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Author Topic: Tested Negative After 8 Years. Have some questions.. Please help.  (Read 34442 times)

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Offline trsmt

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Thank you in advance for any helpful insight you may be able to provide.  Here is my story.  I was in a relationship with someone who "claims" to be positive from 1993-1998.  I say claims to be because he supposedly tested positive in 1987 and during the 11 years that I knew him - from 1988-1999 he never took any HIV related medications and didn't have any AIDS related illnesses that I am aware of.  He didn't tell anyone for years after he says he tested positive.  I am not sure if he actually is pos, lied about it or tested false positive.  I know he is still alive, but do not know his health condition now.

Here is my dilemma.  It has been 8 years since my last exposure to him, which included performing oral sex on him and unprotected vaginal intercourse.  In 1997 I had an illness called Bell's Palsy, which is a temporary paralysis of the left side of the face believed to be caused by recent viral illness.  I have had respiratory infections over the years and do not have Asthma or Allergies.  Last October I had "commonly acquired" walking pneumonia which was treated with antibiotics and resolved, though it took 8 weeks for the cough to go away.  I am currently 30 weeks pregnant and believed to have Pertussis, which I was treated with antibiotics, but they say you cough for 100 days with this illness.  I know my immune system is compromised during pregnancy, but it is still troubling.  I have never had any other possible ARS that I am aware of.  No night sweats, etc.  I have noticed that I have 6 or so new moles in the last few years, but the dermatologist says they are normal. 

My anxiety stems from the fact that when my prenatal testing was done I thought I had been tested for HIV.  I found out in July that this was not the case ans went to the local AIDS council to be tested.  I took the Oraquick Advance Oral Test and it was negative.  This is the only test I have had since my 8 year ago exposure.  EVERYONE tells me I can rely totally on the results of this test. 

I am told that after all this time IF I were positive, it would absolutely show and there is no need to be concerned, retest, etc.  Please let me know if this is indeed the case.  I have read online about a few instances where people that were positive for a long time tested negative due to the fact that they for some reason no longer produced antibodies?  I am also concerned about the potential or possibility of a "false negative".  I have read conflicting reports about whether or not this is a possibility. Thank you for your help!

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #1 on: August 17, 2006, 02:07:35 pm »
If you have a negative result after all those years, guess what, you are negative. Now if you have proceeded to have unprotected vaginal or anal sex and you haven't tested, go get tested. Your symptoms can't diagnosis HIV only a test will.

Offline Ann

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #2 on: August 17, 2006, 02:12:54 pm »
tr,

The only time a person might stop producing antibodies is when they are extremely ill and on their deathbed. This obviously does not apply to you.

You are absolutely conclusively negative from your boyfriend eight years ago.

If the father of your child has never tested, you do not know his hiv status and technically you are in a window period from the last time you had unprotected intercourse with him. You already are conclusively hiv negative from three months before your last test.

Don't assume that because you tested negative that your partner also is. The ONLY way to know a person's hiv status for certain is through testing. Exposure does not automatically result in successful transmission and infection. It might happen the first time you are exposed, but it might not happen until the 100th time you are exposed. Ask your partner to test if you feel this is a concern.

In future, if you find yourself with another partner, you need to know that you should be using condoms for anal or vaginal intercourse, every time, no exceptions until such time as you are in a securely monogamous relationship where you have both tested for ALL STIs together. To agree to have unprotected intercourse is to consent to the possibility of being infected with a sexually transmitted infection.

Good luck with the pregnancy and after.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #3 on: August 17, 2006, 03:16:57 pm »
Thanks for the info.  What is your take on the conflicting info. that I have seen regarding "false negatives"?

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #4 on: August 17, 2006, 03:21:37 pm »
I don't believe in false negatives after 6 weeks.

Offline Ann

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #5 on: August 17, 2006, 05:02:48 pm »
tr,

The only false negative results are ones where the test was done too early. Anything before six weeks is too early. A negative result between six weeks and three months is NOT likely to change. A test at three months is conclusive.

