Nov 26, 2003
i was just diagnosed positive within the last week. I believe I'm handling it well, but I think that's in part due to the fact I'm focusing on inconsequentials (see previous posting)... frankly, I'm very scared..I don't know what do to, and since there are different treatment options, how can I be sure my doctor is making the correct choices for me? My CD4 count is normal and viral load undetectable, I am certain that i contracted HIV within the last 5 months, so I should be in the early stages.. My doctor wants to start me immediately on a 6 month regimin of Combivir and Viramune, with the thinking that it may in some way "modify my immune response", but I see that the US Dept of Health and Human Services recomments NO TREATMENT for someone in my position, recommending instead that I wait until my t-cell levels drop or my viral load passes a specific threshold. I also see from you postings that other recently diagnosed patients choosing aggressive initial therapy are on different combinations of drugs. I don't feel comfortable starting this treatment until I've determined whether it really is the best course of action, but am afraid that I may be wasting valuable time if I allow the disease to progress unchecked in such early stages... 1) How useful is initial aggressive treatment on a recently infected, asymptomatic patient? Is there strong evidence that this "elective" treatment will buy me more time? Speaking generally, do you think a patient in my position who chooses to take 6 months of combivir/viramune now will have a longer healthy period before further treatment becomes necessary? I've heard that patients who recieve no initial therapy can often count on 5 to 10 years before their tcell count/viral load make treatment necessary. Does early aggressive treatment, on average, buy patients more time? I suspect early treatment han't been practiced long enough for there to be any reliable data.. 2) If i do opt for treatment now, what other drug combinations might you consider appropriate? And is 6 months the standard? 3) Is waiting to begin this early treatment going to compromise its effectiveness? As i said, the infection is at most 5 months old, but possibly as recent as 3 weeks(I was given multiple tests, one of which i believe could detect more recent infection, although i'm not sure about this) 4) What sort of side effects should i expect with Combivir/Viramune...Any facial wasting or changes in body fat composition? I think it would be too difficult to have to deal with that right now, in addition to having the disease.. Could i take the prescribed 6 month regimin and come out physically unscathed? 5)Is dementia unavoidable? If i take HIV medication now, I suppose it won't be an immediate concern..but what about after? Even if viral levels are undetectable, once I'm off the medication won't it be doing steady damage to my brain? Physical health doesn't mean much when your very essence is being slowly eroded 6) Additional therapies or supplementation? Any specific vitamin supplements that are know to help? I read that coconut oil is 50 lauric acid, which has marked anti-viral properties..Could these sorts of little things help slow the disease's progress once i come off the 6 month treatment? 7) i realize it's too much to hope for, but are there any cases of recent exposure being treated successfully with early treatment, that is, where the virus is completely eradicated? 8) What does the future hold now? Once I develop full-blown AIDS, what sorts of opportunistic infections are the main killers theses days? 9) Can you recommend any local (NYC) organizations that might provide me with information on doctors who specialize in HIV treatment? My doctor's specialty is Internal Medicine, and although he is a good, competent man, I suppose that's why I'm second-guessing his advice..I'd feel more comfortable with someone who treats HIV exclusively and has extensive experience. Thank You so much for this service.. This sort of kindness makes a very desperate time a little less unbearable. I hope you find time to answer my queries - I really don't know where else to look
Response from Dr. Wohl
You need to see an HIV specialist. In NYC you can't throw a rock without hitting one. The HIV clinics at NYU, Beth Israel, Cornell (Weill Medical College), Sloan Kettering, to name a few are well known and have experts in this area.
If you have positive ELISA and Western Blot, meaning you have developed antibodies to HIV, I would agree with your hesitation. HIV therapy at such a stage would be considered experimental.
The good news is that the chance of anything bad happening to you from HIV any time soon is very low. It generally takes years and years following infection for the immune system to decline to the point that opportunistic infections become a risk. Under expert guidance, your T-cell levels will never be allowed to fall that low. Additionally, in the next few years there will be even more understanding regarding control of this virus and better therapies - all of which you will benefit from.
There are no clear benefit from certain foods, vitamins, minerals etc. If and when you need it, HIV therapy will be your best bet for protecting your immune system. However, the value of a well balanced diet, exercise and clean living is clear.
There is no cure or eradication, yet. Hook up with a clinician who lives and breathes HIV. That will be your first step toward a long, healthy life.
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