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follow up from BT on Feb 16 (urgent)

Mar 10, 2010

Dr. Bob,

I emailed you back on Feb 16 about my wife's intermitent Elisa and WB positive results. I will repeat that she has had no exposure (both partners tested), had no transfusions and comes from a country with low rates (Tajikistan), though the Doctors ASSUME that the place is unsanitary and it could have been acquired through medical care.

We did as you suggest and her viral load came back as 39,000 copies with a CD count of 132. She has no symptoms and has NEVER had more than a common cold (few at that). Simply put, she has a strong immune system has rarely gets sick.

We went to a second infectious specialist at University of Michigan 2 weeks after the initial blood draw and her readings were viral load 689 with CD count at 149. The viral load decreased by a factor of over 90% with no treatment in 2 weeks!

My wife's mother indicated that her family has 'weird blood" and that her uncle had previously tested positive for Hepititis B and Rubella in the past and my wife tested positive for both of these in the past, as a child. The infectious disease specialist said that the Hep B test indicated that she HAD it before but does not now and that the infection was most likely simultaneous with the HIV infection. Problem is, she was diagnosed with Hep B at 10 years old in a remote part of the former Soviet Union in 1990 prior to HIV in that part of the world (making simultaneous infection impossible).

In addition to all the oddities, she was tested negative 2 years ago, positive in May, negative on the re-test in May and then positive in October and then negative in October (all overseas only using Elisa).

It doesnt seem that the specialists we have met are taking all the background and lack of exposure into consideration. They simply look at the lap work and want to put her on meds. I assume that they think that there is information missing or that there are unsanitary facilities like Africa or India.... This is not the case, they have sanitation there.

Please give us some direction. Is there any cases of other viruses or conditions that replicate HIV to the DNA level?

I love my wife and can life with her being positive. That is not my issue. My concern is that their may be something else wrong that can do MORE harm than HIV or that she does have some unknown quirky blook that throws off viral tests.

In addition, with CD counts that low, wouldnt she have some symptoms? The other wild card is that she had a still birth last summer with no cause (it was overseas and the Drs didnt have proper labs).

Anyway, this is quite long winded and very unusual. I guess I would most like a referral to a specialist who does research on unusual cases that can possibly do some advanced testing as the Drs that we see now simply want to put her on meds and follow the progression.

Given all of the oddities, I cant let my wife simply go through life with HIV with no explanation of where she got it from and why it has progressed so fast, with no symptoms.

Any help will be greatly appreciated. We live in the midwest, but can travel to NYC, California or Johns Hopkins for a consult.

Thanks again,


Response from Dr. Frascino

Hello BT,

I agree your wife's previous HIV tests are confusing, and I certainly understand your frustration in trying to understand how and where she may have acquired the virus. Unfortunately, this is not something I can sort out for you over the Internet. I will mention that while the former Soviet Union may not have recognized HIV/AIDS in 1990, it was certainly present in that part of the world at that time.

As far as other viruses or conditions that would "replicate HIV to the DNA level" or explain all the conflicting laboratory studies to date, there really aren't any. There are immunological conditions that cause CD4 cell depletion, such as idiopathic CD4 lymphocytopenia (ICL), but this condition, by definition, occurs in folks who are HIV-antibody negative. It is also possible to have false-negative or false-positive HIV-antibody tests, although these are rare and routinely quickly detected with follow-up tests. Likewise the possibility of laboratory or clerical errors would be discovered quickly with follow-up testing.

Despite the confusion and frustration of not knowing what happened in the past, I would strongly assume that the results you obtained at the University of Michigan are accurate. Whatever happened in the past is now history, and perhaps we'll never be able to sort it out; however, I urge you to focus primarily on the realities of today. If you decide to get a third opinion, there are excellent HIV/AIDS specialists in all the locations you mention. Should you got to Johns Hopkins, I'd recommend you see Dr. Joseph Gallant. You can let him know I suggested you consult him.

Finally, it's important to note that your wife's CD4 cell count shows consistent and profound CD4 depletion. She is now at increased risk for acquiring an opportunistic infection. She should be started on PCP (pneumocystis carinii pneumonia) prophylaxis. Should follow-up tests continue to demonstrate positive HIV-antibody test results (ELISA plus Western Blot) and detectable HIV plasma viral load, I, too, would strongly advocate for combination antiretroviral therapy without delay, despite the somewhat confusing past history.

Good luck. Keep me posted.

Dr. Bob

What symptoms should one worry about?
We were worried about you

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