|treatment naive - multi-drug resistance
Jul 16, 2006
Hi. Thanks for the invaluable service you provide to people like me. I've read through many of the Q&A, but I still felt the need to ask the questions myself.
I believe I was infected within the last 9 months. My last negative test was in July 2005. In January I noticed swollen lymph nodes that remain swollen, although the degree of swelling has fluctuated, and I had other flu-like sysmptoms in late Jan. With sevearl coworkers out for flu, I can't be sure if it was HIV or actually influenza.
I tested positive April 4. My first specialist appointment was mid May. Lab results from that visit were cd4: 497. v.l. 49,000. Phenotype resistance showed substantial resistance. The Dr. said he had resistant treatment naive before, but not to the extent of mine.
I apologize, I don't remember exact results, and the news caught me off guard and I forgot to request a copy of the results. I just remember a lot of long red bars. Basically he told me treatment options are limitted, 2PIs, and the fuzeon injections.
My questions: 1. Previously I've been told that hiv can be a manageable, chronic infection. With my substantial resistance, would it no longer be appropriate to hope for a "chronic infection" with a reasonable life expectancy (i'm 30 now and I'm fixated on the goal of dying of old age) 2. Does my vl of 49k and cd4 count of 496 at this stage of infection give any implication to my body's ability to control the infection. Would, say, a LTNP be undetectable at this point. 3. Can phenotype res testing ever be wrong? I have trouble accepting that I have the most resistant strain a Dr with 15+ years of experience has seen. 4. Last question, to what extent do the things I can do, influence progression. I don't smoke or drink, I workout 2-3x weekly, I supplement with a multivitamin, eat lots of fruits, vegetables, drink v8, boost supplements, fruit juices, etc. I realize my body is fighting a losing battle (without treatment, at least) but I would like to know my efforts are not in vain.
Thanks so much for your help, this website has been my best friend the past few months.
Response from Dr. Sherer
You have some time to get the best answers to your questions that you can, and then make the best possible decision. According to current guidelines, you do not require therapy today, i.e. your CD4 cell count is above 350, and your viral load is not above 100,000. So you have time to discuss this with your doctor, read, obtain a second opinion, etc., and I urge you to do so.
Getting a copy of the resistance test would be a good idea, as would repeating the test and making sure that you have the results from both the genotype and the phenotype, and to be sure that a laboratory error or mistaken specimen has not been made.
In answer to your questions: 1) If what your doctor says remains true, then the number of treatment options available to you are reduced, and the degree of difficulty of taking the first regimen is harder than with a wild type virus. In spite of that, a single effective regimen IS possible, in which case you can still reasonably hope for long term control of this virus, e.g. for many years.
2) A very good question - although resistance is NEVER a good thing, nor desirable, we should remember that the virus does sacrifice something with each mutation, and often that can be measured as a reduced 'replication capacity' of the virus. There is evidence that this measure can give us a rough idea of the 'fitness' of the virus. Hence you might ask about the replication capacity of your virus. Long term non-progression is quite uncommon, e.g. 1-2% of all cases - but it is still possible in your case, as is very slow disease progression, loss of 20-50 CD4 cells/year.
3) A lab error, as above, is a possibility to rule out with a repeat test promptly, and results with the genotype, phenotype, and replication capacity would be useful.
(And remember that your doctor is describing the most resistant virus in a newly infected patient, as opposed to all drug resistant patients, that he has ever seen.)
4). Yes, other factors can affect disease progression, including age (out of your control, but you are still a young man), active heavy or regular drug and alcohol use (avoid these!), and a prior AIDS opportunistic infection (which you have not had). More generally, healthy living, exercize, diet, and a positive will to live are enormously important.
You are very welcome - most important, you have time to figure out the nature of the virus you have acquired and the best way to approach it, including the best regimen if and when ART is needed.
While the only fusion inhibitor avaialable at present is a twice daily injectable - Fuzeon - many oral entry inhibitor drugs are in testing now and may be available within 2-3 years. And other new classes of HIV drugs that are promising are also on a similar time frame - so you have reasons for hope, in spite of this discouraging news.
So do not lose hope - gather your information, and feel free to request a second opinion or a consultant opinion (from a physician with experience in managing highly resistant virus).
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