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Janie Here: REPLACEMENT Post

Mar 5, 2011

Dear Dr. Bob: I wrote the earlier email when very depressed and devastated. Perhaps it would be better NOT to publish all that; it could scare everyone to death and we are already a nervous group. I'm very worried about my diagnosis of diffuse large B-Cell lymphoma. No one in my family, as far back as I can go with relatives has ever had any form of cancer. My fear is that my lymphoma could be related to HIV. I have never felt safe after my exposure, though I have tried to take measures to determine my status (10 antibody tests every six months or so for six years out, Western Blot 1992, HIV- 2 in 1995, PCR 1995, 2008 DNA PCR, this summer Hiv-1/Hiv2 (Abbott Labs). I have seen several doctors recently and none has a clue about HIV testing. I did see an Infectious Disease specialist who was rude and refused to discuss additional testing or anything. My oncologist/hematologist has expressed concern that I have so many symptoms and the symptoms that I have are severe, many not at all related to lymphoma. I feel as if I have flu all the time, I am in constant pain with lymph nodes which are swollen, and I have painful nerve problems with pain radiating from the groin area & back along my legs (since 1992) and which I blamed on a herniated disk (now repaired). This went away for many years and recurred about seven years ago, and it comes and goes. Can you offer any advice to me? Do you happen to know a good internal med. doctor or infectious disease specialist in Austin or Houston that I should see? I would hope that only FDA approved tests would be used by everyone screening people in the US, but perhaps that is NOT the case? My understanding is that the FDA approved tests must be able to detect all subtypes and group O. If I KNEW that I was not infected with HIV, I believe that I could deal with my lymphoma. If I have an HIV infection that is not detected, I truly have no chance. Is there one test that I should try to take that would cover all the subtypes and groups, or have I done that already? I just wonder if I am hiv infected? Please feel free to edit this post heavily or not to publish it at all. I have no one else to talk to about this, and believe me, being able to write to you (even without a response) is so reassuring to me.

Response from Dr. Frascino

Hello Janie,

I am sorry to learn of your recent B-cell lymphoma diagnosis. I've posted your "replacement" post; however, I can assure you that your fears about scaring readers with your original post are unwarranted. This is an HIV information Web site based solely on scientific fact. There is no reason to shy away from any question, as far as I'm concerned. That said, the most important scientific fact for you, Janie, is that you are definitively and conclusively HIV negative. HIV is not your problem. No way. No how. No additional HIV testing is advisable or warranted. You've had far too many already.

I very much agree with your decision to see an internal medicine physician in addition to your oncologist. You do not need an infectious disease specialist, as you do not have an infectious disease. I do not provide names of specific physicians, because when, on occasion, I have done so in the past, it resulted in an onslaught of requests from other forum readers for specific referrals in their locations. Just make sure your general internist is certified by the American Board of Internal Medicine. I would also suggest checking with your oncologist for a specific referral recommendation. In addition I would recommend you seek consultation with a psychologist or psychiatrist to help you cope with your recent diagnosis, your irrational HIV fears and your depression. (You report being "very depressed and devastated.") Some of your unexplained symptoms may be related to depression.

Good luck.

Dr. Bob

I stopped PEP after 5 days. When can I get an RNA test?
Are you and Steve OK

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