Please follow the Transmission and Testing links in the Welcome Thread and have a read.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #6 on: August 21, 2006, 10:40:53 am »
I hope it doesn't seem absurd for me to ask this, but I must in order to let this issue rest.  As you know, I took the OraQuick Advance Oral test.  I no longer question the validity of the negative result, with one possible exception.  Twice a day I use Crest Oral Health mouth rinse.  Its active ingredient is a chemical called Cetylpyridinium Chloride, not what is in most other "mouthwashes" and it claims to be active in your mouth killing bacteria for twelve hours after use.  I called Orasure, but have not been able to contact the right department to verify that this substance would not affect the test.  Does anyone have any input on this?

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #7 on: August 21, 2006, 10:50:44 am »
HIV is not a bacteria, it's a virus. Your mouth wash wouldn't interfer with your results.

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #8 on: August 21, 2006, 10:54:16 am »
I know it's a virus, and the test is for the antibodies and not the virus itself.  I just wanted to make sure that the chemical that was still active in my mouth at the time of the test would not affect the detection of antibodies.  I am trying to let this go, but want to be SURE, as I did have long term exposure to someone that is believed to be pos.

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #9 on: August 21, 2006, 11:07:39 am »
It would not affect antibodies. It would be great if it would, but it doesn't.

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #10 on: August 21, 2006, 11:46:31 am »
I am personally quite happy with the fact that it wouldn't affect antibodies.  Now maybe I can stop obsessing on this.  It's been hard.  I've caused myself so much stress over it, don't feel that well being 31 weeks pregnant, have had a chronic cough for 8 weeks, etc.  It makes it difficult to convince myself that I am really okay.  I've seen this problem so often on this forum and it makes it even worse that I had such long term high risk exposure.  I really appreciate all the reassuring facts and input.

Offline Ann

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #11 on: August 21, 2006, 12:34:48 pm »
tr,

I'm in total agreement with Rodney that your mouthwash would not affect your test results. The tests are FDA approved, which means if something as common as mouthwash use interfered with the results, we'd know about it and either the test would not have been granted approval, or they would make absolutely certain that people knew not to use it prior to a test. No normal day-to-day oral activities will skew the test results.

You are conclusively hiv negative.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #12 on: August 21, 2006, 03:03:04 pm »
I spoke today with the technical assistance dept. at Orasure.  While they do say that the use of mouthwash has no effect on the results of the test, they have not done any specific testing with the type of product I use (Crest Pro Health), which remains active in the mouth for 12 hours after use.  Therefore, they could not say for sure if this product would have any effect on the effectiveness or accurace of the OraQuick Oral test.  This was not an encouraging thing to hear and I know this product was put on the market after the Orasure test was approved by the FDA, but you would think this type of thing would be monitored.

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #13 on: August 21, 2006, 04:20:30 pm »
If you would look at most mouth washes they use the same chemicals as yours, such as Scope. Now you can worry all you want about mouth washes, but they won't cause an incorrect test result.

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #14 on: August 21, 2006, 04:33:37 pm »
Thank you Rod!  I was most concerned when I talked to Orasure and was under the mistaken impression that the active ingredient in Crest Pro Health was "new" and not used in other products. 

Have a terrific day and thanks again for all your input and reassurance! :)

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #15 on: August 21, 2006, 04:39:40 pm »
Rod,

Do you think it is surprising that I tested negative after 5 years of high risk exposure?

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #16 on: August 21, 2006, 04:45:29 pm »
No, not at all. Not everyone that has had unprotect sex with someone that is positive will get HIV. You don't even know if this person had HIV. So you getting a negative test after all those years means one thing and one thing only. YOU ARE HIV NEGATIVE...period. No what ifs, ands or buts....

