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Author Topic: Ann or Andy, still concerned...  (Read 3585 times)

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Offline stillscared13

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Ann or Andy, still concerned...
« on: October 20, 2009, 08:43:14 AM »
I'm aware that most experts say there is little to no risk with oral....I still have my concerns.

I had both receptive and insertive oral with a man of unknown status.  I was exposed to ejaculate orally.  His first claims where that he was 100% clean, but then failed to respond to subsequent e-mails at all.

I know you don't diagnose by symptoms, so I am not looking for that but rather specifics about time lines... any all help is greatly appreciated.

1.  I did not have symptoms until the 10th week, is this always too late for ARS or are there exceptions?

2.  Are both of you 100% confident that if I am otherwise (as far as I know) healthy that a 13 week (90 day) negative blood test is 100% conclusive.  Meaning would you give a friend advice that he is clear to resume sexual activity with his spouse?

3. Have either one of you with all of your years of experience seen someone with a delayed seroconversion?

I want so badly to put this behind me and move on with my life but with multiple doctor visits and blood tests they still can't diagnose my symptoms and I am so terrified I will be the ONE who is not textbook.  I have seen my primary care 3 times (3 blood tests all negative last one at 90 days), a specialist for arthritis (I am 34) for the constant joint pain and strange sunburn like rash and I have been to 2 dermatologist who see the slight blotchiness but assure me it is not a rash regardless if it is warm to the touch or not.  I have also had a lot of lymph node area tenderness and some muscle ache.

Please help....and thank you.
« Last Edit: October 20, 2009, 08:45:07 AM by stillscared13 »

Offline Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #1 on: October 20, 2009, 09:04:25 AM »
The exceptions for testing out beyond 3 months are quite specific. That is recommended when extensive IV drug use has been involved, there has been an organ transplant or treatment for a major illness such as cancer. Otherwise 3 months is a conclusive and reliable testing point.

Although your concern is understandable, simply because you've had no explanation for your symptoms does not by default mean HIV is the cause. And in fact from what you are reporting seems clear to me that whatever is going on has nothing to do with HIV.

There is an issue you haven't mentioned. You strayed and often that induces a lot of anxiety and guilt. You can't undo this bit of your personal history. You're a dog like a lot of us. The best you can do for all concerned is to take a breath, let it go and get on with your life.

HIV is not your issue. Unfortunately at this point you are viewing everything through a mindset that sees symptoms everywhere. But really, you have no basis whatsoever in HIV science to see that as the problem.

You might consider talking with a counselor or other professional to get some support with the emotional aspects of this situation.

I don't see any reason you can't resume relations with your spouse. HIV is not your problem.

Cheers.
Andy Velez

Offline stillscared13

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Re: Ann or Andy, still concerned...
« Reply #2 on: October 20, 2009, 11:07:58 AM »
Thank you sir.  You're absolutely correct about the guilt and psychological ramifications.  However, being a rational (even in time of duress) person I am still dumbfounded by the lack of medical diagnosis for my aforementioned health issues....and with HIV being the only wild card from a timing standpoint this compounds my fear.

As for ARS at 10+ weeks?  Not possible? What about it lasting for 5 weeks?  (I am 15 weeks post exposure now)

You said you feel comfortable with me resuming sexual activity with my spouse...is that because you have never seen (without the above qualifiers; chemo, cancer,iv use) a person seroconvert beyond 13 weeks?

The guilt is one thing, but possibly harming my wife is something else entirely.

Lastly, I read a report where someone laid claim to HIV laying dormant in the testicle.  Meaning the person did not test positive for 6+ months.  Is that possible?  Can HIV in fact lay dormant in an otherwise healthy person.

Again, thanks for the support and keep up the awesome work you do.

Offline Ann

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Re: Ann or Andy, still concerned...
« Reply #3 on: October 20, 2009, 11:19:39 AM »
Still,

You've conclusively ruled out the "wild card" of hiv. You do not have hiv.

ARS symptoms, if they happen at all, happen two to three weeks following infection, NOT ten.

I've never seen a person test negative at six weeks and have it turn positive, never mind three months. You are conclusively negative.

Hiv antibodies do not lie "dormant" in the testicles or anywhere else. When a person is infected, they will develop antibodies somewhere between two and five or six weeks, with the average time to seroconversion being 22 days. It's the antibodies the tests look for, not the virus itself. The person claiming to have taken more than six weeks to test positive had to have had a risk other than the one he was claiming.

You do not have hiv. Keep working with your doctor to find out what, if anything, is wrong with you. Whatever it is, it is NOT hiv. You never actually had a risk to begin with.

