Alex's Story

  Almost 50 years old, I have been living with the knowledge of HIV/AIDS for over 20 years now.  I expect that I was infected in 1980 after dating an airplane pilot.  He broke a fever during love making once.  I didn't think much of it being a kid from the suburbs, unaware of what inner city people, and selected government agencies, knew.  

Lets fast forward to 1995 when my lover Mitchell was dying, I was down to 165 lbs, very weak, and constantly tired.  My CD4 counts had been down to 90, and I thought for sure I was a goner.  It was a battle.  Not so much because he was dying, but because it was a constant battle with his family and doctors to get better treatment.  I was fortunate to have one of the best Doctors on the Eastern seaboard (Dr. Gary Blick, MD) , but it did little good to convince Mitchell  that he was not getting the best treatment.  His sister asked me not attend his funeral, because they didn't want his mother to know he was gay.  Mind you, she is a lesbian who has been going to the family Sunday dinner with her lover for .. I don't know how many years....  Needless to say, I was very angry so  I channeled my anger into working out and taking better care of my self.   With the help of my physician, I started exercising, taking nutritional supplements, anti viral medications, and monthly shots of testosterone, b-12, and gamma globulin.  I think this combo worked for me, and started me on my road to physical recovery.  I also connected with other like minded souls, and we formed the Guardian Health Association.  We pooled our resources together, and would order supplements in bulk to get better prices.  We also shared our experiences, strength, hope, and common belief that we could manage HIV.

I also have a strong spiritual component.  As a Christian, I do not believe that Jesus came here and suffered all that pain, torment, and humiliation just so that some people could be saved.  I believe God loves all his creations equally and unconditionally.  I believe that God is all encompassing.  I also believe, as the Bible says, God is Love, so like A Course In Miracles says: God can have no opposite.   Being pure love, God has no way to be anything less.   I think that people do a pretty good job at making God in our own limited image, however.

I believe health is a balance of mind/body/spirit and nature/environment.  This combo works for me... and that is about all I can say.  The only advice I usually give to people is to find out what works for them.  AIDS IS NOT A DEATH SENTENCE, but it can be if a person doesn't make some changes and get quality health care, and healthier habits.

As for my current health.  I had a minor set back in  January of 1998 when I was had an unfortunate hospitalization due to a non HIV related incident... a simple parotid infection turned into a hospital nightmare that left me 20 lbs under weight, weak, and badly burned.  Seriously, I went to the Emergency Room, one fateful Friday night, hoping to get a script for oral antibiotics (that has cleared this problem up in the past).  What happens is that the parotid gland, a gland with a little duct in your cheek that squirts out amalyze, get's blocked up from little calcium stones and becomes infected.  The ER ENT specialist, poked the infected parotid gland, and it bled spreading the infection into my neck.  My face and neck started swelling up and I started to run a high fever, so they put me on IV antibiotics.  The IV's made me deathly ill, and in conjunction with my HART regime, started developing pancreatitis.  So I spent a good deal of my time puking up bile.  To help with the facial swelling, on nurse decided to Micro-wave my hot pack, but luckily I was smart enough not to put in on my face. Unfortunately, being heavily medicated for pain, I fell asleep with it on my arm.  The picture to the right shows the burn.

Down to 158lbs, 11" biceps, 30" waist, I once again started an aggressive nutrition and anabolic therapy program. I found a chiropractor with a medical rehabilitation facility (Dr. Rubino DC, Medical Rehabilitation Center, P.C.) , worked out with a physical therapist, and got back onto my health regimen.  It wasn't easy, but little by little I got my weight and strength back.

I learned from that unfortunate hospital experience how important it is to keep one's weight up, specifically Lean Muscle Mass.... in case you need it for such emergencies... I also learned that it is better to stay healthy and out of the hospital, if at all possible.

It was also around this time that my liver panels were going up and being stressed out.  A very conservative and brilliant physician at the YALE clinic had to pull me off all my meds because of liver stress. She said that I had a choice: 1) Go back on the anti-virals or 2) go back on anabolics to maintain my weight.

I just scratched my head and said,, "gee that's a tough one. What do you think?" To my total astonishment, the good Dr. replied: "Well it's probably been your muscle mass that has been keeping you alive all these years and not the HIV meds, so I would go with the anabolic therapies." You could have knocked me over with a feather. Since the liver was a concern, I went on Serostim and had very good results. It allowed me to gain some LBM, and when my liver panels came down restarted anti-viral treatments.

I was doing very well, until  in the, Summer of 1999, I noticed that my facial cheeks were sinking in.    I was really pissed because I had be complaining about it for a while, and found out on my own (thanks to BETA bulletin) that one of the main suspected culprits of this type of wasting is Zerit (D4t).  "Be sure to keep up on the latest treatment developments and side effects."

Still battling HIV wasting I found that  the joint/muscle pain got to be a little too much to bear.  A close friend of mine was going to the same clinic, but seeing a different Doctor and was doing very well on Deca Durabolin.  I wanted to go on Deca, but my physician  said she was concerned about the liver stress and that I should get that script from another Dr.  So I did, through a consult.

When I reported it to her next time on my med sheet, she started screaming "who gave you DECA?" I showed her all the research papers which she cast aside and said "I don't care what other Drs. in this clinic are doing or what the research shows, I said no." and said she could no longer by my physician. (ie, throwing me out of the clinic). I also showed here that I could actually do a squat, and that I was pain free, and my liver panels were normal. That only seemed to make her madder. I still got a registered letter saying that "My expectations were too high" and she could no longer be my physician.  The moral of this story is "Keep you expectations HIGH.  You deserve a long, quality life, as functional and pain free as possible."

Today, I hover about 195lbs, 16" biceps, 32 waist, and have to consume a lot  of protein, nutritional supplements, and use anabolic interventions to keep those nasty wasting demons away.  My major complaint is serious fatigue, which can be very debilitating at times. 

Its funny, because when I still  mention my protocols to some physicians and 'registered dieticians' they say we have no proof that mega doses of vitamins or nutritional supplementation works.

That's sad because there is a growing body of data to suggest that vitamins and nutritional supplements do, in fact,  1) help boost  the immune system 2) can decrease opportunistic infections and developing full blown AIDS and 3) help anti HIV medications work better and/or offset some of their serious side effects. ***

PS. If you, or you know someone who is, HIV + then I would highly recommend the following books:

Kaiser, Jon D. MD.  Healing HIV: How to Rebuild Your Immune System. 1999

EAT UP! by Charlie Smigelski, RD and can be ordered at http://www.eatupbooks.com

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