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #17 on: August 21, 2006, 04:57:05 pm »
It surprised me, especially since I had "commonly acquired" pneumonia last October, which took 2 mos. to stop coughing and currently have had a dry cough for 2 mos. again, although we don't know why because the Dr's wont do a chest x-ray during my pregnancy.  They gave me antibiotics and everything else under the sun and nothing helps.  The combination of those 2 things, muscle aches, I think swollen lymph nodes under arms, newly appearing moles, etc. had put me over the egde and I was convinced I was going to be pos.

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #18 on: August 21, 2006, 05:01:22 pm »
Moles and freckles are not caused by HIV.

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #19 on: August 21, 2006, 05:10:31 pm »
That's what I though, but when I had several of them pop up and then the other stuff, especially the pneumonia and whatever's going on now.  Yikes....


Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #20 on: August 23, 2006, 11:29:49 am »
So, here I am again.  I know that I am being a freak.  I have an appointment with a pulmonoligist, but it's not until the 7th of Sept.  I also called yesterday to make an appt. with a counselor that I used to see, but she can't see me until after Labor Day.  My problem stems from the fact that after 5 years of unprotected sex with someone that is pos., I am having a hard time believing that I am Neg., even after my test confirms it!  I think I would be more able to let it go if it weren't for the fact that I've had a dry cough now for over 2 months. Last fall (October) I had "commonly acquired" pneumonia, which also took over 2 mos. for the cough to go away.  I feel like I have swollen lymph nodes in my neck and under my right arm.  I've also noticed in the last year or so that my extremities (mostly legs) are more sensetive.

In 1997, while I was still in the relationship with the infected individual, I had "Bell's Palsy" which is temporary paralysis of the left side of the face believed to be caused by a viral infection.  Since that time I have noticed that I've had more respiratory infections than previously.

I know I am being nuts, but I would appreciate any advice anyone has on how to deal with my continuing fear.  It is keeping me awake at night.  I am obsessing on it.  I'm sure that's not helping my health, in addition to the fact that I'm in the 3rd trimester of pregnancy.  Things are really hard right now.   :(

Offline Matty the Damned

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #21 on: August 23, 2006, 11:33:18 am »
Oh just get tested for fucks sake.

And read our Welcome Thread

MtD

Offline jkinatl2

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #22 on: August 23, 2006, 11:44:17 am »
Well, you yourself said that you know you are being nuts. Is coming here helping? I mean, all we can do is sorta point to your negative test results and shrug. You don't have HIV. It happens.

In that sense, you are one lucky person. And maybe there's an element of survivor's guilt at play here.

But HIV negative people DO get pneumonia. And Bell's Palsy. And freckles, rashes, zits, and moles. And cancer, and coughs, and stuff. And I submit that if you follow almost any human being for five years, you will find symptoms, specific or non specific, that have no concrete source. Stuff happens to people.

But your test is reliable, and conclusive. You don't have HIV. It might help make things better if you start trying to figure out why that ONE pathogen has taken up so much of your energy. And I think that the online experience is woefully inadequate to deal with that. All I can do, like I said, is point to your negative result and say that whatever is going on, at least you know what it ain't.

So why is that not good news to you? Why is that not a comfort? Why is that so hard to believe? I'm being rhetorical, of course. Those are not easy questions to answer, and here really isn't the best place to try. But I submit that if you enter into a professional relationship with a certified counselor, you will be likely to find the answers. Regardless, you have the answers inside you already, whether or not you use an outside source to help pry them out of the floorboards.

And of course, I forget to factor in the 3rd trimester thing. Mainly because I am a guy, and pregnancy is the something akin to pure absolute magic to me. You might as well tell me you are turning lead to gold in your nose, for all I understand the concept of creation. But from what I have read, pregnancy brings with it a slew of hormonal and emotional situations that can easily influence your thinking process, particularly where the health of your baby - and your own health- is concerned.

Regardless, I am well aware that the disconnect between the heart and the head is profound sometimes. And holding that HIV negative result in your hands does not necessarily appease the feelings you have. But its all we got. Its the best we can do.