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 Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #4 on: October 21, 2009, 09:04:17 AM »
Just Thinking, although your intentions are good, you are not authorized to be responding to the questions of others in these threads. As stated in the Welcome thread which opens this section, only those so authorized are allowed to respond in these threads.

Thanks for your cooperation.
Andy Velez

Offline stillscared13

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Re: Ann or Andy, still concerned...
« Reply #5 on: October 21, 2009, 10:17:59 AM »
So to clarify, in your expert opinions and with your years of being actively involved of helping prevent the spreading of HIV, there is no reason for someone like myself to test beyond the 13 weeks?

No chemo, no IV drugs etc....

Andy, have you ever heard of someone changing from negative to positive after 13 weeks?

Dealing with what's going on with me is scary enough as no dr has been able to diagnose it, but potentially infecting my wife would be the absolute worst thing I could imagine.

The irony in these weird unexplainable symptoms coming on during the proceeding months of my ecounter is almost too much to understand for me.

Thanks again

Offline Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #6 on: October 21, 2009, 10:24:51 AM »
That's right, there's no need for testing beyond 13 weeks.

And no, I have never known of any to test positive beyond 13 weeks except when those qualifying elements which I mentioned previously were involved.

The problem is that once you are in an HIV-jitters mindset + guilt, then everything that happens physically is misread as another ominous sign of HIV. But nothing you have reported is either HIV specific nor gives me any reason to think that HIV is your issue.
Andy Velez

Offline Ann

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Re: Ann or Andy, still concerned...
« Reply #7 on: October 21, 2009, 10:36:26 AM »
Still,

NO. You do not need to test past thirteen weeks. You never had a serious risk for hiv infection in the first place. Have you been tested for other STIs? They're much more easily transmitted than hiv, it is possible to be infected with many of them through oral and some of them often have no obvious symptoms. Symptoms which are not obviously cause by STIs can include rashes, lymph swelling, muscle aches and joint problems.

If you read the Welcome Thread before posting like you're supposed to, you will have read the following posting guideline:

Quote

Anyone who continues to post excessively, questioning a conclusive negative result or no-risk situation, will be subject to a four week Time Out (a temporary ban from the Forums). If you continue to post excessively after one Time Out, you may be given a second Time Out which will last eight weeks. There is no third Time Out - it is a permanent ban. The purpose of a Time Out is to encourage you to seek the face-to-face help we cannot provide on this forum.


Please consider yourself warned.

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 stillscared13

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Re: Ann or Andy, still concerned...
« Reply #8 on: October 21, 2009, 10:47:38 AM »
Thanks -

Ann -  yes, I have had blood work for every potential STI as well as all other infectious diseases.  They have gone as far as looking for arthritis and or lyme due to the joint pain, rash and painful lymph nodes. 

It's the medical professionals inability to determine what is wrong with me that gives me the continued pause over HIV infection.

The one that causes the greatest concern is the heated feeling on my arms, chest, face, and lips and the overall appearance of blotchy sun exposure.  I have heard people say that is what ARS rash looks and feels like and others who have said that it does not feel heated nor does it appear that way.  While I am aware diagnosing symptoms is futile, does that sound like an early HIV rash? 

Thanks for the continued support. 

Offline Ann

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Re: Ann or Andy, still concerned...
« Reply #9 on: October 21, 2009, 11:37:06 AM »
Still,

No, that sounds nothing like the rash that sometimes accompanies primary hiv infection. Also, the rash would appear within two to three weeks after the infection has taken place, not weeks and weeks later. It would also not remain for more than a day or two.

You believe your other test results, why do you not believe your hiv test results? You do not have hiv.

And please keep your warning in mind. You will not be permitted to use this site to continually question your conclusive negative hiv test results.

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 stillscared13

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Re: Ann or Andy, still concerned...
« Reply #10 on: October 29, 2009, 12:08:36 AM »
Ann or Andy -

I'm posting again as I have yet to determine a root cause for my symptoms..which ultimately makes an otherwise sane man a neurotic mess.  I have been to 5 dr's at this point.  My PCP, two dermatologists, my allergist, and a specialist for rheumatoid arthritis.  Not one of them have found a single thing wrong with my blood work.  (albeit no tests for STI/STD or HIV have been done after my 90 day tests)

Here are my main concerns and as I know you are not MD's, it's more your HIV specific knowledge base I am calling on:

1. You both stated that you have NEVER known anyone to test positive after 90 day (outside of chemo patients or severe immune suppressed individuals)  Have you EVER known of a case where someone contracted HIV through mutual oral sex?

