|My ARV treatment & my labs
Feb 3, 2010
First diagnosed HIV+ 12/31/08 contracting Nov 08 (yes got sick immediatly & had JUST been infected within weeks) CD4 1008, VL 64990 22.4% as of 1/2/09. 4/2/09 CD4 dropped to 626, VL 217560 27.2% overall. 6/18/09 CD4 down to 475, VL 206730. Started ARV treatment (Truvada, Reyataz & Norvair one pill a day each all doses taken at once) on 7/29/09. No side affects at all thank god! On 9/3/09 CD4 up to 512, VL down to 2130 billirubin levels 3.5 after bieng as high as 4.2 & was still getting thrush on these meds as had prior to starting them. 10/9/09 CD4 up to 663, VL down to 2040 billirubin still up to 3.4 from the Reyataz. 11/12/09 CD4 up to 720, VL down to 690 billirubin still elevated at 3.6 36% overall. My Dr did a resistance test to all 3 meds results showed my virus did not have any resistance. Had a genotype done prior to taking any meds showing NO resistance to any of the 25 meds available. 11/12/09 Dr's switched me to Truvada, Presista, Isentress & Norvair combo removing the Reyataz....Prezista 2 tabs everyday & Isentress 1 tab 2 times a day telling me to take one of the Isentress around an hour or 2 prior to the other meds which I have always taken around 11:30pm in case of any stomach upset. Again having NO side effects from the meds. Labs done & results on new meds on 12/31/09, CD4 dropped to 629, VL still at 370, billirubin level now normal 39% overall. Dr NOW informs me when I asked why STILL not undectable when they were telling me on meds would be after ONE month of ARV treatment, that have been taking all meds wrong (mind you as per her instructions!!) & told me to take one Isentress in the am 12 hours apart vs the 1 to 2 hours apart as she did initially, denies telling me this but whatever. My question is that when on 6 pills a day how can taking only 1 of these meds within 10/11 hours incorrectly even when another dose of the same med is still in my system along with the other 5 pills taken at 11:30pm still NOT show me undetectable?? Have been 100% healthy since my initial contraction & the thrush has also gone away completely after starting the new meds, do not understand & of course YES am afraid that all these meds & still not showing undectable?? She told me I needed to consume at LEAST 3000 caleries per day mind you I am 5'1/2" & weigh (the same as I have always weighed for years ven prior to my HIV) 98lbs...nutritionist tells me all my labs are good & am ok at this weight that is is a healthy weight for my size as am very petite...always take my meds with food or at least chocolate soy mil, a snack something as to keep my stomach from being upset. I am afraid I am not getting the care I should be receiving since so many variances in what they have told me to what I am seeing, how they initially told me to take all of the meds they have tried etc & the fact that I am in my first year fighting this. Am getting no assistance from case mgmt, have not seen a dentist or vision care provider since I left previous county in Florida back in June...seems I am on a waiting list?? I also take a RX multivitamin prescribed by the DR, an extra 600mgs of Calcium per day since have been told had the start of osteophorsis years ago & also take 200mcg's of Selenium. Have been on Klonipin 1 mg per day split into 2 doses for the past 6 years, going on 7 now to treat a severe Panis/Anxiety disorder that I am on disability for, my HIV Dr's have raised my dosage up to 1.5mgs per day again split into 3 .05 doses with a dose added in the afternoon included in the 1.5mgs. Still smoking, have tried everything to quit short of the Patch which I am nervous to try since years ago tried & gve me heart palpatations which of course no not need with having severe panic/anxiety but am willing to give another try since cannot seem to quit any other way...again my HIV dr's of course encorage yet keep telling me this is the last thing I need to worry about doing until my labs show better results & I am undetectable & stable labs for a period of time. PLEASE, PLEASE answer these questions for me as my own children have distanced themselves from me fearing I will die since my body does not appear to be responding as they initially said it would....very sad over this fact & just want another opinion....I do intend on seeing my OLD DR this Friday to get his opinion as the above as well, however again NOT an ID DR as seems they are impossible to get around any county near me!! Thanks so much for your time in advance & look forward to your comments suggestions on what more I can do. I know a lot of info but wanted to be through in giving you my info.
Response from Dr. Frascino
Thanks for your very detailed question!
Unfortunately it seems you are primarily the victim of expectations your physicians inappropriately promised. There are no guarantees when it comes to HIV. Not everyone responds the same to treatment. This makes sense when you consider all the variables involved. For instance, there are many different viral strains and not everyone's immune system behaves the same in response to the virus (just look at the "elite controllers" and "long-term non-progressors" compared to rapid progressors for an example) or to the antiretrovirals. If everyone responded the same, we wouldn't have 25 different medications! No one should have promised you that you would have an undetectable HIV plasma viral load within a month (or ever). Certainly we always hope for a good therapeutic response, but as I said, nothing is guaranteed. Take a read through the archives of this forum. You'll find lots of stories about HIVers having difficulty getting either their viral loads down or their CD4 counts up, despite taking potent antiretrovirals.
Looking at your case, actually you have responded overall quite well! Virologically your HIV plasma viral load has plummeted from 217,560 to 370! That's great, even though it's not undetectable yet. Immunological, your CD4 cell count has climbed from 475 to 629. This is a significant increase that puts your CD4 cell count into the normal range, even though it's not as high as it once was. Clinically, you've also showed improvement with the clearing of your thrush. Consequently, I'd advise you are overall doing quite well, even though there is still room for further improvement. There is still an excellent chance, although no guarantees, you'll get your viral load to undetectable levels. However, it's important to note now that your current therapy is not failing. In fact it's working remarkably well. Your family should not be distancing themselves from you. They should be celebrating your dramatically improved status: clinically, virologically and immunologically!
One final note: I would strongly encourage you to quit smoking now. There is an excellent chance that cigarettes will plant you six feet under long before HIV!
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