Immunonologist Visit Chapter II - You Told Me To Write
Feb 21, 2010
Hi Dr. Bob,
I was the guy who had 11 HIV tests since 2003 but was still concerned. Just got back from my 2nd visit to the immunologist in Pittsburgh.
Originally I was diagnosed with low testosterone and markers towards Lupus or ANA.
Well the testosterone is low: Total: 228 Range (280-800) Free: 4.5 Range (8.7-25.1)
He also said my vitamin D levels are low, so I did get 1000IU of that to take now. I do take a multivitamin daily but I guess that isn't enough.
He did a CD4 check and looks like other CD cells as well, I didn't even know there was a CD19 cell...
CD3 83% 1962 Absolute CD 4 52% 1202 Absolute Abs Lymph 2354 CD8 21% 478 Absolute CD19 9% 218 Absolute Helper Suppressor Ratio 2.53 (Range 0.6-2.3)
ANA Titer was high at 80
He said other more specific checks for Lupus were negative.
I'd like to start on Testosterone, but he is ordering a Pitituary Gland check by MRI because LH is low. Also a sleep study, a morning and evening cortisol and a semen analysis at a fertility clinic.
He said if no reason can be found for the low testosterone then I can go to an endocrinologist and he'll give me gel to take.
Sound good? I still think it's odd I'm losing fat in places that would designate lipodystrophy/atrophy, but if it's negative it's negative I guess as far as HIV goes.
Thanks Dr. Bob!
Response from Dr. Frascino
Sounds like a reasonable plan to me! Keep me posted! OK?
Finally moving in a direction, but still worried about HIV. Feb 6, 2010
I've wrote to you before, had a possible exposure in 2003 and since then I had 11 negative HIV tests out to December of 2009. All sorts of tests, antibody and DNA.
Just got a call from an immunologist I saw on Monday in Pittsburgh and he said my testosterone level is low and also Lupus came back as high or positive I believe he said. I've been worried because my legs have been thinning. I feel fine and have not been sick in a long time, but very worried about losing muscle mass.
I asked him about Androgel and he said oh no don't start taking stuff cause that will mess up tests, we need to find out the reason for it.
Could these be indicators of HIV infection? Is the low testosterone causing muscle breakdown and therefore indicating a false positive for Lupus? In other words could it be lupus like symptoms, but yet I don't have actual Lupus?
I mentioned HIV again and he really didn't think it would be that because of the 11 negatives, but that thought is always in my mind.
I don't want him thinking it's Lupus and giving me immunosuppressant drugs when I might have underlying HIV infection...
Even though I know you would say it was unwarranted, I did have another CD4 done as it was 1000 in 2004 and 701 in 2009.
Response from Dr. Frascino
You finally see a competent physician (hurrah for my fellow clinical immunologists!) who is appropriately evaluating your problem and yet you choose to doubt him and continue to fixate on a disease you could not possibly have???? What's up with that??? Frevinsakes!!! Dude, be reasonable! Eleven, count them, eleven negative HIV tests (including DNA PCR and antibody tests) plus two completely normal CD4 cell counts out to six years (six years!!!!!) and still you worry about HIV??? Exactly what part of "HIV negative" are you having difficulty understanding???
Briefly, responding to your questions:
1. I agree you should not begin testosterone replacement therapy until the evaluation is complete and we completely understand what's going on.
2. Could your results be indicators of HIV? No, of course not, silly, silly boy! You're HIV negative. Did you forget again already?
3. Low testosterone does not cause false-positive lupus tests!
4. Yes, it's possible to have lupus-like symptoms and not have lupus. That's what your clinical immunologist is currently evaluating. None of this has anything to do with HIV!
5. Your fears of an inaccurate lupus diagnosis and getting immunosuppressive drugs inappropriately because of an unrecognized underlying HIV infection is totally looney tunes.
6. Yes, I would indeed say your repeat CD4 count was unwarranted (as was the initial CD4 count). That both returned completely normal results confirms my opinion. I rest my case.
M, you may indeed have a medical problem, such as lupus or another autoimmune disease in addition to hypogonadism (low testosterone). This may indeed explain your symptoms. Give the immunologist a chance to complete his workup and explain his results to you. In the meantime, if you can not get HIV out of your head, you need to see a head doctor! Yep, it's off to the psychiatrist if you can't accept the reality of your overwhelming and incontrovertible HIV-negative test results.
Write back after your evaluation is complete and I'll post your followup.
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