They tell you to trust your gut, to become intuitive about your body. And then they say to trust science, and have faith in the quantifiable even when it contradicts your emotions, your heart. It's a tightrope under normal circumstances, and pregnancy is hardly everyday. You are going through a lot, I can tell. eventually, I suspect you will be ok with your status, and certianly will be thoroughly distracted by the life inside you.

But seriously, if you ever figure out how to balance the heart and brain, to make the connection reliable and consistent, feel free to let me know what that feels like.

I sincerely wish you and your child the best of health, and all the peace of a dark and clear night sky.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #23 on: August 23, 2006, 12:00:27 pm »
Matty, I tested negative a month ago.

Offline Andy Velez

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #24 on: August 24, 2006, 08:52:47 am »
OK. You need to take a nice deep and slow breath and let it out slowly. No kidding.

Because you are now on the very slippery HIV jitters slope where there are always more "what ifs" and "just one more question" which in essence continues to fuel your unfounded fears.

Based on what you have reported you have absolutely and reliably tested negative for HIV. You are HIV negative. Period. End of story.

I don't know enough about you to speculate on what might be continuing to dirve your concern, but you have no basis in HIV science to be worrying about your HIV status.

Take another breath and get on with your life. No kidding.

Cheers,
Andy Velez

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #25 on: August 24, 2006, 10:55:22 am »
I am keenly aware that I am dangerously close to becoming obsessive over this and I appreciate your patience with me.  My continuing concerns stem from the pneumonia that I had last fall that took forever to get over and the fact that I have had a dry cough now for over 2 mos.  Because of the pregnancy my doctor has limited his treatment of the cough to "specualtion", though I am going to see a pulmonoligist in a few weeks.  I also seem to have swollen lymph nodes in my neck and under right arm.  I know this must be diagnosed by a physician, but that's how it seems.  When my prenatal testing was done in March they did a CBC and the % for lymphocytes was 26%.  The normal range was 20-48%.  This seems low to me.  Any thoughts on that?

To make a long story short, my father died in March of 2005, shortly after that I left a job that I'd had for 5 years and loved, became involved in litigation with my former boss, etc.  Then in Feb. I found out I was pregnant.  My live in boyfriend and I haven't gotten along so well since my fathers death, mostly due to my depression.  The last year and a half has been the most traumatic time of my life.  I know this could and probably does affect my health, but when I started getting things like pneumonia and this recent respiratory infection, it freaked me out.  Especially considering my long term unprotected exposure to a positive individual (5 years).

I even sit and question the reliability of the test.  It was an Oraquick Advance Oral test.  Everyone tells me that after 8 years the reliability of the negative test result is 100%, particularly since I am pregnant and would have a higher level of antibodies at this time.  I know the test is very sensitive, but how can you be sure the sample of oral fluid was enough to detect properly?  Orasure says that after the window period the reliability is 100%, but their testing does show false negatives??  This still confuses me.

I've gone mad.  I know....

Offline Ann

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #26 on: August 24, 2006, 11:09:53 am »
tr,

You do not have hiv. You have tested conclusively negative.

I want you to think seriously about getting some support for your depression in the form of counseling, now, before the baby is here. New babies have a way of making anxiety and depression worse and you owe it to your unborn child - and yourself - to get these issues sorted out.

You do not have hiv. Please get some help with the other issues in your life - hiv might be a convenient way to take your mind off of what is REALLY going on with your emotions, but it won't make things better.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #27 on: August 24, 2006, 11:29:17 am »
Ann,

I called 2 days ago to make an appointment with a counselor that I had seen previously.  She can't see me until after Labor Day, but I will be going in then.  I know I need some help with the variety of depression/stress issues that have been plagueing me for some time. 

Do you think these emotional issues could cause/contribute to the respiratory problems that won't clear up?

Ann, could you just help explain to me the situation with false negatives and the Oraquick Advance oral test?  It would help me reduce my obsession, I hope.  Also, what's your take on the lymphocyte count from March?