2. Have you ever know of anyone to have symptoms that persist for over one month?

You have both stated you feel I have CONCLUSIVELY ruled out HIV and that further testing is futile, but it's hard to except that when not a single doctor can diagnose my symptoms.  Joint pain, painful lymph nodes, heated blotchy skin, dull muscle aches, abdomen and groin (testicle) pain etc.....I appreciate what you all do here, specifically for someone like me who has no where else to turn.

Thank you -

Offline Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #11 on: October 29, 2009, 08:30:08 AM »
No, I've never known of cases in which the symptoms of ARS lasted for over a month.

I've known of a handful of cases,  and I mean just a handful in over 26 years of working in HIV, in which people claimed they'd had no other risk than oral and the source of infection remained unclear. I won't say that infection can't happen in that manner sexually, but I can also say that under careful investigation those claims of oral infection do not hold up.

In terms of giving oral without condoms or dental dams, it really finally is up to each person to decide what level of risk they are comfortable with.  

Simply because your doctors have not been able to determine the cause of your symptoms does not by default mean HIV is the issue. There is absolutely nothing HIV-specific about your symptoms, no matter what your mind keeps scaring you with to the contrary. 
Andy Velez

Offline stillscared13

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Re: Ann or Andy, still concerned...
« Reply #12 on: October 30, 2009, 02:49:31 PM »
Thanks Andy -

Last question about testing:  Would the rapid test that is used at Planned Parenthood be as reliable as an Elisa blood draw?  I had negative blood tests (through Quest and my PCP) at 3, 10 and 13 weeks...and even though you feel that is conclusive with my continued mystery symptoms I may go in for a 4 month follow up using the Rapid Test. 

I don't want to be newly found statistic but I can't shake this HIV fear.  The CDC publishes so much contradictory info as to what the forums say, it's scary stuff. 

As always, thanks for your advice.

Offline Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #13 on: October 30, 2009, 03:04:22 PM »
Yes, that test would be reliable for collecting what I certainly expect will be another negative result.

Fortunately fears are not facts so I see no reason to think you will get anything other than another negative. 
Andy Velez

Offline stillscared13

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Re: Ann or Andy, still concerned...
« Reply #14 on: October 30, 2009, 09:52:16 PM »
Thanks -

I had another question:

If a person has been infected with HIV and they are a late seroconverter (post 12 weeks) would all other bloodwork be normal before the antibodies show up?  Or would it be obvious to a Dr that SOMETHING was going on in the blood even if they had yet to test positive.  Essentially...my Dr's say all of my bloodwork is perfect...would that be the case if someone was infected or would other levels be out of whack?

Thanks so much for your clarity in an unclear world wide web.

Offline Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #15 on: October 31, 2009, 09:09:01 AM »
The ONLY test which can tell you about HIV status is an HIV specific test. Other bloodwork whether showing normal or abnormal results are not to be used for an indication about HIV status.
Andy Velez

Offline Ann

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Re: Ann or Andy, still concerned...
« Reply #16 on: October 31, 2009, 12:23:52 PM »
scared,

To add further clarity to what Andy has written, yes, sometimes a newly infected person's bloodwork will show some values to be "out of whack". BUT. Just as often, a newly infected person's bloodwork will show the values to be "perfect".

This is why only hiv antibody testing will ever tell you a single thing about your hiv status.

What YOUR hiv antibody testing shows you is that YOU DO NOT HAVE HIV! You were never likely to end up positive over blowing some guy anyway. Hiv transmission just doesn't happen that way unless you've got absolutely terrible oral health.

You're not a late seroconverter. You do not have hiv. You are hiv negative.

Please refer to the warning I gave you in reply #7. If you insist on continuing to post over this no-risk, conclusive negative situation, you WILL be given a time out.

Please consider yourself warned for the last time.

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 stillscared13

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Re: Ann or Andy, still concerned...
« Reply #17 on: November 01, 2009, 11:03:59 PM »
Ann - Andy -

Thanks for your replies.  What would you describe as terrible oral health?  I have had several root canals (none recent) and cavities over the years, my gums could be be in better shape but don't bleed to my knowledge. 

The problem with accepting the negative three month results is there are so many other health care pro's directing me that I'm not in the clear until 6 months.  I WANT TO BELIEVE I AM HIV -, TRUST ME...it's just the persistent symptoms (rash has now been diagnosed as flushing) that worry me so.  I imagine I will go in for a rapid test this week, and then let this go once and for all.  Are they known for a high amount of false positives? 

I'm not out to offend anyone, or get banned from a web forum so I apologize, and appreciate your time and effort very much.

