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Virus Levels follow up
Sep 11, 2002

Dear, Dr. Little I don't know how I can explain my concerns,I visisted with my doctor back on May 30,02 and prior to that visite I was on a Trizivir, and Viread. My HIV results were reading Negative for almost one month, after having symtoms associated with HIV, I stopped taking the meds about one week later in early May 02 due to side effects, My doctor at that time suggested that I take a moment to think about meds on a regular basis in order to preserve my emmune system. He stated that my all my counts were high, and called me a rare bird due to that fact that I was diagnosed during Sera-convertion, and diagnosed so early on, and that if I started a meds regiment, I could preserve my system and may a vacine 5 to 7 years from now would help. I put my trust in him, he has been a leading researcher and a pioneer in the area of HIV, and I felt I could trust him. Now I have second thoughts about seeing him. He mentioned that I did not need meds at that time, in May 02 but it would benifit me if I started meds. I told him I would like to think about it. he scheduled me for two months later on follow up, with no meds during this time and no blood work done. And no prescirbed meds were ordered, when I returned in Auguset 01, 02 Thrush was present and I was put on Nystatin, which has not helped. I decided to try a new combination of meds, Sustiva, and Combirvir,and when I returned on Sept 5 02, for follow up, during the two months I had no blood work done, He told me that I had progressed passed HIV level 2 and 3. and that I was now at a level 4 HIV/AIDS status, I guess I am confused on how I could go from being diagnosed in May with HIV level 1 and go to Level 4 within four months, and no blood work used to make this detirmination. I don't have T' counts nor do I have Viral loads count. So I have gone from trying to live with this virus to wanting to blow my brains out. sorry ! any way what can I due as a patient to ensure that my levels are accurate and that I am not being mis led, or given wrong information about my health status, also I would like to know as a patient do I have the right to have copys of test preformed on me at the my doctors office, and am I allowed to view my medical records and should I maybe consult someone on a second opinion. sorry If I have confused you Dr. Little, and excuse my type O's thanks again.

Response from Dr. Little

I am still a bit confused, but will do my best. As I understand it, you were diagnosed with HIV during a seroconversion illness. It is true that there is a small, but very compelling bit of data to suggest that very early (i.e. immediate) potent treatment may preserve the immune responses that appear to control HIV infection to a greater degree than are seen in people who start treatment at a later time in their disease. Having said this - my opinion is that the "window of opportunity" is probably less than 90 days. There is not great data for this, only my opinion based upon small reports and personal experience. Thus, I would be a bit confused by a recommendation to come back 2 months later. The finding of Thrush is not necessarily all bad, since there may be other reasons for this - but I would certainly like to know your CD4 and viral load counts during this period to be more certain. Finally, I think that drug resistance testing should be done before or at the same time that treatment is started to be certain that you did not acquire a drug resistant variant - which is now on the increase in North America in some risk groups. So - I still do not refer to viral loads by levels, so I do not know what these are. In the US, you do have the right to review your records and you should certainly have several viral loads and CD4 cell counts during this time. I would discuss with your doctor and explain your concerns (just as you have here). If he/she cannot provide the reassurance/explainations that you need, then perhaps you should seek out another HIV expert to care for you. And last but not least, it is always the right (and often appropriate) for a patient to request a second opinion (if insurance issues will permit) - I never take this as a criticism, but rather a statement of need by the patient that they need more information or reassurance. It is asking alot to put your faith in someone else to care for your disease, especially if you do not have access to all the information and background to be as active a participant in the decision processes as you would like. I would also suggest you look up a community based organization in your area - peer advocates here may be able to provide you with another referral to a provider, or simply more educational materials so that you are better prepared to ask the appropriate questions. Good luck!

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