Living With AIDS Naturally
The Real Heroes
A Gary Null Production, 1994/2008
PETER HENDRICKSON, PhD, Author of “Alive & Well: A Path for Living”: I’ve worked with people, who have 700 T cells, and their health isn’t compromised at all; and they’re miserable and all they can think about: “What’ll happen if I become demented? What’ll happen if I lose my health insurance? What’ll happen if I lose my job? How will I tell my mother? How will I do this?” And life is totally cheated.
GEORGE, HIV Positive: The most important thing is I feel some hope. I feel like it’s not a death sentence. Because that’s what I felt I had, until I started doing this on my own; and, probably, the thing that makes me the most angry is that my doctor still denies that this can work.
MALE: I would say the quality of my life is better today than it was 10 years ago. I think I’m more focused. I have more energy. I see with more purpose to my life. I don’t. I don’t really get depressed a lot.
JOHN CACCAVALLA, HIV Positive: There is one thing that I want the whole world to realize is that HIV is not and AIDS a death sentence. I am living proof of that, and there are many, many, many friends of mine, and a whole subculture of us, that are just fine, with no T cells. So it is not a death sentence. It is one door closing and a window opening.
GARY NULL, Ph.D.: I’m Gary Null. There have been many documentaries and films, including the very popular movie Philadelphia, that give pretty much the same story about AIDS. HIV equals AIDS and that equals death. Those are all very unhappy endings; but there are many individuals challenging that notion. In fact, as you will see, individuals, who had full-blown AIDS, many right near death, today they are alive and well; and they’ve used natural techniques. This is their story: Living With AIDS Naturally.
GARY NULL, Ph.D.: One can only imagine the horror of getting a test result that says that you’re now HIV positive. For most, they would equate that with AIDS and a death sentence, but not everyone. For many, the HIV positive test has taken them on a unique journey, a hero’s journey, overcoming obstacles, as you will see, with a very unique perspective.
CHUCK DEMARCO, Long Term Survivor: In 1988, I was first diagnosed with the HIV virus, and by 1989, August, I collapsed at work. I’ll never forget that day. Taken to the hospital, etcetera, to find out that my immune system was on a downward slide. By 1990, I had a cough that had gotten bad enough that I was coughing up blood. I had KS lesions on my thigh, in my mouth, down my throat, hairy leukoplakia, etcetera; and the doctors were telling me, based upon that, especially, from the cough, that I would be dead, probably, within a year.
JAMES SCUTERO, HIV Positive: In February of 1990, I was diagnosed as being HIV positive, in Hackensack, in a clinic in Hackensack. The clinician was very cold about telling me this. I really didn’t hear what the implications were. I just thought I was going to die.
JOY, HIV Positive: The doctor called me. She says, “I have bad news,” and I says, “I thought my lover was infected.” And they said, “No. You are.” So that was kind of a shock. I was always tired. I didn’t know what was going on. I have Epstein-Barr virus and I have hepatitis A, B and C and every other thing.
JOHN CACCAVALLA, HIV Positive: There are so many stages to this. You know. The onset of diagnosis is depression. There’s anger. There’s hatred and fear. “Why me? How could this happen to me?” And what happens is, you know, your disease becomes bigger than you are and then you’re in trouble. Because you start watching AIDS movies and reading AIDS books and your negative friends don’t want to deal with you anymore because it’s now consumed your life, AIDS.
GLORIA, HIV Positive: I found out about a year ago that I was HIV positive, and it was one of the most devastating, unreal experiences that I had ever had. Because I, also, at that same time, turned 50 and, somehow, it just didn’t seem to go with my life or me and who I was; and I had to bring back into focus everything about who I was and what I was going through, in terms of not only my age, but my health and all those factors seemed to combine.
The Price of Testing Positive
PETER HENDRICKSON, PhD, Author of “Alive & Well: A Path for Living”: I know a minister in Texas, who’s continually being harassed just for running a home where people have AIDS and people with HIV. They go to a church picnic in Ohio and are told, “Don’t bring any food to the picnic, unless it’s cellophane wrapped and we want to make sure that the cellophane is on it, when you show up.” So the hostility that exists, in our culture, towards the people with this virus is, for many of us, in these urban areas we’re quite protected, but out in the nation, at large, it’s a very difficult situation.
CHUCK DEMARCO, Long Term Survivor: The fact is that there are those of us that now can’t get life insurance and can’t get mortgage insurance. Are being discriminated against because of the fact that we were diagnosed as having a disease and we could live, now, for 50, 60, 70 more years; but, because of the fact that maybe we went out on disability or whatever, we were diagnosed as having that disease. We cannot do anything about it. I can’t get a mortgage because of it.
RAFAEL, HIV Positive: I’m colonized with a pseudomonas and I’ve had this for about 15 years, way before the HIV, and that’s the only problem that I’ve had other than, you know, I keep getting infections because I’m colonized. Just recently, when the CDC expanded the definition of AIDS, now I have AIDS. You know and meanwhile I’ve been dealing with this for like 15 years.
JOHN CACCAVALLA, HIV Positive: I’m a retired chef. I lost my job because of my disease. I don’t even want to say disease because of my illness. My lover didn’t want me anymore. I live very, very well. I lost my job and my lover. I had to move. I moved twice in six months.
