You've answered my questions...now I have another one!
Jun 1, 2008
Thank you so much for answering my other two questions over the last two years! Now I have another one: AidsInfo says that most HIV specialists start HAART when CD4 is at or below 350. And that Herpes is an Aids defining illness. And that chronic and severe bloody noses are Aids defining. My CD4 is 256, VL is 10,000. I have Genital Herpes pre-HIV infection. I have been HIV pos for about 6 1/2 yrs and have had severe and frequent bloody noses (ER trips to boot). I've had two severe bloody noses in the last week...one trip to the ER...they couldn't even stop it. After 5 hrs of bleeding I had had it and finally resigned myself to 'it will stop when it stops' and checked out of the ER. It stopped an hour after I returned home (7 hours of severe bleeding). I have been reminded through my every 3 month lab tests that my platlets are very low, that my HDL is very high. I can not imagine why I have not been out on HAART yet. Neither do I understand why I have never been told that my low platlet count and severe nose bleeds need to be treated (and indeed treated) and that I have had Aids...and the Aids defining illnesses for some time. You may not remember me but I am the 56 yr old woman from Alabama where I am aghast at the minimal fair treatment of HIV pos people. I find it appalling that I have not been treated medically for those things I've mentioned above including HAART. I have been put on Famvir for the Herpes outbreaks tho.
So am I getting a fair shake at treatment and care or am I to just leave it to the 'experts' here in Alabama? Literally I am putting my life in their hands and I no longer feel confident that they are doing all they can for me at the HIV/Aids clinic here. Previously you suggested I move :)...it is not feasible :(
Any help and guidance would be appreciated. I am disalbed for other reasons and live on disabilty otherwise I would be sure to donate to this site!
bewildered by Alabama's lack of...
Response from Dr. Frascino
Yes, I do remember you and I'm disheartened to hear that you are having such a difficult time obtaining competent (let alone compassionate) HIV care!!!
First I should clear up a few misconceptions. Herpes, per se, is not an AIDS-defining illness. Chronic severe bloody noses are also not considered to be an AIDS-defining condition.
Next, you are absolutely correct: The current guidelines suggest beginning antiretroviral therapy when the absolute CD4 count falls to 350 or less. (Many of us actually recommend starting much sooner than that!) Your low platelet count (thrombocytopenia) is the cause of your epistaxis (bloody noses) and should indeed be worked up and aggressively treated. HIV itself can cause low platelets and there are a variety of other potential causes to be evaluated as well.
I don't know where in Alabama you are currently residing, but the HIV/AIDS services at the University of Alabama are reported to be quite good. (I believe Michael Saag, M.D. is in charge of the unit there.) There is no doubt in my mind that you should be started on HAART now and have your low platelet problem evaluated and treated without delay. Perhaps if you show this response to your treating physician, it will help.
Good luck. Don't get discouraged, but do insist on competent HIV care.
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