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At the end of my rope

Jun 19, 2000

Hello Doctors; First. Thanks SO much for this invaluable forum. I was diagnosed in August of 1998 and was lucky enough to find one of the top doctors in the Los Angeles area who specialized in HIV infection. Unfortunately, late last year he chose to close his practice for personal reasons. He was referring to two other doctors who also specialized in HIV and were in the same building. Of the two, I chose the one that appeared to be the most knowledgeable in the field. However, immediately upon meeting with him, he started discussing possible med changes in my routine. I found this to be a bit strange since he had done NO testing, and the last time I had had any lab tests was almost 4 months prior. At the time, my V.L. was 132 and cd4 was 321. He tested me and my V.L was 135 and cd4 was 485. Four months later, we re-tested and my V.L. had risen to 875 and cd4 was 331. At that time he decided to do a genotype on me to find out if I might be resistant to one or more of the drugs I was on. (even though you are supposed to have a V.L. over 1000) He instructed me to stop taking all of my meds for 2 weeks until the results came back to avoid becoming more resistant while waiting for the results. After the 2 weeks had passed, I phoned his office and was informed by his nurse that, "He doesn't know what he's talking about... It takes 4 weeks or more to get genotyping results back..." At that time I became VERY concerned about being off my meds for that long and asked to speak to the doctor. I was told that he was in with a patient and would call me back. Since then, I've called his office on 4 other occasions. Each time I was told that he would get back to me, but he never did. Today, I called the office to find out why they hadn't returned the call I had made on Thursday of last week, and to find out if my test results were in yet. I was informed by his receptionist that my test results had actually come in on Feb. 23, and not only was my V.L. not high enough to do the test (which he already knew) it had actually gone down to 725. I finally got to speak to the doctor on the phone while writing this letter. He has now decided that I'm not resistant to ANY of the drugs, and has started me on Viramune and two of the drugs I was already on. Zerit and Ziagen. (my prior combo was, Viracept, Ziagen, Zerit and Epivir). Now I'm worried about starting back up on meds I was previously on after taking a 4 week hiatus from them. Will they still be effective? Have I now built up a resistance to them? (Is my doctor a quack?) I know this is a long one to post, but I'm really terrified that I'm not getting the best possible care with this doctor since everything he does is contrary to what I've been told in the past. Thanks for the help!

Response from Dr. Pavia

There are areas of HIV where there is a right or wrong, and there are areas where it comes down to philosophy. Your situation is one where you have a very low but detectable viral load, and are apparently feeling well. You don't mention how many drugs you had been on previously or whether you have had trouble with missing some doses.

A few years ago, the dogma was clearly that any detectable viral load was bad, and eventually would lead to evolution of drug resistance. Therefore, the guidelines suggested changing at least two drugs. Even then, the problem was it is an one size fits all mentality, that doesn't ask why you have a low level viral load, where you started from, how many drugs you have been on, or whether you have an increasing CD4 count. The approach is shifting somewhat to a more moderate approach that suggests we should be more cautious in deciding when to play our cards (ie new drugs) but making sure that each change is the best possible.

Most resistance tests will either not give a result or may give an erroneous result when the viral load is less than 1000. Ordering one on you was perhaps a little too enthusiastic. My philosophy is more conservative, and if you have been on several other meds previously, I would not be in a big hurry to change when you are doing well, certainly not without getting to know your situation better.

None of this is to say that what your doctor did is wrong. Stopping everything for 4 weeks rarely leads to difficulty reestablishing control, and it takes a fairly long time to develop resistance to Ziagen and Zerit. However, you need to get a better sense of how it will be for you to work with this doctor. Do you like to make decisions together, and is that his/her style? If your old doc is still around, consider sending him/her an note with your concerns about style and communication issues. It can help to have a person who you know well look at the reactions you had. Good luck

Andrew T. Pavia, M.D.

Time to change meds?
Increasingly visible veins in limbs

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