JAMES SCUTERO, HIV Positive: I found a woman and spent some time with her, and she tested positive after me, and we split up because of that and I lived on West Harlem. So here I am. I went from President of my own corporation, in New Jersey, to a bike messenger living on 136th Street, with rats and with a broken leg – well broken knee cap, and living on $400 of disability. Because, as a bike messenger, I was an independent contractor and I had no means of employment. So I started digging in the garbage for five cent, nickel deposit cans, out of the garbage, and took to refund them to supplement my income. Being totally healthy the whole time, despite a broken leg, and I thought I was going to die.
MICHAEL ELLNER, Director of H.E.A.L.: What I tell people is, as painful as it is, I think you have to be honest. I don’t think that you can hide your situation from anyone. Not only is there a legal requirement to tell people what’s going on, I think and, personally, you get better when you start telling the truth. I don’t see how someone can have a major recovery, when they’re secretive about what’s going on, and they’re hiding this stuff. I know the risk is isolation and rejection and horrible things, but anyone who really cares about you will stand by you. And the people who walk away, who the hell needs them? You’re better off without them. That’s my opinion.
The Standard Treatments of Choice & Their Effects
PATRICIA, HIV Positive: I was referred to a doctor, who advised me to go on AZT, immediately, because if he could keep me alive for three years, he almost was guaranteeing me that there would be a vaccine. I did go on the medication and I had no side effects. I handled it well, but I just was. Something in my body was telling me not to take it. Don’t take it and it wasn’t political. It wasn’t anything that I read. It was just a feeling that I had, and I did discontinue taking the medication and my T-cells remain up there around the 1,500 range.
JOHN CACCAVALLA, HIV Positive, at Press Conference, General Media, December 1993: Upon my first diagnosis I was given a prescription of 1,200 milligrams a day of AZT, which now, by the way, we realize causes horrendous things, in the body, and that was it. So I did the nucleoside run. I did everything they told me to do. Everything made me very, very ill. Now, when I first got to the doctor, I really wasn’t that sick. Then I started getting sick and I said, “Well this cannot be right. My body does not want this.”
THERESA, HIV Positive: When I first was diagnosed, the doctors we’re like, “Well I want to put you on AZT,” and I said, “No. I don’t want to do that. I want to live my life. I don’t want to die,” and I feel like I’ve made the right decision.
JAMES SCUTERO, HIV Positive: I was surrounded by three rubber-gloved, white coated clinicians at Bergen Pines Hospital, in Bergen County, New Jersey and was told that early intervention was of extreme importance. That not doing anything was folly. Well, after protesting about three times, in a row, I bolted out of there and prepared to die.
JOY, HIV Positive: When I started taking it, I broke out with herpes inside my mouth, inside my nose, all over my lips, and it was like very. All I wanted to do was sleep. I didn’t want to get out of bed. I had pains. I knew, going through the detox of drugs, my body well enough to know that AZT, after several weeks, was horrible for me.
KENNETH, HIV Positive: I am taking AZT and I’m taking Acyclovir. I don’t like it; and that’s what brings me here to come back to the fundamentals of taking care of my body and my mind together.
PETER HENDRICKSON, PhD, Author of “Alive and Well: A Path for Living” It wasn’t until ’89 or so when this really shaky research, I felt, came through saying that, if your T4 cells have gone below 500, you should be on AZT; and the implication was that people, who chose not to do that, were being irresponsible.
JOHN CACCAVALLA, HIV Positive: Everything they had given me didn’t work and they gave me a new name. They labeled me nucleoside-sensitive. So there’s a genre of us that are nucleoside-sensitive. So what do you do now? You know. I can’t take their drugs. My body didn’t want their drugs. You see but that was fortunate. That I really took that, as a good sign, and I knew and this is my advice to just everyone. Take control of your treatment. Educate yourself about your body. It’s your body. They don’t know how you’re feeling. They don’t know what’s going on. All of the medication in the West, you know, it dissolves you in one part of your body. It may help you in another.
DAVID, HIV Positive: I started getting sick around 1985, after I was exposed to defoliants, while in service. I got two tests done. Both were inconclusive and then it came down in a series of about 12 different opportunistic infections: thrush and candidiasis and what they thought was KS and three bouts of PCP pneumonia. Those who tell you that you can’t survive PCP pneumonia are full of crap because you can. You just can’t take cortisone when they offer it to you or Pentamidine. And I was lucky enough to be in ACT UP, when ACT UP still had some muster and anger to it, back in ’85 and ’86; and I started taking a look at what was going on at the NIH and the CDC and flipped out and was scared out of my mind because there’s nothing coming down the pipeline from them.
MICHAEL ELLNER, Director of H.E.A.L., at Protest Against FDA Policies: The people, who follow the advice of the so-called experts, the doctors, the AIDS expert, they get sick and die. It’s almost 100%; and, yet, wherever you find pockets of long term survivors and people, who are at risk and staying healthy, they’ve taken charge of their health.
KENNETH, HIV Positive: None of us anticipated the AIDS epidemic. By 1984, all of the friends that I knew and loved had died and I was still around.
DEAN, HIV Positive: From the experience of my friends, who have died having used AZT or any of the other pharmaceuticals that doctors love to prescribe for AIDS, I’ve also read a lot of information about AZT. I understand it’s very toxic. I would never take it. God willing, I will never take AZT.
JOSE PADILLA, Companion of AIDS Patient: I would say that approximately 70 to 75% of my friends are no longer around. Four years ago, I had perhaps one close friend. I’ve always been very gregarious and I always had a good support of friends; and for three years, up to four years ago, I was stripped out of all my friends because they all died. So, on and off, I’ve known, probably, like about 15 people. That’s a lot of people for one person to know to have died of this illness.
