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HIV / CVID (COMMON VARIABLE IMMUNODEFICIENCY) (HYPOGAMMAGLOBULINEMIA 2008)
Oct 12, 2008

Im a gay man, 44. Over the last 8 years I have had the tell-tail signs of swollen neck glands, soaking night sweats, shingles, persistent chest infections and bacterial pneumonia. In May 2006 I tested negative for HIV (the test was a spot of blood on a slide and a 15 minute wait).

A couple of days ago I was diagnosed with an antibody deficiency (common variable immunodeficiency CVID). For the record my IgG is 0.1 g/L, IgA <0.23 and IgM <0.23. Serum Electrophoresis Reduced gamma region and Paraprotein type No monoclonal band detected.

Having this condition, would testing for HIV be difficult with such a low antibody count? If infected, wouldnt I also have low HIV antibodies? Could my test be a false negative?

Are there any subtle differences between HIV and CVID? Would the immunologist be confident enough to disregarded HIV as the cause of these low antibody count?

Thank you for any consideration you may give this.

Response from Dr. Frascino

Hi,

Actually, HIV often sends serum antibody levels up, not down. HIV causes hypergammaglobulinemia, not hypogammaglobulinemia. This is a consequence of immune activation.

I'll repost some information below from the archives concerning CVID and HIV. Please note CVID could interfere with HIV-antibody testing accuracy. I would recommend HIV PCR DNA qualitative testing instead for folks with severe CVID. Of course, the best way to avoid this confusion entirely is not to put yourself at risk for HIV in the first place!

Be safe. Be well.

Dr. Bob

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 testing May 13, 2008

Hey Dr. Bob love the flavor you bring to this site. I've had three test since a very high risk exposure. A little over two weeks later I developed adenopathy (the area of exposure first)and many other ars symptoms (didn't even know about ars at the time). The last test was over 16 months out. I thought I was in the clear and had no reason to stress any longer. But I have a family member who has been HIV+ since the early 90's and every now and then I'll read up on recent advances/future weapons(Like KP1461 excited about that and hope phase II goes well)in this war. I just recently discovered that CVID can cause false negatives. I've read your past post and understand that this condition can be different from person to person. I have CVID and suffer on average 3 to 4 serious infections a year. So now I'm worried all over again.

These are my questions for you dear doctor

1. Which gammaglobuline does the standard EIA detect? I would assume IGg is the major one when we are talking about a blood test.

2. My IGg is at a count of around the lower 300s. I know the lowest normal range is considered 500. Is my IGg count high enough to give reliable test results using a Elisa?

3. Would a IGg subset deficiency play a role in testing?

I've been stressing about this since I found out. My wife gave birth to a beautiful baby boy about 7 months ago. She didn't get tested during pregnancy. She consented but the Dr. forgot to order the test. Didn't find that out until after my son was born and saw his paperwork. Now he's having a lot of infections and a cough that has gotten worse since 4 months old. We've tried allergy medicine and even a inhaler, nothing helps it just keeps getting worse. I'm so worried, he's my world. Thank you for your time Dr. Bob

Response from Dr. Frascino

Hi,

Yes, CVID can vary considerably from one person to another. That's why it's called "common variable immunodeficiency disease." Clever, eh? In folks with significantly altered immunoglobulin production, I would recommend a non-antibody-dependent HIV test, such as a qualitative HIV PCR DNA, for HIV screening.

To specifically address your questions:

1. Yes, primarily IgG.

2. Actually, this would depend on the sensitivity of the assay used. Consequently I would suggest you utilize an HIV-screening test that is not dependent on anti-HIV antibodies, such as an HIV PCR DNA qualitative test.

3. This would depend on the severity of the deficiency and which subsets were affected.

Regarding your son, his pediatrician should monitor him for problems with immunoglobulin production as well.

Good luck.

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

RE:CVID and ME!!! May 15, 2008

DR.BOB!!! YOU JUST MADE ME SO..SO...actually, you just totally made me realize that I'm falling apart due to anxiety and psychosomatic causes. I don't understand how or why you put up with people like me but I do appreciate it Dr.Bob. Actions speak louder than words right? How's this, I don't have much, and I don't need to be spending more $$$ on add'l testing and most importantly, there are others out there who need this more than I do - hence you and others suffering from HIV. You have my word Dr.Bob. The minute I save up a thousand bucks, you better believe your sweet ass it's coming your way. OH, btw, that 100 is on it's way buddy boy!! Thanks DR.BOB!!!

Response from Dr. Frascino

Hello,

Wow. Thanks! Now you've made my day as well! Thank you for your generous pledge to the Robert James Frascino AIDS Foundation. I can assure you your one gift will touch many lives in drastic need. On behalf of those lives, please accept my heartfelt thanks. It's been my personal experience that whatever I give to others in need in the true spirit of generosity and compassion is returned to me one-thousand fold in a myriad of ways. I'm confident you'll have a similar rewarding experience from helping others. Excellent cosmic karma is coming your way!

Be well. Stay well. Many thanks.

Dr. Bob



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