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Dr Bob I won the CVID lotto! Did I win HIV lotto too? I think you were wrong this time! HELP

Aug 22, 2010

Dr Bob,

I recently wrote you...I was the heterosexual with the bad virus/bacterial infection FOR 7 days in the ER that they could not diagnose...no IV drugs, no homosexual encounters...my illness was 3 1/2 years ago. Now my neuropathy is back. Well I went to a neurologist today and he says I have CVID! Well - obviously my negative HIV results are probably wrong! I don't get it though I've tested pos IgG for EBV, Parvo, Mycoplasma...wouldn't HIV show up too if I actually had it??? How do I produce IgG for these but still have CVID? It's not like I'm ALWAYS sick...I got sick 3 or 4 times that year but not really much since...barely a cold. He looked at my most recent CBC and he said it looked good but they didn't check in detail for my IgG, IgM, IgA...

I was one of the lucky 1 in 50000 to win the CVID lotto...did I win the HIV lotto too?

Do I need PCR/DNA testing to rule out HIV?

My last exposure was well over 2 years ago...am i reliably HIV negative with my neg antibody tests even though I have CVID?

If I had HIV from 3-4 years ago wouldn't it show up by now on Antibody tests?

Please help me doc...I'm so depressed and don't know what to do. Please please please answer...I was doing so well but now I'm convinced that I have HIV again...

Be well.

Response from Dr. Frascino

Hi,

It's as bit odd for a neurologist to be making the diagnosis of common variable immunodeficiency disease (CVID). I would suggest you see a clinical immunologist for a more complete evaluation. Please note the V in CVID stands for variable. Very mild cases could still allow for specific antibody production. A clinical immunologist will be able to run specific tests to evaluate your specific antibody-production capacity. That you have not had recurrent infections would argue against a significant immunodeficiency illness. More than likely, if you produce specific antibodies to EBV, Parvo, etc., your HIV-antibody test results would be accurate. If CVID is confirmed and there is any question about specific antibody production, I would recommend an APTIMA HIV-RNA Qualitative Assay. It's FDA approved for HIV diagnostic testing. See below. I'll also repost several CIVD questions from the archives.

Good luck. Write back and give us a follow-up report!

Dr. Bob

Hi,

It's as bit odd for a neurologist to be making the diagnosis of common variable immunodeficiency disease (CVID). I would suggest you see a clinical immunologist for a more complete evaluation. Please note the V in CVID stands for variable. Very mild cases could still allow for specific antibody production. A clinical immunologist will be able to run specific tests to evaluate your specific antibody-production capacity. That you have not had recurrent infections would argue against a significant immunodeficiency illness. More than likely, if you produce specific antibodies to EBV, Parvo, etc., your HIV-antibody test results would be accurate. If CVID is confirmed and there is any question about specific antibody production, I would recommend an APTIMA HIV-RNA Qualitative Assay. It's FDA approved for HIV diagnostic testing. See below. I'll also repost several CIVD questions from the archives.

Good luck.

Dr. Bob

Role of HIV PCR (APTIMA HIV-1 RNA QUALITATIVE ASSAY FDA APPROVED FOR DIAGNOSTIC USE) Apr 14, 2010 I am a family physician and first I wanted to commend your frank and frequently humorous answers to your readers questions. The appropriate use of humor when taking care of patients humanizes us as physicians. Continue your good work.

I am the medical director of a Las Vegas occupational/urgent care medicine clinic. We frequently see and manage blood borne pathogen exposures. (as well as the occasional patient who did something in Vegas that they want to stay in Vegas) Most are exceedingly low risk for HIV (needle sticks from diabetes syringes left in trash, etc) Some are slightly higher risk (HIV patients as source). Hepatitis B is a bigger concern but thanks to vaccine it doesn't present a huge problem.

In cases where the risk is slightly higher or the patient is exceptionally anxious I have been doing a 4 week HIV PCR. Our local Quest lab says this test is greater than 95% sensitive at 4 weeks. There are of course different PCR's. Judging from some of your answers it appears you don't recommend them. I agree that the 3 month HIV antibody test is definitive and seals the deal. Is there any role for the PCR's in my setting?

Response from Dr. Frascino

Hi,

Medical director of an urgent care facility in Vegas??? Now that must really be an entertaining position. I love Vegas and visit frequently. I'm always amazed at the often bizarre-appearing folks I see lumbering in and out of casinos on The Strip. I often have the urge to walk up to some of them and just say, "I demand an explanation." But, I digress . . . .