The Turning Point
LARRY, HIV Positive: I felt, when I first was diagnosed, that this was a signal, for me, that I really had to change my life and that I didn’t have a choice anymore.
MALE: I made a decision that I could look at this as being a victim or look at it as another one of life’s adventures; and I decided to look at it as an adventure.
PATRICIA, HIV Positive: When I was diagnosed, my first reaction was nausea and then the next reaction, I can honestly say, that was a feeling that I am not going to die. I am not going to let myself die. You know if there’s anything, at all, that I can do to contribute to my being healthy and my future, then I was going to try and find out what it was and do it.
DAVID, HIV Positive: The first change I made was I dealt. I faced death. You know more than once with drug overdoses and such, but I decided that I really wanted to live. In doing that, I’ve decided to do anything and everything that was possible to make sure that my life would be full and that I would enjoy the moment because it was too precious.
PETER HENDRICKSON, PhD, Author of “Alive & Well: A Path for Living”: How do you help them find people, who may have not tuned into their own inner voice, their own power, their own spirit, face this challenge? And I don’t think there’s any question that marshalling the forces of the immune system, marshalling the will to live promotes health. People might just challenge it, but I, personally, can’t. There’s just too much evidence of people just getting a grip and commanding their lives and living longer and making something of the challenge, as presented by AIDS.
JOY, HIV Positive: I decided in 1991 of January. I’ll never forget it. I changed my doctor that insisted on me taking AZT because that’s what they told them; and I changed that and I changed a lot of things and I took my own power back.
RAFAEL, HIV Positive: I started doing a lot of reading, as far as reading my own bloodwork, so I knew what questions to ask my doctors. Many of my doctors got frustrated with me. They would tell me they’re the authority. That they know that not to get caught up in this, but I always wanted to know and I fight quite a few doctors.
DAVID, HIV Positive: I came to heal and thank God, for Mike, because I started calming down and I started realizing that getting arrested every week or so, with ACT UP, wasn’t working and that, if I stopped being so panicked, I could start taking control of this.
MICHAEL ELLNER, Director of H.E.A.L: Clearly, over and over again, people come to our meetings and say something very similar to what he said. “I’m feeling better than ever. AIDS was the best thing that ever happened to me.” When I heard that the first time, it gave me a headache. I couldn’t understand how someone can say that; but then you hear it over and over again and you carefully understand what’s being said. What’s being said is that people were empowered. They took charge of their lives. The whole way of living it’s more than simply their health but their whole relationship to their life is changed; and it’s one where they’re ready, willing and able and reliant on themselves to do whatever they need to do.
On The Path of Living
GARY NULL, Ph.D.: How does a person with a life threatening illness get through a day? What goes into the formula to help them stay alive? Let’s take a look up close.
PATRICK DONNELLY, HIV Positive, Coordinator, Whole Foods Project: After I started to recover, from my initial confusion and fear, of finding out that I was HIV positive, I said to myself, “Okay, now it’s time to get serious and really explore ways of taking care of yourself the best way possible.” And I really you know. I was an addict, drug and alcohol. I did everything I could to get out of my body. So everything that I’ve been doing since then has been to try to get into my body; and I do that with exercise, meditation techniques that involve breathing, anything that sort of brings me into the moment and back into my body. I put together a little ritual that I try to do, as often as I can, in the mornings. It’s pieces of Tai Chi and yoga and a Chinese exercise system called the 18 Therapies plus a little meditation; and I feel so different after I do that in the morning. It’s incredible. It sees me through the whole day. I, also, try to connect with nature, as much as I can. It’s very difficult living in the city, but I’m fortunate to have a garden, where I live in Brooklyn; and I love to just get out there and dig in the dirt and look at the worms and see the growing things. It helps to remind me of the cycles of life and, when I can, I get off into the forest and there the cycles of things are so obvious and so beautiful. I try to connect with that and try to connect with the life force in everything that I see.
JOHN CACCAVALLA, HIV Positive: AIDS, for me, is truly a wakeup call. Physically, it made me take care of myself. I stopped smoking. I stopped drinking. I stopped doing drugs because I knew I would die, if I continued that way. It made me very aware of my body. You know and then that’s the physical component. The spiritual dimension of what AIDS has done, for me, has really put me in touch with my center, my higher power or whatever you want to call it. It works. It’s powerful. You know and then, emotionally, after all the depression and all the suicide and all the initial heartbreak of losing people you love, it’s made me stronger. I think you need to wake up with a positive attitude. Clear your mind and, basically, acknowledge that you’re alive and you’re well. All of this is to center me, for the day, because when you leave that little area that you live in, you have to deal with out there. You have to constantly be reminded you have AIDS. Be reminded that you’re sick. You’re ill. So if you walk out of the house thinking I’m not well. I’m fine. I feel good. So my meditation enables me to maintain that. Actually, I practice Qigong, which is a form of Tai Chi, as well as Tai Chi, on different days. You shouldn’t do them all too close together so Qigong, which is a form of Tai Chi and yoga. Yoga which is very strenuous, it is hard so I don’t do as much yoga, as I really feel I should. I have my herbs. I have my teas, which I make in advance so they’re ready in the refrigerator; and that I will warm up and that is prescribed to me by my Chinese doctor and you know. I go through the necessary preparation of them. So I store them and then I add my own little things to them. I currently am cleansing my liver. So I’m working with products that are powdered form and I add them to his tea, as well as a T cell builder, a thymus builder, basically. I mean it’s a composite thing. You know you have to keep your mind in shape. You have to keep your body and parts of your body in shape and spiritually, as well. I’m in deep prayer most of the day praying for the best. You know and not only for myself but my friends.
