My name is Kemble. I will be 55 in August. I am considered an anomaly by my doctors at Vancouver’s Immunodeficiency clinic at St Paul’s hospital. They cannot understand why I’m still alive, let alone healthy, until the end of 2010 when I went into emergency I was ARV naive.
Survival was not at the top of my list at that time. I allowed treatment because of a promise I had made to my mother when she was alive, to be here for my older sister, there’s just the two of us and my 89 year old father.
It was expected that I’d survive a few days…a week at the most. This turned into a 5 month stay in palliative care from Christmas Eve (Dec. 25th) 2010. Three or four of those months were entirely bed ridden – I was 96 pounds …nose feeder …PICC line …all that…
My way of life, both professional & recreational, combined with external stressors most people would not survive, led to the convergence of a multitude of AIDS defining diseases simultaneously.
All well and good. Here I am writing to you in June 2014. During 2011-2013 I recovered in my home. There was a massive regime of pharmaceuticals -a table of which I am happy to provide you with if any of what I have to say interests you.
From about the end of 2012, at my insistence, we embarked on a plan to peel back medications layer by layer …giving each a 3 month period to ensure if there was an unfavourable reaction, we would know which drug to reinstate. All went well.
ARV therapy (Truvada & Raltegravir) was stopped in Sept. 2013. I realised there could possibly be some rebound malaise in the following months as my body learned to look after itself. This happened over December to January…general fatigue, abdominal distress…which are also emotional symptoms of Christmas and the complicated relationship with my sister as well as Ferrous Fumerate which I was prescribed, which I stopped. I’m fine now. Energy excellent, no sickness …not even a cold. Cardio could not be better.
Allow me to backtrack a bit: I worked my entire adult life as a concert pianist/entertainer. I have a way of playing that is a gift. The worst effect from all the pharmaceutical therapy has been neural inflammation. I couldn’t touch any hard surfaces for a long time. My feet (toes in particular) are paralysed. My neurologist performed tests and said the longest nerves in my legs have severely degraded reaction to electrical stimulation. The tendons of my toes (again mostly on the left side) are retracted. This has improved a bit but is of little concern to me. I equate this feeling to walking on a cloud -there is almost a floating sensation caused by not feeling the ground. Most of this receded after the drugs were stopped. It’s most pronounced on my left side, which was the side I had the PICC line in for 5 months.
I come from a long line of doctors, eminent surgeons and registered nurses dating back to the mid-1700’s in England. My mother once told me that veins and nerves will reroute themselves given time and gradual, persistent use. Knowing this, one year ago, June 2013, I sat at the piano for 2 – 7 hours a day and retaught myself to play, sometimes focusing on excruciatingly slow exercises playing of two notes for 30 minutes, alternating the fingers of the left hand where damage was most pronounced. For the most part I have overcome it.
There is some restricted motion in my left arm. I have been to a vascular surgeon and have an MRI of my left shoulder scheduled for Sept 2nd, he doesn’t think it’s anything to worry about, but there is a pronounced reduction of blood-flow in the brachial area when I raise the arm. He believes this a common remnant of the PICC line. Happily, I developed a new technique unlike anything I’ve heard before that has allowed my right hand, to outperform anything I did in the last 30 years, while using my computer to make up for any lack in the left.
And finally I reach the point of why I’m writing: inflammation. Sitting at a piano for hours on end is going to cause it…we all suffer in the way of athletes.
I have a ferritin level well above 7,000 & HIV numbers are in the millions. My doctors cannot find its cause and naturally leans toward HIV as the great cause of EVERYTHING. We have an understanding that they will not bring up ARV therapy unless I request it…which I would for a short duration if my MAC (it was disseminated), CMV (retinal & colitis) or parasitic tests were of concern. They are not. All is well.
It’s “the chicken or the egg.” The doctors say the HIV is causing the inflammation & high ferritin counts–my liver and kidney functions are all normal. I believe inflammation is causing whatever the HIV numbers actually represent to be grossly elevated.
I DO NOT subscribe to medicine by numbers. I do subscribe to self healing (Louise Hay) Inflammation = inflamed thinking …and that could very well be the case with me.
I feel better than I have for many years and absolutely never suffer normal sickness, colds flu, gut issues…other than emotional…which have been recorded in me since 1961.
I have taken amphetamines for the last 30 years both prescribed and illicit and have reduced the dosage from 30 mg to 20 mg daily to see if it has any effect. For many years, as everyone I knew died…either from AIDS drugs complications or cancers or suicides, I believed amphetamine was keeping me alive by stimulating my immune system. I had the same psychiatrist for many years, who was involved in clinical research here. He had SPECT imaging performed sometime around 2000-2006. The results , given my history were startling; “A subtle indentation in the frontal lobes which may or may not indicate ADHD. Possibly a natural anomaly, does not indicate any history of drug or alcohol abuse.”
My psychiatrist was confounded. His words were, “I have patients in the hospital whose bodies and lives have been destroyed by amphetamine and methamphetamine…yet your brain seems to thrive on it.”
I no longer see him as he is winding down his practice but can furnish you with his email if you wish to confirm this.
Dr. Bauer’s blog today, although often some jargon is beyond me, touched a nerve -if you will forgive the pun. Obviously there is inflammation of unknown cause. I cannot see how I would have survived the ordeals of the last four years only to develop cancer. I currently present alternate symptoms of fibromyalgia, lupus and arthritis yet all tests including ANA have returned negative. I believe HIV to be irrelevant in causation, but rather, a byproduct of something heretofore systemic and undiagnosed. While I consider myself to enjoy robust good health, it is my wish that my medical records, including the cofactors leading up to the terminal diagnosis of December 2010 (since revised) be available to those if the scientific fields who are studying the possibility the this number labelled HIV is an indicator and not a cause.