Testing for non-B strains & non M groups in NYC area

[Caringhusband]

About a few years ago I had a few unprotected exposures. ONe was with a girl I was dating, who was from Northern Africa and another one who was a CSW on a trip to Brazil.

I'll spare you from the plethora of symptoms I'm having, suffice to say they are very similar to the ones associated with HIV exposure (swollen lymph nodes, diarrhea, fatigue) . If done several tests, all of them negative, but I just learned that some of the test used in the US are better tuned to detect HIV-1 group M type B, (as well as Group O, and HIV-2).

Besides the CDC in Atlanta, is there anywhere in the NY area where I can get tested for those different strains ? please advise ASAP.

On a more critical side note, about 6 weeks ago, my wife started to have a blurred vision and has been losing her eye sight since then, she tested poz for VZV. While she also tested negative to the standard HIV Ab tests, the deterioration of her immunity has been puzzling the doctors and I want to completely rule out the possibility of an HIV infection, so that they focus on other parts to heal her illness.

Please help....

[jkinatl2]

Hello!

I am sorry you are unwell. I am even sorrier that you have been stressing over what appears to be highly outdated information regarding HIV testing.

For example, the Oraquick, available in pharmacies over the counter or on line, is designed to pick up HIV 1 and 2.

http://www.orasure.com/products-infectious/products-infectious-oraquick.asp

It also detects the extremely rare O and M subtypes.

Note, I am NOT a shill for the Oraquick people (but Oraquick people, if you are reading this please know that I can be easily convinced to become one) but it's rather ubiquitous at this point, and since you can order them online, they are considered as accurate as any other test, so long as they are taken at the correct testing period. The window for HIV testing remains three months after the last exposure, but research shows that most people seroconvert within 22 days.

Speaking of window periods, you have been having symptoms for a long time. The initial symptoms that sometimes (but not always) accompany HIV infection is NOT the result of the virus itself, but rather the result of the body's initial recognition of the virus and the production of antibodies. After a week (sometimes longer, sometimes shorter, sometimes there are no symptoms) the body settles down, more or less, and begins the long journey of battling HIV. At this point a person will test positive.

That you have experienced ongoing problems is, at this point, a sign that whatever is affecting you and your wife is not HIV. But if you feel the need for another test, the Oraquck seems to be an easy and elegant solution.

[Ann]

CH,

VZV (varicella zoster virus - aka shingles) is a problem ANYONE can get later in life who has had chickenpox when they were younger. You do NOT have to have a compromised immune system to get it. Stress can often be the cause. (Maybe she's been stressed out suspecting you've been having affairs?)

There are basically three nerve pathways VZV can travel down to cause the shingles rash, depending on which part of the spine the virus has been hanging out in. It normally only presents on one side of the body at a time.

One nerve pathway originates in the lower back, and causes the rash in the hip/buttock/thigh area. One originates mid-back, and causes the rash in the kidney/abdomen area. In both cases the rash usually starts near the spine and wraps around the body, following the path of the nerves. (VZV is a herpes family virus, and herpes viruses like the nervous system.)

One pathway originates in the neck area and can cause the rash on the head and face. It can also go into the eye/ear area (sometimes without causing an obvious rash elsewhere on the head) - and it can be difficult to diagnose when it goes into the eye/ear.

But it has NOTHING to do with hiv. Chickenpox yes, hiv no.

As Jonathan told you, the tests today will pick up the strains you're worried about. Provided your last hiv test was three months or more after your last incident of unprotected anal or vaginal intercourse with anyone other than your wife, then you are conclusively hiv negative.

If you feel unwell, see a doctor. Whatever is going on has nothing to do with hiv.

I feel for your wife - I know someone else (hiv negative) who had a shingles outbreak in the eye area and she's had trouble with that eye ever since. It sucks.

Ann

[Caringhusband]

Hi jkinatl2 and Ann:

You guys are great. I really appreciate your feedback and effort to support people that are under a lot of stress. It's really remarkable what you do and I commend you for your selflessness and considerate.

I'll get the Oraquik test as jkinatl2 suggested, and I'm confident the results will be negative. Perusing this forum & site, I noticed that a testing negative after the window, trumps any existing symptom (even though the Oraquick site mention a 91% specificity for HIV+, it's not clear how many were outside the WP).