JOSE PADILLA, Companion to AIDS Patient: I’ve seen people trying to do something at the very last moment out of desperation and I don’t think that works. You have to do it out of love, out of concern, with intelligence and with knowledge. Not out of that desperation of fear because it’s not going to work. You’re going to be cramming all this other stuff into you, and you’re not going to accomplish anything.
JAMES SCUTERO, HIV Positive: I decided to go raw. Eat raw foods and vegetables, when I stopped smoking marijuana. I stopped drinking double espressos, for breakfast, and three cups of coffee all during the day. I stopped drinking soda. I stopped drinking. I stopped smoking cigarettes and what I discovered is my body started manifesting a detoxification, which because of my HIV status, would have been determined, as being Kaposi sarcoma. I started breaking out in lesions. I had the shingles, across my chest and my back. People urged me to go and take Acyclovir. I said, “No. I think this is natural hygiene. From what I know about vegetarianism and natural hygiene, and, especially, I believe I’m going through a detoxification process.”
JOAN, HIV Positive: I ate terrible things. I ate meat and dairy and junk food and a lot of sweets. Cigarettes, alcohol, drugs, everything and all of that’s gone.
JOSEPH, HIV Positive: I experimented a lot and the hardest one was alcohol, but I think I would still, certainly, be an alcoholic if I didn’t have this kick in the pants.
JOHN CACCAVALLA, HIV Positive: I actually got my diagnosis two months, after I had gone into rehab. So I was really glad I had a strong vessel to work with. That is very, very important. I mean no treatment, alternative treatment, is really effective like acupuncture won’t work at all if you’re drinking, if you’re smoking, if you just don’t have proper nutrition. The first step you have to do is cleanse. You have to purge and clean and it’s a big process. It’s a difficult process and you get sicker before you get better. That’s a lot of the issue with macrobiotics. A lot of people don’t like it and they can’t eat that way. It makes them sick. Well it doesn’t make them sick. They’re already sick. It’s just purging it out. It’s stored in your fat cells. It’s just in your body. So that’s step one is cleansing.
PATRICK DONNELLY, HIV Positive, Coordinator, Whole Foods Project, at Press Conference, General Media, December 1993: What is usually being served and recommended to people with HIV is exactly the food that is making the rest of America very sick. Only they’re urging us to eat more of it. My question is: how can the food that isn’t good for anyone else be good for people with HIV?
JAMES SCUTERO, HIV Positive: People with renal failure were given high protein diets. People with diabetes were given chocolate covered brownies, as comfort food, because this whole death cult that I like to call it is based on the fact that, if you are diagnosed positive, you are going to die. So the best we can do for you is to make things easy for you, before you’re going to die.
PATRICK DONNELLY, HIV Positive, Coordinator, Whole Foods Project: One of the things I’m trying to do, with my work teaching people about healthy food, is make people aware of resources where they can access organic vegetarian food that will help to support the immune system. I’m lucky to live near a food coop and I really love to go there and shop and take advantage of all these beautiful fruits and vegetables.
MALE: But I do watch what I eat and I eat a balanced diet. I take a multivitamin. I take a lot of vitamin C. I take a lot of beta carotene, a lot of antioxidants. I take super blue green algae.
JOHN CACCAVALLA, HIV Positive: It’s not really my style or their style. It’s the way. It is the proper way to eat and I mean, as we evolve as a race into some more passive place, it has to be reflected in our diet. Meat makes you aggressive. It just does. You have to take my word for that and you know. An aggressive diet of sugar and salt and oil and dairy and animal products is not healthy. We’ve seen that. Cancer. It’s not AIDS. Cancer is the number one killer.
DAVID, HIV Positive: So I started making changes in my diet. I started exercising and I started researching different exercises and the different things I put into my body and I come away with that anything that is natural, anything that fits in the natural order, to me, is more beneficial than anything that they can come up with, in the laboratory, like these drugs like AZT and DDI and so forth and so on.
JAMES SCUTERO, HIV Positive: What I went back to is the traditional southern Italian diet of fresh fruits and vegetables. I went to a meeting once and I heard a man speak named Matthew Grace and he gave a seminar on natural hygiene; and I found out it’s what my family has been practicing all along: fresh, clean, home grown vegetables. My grandfather built a house out in Amagansett made of cinder block, and he used to take fish from the sea and use it as fertilizer just as the Indians did. So it was fresh clean air, fresh simple vegetables – nothing complex.
RICHARD PIERCE, Director of Whole Foods Project, Manhattan Center for Living: We see food as being part of our healing modality. So, if I’m getting the beta carotene and I’m eating the cruciferous vegetables and I’m getting the calcium, I may have to supplement, but I’m not going to be supplementing, in the same way, and I’m not going to be taking the same kind of medications. So I think there are a lot of ramifications, for the cost, of this meal.
DEAN, HIV Positive: Almost immediately upon doing several different therapies, including the intravenous vitamin drips, the colloidal silver and, also, bitter melon extract and garlic enemas, I had started feeling much better. I discontinued certain drugs that I found were making me nauseous, as well. My appetite just swung into action. I started eating much better eating heathy foods, of course, a lot of raw foods and a lot of whole foods.
DAVID, HIV Positive: I started doing smart things as I went along. I started doing wheatgrass juice and vitamin C drip and I went for chiropractic care. I did yoga and I started taking Tagamet and Antabuse and naltrexone; and I was lucky enough never to have taken AZT or DDI or DDC and I threw away all the aerosols. I first got sick in ’85. I’m still here.
