Jim's Story

Long ago but not so far away (or "Once upon a time"), I was born the youngest of three children to a family of modest means but rich in the ways of love and support. I met my first life challenge at the tender age of 3 months; a bowel obstruction that required immediate surgery. On the eve of the procedure, and the near death experience that followed, my mother was informed to "go home, get some rest, and be thankful that she had two healthy daughters". This would be my first opportunity to prove the medical community wrong. Successfully beating the odds, I went on to confront Rheumatic Fever, German Measles, and a long-term hip disorder Legg-Calves-Perthes (a form of Osteonecrosis) which required living my formative years in Newington Children's Hospital.

The experience, though seemingly traumatic for a child, taught me an appreciation for tolerance and diversity. Still, being stigmatized as physically inadequate, was a constant reminder that I was different - a specter that I occasionally struggle with today. Fortunately I was blessed with a gift that has been a refuge and inspiration throughout my life - Music. To hear and understand its beauty has brought me joy unparalleled. If you doubt it, just ask my Mom what it was like waking up to "The Blue Danube", full volume at 7AM each morning when I discovered the stereo at age 4. It is my passion and my dearest confidant. With my parent's blessing, I pursued a career in music; though secretly they wanted me to be a doctor. Little did they know that fate would indirectly grant their wish and lead me back to the medical establishment that I tried so hard to put behind me. By the late 80's, I was "out" and enjoying a promising touring career; doing what I loved best. My partner was my business manager and travel companion. There were record deals in the works and stars on the horizon - and then it hit! Not that we weren't aware of the dark clouds building ahead, we were just too busy to think about it. Patrick became ill in Chicago in 1991 at the peak of the biggest tour he had ever booked for us. Yes, it was AIDS and suddenly nothing else seemed to matter.

With the incredible loving support of my family, I brought Patrick home to CT to live out his final years. His perspective on illness taught me that there is no right or wrong way to fight - it is a personal choice. Quality of life is a varied as the people who are blessed to live it. His battle ended in '93 and my new life began. Having tested positive in '86 (when the test became available) was no great shock to me, I had known that I had been exposed as early as 1980. But by 1992, despite rigorous holistic intervention, the stress of events caused my system to collapse. Shortly after beginning anti-retroviral therapy with AZT, I succumbed to PCP and a parasitic infection. Although, I managed to bounce back very quickly as in my childhood days, there had been significant damage and the struggle back to health continued. From past experience, I sought out the best medical support team I could put together. This included a physician who is not only on the cutting edge of research, but sensitive to my needs as an individual. Although we have our ups and downs as in any close relationship, we have learned to co-operate and work towards a collaborative goal. We teach and learn from one another - an important equation in balancing personal and professional ideals. I experienced the "usual" OI diagnoses from Shingles to KS. Although their impact was relatively mild, I continued to decline in overall health. During this time, I pursued another attempt at a long-term relationship. The grounds were difficult - as we were sero-incompatible - and we came from completely different histories. In our third year, I was diagnosed with a chronic disseminated cryptococcal infection that left me bedridden and wasted from a muscular 200 lbs. to a frail 130! It was during this time that my partner decided to move on with his life - I have no regrets, it was a labor of love and probably the best for both of us.

Diagnosing the infection was half the battle. My case presentation was highly unusual and the standard tests, spinal taps (7 in all), proved inconclusive. At one point, even after several punctures, my physician could not retrieve any fluid. We were running out of time and options. Finally we decided the most invasive procedure to pursue was a brain tissue biopsy. Reluctantly, I agreed to have a hole drilled in my head to extricate a small sample of the meningial region. But here is where a miracle occurred; the day of the procedure I awoke with a small lesion on the inside of my right cheek. My doctor called a halt to the brain procedure in order to perform a biopsy of this new lesion. The result, although not organism specific, gave us enough evidence to reach a reasonable diagnosis and we began treatment. I convinced my physician not to prescribe a permanent catheter and instead used a temporary PIC line access. I was determined to beat this. I would go on to have this same "temporary line" for three years. I required multiple surgeries. The first of which was to remove the initial lesion in my cheek. Performed in my ENT's office (although I was an inpatient at Yale -NH Hospital), the procedure was efficiently executed (except for the severing of a facial nerve) and the surgeon was off and on to another hospital. However minutes later, I experienced internal hemorrhaging which required having the sutures ripped open and the wound cauterized to stop the bleeding. I was returned to my hospital room burned, sore, and looking as if I had suffered a stroke. To say the least, I was very disillusioned. That night, as I lay in my hospital bed, I began to pray for a better strategy. I remembered back to when I lived in LA and to some of my friends there who were having great success with anabolic therapies. Deciding to pursue this option with my doctor, I began to contact anyone with vital information. The resources at the time were few and scattered.