Offline Ann

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #28 on: August 24, 2006, 11:39:43 am »
tr,

There is nothing to explain about "false negatives and the Oraquick Advance oral test" because they don't happen. The only time an hiv test might be "falsely" negative is if it is taken before three months after exposure.

You might be thinking of false POSITIVE results with the Oraquick Advance - they do happen sometimes but as any positive result is double checked with a Western Blot, they always come to light. You did not get a false positive so this does not concern you.

Emotional issues and stress can indeed be related to ANY physical problems that won't clear up. Stress makes it more difficult for your body to function properly and all the more so when you're pregnant, which is a drain on your body's resources at the best of times.

You are absolutely, reliably hiv negative. Time to move on from hiv issues.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #29 on: August 24, 2006, 12:04:50 pm »
Ann,

I'm going to try and get over this.

I was referring to false negatives on the test, though.  There is a test "insert" from Oraquick showing their testing data.  I have provided the link below and am still confused by this?

http://www.fda.gov/Cber/pmalabel/P01004716LB.pdf#search=%22oraquick%20advance%20false%20negative%22

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #30 on: August 24, 2006, 12:44:39 pm »
What is your point? There is nothing in the insert that we didn't know about and if you would have any of the diseases like lupus you would have known. Everything that you have given is based on that you did the test correctly. We have no control of that.

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #31 on: August 24, 2006, 01:00:00 pm »
I wasn't referring to the section regarding "other conditions" of people tested.  I was referring to table 1 that shows a test of 767 persons known to be positive and 762 were reactive on the test.

I was at the local ADIS council for the test and performed it correctly according to the testing individual and the Oraquick info.

Offline Ann

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #32 on: August 24, 2006, 01:00:45 pm »
tr,

The false negatives mentioned in the insert were obtained through testing known hiv positive people who were on anti-hiv medications. YOU are NOT on anti-hiv medications.

You are absolutely, conclusively hiv negative. It's time you put this to rest. If you need help in breaking your obsession with hiv and this website, a time out can be arranged to help you on your way.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #33 on: August 24, 2006, 01:23:15 pm »
Thanks for the clarification of the false negatives, Ann.  That info. is helpful.  I had heard that false negatives sometimes result from HAART therapy, but did not know that was the case in this instance.

I'm going to try and stop posting here now. 

Thank you all for your gracious advice and assistance.  You have helped me more than you could know!

I wish you health, happiness and peace...

Thanks again.

Offline usedtobeworried

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #34 on: August 24, 2006, 05:18:44 pm »
Trsmt,