JOY, HIV Positive: I take IV vitamin C. A lot of doctors don’t encourage it because the FDA doesn’t approve it. I thought I was giving vitamin C drip IV too much power. During the summer, I didn’t take it last summer and I got a bronchial infection; and then, the year before that, I didn’t take it and I got another bronchial infection. So it wasn’t just a coincidence. I used to break out in herpes a lot, before I took vitamin C IV drip. I don’t anymore.
GARY NULL, Ph.D.: Why in this form, in a drip form, that takes about an hour to sit here. It’s rather painless. You just get a little needle prick in the arm and then it goes in. Why this instead of taking it by mouth, instead of taking vitamin C by mouth?
DELORES PERRI, Registered Dietician: Well you can take it by mouth and it is fine, but you’re not going to get nearly as much as this. This is going to be going right into the cell, bypassing the digestive system, and being absorbed by the cells and the tissue, which is what we need it to do. So we can attack the viruses. Because if it’s going in the mouth, you’re going to get something but not nearly what you need.
DR HOWARD ROBBINS: What we have to do is add to this bag various vitamins and minerals, depending on the protocol that a patient is under. When we’re dealing with AIDS patients, we’re dealing with people, who are severely ill, who, generally, have very low, when we first see them, energy levels; and we find that one of the major effects of giving vitamin drips is their energy levels will go up. So what we’re involved in doing then is just figuring out what is the best ratio of components to put into their particular drip bag.
GLORIA, HIV Positive: When I started taking a regimen of vitamins and herbs, Chinese herbs, one particular one called bitter melon, I take super blue green algae, vitamin B, lots of vitamin C, beta carotene, folic acid, NAC, and that’s about it.
LETHA HADADI, D AC: I want to show this store here because there are some herbs you can get that you can cook every day. This is Dang Shen. This is false ginseng. In Latin, it’s called Codonopsis, but the Chinese call it Dang Shen. So it lifts our energy up, for all kinds of prolapse problems, like chronic diarrhea, or when you feel like your bottom’s falling out. This lifts it up. So you take a handful of this, Dang Shen, and you take another handful of this, which is astragalus and it sends your army out to the fortress, out to the barrier to keep the cold out. So you’re lifting your energy up and you’re sending it out to the extremities to keep the cold air out. This is chrysanthemum. It’s very sweet and a very delicious flower. The honeysuckle is a little bitter, but you want that for killing germs. This is an antibiotic. Honeysuckle is an antibiotic. It kills pneumonia germs and staff germs and strep germs. This one is a very delicious dried chrysanthemum, Chinese chrysanthemum. It’s a very delicious tea that’s very sweet, and it takes your fever and lifts it away. So they’re both cooling. St. John’s Wort is very well known in research done in Europe. It kills the AIDS virus in the test tube, the whole herb, St. John’s Wort does. The isolated active ingredient hypericin does not. This shows us that nature makes the whole herb, the whole plant much more powerful, at times, than the active ingredient.
JOHN CACCAVALLA, HIV Positive: I feel my T cells are up now. The doubling you’re referring to came from the use of bitter melon. It came from juicing, vegetable juicing and I juice my melon. There’s many ways to do bitter melon: enema, tincture, powder, tea. I just like to go to Chinatown and buy the fresh fruit and run it through my juicer, with things like parsley. You know garlic.
GEORGE, HIV Positive: You know, ultimately, my T cell count went from below 500 to 660 and not only that I was having trouble, with kidney problems and liver problems. My kidney enzymes went from 2.2 down to 1.8 and they’re still dropping. My liver problems went completely away using Chinese herbs. I’m taking astragalus, Echinacea, and ginseng. You know a whole host of herbs like that. I’m taking large doses of mega vitamins. You know A through E, and I’m using stress and visualization already. You know reduction exercises.
TONY, HIV Positive: When I trusted my instincts I did better and my instincts had told me that the natural therapies, the vitamin therapies feel better, for me, and are less destructive to my immune system. So I started to exercise again more regularly. I take yoga classes, which make me feel wonderful. I’m going to a new doctor, who has me on vitamin therapies. I take intravenous drips of vitamin C and amino acids. I take a whole range of vitamins including Echinacea and the multivitamin and a list of others.
CHUCK DEMARCO, Long Term Survivor, at Press Conference, General Media, December 1993: A physician of mine and also that of my former business partner had seen a program on CNN about something called whole body hyperthermia. That is a treatment where the body is heated up to above a temperature of 108 degrees, which would be 42 centigrade, at which it is known, from medical literature, that it can kill certain types of cancer cells, certain types of viruses, and also, possibly, even the HIV virus. It also enhances and boosts the immune system. Prior to leaving, we had extensive bloodwork done. I had tested PCR positive, which tests for the DNA of HIV, antibody positive, P24 antigen positive, culture positive, and had a CD4 count of about 200. Today I can tell you it is 33 months later. I no longer have any of the Kaposisarcoma that I had on my thigh and down my throat. The herpes that I had in the lung that caused the cough and made me cough up blood – gone. My CMV, Epstein-Barr gone and what astounded the researchers, over at the University of Rome and here in the United States, was the fact that I went from P24 antigen positive to P24 antigen negative. I am, also, now PCR negative and I am, also, culture negative, which means that they cannot grow the virus in my blood any longer. Also, my immune system has come back up to normal. I now have a CD4 count of about eight to 900, but a CD8 count of about 2,800, which they can’t explain, and the Pasteur Institute wants to do a little work on.