Then a friend in Nashville, who was also going through some tough battles with CMV, told me of the Program for Wellness Restoration (PoWeR) in Houston. He had connected with Nelson Vergel and Michael Mooney (www.medibolics.com) and forwarded me information that would truly turn my life around (for this I am eternally grateful). After much deliberation, my physician decided to begin therapy with Deca/Testosterone to bring my lean body mass back to a safe level. My condition was so bad at the time that we didn't even consider cycling. I needed all the help I could get for as long as possible. With renewed conviction, I fought my way back through 7 day a week infusions of Ampho B, at very high doses with all the side effects.

At times the rigors were so bad, that the only thing to control them was Demerol injections. I spent 6 hours of each day hooked to an IV, but then, would detach myself and head into my "homemade gym" for my workout. I had to work slowly at first, but gradually, with the help of the anabolic agents, my strength returned and soon I was bulked back up to near 180lbs., and then came yet another obstacle. Unfortunately, another lesion returned but this time with a severe abscess. I was rushed back into the hospital once again to have two drains placed in my neck. The high dose Ampho B continued with all its benefits yet damaging side effects as well. My kidneys were beginning to give out and even with a new formulation of the drug, the rigors continued. Still, because of my healthier body mass, I recovered very quickly and returned home to start the rebuilding process once more. That summer, due to failing HAART meds, I was blessed with my first drug holiday in years. We had decided to wait until a couple of new meds were approved for compassionate use before restructuring my regimen. Unfortunately, at the same time my doctor decided to start cycling the anabolics. Although I had presented him with quite a few options, he chose to use short term cycles with far too much time in between. We decided to try and taper off the IV meds first before attempting any further wasting related treatments. Without any anti HIV meds or wasting therapies, my body soon weakened and it wasn't long before the crypto returned to one of the original sites - a lymph node on the right side of my neck. I insisted to have the lymph node removed this time permanently.

It was only an overnight stay at the hospital and the surgery was quick. However, once again, it was back to the high IV dose of Ampho B and I returned home tired and wasted with 18 staples in my neck - how very Frankenstein. To top it off, I began the most aggressive regimen ever with two experimental meds - Abacavir and Sustiva - and a double protease with the ever popular liquid Norvir and Fortivase - the old favorite DDI, and a bit of Hydroxyurea to give it that extra kick. This was quite a long way for someone who used to refuse the concept of taking any HIV medications. Although the end result has been yet another victory, the side effects of the meds have now changed the focus of my treatment. I spend more time managing damage from medication than from the virus itself - a fact that we can all relate to. I have to take extra care of kidneys that were compromised from the 3 years of Ampho B, a complication that makes my anabolic therapies a true challenge. With constant personal research and communication with my doctor, I am always restructuring my integrated therapies to plan ahead for the future. So where am I today? Well, the fact that you are reading this story on this particular website proves that you can make miracles happen.

Once I accepted how much life I still had to live, the doors opened wide! I have connected with a man who possesses a loving soul and a caring heart. Within Alex, is the energy and focus that brings new purpose to my survival. Together we will create something to be remembered. Along with the Guardian Health Association, we hope to establish a program for wellness that is accessible to all who wish to strive for survival. I plan to receive my personal trainers certification to assist in this endeavor and continue my education in the health/fitness field. My health is at an all time high; long term sustained undetectable viral load, reconstituting immune system, and oh yes - NO MORE PERIPHERAL IV ACCESS! (I am no longer BORG!) Having to be constantly vigilant, I workout to keep my body mass climbing (my weight is currently at 190 solid lbs.), take more herbal and nutritional supplements than GNC has stockrooms (no promotional fee provided for that one!), and maintain a strong spiritual connection to the Higher Power that guides us all. There is new music to write and perform that can spread a message of survival and hope. I have the unconditional love of family, the gift of a lifetime worth of friendships, and the affections of a truly handsome gentleman. With all this inspiration, may the music that moves through my soul sing their praises. For we should all live "Happily Ever After".

Background Music: "Go On Living" By James. F. Taylor

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