
I am an HIV-positive woman diagnosed four and a half years ago. Since then, I have been an AIDS activist and spokesperson — my life story has even appeared on MTV. I tested when I was 24 years old and started treatments six months after testing. My body has completely changed shape since I’ve been on the drugs. I lost all the fat in my arms and legs and have veins sticking out everywhere. My waist has disappeared into a thick trunk and I have experienced memory loss, diarrhea and blood in my bowel movements.
I felt I shouldn’t be taking the drugs but never unearthed any alternatives. I always felt certain I was healthy, but fear exists, too, and so does doubt. Everyone has been telling me I will get sick and die.
I just read your book and stopped taking the medications immediately. Surprisingly, every single one of my family and friends, including my boyfriend, heartily supported my decision. It made me wonder why no one said anything sooner. I asked my doctor if she would support my decision. She looked at my numbers and said she would not have started me on the treatment four years ago if I had come in today. 20/20 hindsight she called it.
Thank you from the bottom of my inquiring mind. Thank you for your
courageous presence and commitment to get the information that you’ve
discovered out there.
I just finished reading your column and it has left me speechless. I have lived with a positive diagnosis now for six years taking several medications twice a day — very costly medications. I honestly never questioned my doctor but couldn’t tell you why I am on the medicines I am. I’ve never been sick and have always felt healthy. Except for those days that I cough and think to myself “this must be it.” I just accepted my doctor’s diagnosis and what my doctor says. I want to begin learning so that I may decide what’s best for me.
On November 3, 1987, I got the results of my HIV test and it was positive. I entered the county health department’s Early Intervention Program and spent many years having my blood drawn every three or four months. I watched my T-cells hover around the 350 range without any significant change one way or the other. I watched many friends go from negative to positive and go on AZT. They are now dead.
I had already decided that if doctors recommended I take the new “cocktails”, I would refuse them just as I had refused AZT many years ago. Again, I was watching as people on the protease inhibitors experienced the side effects.
I am 64 years old. In June, I went to Ireland backpacking and walked across the Gap of Dunlow — a considerable feat given my age and that I was keeping up with 30 year-olds. It’s been over eight years since I’ve had a cold.
I have felt very much alone in my stance because up until I read about you today, I didn’t know there was any organized effort that counters the medical and drug professions concerning the HIV=AIDS formula. Keep up the good work. I am copying this e-mail to my gay friends all over the world.
Good health through better living — without chemistry!
Ed Sherbeyn, San Diego
When I read about you, I was so angered by what you had to say. I Fed- exed a copy of the magazine to my friend who has a radio show and he was so provoked by the articles he dedicated an entire week of programming to HIV and AIDS. He decided he wanted to have you on the show and I decided if he did, I was gonna tear you apart. I wrote for a copy of your book so I could be informed before I tore you up.
After reading less than half of your book I concluded I could not tear you up. You were making sense. And I now find myself questioning everything I have been told. I hope to talk to you soon and go to one of your support groups. I am seeing my HIV doctor today and he’s going to get an earful. I have placed a link to your website on mine.
Thank you for supporting different ideas and making me angry enough to
rethink my own position.
I went for a pregnancy test and was given an HIV test at the same time. My test came back positive and I was told to take Combivir. I am 31 years-old and very healthy. I am a grad student and plan to attend law school. My partner and the father of my 10 year-old daughter (who is also the father of my unborn child) tested negative for HIV. The nurse who gave us the results was very short with me and dismissed my very intelligent questions.
I was unaware of alternative views of the HIV/AIDS paradigm. But now I
am, thanks to you.
ALIVE & WELL Alternative AIDS Information Network (the organization formerly known as HEAL Los Angeles), offers free information, free meetings and classes challenging the HIV-AIDS paradigm. Call toll-free for details (877) 92-ALIVE.
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