MALE: The only real medication that I’m on is the Antabuse and Zovirax. The Zovirax seems to help with the hairy leukoplakia. I did develop neuropathy and that was a big problem; and I went into a study for peptide T and, as soon as I got the real medication, the real peptide T, my neuropathy went away and it really improved my bloodwork. The drug study was supposedly not successful and the drug was not going to be approved, as a result of that study, and that was very frustrating because it worked for me. So far, they say that they will try to provide me, with the medication, but that remains to be seen.
JOY, HIV Positive: I also believe. I take Gammagard. I believe in that. It made my T’s double in a matter of two weeks. My T4s doubled.
JOSEPH, HIV Positive: Your armies are just going elsewhere and their story on the T cells is not fully known yet. Your white blood cell count and red blood cell count will always be a good judge of where you’re at, and they’re almost normal now.
LARRY, HIV Positive: My count, when I started this, was about 522. At that point, my regular medical doctor, who I didn’t visit too often, wanted to put me on AZT, and I told him that I would never take that. So I stopped seeing him and, after about three years of these particular treatments that I’ve been taking and doing with myself, my count rose to about 948. The last time it was taken was about six months ago.
PETER HENDRICKSON, PhD, Author of “Alive & Well: A Path for Living”: I personally was found out that my T cells were 307 five years ago and I chose not to take AZT and my doctor didn’t encourage me to do it. I spoke with my teacher. He said you can build up your system. You know. You can just strengthen your spiritual practices. The downward trend reversed and I have five years with T cells, in the 400 to 500 range.
MALE: But I don’t want to make too much of a point of T cells because I really don’t, in a way, know how important that is; and I find, if I based my health on what my T cells would be, I would drive myself crazy. So I don’t pay a lot of attention to it.
GLORIA, HIV Positive: My T cell count has gone down. I notice it goes down, when I’m under stress or I’m feeling, particularly, put upon. So I have learned how to deal with handling some of that stress, and some of it comes through chanting from Buddhism. But I’ve learned, also, that I can bring up that kind of T cell count by really closely monitoring what I take and how I take and how I feel.
JOHN CACCAVALLA, HIV Positive, at Press Conference, General Media, December 1993: I go to a Chinese doctor. I have two Chinese doctors. I practice Chinese medicine, but more than just the herbs. It’s Tai Chi and Qigong. These are all things that deal with energy, the manipulation of energy in the body. You have control over your body. I mean that’s been proven for thousands of years. You know. Acupuncture and chiropractics, I swim: I rollerblade. I’m alive for Christ’s sake. We are alive and that is what has to be instilled in people, especially, when they first get their diagnosis.
The Spiritual Aspect
DAVID, HIV Positive: And I study. I study the scriptures and I don’t allow my mind to be dictated, by other people’s thoughts. I rarely watch TV. I don’t read the newspaper. You know. I study the scriptures and I study spiritual things and that’s what I think is important. I think it’s very important for us to come back in contact, with just the natural order of things.
JOSEPH, HIV Positive: Talking about this visualization. You know they know down to a scientific certainty that your receptor cells and neuropeptides are getting all screwed up, with every bad thought, you have; and that’s going to bring everything down, too. So meditation and I do it half an hour every morning and I’m trying to get it to half an hour every night, also; and it’s at least 50% of the battle is your thought process. I’m sure.
PETER HENDRICKSON, PhD, Author of “Alive & Well: A Path for Living”: What I found in my work, with groups of people, with HIV is nobody is, at any given moment, strong and continually strong and – people are, at given moments, strong but nobody is perpetually inspired. Nobody is perpetually an energy source. In the groups that I lead, the HIV groups, the therapy groups, the people that are weak one week might be totally inspired the next and we need to allow for all the different states of mind that come on with this. There’s no substitute, in my work, for the comfort and the steadiness and the inspiration that comes from an ongoing meditative practice through accessing one’s own stillness inside and through accessing one’s own spirit.
DEAN, HIV Positive: I believe spirituality has a major part to play, in my health, and I believe my emotional state has a great deal to play, in my health; and I always felt that I wanted to express this to my friends, who didn’t have to die.
JOHN CACCAVALLA, HIV Positive: The only people I see getting well, with alternatives, are those who can laugh, know God, personally know God, and ask for help.
Research & Availability of Treatments
CHUCK DEMARCO, Long Term Survivor: We’re not in a position any longer where people are taking into account that it’s their own bodies and that they should make a pact, with their physician, to do whatever it is that’s necessary. If that means that you feel that you want to do acupuncture or you want to do vitamin C drip or ozone or hyperthermia or whatever, that you should be allowed to do it. Unfortunately, the way things are set up we don’t allow that.
JOY, HIV Positive: I would love to get peptide T. I would like to take it subcutaneously. I would love to do it like that because I saw a friend of mine that passed away how it helped her, and then she couldn’t get access to it. I mean this like I can’t go to a doctor to get vitamin C. I have to get it through the underground and this is. You know. There are certain people that give it, but you have to pay it out of your pocket. I mean I take shark cartilage and other stuff. So it’s hard for me to afford.
BOB LEDERER, ACT UP, NY: In spite of the fact that out in the field, in small clinics all over the country and, indeed, around the world, people are finding methods of survival, of improving quality of life, extending the length of life, stopping opportunistic infections and they’re doing it using a variety of approaches, many of which are nontoxic, minimally toxic. They use natural medicine and that use some strategically placed conventional drugs. But, all those approaches, because they tend not to be the high profit drugs, they’re not getting federal research and, of course, they’re not getting private pharmaceutical money being put into them. Therefore, we don’t have this knowledge being systematized and spread out to the general public through the medical community.
