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May 3, 2000

Dr., My 25 yr-old son was diagnosed with HIV in Nov.99. Since then he has been very ill. He has had thrush, neuropathy of feet and hands, herpes, scabies, MRSA, inexplicable high fevers with all negative blood cultures and various tests. Now he is having severe SOB, weakness, increased pain all over his body, pain in right lower abdomen, decreased liver and kidney functioning, CD4 count of 39, and viral load of 85,000, on no HIV meds because he is too sick. He has never had the chance to take any of the wonderful HIV meds. No opportunistic infection has been identified so no specific tx. identified.

I am scared, confused, and on top of that, I'm an RN so I know just enough to be terrified about my child's prognosis. Which of course, the doctors can't or won't give. My big question is, is my son going to die? I know God only has the answer to that question. But, what hope does my child have in fighting this terrible thing with a CD4 count of 39? How likely is it that the antibiotics, and antifungals can fight what ever infection he has with such a compromised immune system? PCP, Histoplasmosis, Mac have all been ruled out. Please help me by being straight with me. I will always have hope until hope is gone. But I'd like to know how to pray, at this point. Watching my son suffer has been the hardest part of this. What can I do to help him?

Response from Dr. Feinberg

I understand your terror, but it is possible to recover from the kinds of problems that your son is experiencing if he can get started on HIV meds. I don't think there are people "too sick" to take HIV meds, and if that's his doctor's opinion, he should find another doctor ASAP.

With all the symptoms you've described and the negative evaluation to date, I wonder if he has an AIDS-related lymphoma. The best help you can give him is to find an experienced physician who is aggressive enough to treat your son. There are websites with this information. Don't give up and good luck!

PML A year later and we're still here

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