I hope I can be a friend and a help to you. The first question you probably have is why is a person with the screen name usedtobeworried on a Fear of Having HIV message board. Well, to answer the first, I guess I wanted to see if anyone was still on this board, just like I used to be. I like you, just delivered my second baby. I was not screened for HIV with either of my daughters because I have been in a relationship with my husband for the last ten years, and we have not had any other partners. Second of all, right before I got pregnant with my first daugher I had my first and only HIV test. What I would like to say to you, is that I was EXACTLY in the same boat as you. When my husband and I had our first child we had been together seven years and I had had a very promiscuous lifestyle before meeting him. I also had contracted herpes in college. I ASSUMED since I lived a very risky lifestyle of unprotected sex from MULTIPLE partners, I MUST be infected with the disease. After all, I had another STD, why not HIV? I played the whole "what if" game like you. I used to think, well, I tested negative, but maybe they did my test wrong. Maybe because I had taken Iboprofen the night before the test, that screwed up my results, maybe because I was sick at the time of testing, that screwed up my results. I know EXACTLY what you are going through and it is NOT fun. When I delivered my first daughter, for awhile I was elated. Then I started thinking, what if I passed it on to her? I was such a freak when it came to her. If she got the sniffles, I thought, well, that's HIV. I read the internet like crazy, I was on AIDSMEDS.com like crazy. I'm sure everyone on this site thought I was mad. Andy was wonderful with me and so was everyone else. They told me the EXACT same things as they are telling you. I know it is easy for me to say, BELIEVE THEM, but chemically something in your brain is not allowing you to accept that fact. I struggled for so long. I wanted to end my life. I drank to ease my fears. I saw counselors for my worries and all they told me was "you don't have HIV". Well, that didn't help because in my mind, I believed I did. I would obsess over my body, my glands, my illnesses, my husbands illnesses and my daughters illnesses. It took a major toll on our marriage. It sucked and although everything is hunky dory now, it took a long time to rebuild all of that. FINALLY, I sought the help of my family doctor, who has the most wonderful bedside manner and he helped me through all of my irrational fears. He explained to me in details why I had to believe my test, and why it wasn't wrong. We laugh about it now together but it took us awhile to get there. He had/has me on a medication to help put those obsessive fears at bay. We worried a bit when I became pregnant with my second daughter, but my fears and worries were nowhere as bad as my first pregnancy. I have only gotten back on them because of how unpredictable hormones can be and now because for the first time, I'm able to stay home with both girls and be a stay at home mom. Do not give up hope. Find SOMEONE that you know and trust to share your fears and worries about, who know the facts about HIV and can tell you that you truly are negative. If you have to go on medication after delivering your child, that's not the end of the world. I'm sure the baby would much rather have a mommy who is calm and relaxed than someone who is so worried with fear everyday. Believe me, babies pick up on your emotions. Enjoy every moment with that baby, because they are not babies for long. My second is growing so fast and sometimes I cry thinking how much I missed out on the first girl because of my obsessive worrying. There truly is light at the end of the tunnel. And not to sound religious or hokey, but everyday we are given is a gift from God, as well as the gift of a child. I hate to see you this way, but you remind me so much of myself. "one more question", "what If...." Please don't do this to yourself. I hope in time you can look back at this like I did and laugh. In fact, I just saw my doctor this week and we were sitting and laughing at the state I used to be in. In fact I felt the need to apologize to him, because I wanted him to know that deep down, I wasn't just an obsessed freak, I was a good person, who made plenty of mistakes in my past, but I can accept that now, as well as my negative status. Don't forget this time, think of those who have tested positive who wish they were in our shoes and maybe consider giving to your local AIDS charity. I hope I don't sound like I'm preaching, but you really hit home for me, and I hope that I can help you, like so many helped me. Just hang in there. Goodluck with your baby and please enjoy every minute. It goes by way too fast. Somedays a little slower than others, but fast!

Best of luck.

Please take care,

Usedtobeworried

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #35 on: August 25, 2006, 11:59:30 am »
Thanks for your input "used to be".  It is comforting to know that I am not the only one that acts the way I have been.  The fear and irrational thoughts have been overwhelming.

I think I would have a much easier time with all of this if my health wasn't in shambles at the moment.  After having pneumonia last fall that took 2 mos. to get over, now I've had a dry cough for over 2 mos. that just will not clear up.  Of course, I know these 2 things are on the list of AIDS related symptoms and it's terrifying.  In addition to that, now I seem to have swollen lymph nodes under my left arm and in the neck.  It's making me crazy!  After such a long period of exposure to someone who is pos, it's frightening.

It was the Oraquick oral test that I took, and now instead of questioning everything else about the test, I am wondering how much oral fluid the test needs to be accurate?  I can't seem to find this info anywhere.  Everything simply says you swab your upper and lower gums once, which I did.  Just one more thing to obsess over.  If anyone has insight on this question, I would love to hear it.

I will be seeing a counselor that I used to go to after Labor Day.  Hopefully that will help.  I have also been thinking that meds may be in order when the pregnancy is over and I can take them.  I guess we'll see.  What would help the most is if I felt physically better, and I'm sure the stress from all this is not helping matters!

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #36 on: August 25, 2006, 12:24:46 pm »
ARS does not mean AIDS Related Symptoms. It means Acute Retroviral Syndrome. The only thing terrifying, is that you won't accept your negative result. 

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #37 on: August 25, 2006, 12:38:20 pm »
Come on.  I know I was expressing my "unfounded" fears, etc.  I was also trying to ask a technical question about the Oraquick test that I can't find the answer to anywhere. 