RICHARD PIERCE, Director of Whole Foods Project, Manhattan Center for Living: With AIDS, bitter melon is something that the AIDS community is extremely interested in. What is the role of garlic? What is the role of particular herbs and spices? And, so, I would love to see this studied,even though, perhaps, there’s not an enormous profit motive to do this. I think that’s one of the things that we want to do more and more, and we want to be an advocate for this kind of change.
MORRIS FREED, at Rally Against FDA Proposed Regulation of Supplements: Well I’m a person living with HIV, living with AIDS, and probably, for almost ten years, and during the great majority of that time, I have used supplements and alternative treatments to help stabilize my position. This is verifiable by my blood results; and the proposition of having these alternative therapies taken away from us or extremely limited or relegated to a prescription is a very sorry situation.
JOHN CACCAVALLA, HIV Positive: And insurance does not cover alternative treatments. Chinese medicine is cash. You know. You have to have ready cash. It’s not that expensive – Chinese treatment – but there are alternatives. H202 therapies, hydrogen peroxide, where they want $2,500 upfront. No one has that kind of money and insurance is not going to pay for that.
JAMES SCUTERO, HIV Positive: It’s very interesting. My poverty, at the time, as far as not having any health insurance, saved me because I told them I couldn’t afford AZT, at the time, which was going for about $8,000 a year. I had no health insurance and I heard that there were some side effects, and I really didn’t want to go on this program.
JOSE PADILLA, Companion of AIDS Patient: When you go through the holistic approach, if you go to the right place, you always get the correct answer and, again, there’s a way to do things, a more affordable way. So, yes, it can be done. We are doing it.
MICHAEL ELLNER, Director of H.E.A.L.: We need to make the government and the insurance industry responsive. That anything we deem is good for us we should have them pay for. What good is insurance if it only pays for medicines that will hurt you?
GARY NULL, Ph.D., at Press Conference, General Media: The media has consistently parroted the voice of the industry that is behind the treatment of AIDS saying HIV equals AIDS equals death. As a result, some people, who have just merely tested positive, for the antibodies, have felt their life devastated. Some have committed suicide and many of these individuals have been socially ostracized, with a great deal of prejudice.
JAMES SCUTERO, HIV Positive: Well I was told I was going to die and, psychologically, it was almost like voodoo. They told me I was going to die and I believed it.
CHUCK DEMARCO, Long Term Survivor: We’ve all been told that this is a death sentence to us; and, as a result of that, you know. What’s going to make the cover of Time is going to be the person, who finds the “magic drug” that’s going to cure AIDS, and I don’t think we’re ever going to see that.
JOHN CACCAVALLA, HIV Positive: This is a glimpse of our future just the first sign of maybe looking at us who survive and why. The media does that, you know and we know, for sensationalism. That’s what sells papers. I mean mankind is a race that’s more fascinated, with death and war and destruction than he is with peace, happiness, tranquility. I mean that’s not fashionable.
JOY, HIV Positive: What keeps me alive is staying angry at the people that want to see us die. You know. So and I you know. I’ve seen a lot of my friends die and I’ve been talking about it, for a long time, about AZT kills you and a lot of them are. They passed away.
PETER HENDRICKSON, PhD, Author of “Alive & Well: A Path for Living”: This is what really needs to be stressed. That there is no hope. That nutrition doesn’t matter. That community doesn’t matter. That spirit doesn’t matter is a tragic mistake; and, in fact, there are so many instances of individuals finding their own grit. As Viktor Frankl said, you know, that he saw in concentration camps, as soon as a person became apathetic, they were dead. The survivors of concentration camps never yielded to apathy; and that’s the situation we’re in now.
MICHAEL ELLNER, Director of H.E.A.L.: The emphasis on safe sex or the emphasis on clean needles even the safest sex can be unhealthy. We have to look at the quality of all of our relationships and that’s often what determines, if they make us sick or not. And the question of clean needles: what about dirty drugs? And the message is clearly, you know, if you use a clean needle, you don’t have to worry. Well, quite frankly, if you study, in Italy, 80% of the people, with AIDS, are IV drug users, except needles and syringes are legal in Italy. No one is sharing needles. There is no need for it. Anyone who wants a needle can get a needle very easily, in Italy. Yet, 80% of the people, with AIDS, are IV drug users and many people want a solution that will allow them to continue the behaviors that made them sick, in the first place.
JAMES SCUTERO, HIV Positive: The straw that broke the camel’s back, for me, was they had an auction at Sotheby’s, and at Sotheby’s they auctioned off a $6,000 ruby AIDS pin and I said, “This is obscene. This is an industry.”
JOHN CACCAVALLA, HIV Positive: There’s a whole empire that has been built on AIDS. I mean there’s people that need this now for corporations, pharmaceutical companies. They have a lot of money invested, in our plight, in my plight. I’m angry about that. That – they don’t want that to change.
JOY, HIV Positive: I know the political part of it now. I know a lot about it and you know. It saddens me to see what’s really going on. It’s all about money.
POSITIVE SUPPORT SYSTEMS
MICHAEL ELLNER, Director of H.E.A.L.: We want to help people help themselves and we have found over and over again the people who get better are the people who do it themselves. No one can do it for them.