The problem with HIV PCRs is the rate of false-positive results and cost. Only one HIV-1 RNA PCR test is FDA approved for diagnostic screening (so far). It's the Gen-Probe APTIMA assay. (See below.)

Other HIV PCR tests are sometimes used to help diagnose someone who presents with a history of significant HIV exposure and is developing acute retroviral syndrome symptoms while still within the window period (defined as the first three months after exposure).

Hope that helps. Now can you help me with my craps game? I'm still a bit uncertain about all those onetime bets in the center of the table.

Be well. Thanks for appreciating my admittedly twisted sense of humor. Then again, you do live in Vegas, so . . . .

Dr. Bob

Approval of HIV-1 RNA qualitative assay for diagnostic use

The Food and Drug Administration (FDA) announced the approval, on October 5, 2006, of the APTIMA(r) HIV-1 RNA Qualitative Assay, manufactured by Gen-Probe Incorporated of San Diego, California, for use in clinical laboratories and public health facilities to detect primary (early) HIV-1 infection. The APTIMA® HIV-I RNA Qualitative Assay is an in vitro nucleic acid test (NAT) for the detection of human immunodeficiency virus (HIV-1) in human plasma intended for use as an aid in the diagnosis of HIV-I infection, including acute or primary infection, before the appearance of antibodies to HIV-1. Traditional detection and diagnosis of HIV-I infection is based on testing for anti-viral antibodies by enzyme immunoassay (EIA) with confirmation by supplemental antibody tests such as Western blot or immunofluorescence assays (IFA). Although sensitivity of HIV-1 antibody detection has increased in the last few years, a window period between infection and detectable serological markers still exists. Following a recent exposure to HIV-I, it may take several months for the antibody response to reach detectable levels, during which time, testing for antibodies to HIV-I, including the use of rapid antibody tests, will not indicate true infection status. The newly approved test may provide earlier diagnosis of infection because it detects nucleic acid of the human immunodeficiency virus (HIV-1) in human plasma, rather than the antibody response to the virus. Presence of HIV-I RNA in the plasma of patients without antibodies to HIV-I is indicative of acute or primary HIV-1 infection. The test, however, is not meant to be used as a stand-alone test for the diagnosis of HIV-1 infection. A positive nucleic acid test should be viewed as a unconfirmed test result, indicating probable infection, and should be followed up later with traditional EIA antibody testing to confirm infection with the Human Immunodeficiency Virus. In addition, the APTIMA HIV-1 RNA Qualitative Assay may be used as an additional test to confirm HIV-I infection in an individual whose specimen is repeatedly reactive for HIV-1 antibodies. This is important because the Western blot can, in some instances, be difficult to interpret and may not always provide a conclusive result. The APTIMA test can be used instead of the traditional Western blot test or IFA for confirmation of HIV-1 infection when the screening test result for HIV-1 antibodies is positive. The sensitivity of the APTIMA(r) HIV-1 RNA Qualitative Assay is comparable to that of FDA approved viral load assays that measure the amount of HIV-1 virus circulating in the blood of patients with established HIV-1 infection to monitor the treatment and progression of AIDS. Unlike the viral load tests, however, the APTIMA test has been approved for the diagnosis of primary HIV-1 infection, as well as for confirming HIV-1 infection when tests for antibodies to HIV-1 are positive. The product labeling for this test will be available soon on the list of FDA Licensed/Approved HIV, HTLV and Hepatitis Tests on the FDA web site. Richard Klein Office of Special Health Issues Food and Drug Administration

CVID/Hypogammaglobulinanemia Oct 21, 2005

Hi..

You do great work. I have to admit I've chuckled to myself about some of the rather paranoid questions I've read here.

NOW, however, I'm feeling a bit paranoid myself. I'm a happy gay man monogamous with an hiv negative partner. I've had a few HIV tests over the years and all were negative. I recently learned I have CVID or hypogammaglobulinanemia.. and I read that this condition can cause false negatives. I've about 6 HIV tests in my life. I don't think I'm at risk.. just thought I was being "responsible". My exposures are being the insertive partner in anal sex WITH a condom twice with a person of unknown status. Receptive partner in anal sex WITH a condom with a person of unknown status. A couple of incidents of both receptive and insertive oral sex WITHOUT a condom WITHOUT ejaculation with a person of unknown status. These were before I met my partner.. Based on my test results I told my partner was negative. I have never had any "symptoms" of HIV ie: conversion illness etc.. Given my past history is a Viral load test warranted? I ask only because apparently with my CVID the antibody test is not reliable. This is NOT keeping me up at night.. but I do want to know and to be fair to my partner.. Whatever YOU say goes.. if yes then I'll talk to my Doc.. if NO then I forget about it.. THANKS!!! sign me Surprised!!