This has in no way been an easy situation for me, as I'm sure you can understand.

Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #38 on: August 25, 2006, 12:44:49 pm »
No, the fact is I don't understand why you won't accept your negative result. I don't know what else you want anyone here to say about it.

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #39 on: August 25, 2006, 12:55:44 pm »
I wanted to know if anyone knew how much oral fluid had to be obtained for the Oraquick oral test to have enough of a specimin to work?


Offline RapidRod

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #40 on: August 25, 2006, 01:02:03 pm »
Apparently you had enough to get a negative result.

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #41 on: August 25, 2006, 01:15:09 pm »
So, if there wasn't enough fluid on the test strip, the test would be "inconclusive"?

Offline jkinatl2

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #42 on: August 25, 2006, 01:31:26 pm »
Honestly, given that the makers of the Oraquick are still petitioning to have that test released to the consumer market (I'm a little torn regarding that, myself) the test is VERY effective under a WIDE variety of circumstances. Dry mouth, booze, sweat, saliva or lack thereof. The thing is VERY sensitive - which is why it is currently being used on a "prosumer" level, instead of having to be a test performed by degreed experts in a hospital environment.

It's a sensitive test. Very much so. And highly accurate.

You can rely on it to determine your HIV status. Seriously, HIv is WAY too important a health concern to have unreliable or iffy testing procedures in place. Oraquick has passed the most stringent tests available in that regard. Sometimes, oddly, people do not trust it BECAUSE it is so non-intrusive, and easy to implement. And hey, if someone WANTS a blood draw, I think there should be that option in a large clinic. But the difference there is almost purely psychological.

You are absolutely, reliably, completely, no doubt, assuredly, totally, without question HIv negative.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline jkinatl2

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #43 on: August 25, 2006, 01:45:49 pm »
PS: I don't mean to come across like a shill for the drug industry or anything. I am always really skeptical of stuff, and never, ever believe press releases or ads... or doctors, necessarily, unless I can grab onto the science. And I have some problems with the capacity for false positives in the Oraquick tests, which, if not followed up with blood-drawn ELISA/WB testing, could lead to some awfully freaked out people and some messed up lives. THAT is my main concern with Oraquick being released to the public. Well, that and the lack of counseling.

But it is a test that is very sensitive, and very capable at picking up HIV infection. If taken at the appropriate time (thirteen weeks past infection) it is definitive.  The level of standardized excellence regarding approved HIV testing has coem a long way towards restoring my faith in the scientific process as filtered through the need for financial solvency. Such a thing does not always happen. But it certainly can. And in the case of the Oraquick, and HIV testing procedure/equipment in general, it seems to have done so to an almost unprecedented degree.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #44 on: August 25, 2006, 03:34:00 pm »
Jkinatl2,

Thank you for your response.  The confidence that you and the other experts on this board have in the reliability of a negative result in my situation is comforting.  I am trying hard to convince myself that I need to let this go.  It's hard with the illnesses currently bringing me back to the doubt.  Just an hour ago or so I found myself in the bathroom looking at my tongue because I've had a sore throuat, too.  Of course it has a white coating that only bothered me more.  It's a vicious cycle that I need to find a way to break.

I know from looking at other posts that I am not the only one obsessed with this, nor the only one unable to just take a negative test result and go on with life.  Somehow, eventually, this has to get easier.  Otherwise I'm going to be a nut case and that's not a good combination with being a soon to be new mother.

