|Anemia follow-up from 7/22/02
Aug 27, 2002
I thought I should let you know that my HGB (from mal-nutrition & malabsorption from GI surgery in '96) is now all the way up to 9.6! I had started taking Iron & eating red meat again. They said, "You might drop dead" for the second time & I'm still here after 17 yrs. I wasn't informed, however, that I'd suffer a pseudo-dementia, heart problems,& possibly kidney problems from the persistent foot & periorbital edema. But, even after showing the group of Drs. that I had no Food Stamps for two months last Spring (and was already at a HGB of 10, with a cholesterol of 113) they wanted me to have another C & E, despite my levels going up from eating. My tachycardia is better. They say diuretics don't help non-pitting edema, but this has gone on since April! It's fine if I elevate my feet, but I have to get food & go to the Dr. I'm not stubborn, I'm trying to see how long my VL can stay <50 (Fauci says it shoots right up). So, my question is: If I'm off of all HIV meds, can I get genotyping/ phenotyping done yet to see if I have a wild type that isn't being measured? I'm thankful that my T4's aren't higher, as if they are activated, why would I want them to shoot up? And, isn't HIV the only known condition that produces a reversal of T4's & T8's? Ho promised a cure ten yrs. ago-Why is gene therapy being used for other diseases & not HIV? That I'll try!
Response from Dr. Frascino
Welcome back to the forum. Glad to hear your hemoglobin is on the way back up. At 9.6 you still have a ways to go! Genotype and/or Phenotype testing cannot be done unless you have a detectable viral load - usually over 1000. Increased CD4 (T4's) would be helpful, as they are critical to the optimal immune response to a wide variety of potential opportunistic infections and malignancies. HIV is one of only a very few diseases which produces a reversal of the usual T4 and T8 counts.
Gene therapy holds great promise for many diseases. However, at this time, these gene therapies are still in their infancy. There are some trials underway in HIV disease, but results are still very preliminary, and we have much to learn about various potential gene therapies, including their risks and benefits. Stay posted to this site for further details as they evolve.
Good luck and keep that hemoglobin up!
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