PATRICK DONNELLY, HIV Positive, Coordinator, Whole Foods Project: The food is really our main teaching tool because people come down to the center. They sit at our family style tables. They get a lot of support, from the people around them. They’re able to share healing resources and information about new treatments and interesting stuff that comes up; but the food is the main teaching tool. They see it. They’re able to experience it. Then they want to know more about it and that’s where we’re able to follow up, with our classes, in cooking and our lectures.
RICHARD PIERCE, Director of Whole Foods Project, Manhattan Center for Living: And the name Whole Foods Project pretty much says it all. We serve organic vegetarian food and whole foods simply mean food that is as close to its natural state as possible. So we don’t use canned foods. We don’t use highly processed foods. We don’t use any dairy or meat. So we’re a vegan program.
WARREN, HIV Positive: Just coming here lifts my spirit. I’ve been very depressed and isolating and there are so many groups that I come to here for meditating and body work. I mean without the Manhattan Center for Living I don’t know what I’ll do. I mean it’s just. It’s just a place to come to for refuge.
RICHARD PIERCE, Director of Whole Foods Project, Manhattan Center for Living: I get a lot of feedback here. Someone said what you all really serve is love on a plate; and I go away feeling lifted and that is part of what we do. It’s not measurable, but it certainly makes a difference, when you start caring about something, and you want to know where your food came from and you want to know that it wasn’t grown with chemicals. There’s another element of this. These chemicals are not only hurting us, but they’re hurting the farm workers that are using it. So we have to sort of start broadening our view and seeing what is the real effect of the standard American diet. So, when we take it home, we care for it. We cook it. We serve it with love. We’re really taking care of ourselves and that may be more important, actually, than what we’re eating.
MALE: I really don’t put a lot of energy into worrying. I live my life. I have a good time. I’m active in a lot of organizations. I’m on the Board of Directors of God’s Love We Deliver. I do a lot of service work, a lot of volunteer work,and that really is what my life is about. I, also, teach and I, also, enjoy doing that.
JOHN CACCAVALLA, HIV Positive: It’s given me a new life, a new outlook, a freedom. I mean I get goosebumps, when I think about it, because I’m happy. I mean I’m happy to work with people that are worse off than I am and, believe me, we can all stop and think a moment.
PETER HENDRICKSON, PhD, Author of “Alive & Well: A Path for Living”: Is there any hope with AIDS? Or is it just to sit back and let the people die when they die. I have to say that the research is. Michael Callen interviewed – he himself is a long term AIDS survivor – more long term survivors than anyone else and said, “If there’s a characteristic, that these people have in common, long term AIDS survivors, it is grit.” So these people didn’t just think that life was worth living or that life was worth celebrating.
THERESA, HIV Positive: It’s been a real wonderful experience, for me, not having AIDS, but just as far as my life. I’m an ex-addict. I have been clean for six years; and just by changing my life, by exercising, by juicing, by taking vitamins, by just being positive has turned my life around tremendously. I feel wonderful. I feel great.
LARRY, HIV Positive: Because of these changes, I have not had a single opportunistic infection since I’ve been diagnosed; and I don’t know how many years before that that I was carrying the virus, but I’ve been very healthy. People tell me all the time how good I look. I never hide my sadness from anyone. I’m in the public. I’m a business entrepreneur and an antique dealer. Anyone I discuss this with, they’re always interested in my input on what I’ve done to myself because they tell me I always look good and I continue; and I firmly believe in the practice of preventive medicine.
JOHN CACCAVALLA, HIV Positive: I just have no time to have AIDS and, as far as labeling, you know, the labeling of AIDS, one-by-one I’ve been peeling them off and peeling them off. It’s the very insistence that I’m ill and I refuse to be ill and I don’t look ill.
PATRICK DONNELLY, HIV Positive, Coordinator, Whole Foods Project: Every day I get up and I sort of start over and part of what I tell myself is just keep an open mind. You know. You don’t know what’s going to happen today. It could be anything and I try to bring that attitude to my work and to my healing, as well, because the world is full of miracles, and they could happen at any moment.
KENNETH, HIV Positive: Life is an extraordinary gift. This is a part of a journey, for me, and I feel like I’m walking on water. We all are. My doctor said to me, “Whatever you’re doing,” he said, “Keep doing it.” So that was a shock to me because I thought he was in charge. Well I’m in charge and so wish me luck. Thank you.
GARY NULL, Ph.D.: Well you’ve seen them and you’ve heard them. These are not test tube subjects. These are real live human beings and their story needs to be told over and over again to dispel the popular myths about AIDS. Thank you very much for watching. I’m Gary Null.
CHUCKDEMARCO, Long term Survivor: I feel great. I couldn’t be healthier. The fact is I gained weight. Everything that I had talked about prior to this has resolved and I’m now out there, as a living specimen, of hyperthermia and, also, as a living example of a person, who had AIDS and I don’t look at myself as having. The biggest problem that I have today is that, unfortunately, I still have that stigma and, until people start to realize that there are others of us that you’re going to be interviewing that don’t have the disease any longer, it’s not fair that now we’re marked for the rest of our lives.
JOAN, HIV Positive: I feel better now than I have ever felt in my life.
GARY NULL, Ph.D.: What kind of difference has this made?
JOAN, HIV Positive: Oh. It’s like night and day. I mean I have more energy now. I’m thinking completely different and my whole life has changed. I’ve taken control of my life, for the first time, in many years, and it’s just wonderful to be alive.
MALE: I really feel that this is just another one, as I said, of life’s adventures.
THERESA, HIV Positive: I feel great and sometimes this AIDS has been, almost, like a blessing in disguise.