Offline usedtobeworried

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #45 on: August 25, 2006, 04:22:38 pm »
Trsmt,

I swear reading your messages reminds me of how I used to be, it's not even funny. So many of your "symptoms" can rationally be explained. Like the cough for instance, you don't know how many pregant women I have known who have had horrible coughs, especially toward the end of their pregnancies. Some so badly that they broke ribs while coughing. It's common. So many things happen to our bodies when we're pregnant, it's both weird and amazing at the same time. Now if your due to deliver in a few weeks, think about how much room that baby of yours is taking up in your tummy. You don't think your breathing would be compromised? You really are okay. But, like you, I sat all day and everyday, checking out my glands, my tongue, any funky spot I had on my skin, a rash my husband would have, etc. You will drive yourself insane checking those things. You probably read on here when someone says to trust your result and you feel a bit of relief or a feelign of elation. Then you think of something else that you might have forgot about or overlooked and then you worry again. It is a vicious cycle that will never end, unless you stop checking yourself out. Don't feel your glands, they're fine and I bet they aren't swollen.

The other thing I wanted to point out to you is that stress will kill you before any disease does, and I'm serious. When you're under stress, your immune system is low, hence your probably prone to infections and illnesses. Now, I'm not a doctor and don't think that stress would cause pneumonia (sp?), but if your stressed out enough, you may be more succeptible to things like that. And I'm sure you're not sleeping much these days: anticipation of the baby, fear of your negative test result or false negative, plus the baby at this point is probably making you completely uncomfortable. Plus, with the white tongue, mine gets white from smoking, dry mouth, foods I eat. Don't look at your tongue. You would know if you had thrush. And on a side note, it's very common for babies to get this as well, so if it does happen to your newborn down the road, it doesn't mean that he/she has HIV. I'm sure your tongue and or throat may due to your breathing these days. Hell, I huffed and puffed my last few months taking a few steps to the car each day, or to get in and out of bed. Pregnancy is a beautiful wonderful thing, but it does wreak havoc on a woman's body, but you will soon realize, all that uncomfortablness and pain you went through is all forgotten when you hold that baby in your arms for the first time and for the rest of their lives. Hell, my almost three year old hardly will let me hold her anymore, because she's a "big girl" now and I miss that. It's all going to go fast for you, please don't waste this wonderful time stressing. I'm fortunate that I get to experience again with my second child, but I really did miss out on a lot with my first due to stress.

Lastly, I don't know how credible this site was, but when I was under major anxiety a website called anxietycentre.com listed all of these stress and anxiety symptoms and you would be amazed at how much can happen to your body due to stress.

Please take care. Please believe when everyone here says your okay.

Don't do this to yourself anymore. And just a word of warning, pregnancy hormones are bad, but they get a little worse after you deliver before it gets better. Hence postpartum depression.

Try to nip it in the bud before it gets worse and stop checking yourself out, you'll only cause more worry and anxiety over it. We're not doctors, so don't diagnose yourself.


Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #46 on: August 28, 2006, 10:15:25 am »
Well, I went to the urgent care clinic Saturday to try and get some help with my chronic cough.  The Dr. there thinks I have allergies and prescribed Zyrtec.  Just as everyone here predicted, I do not have any swollen lymph nodes.  All of this came as a great relief to me.  I spent the weekend in relative calm for the first time in over a month.

And then comes last night.  At 2:00 am I woke up with horrible night sweats.  I was totally drenched, hair soaked, etc.  The room was warm, but not hot.  Really not hot enough to cause this. 

So here i am, worried yet again.  Questioning my negative test, again.  Being a pain to all of you, again.

Offline Ann

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #47 on: August 28, 2006, 10:20:04 am »
tr,

You are conclusively hiv negative, regardless of symptoms.

Maybe a time out will help you on your way. This is your last warning. Go get some face to face help with your anxiety - we cannot give you the counseling you need here and if it takes giving you a time out to encourage you to get the appropriate help, then so be it.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline trsmt

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #48 on: August 28, 2006, 10:22:36 am »
I will be seeing a counselor when she returns from vacation after Labor Day.  Until then, there is little I can do.  Sorry to be a bother to you.

Offline Ann

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Re: Tested Negative After 8 Years. Have some questions.. Please help.
« Reply #49 on: August 28, 2006, 10:36:47 am »
tr,

Well, there's nothing more we can do either. There's only so many ways we can tell you that you are hiv negative.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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