Nevertheless, I know this is an HIV support forum, and it's challenging to diagnose from afar, but considering the plethora of symptoms I've been having in the last years, based on your experience is there anything else there that persistently resembles HIV symptoms such as : swollen submandibular glands (sometimes painfull), intestinal malabsorption + occasional diarrhea, sebum + seborrhea dermatitis in the forehead & nose, swollen inner cheek + peeling + white patches ,fatigue and malaise ?

I'm sure you come across a lot of people with the same symptoms above and the majority test negative, but it's quite puzzling to have all this symptoms a few weeks after the exposure - specially when I have never had any sort of infection or illness before this event...I hope you understand.

Once again, thank you for your help and support.

Stay healthy...

CH

[Ann]

CH,

Have you ever been tested for syphilis? It's nicknamed "the great imitator" because - just like hiv - it can mimic many other illnesses. And yes, you've also been at risk for syphilis.

Primary syphilis presents as a painless chancre (aka sore or ulcer) that if you don't see, you won't know it's there. The chancre will heal and go away, but syphilis remains behind inside the body causing all sorts of havoc.

Syphilis, UNLIKE hiv, can be transmitted through simple skin-to-skin contact during sexual activities and oral sex.

Syphilis, LIKE hiv, shares a three month testing window with hiv for a conclusive negative result.

You should also be tested for all the other, MUCH more easily transmitted STIs. Hiv isn't the only one out there. Many of the other STIs can be present with no obvious symptoms, so the ONLY way to know is to TEST.

Whatever is going on with you has NOTHING to do with hiv. You are conclusively hiv negative. You just need - if you haven't already - to rule out the other STIs.

If you have ruled out the other STIs as well, then go see a doctor to find out what is actually going on. Whatever that may be, it is NOT hiv.

Ann

[Caringhusband]

Hi Ann:

I have been tested for all the major STDs, including Syphilis. So far, only my HSV1 and HSV2 Ab came back very high...(8 and 6.6, while 0.9 is the reference value). But they didn't check for the IgM.

About my wife, I appreciate your insight on shingles, vision loss - thanks a lot. I'm sorry for my despair, but none of the factors commonly associated with her allegedly "optic ischemic neuropathy" appear in her case. Her vision had progressed, than had remission, and then progressed again - and it's still in flux. She has pain in the eye (AION is usually painless and stable), she's below the low range of age (<50), no vascular or clot problems, no sleep apneia. These are the major findins which usually doesn't lead to an optic ischemic neuropathy diagnosis, specially if we consider that her  WBC & LTC (along with a 99.5 fever for a couple of days) were in the woodsheds a few weeks after the onset of the vision loss. Her last doctor even wrote on the notes that she was reaching the AION (Anterior Ischemic Optic Neuropathy by exclusion, and then started to look for possible labs to corroborate this etiology. Once again, tests trumps any symptoms and patient's knowledge of its body.

I appreciate you reassurance that a negative test at 3 months is conclusive, the challenge is that if she doesn't have Ab,Ag or VL for any known HIV strain, she will never test positive (which raises a polemic questions: would you rather have HIV or loose an eye ?) and can't be properly treated. My fear is that she might be getting both and no treatment....thereby my questions about testing for rare strains or groups.
Somehow, I have the feeling of this is resembling the initial stages of discovering a disease that hasn't been diagnosed yet (i.e. Syphilis 100 years ago, HIV in the early 80, etc) . Her health seems to worsening and the Drs. can't find anything that can explain her frail health, and even less the cause of the AION - so that we can safe the fellow eye at least. The only hint that came from the Rheumatologist is that this was something auto-immune and viral...not sure where to look to.

My apologies for wreaking some of my frustrations...and thank you for reading it and caring about other people. you are an angel....

[Ann]

CH,

While I empathise with your situation, there's nothing more we can do for you here.

You have ruled hiv out as a possible cause to your wife's illness - and no, it's not some new strain. New strains (sometimes called clades) have emerged over the years, yes, but it only comes to light after a person has tested hiv antibody positive - and the genotype tests come back odd.

Keep working with your wife's doctors and specialists* to find out what is going on. Whatever that may be, I wish you the best of luck in getting to the bottom of it and hopefully having it put right.

Ann

*It might be an idea to call in a Tropical Disease Specialist, given that you've spent time in tropical areas of the world. There are many other "bugs" out there other than hiv. I hope you find your culprit.