Response from Dr. Frascino

Hi Surprised,

CVID (common variable immunodeficiency disease) is indeed as the name implies "variable" from person to person. Yes, it does involve altered or deficient production of antibodies. Consequently, it is possible some cases of CVID could give false negative results on tests that rely on antibody production. Whether your CVID would alter a basic HIV ELISA test, I would not know without knowing much more about your particular case. Are you working with a clinical immunologist (preferably board certified by the American Academy of Allergy, Asthma and Immunology)? Are you receiving infusions of intravenous gammaglobulin? Your certified clinical immunology specialist could most likely give you more specific information as to whether your condition is severe enough to warrant consideration of HIV PCR testing.

The next issue is HIV risk. I agree your risk, if latex condoms were used properly and did not fail, would be extremely minimal primarily unprotected oral sex without ejaculation. If, however, you and/or your partner are concerned and if your CVID is severe enough to potentially give a false HIV-antibody test result, then an HIV PCR could be considered.

Stay well.

Dr. Bob

CVID AND ME!!?? May 14, 2008

Hi Dr.Bob,

I recently read a post pertaining to CVID. I've never been tested for it nor have ever suspected it however, how can I tell if I have it or not. I've suffered from sub chronic loose stools, red light lesions on my chin and under and around my lower exterior under my bottom lip. I suffer from a slight case of folliculitus on my thighs and don't know where to turn!! Can you please evaluate my CBC and tell me if it sounds anything like CVID? BTW, it was done at 10AM and I was fasting. Also, I have had 2 negative HIV anti-body tests 4 - 7 years post exposure.

CBC: 4.9 RBC:5.22 Hemoglobin: 15.3 Hematocrit: 44.5 MCV: 85 MCH: 29.3 RED CELL DIST: 12.5% NEUT: 45% LYMPH: 46% MONOCYTES: 7% EOSI: 2% BASO: 0 NEUT ABS: 2205 LYMPH ABS: 2254 MONO ABS: 343 EOSI ABS: 98 BASO ABS: 0 PLATELET COUNT: 187

Dr.Bob, does this at all suggest CVID? I'm donating 100 bucks tonight. Please put my mind to rest =*(.

Response from Dr. Frascino

Hello,

So just because you read one of my posts that mentioned common variable immunodeficiency disease (CVID), you are now worried you might have it!?!?! You've never been tested for it, nor have you ever suspected it; however, you now want to know how you can tell if you have it or not!?! Oh my . . . well, how about pneumonoultramicroscopicsilicovolcanoconioses or maybe hippopotomonstrosesquippedaliophobia??? Aren't you also worried about those illnesses? Yes, they really are legitimate illnesses.

Sweetie, just because I or anyone else mentions a disease you've never heard of doesn't mean you need to freak out and get tested for it! CVID is not your problem! If you had CVID, you would already know, because you would be having difficulty controlling certain types of infections. CVID is a disease characterized by low gammaglobulin levels that lead to severe recurrent bacterial infections, such as pneumonia, bronchitis, sinusitis, ear infections, etc. Treatment involves antibiotics and periodic intravenous infusions of gammaglobulin. It is not diagnosed by obtaining a CBC. Your negative HIV-antibody tests at four-seven years post-exposure are definitive and conclusive. If you can't accept that wonderful news, you should seek psychological counseling to help you cope with your irrational fears of being HIV infected.

And for the record, pneumonoultramicroscopicsilicovolcanoconioses is a lung disease caused by inhaling fine particles of silica. Hippopotomonstrosesquippedaliophobia is a persistent abnormal and unwarranted fear of long words. Really, it is. I'm not making this shit up. Go ahead and Google it!

Thanks for your generous donation to The Robert James Frascino AIDS Foundation (www.concertedeffort.org). Your one gift will touch many lives and is warmly appreciated.

Be well. Stop worrying!

Dr. Bob



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