|spoke with my GP re:starting meds, but he still refuses
Feb 24, 2008
After talking to my HIV specialist about when to start on treatment, he insisted that I do not. Initially, when I first met him, he told me that I could start when my CD4s dropped below 350 and my viral load was over 100,000. At the time when I thought I should start taking meds my CD4 was 270 and my viral load was over 100,000 for 7 months. He told me that he wanted to see my CD4 count go lower and My viral load go higher before he put me on meds. My partner and I both sat in his office asking for an explanation and all he could say was for me to take a psychiatric evaluation. My CD4's were going down and my viral loads were going up on every test since I was diagnosed in Aug of 2004. I had a swollen lymph node in my groin the size of a walnut, and I was having very bad night sweats, every night. His reasoning was, that I was not mentally stable in his eyes. Yet I had been to his own in house psychiatrist who did not agree with him and when I spoke with her, she told me that she felt that I should be able to start medication as it was my choice. I am in a monogamous relationship of 7 years, and I smoke pot occasionally for my appetite. But because I smoke pot prior to me being HIV, he compared me to a needle drug user, saying that I did not have the stability in my life to adhere to a drug regimen. I have never used any hard drugs in my life except for smoking pot. So the history is diagnosed in August of 2004. 3 months later developed the swollen lymph node and having night sweats. Then 9 months later in September of 2005, I finally got treatment from a different HIV Specialist after many months of being denied. I finally called the minister of health and she intervened. I was so stressed out during the time I started asking for treatment to when I started receiving treatment ( 9 months ) that I feel it has affected my long term health. It also put a strain on my relationship as my partner was allowed to start meds immediately when he was diagnosed. At that time his CD4 count was 270 and his viral load was 60,000. And we know that my partner infected me. The doctor had no sympathy for me, he was stubborn, saying that until I took a psychiatric evaluation he would not prescribe medications. I refused because I felt like he was blackmailing me. My partner and I are both professionals, with University degrees. My partner is currently working in a very prestigious High level bureaucratic position in government. I am currently not working. We make over 300K a year, and have a very stable home environment. Even though things seemed to have worked out for me I am still very pissed at this Doctor for denying me my choice of when to start meds. During this time, I spoke with all the HIV specialists in our province and a Hiv advocate in our city ( Edmonton), asking for help. I even went outside the province looking for assistance in Vancouver and Toronto, but was told to deal within my province. But apparently this doctor had written to all the other doctors in our province ( Alberta ) and black listed me because I swore at him for not letting me start medications. So I could not seek any help from any other HIV specialist in this province. I finally flew to Vancouver and saw a doctor there. Do I have any recourse against this doctor and did this delay in starting treatment hurt my overall long term health? I am still very bitter about what happened and I feel my choices were ignored. My partner belongs to a very well established health plan and to this day I cannot understand the reasoning behind this doctors decisions. I would really like to hear back from you if possible. I have been reading your column now since 2004, and I really appreciate the advice you have given. It has settled my nerves on more than one occasion in more ways than you can know. Sincerely Gary PS. Do we not have the right to decide when we want to start treatment? And I apologize for the bad grammar. :)
Response from Dr. Frascino
Unfortunately I have no way of determining what your doctor was thinking or why he was being so adamant about not starting you on HIV medications. The pot excuse is certainly not relevant. Your laboratory values (CD4 270 and plasma viral load over 100,000) would certainly qualify under all published guidelines as an indication to begin treatment. Certainly it seems like you and this specialist don't trust each other and consequently I would encourage you to find a competent and compassionate physician with whom you can develop a cooperative and trusting relationship. What about your partner's HIV specialist? Perhaps he would treat you both?
As far as legal recourse, I am not versed on Canadian law in this field. Perhaps a local AIDS service organization can answer that question for you or refer you to an HIV-knowledgeable lawyer, if needed. A physician certainly cannot prevent you from seeking the help of another physician. As for potential harm caused by the delay in starting treatment, again I have no way of assessing that with the limited information provided. Perhaps the important thing to realize is that time only goes in one direction forward. I would encourage you to focus your efforts on today and not dwell on the stresses and screw-ups of yesterday.
Good luck Gary. I do hope your health and turmoil settle down and you find a compassionate and competent HIV specialist with whom to work. Living with this disease is quite difficult enough without having to endure extraneous, unproductive and unwarranted hassles.
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