Offline Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #18 on: November 02, 2009, 08:07:49 AM »
No, what you have described does not sound like what I would call bad oral care.

Go ahead and do a Rapid test if you must. You're HIV negative and I don't expect your test to be other than another negative. Hopefully then you will get on with your life. 

Andy Velez

Offline stillscared13

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Re: Ann or Andy, still concerned...
« Reply #19 on: November 02, 2009, 11:31:07 PM »
Well, another negative in the books.  It's amazing how little the people that administer the rapid tests know.  The gal who gave me mine had to have me help her pronounce larger words on the questionnaire she gave. 

She insisted that the regulation is 6 months to a year for definitive results and that my 4 month negative meant nothing.  As you can see, this is what causes so much angst amongst pending testers.

I appreciate the patience you have all shown with me, and will let this be my resting test.  (although, I'm sure my dr will continue to test me for other things as they still can't diagnose my symptoms).

Ann and Andy - you are both truly a wealth of knowledge and I hope your karma is returned ten fold.

I'll leave this board with one parting question, more for my knowledge than anything else (as I have read EVERYTHING I can on HIV in the last 4 months).

If someone experienced ARS (had symptoms for 4+ weeks) would a test administered after be positive? As in, the antibodies would surely be detectable? 

Again - thanks so much, and take care.   

Offline RapidRod

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Re: Ann or Andy, still concerned...
« Reply #20 on: November 02, 2009, 11:48:41 PM »
ARS doesn't last for 4 weeks. ARS lasts at most, two weeks.

Offline Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #21 on: November 03, 2009, 08:23:16 AM »
You're HIV negative. PERIOD! Get on with your life.
Andy Velez

Offline stillscared13

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Follow up from last year -
« Reply #22 on: November 01, 2010, 10:53:11 PM »
Well.....here we are a full year later.

Still no diagnosis as to what is wrong with me.  I have seen multiple rheumatoid specialists - my primary care - and an infectious disease dr. who told me 6 months is still the gold standard in HIV testing.  Nothing - no answers

To refresh - I tested again after my last post at 4 months and three weeks (Nov 23rd 09') with an Elisa 1/2 - non -reactive.

My symptoms that started a few weeks after my encounter persist as well as new ones, such as:

1. Vision issues, burning eyes, eye pressure, red rimmed and just overall not healthy looking eyes.
2. Pronounced REALLY blue veins
3. Migratory muscle pain
4. Itchy skin - that still has a "flushed" look to it
5. Mouth ulcers
6. Testicle pain that happened almost immediately after my encounter (tested neg for all STD)

Last questions -
1. Do I need to test again? 
2. Is there any way that I could possibly have seroconverted past 4 months and three weeks? 
3. If I was your son or daughter would you be 100% positive I am in the clear in regards to HIV?

My next step is a neuromuscular doctor.  This has been a rough year not knowing what could be wrong with me.

Thank you for your help and patience - I am sincerely appreciative.

Offline RapidRod

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Re: Ann or Andy, still concerned...
« Reply #23 on: November 02, 2010, 03:28:27 AM »
   Anyone who continues to post excessively, questioning a conclusive negative result or no-risk situation, will be subject to a four week Time Out (a temporary ban from the Forums). If you continue to post excessively after one Time Out, you may be given a second Time Out which will last eight weeks. There is no third Time Out - it is a permanent ban. The purpose of a Time Out is to encourage you to seek the face-to-face help we cannot provide on this forum.

Offline Ann

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Re: Ann or Andy, still concerned...
« Reply #24 on: November 02, 2010, 06:55:26 AM »
Still,

1. Unless you've been having unprotected anal or vaginal intercourse during the past year you've not told us about, you do not need further testing. You are hiv negative.

2. No. We've explained this to you before. The "gold standard" window period has been three months for many years now.

3. Yes, and yes, I do have a 23 year old daughter. I'd be getting her checked out for chronic fatigue syndrome aka ME. Not all doctors "believe" in the existence of this problem, so you may need to get a few "second" opinions. More and more doctors are realising this problem is real, but nobody seems to agree on what causes it.

Do not attempt to use this forum to further discuss CFS, ME or your symptoms. There are plenty of CFS/ME resources out there, but we're not one of them.

We've done what we can for you here. You do NOT have hiv and it's time for you to move on from this website.

Rodney's warning stands.

An
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 stillscared13

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Re: Ann or Andy, still concerned...
« Reply #25 on: November 04, 2010, 10:06:07 PM »
Ann -

I did stay away.  I have spent the last year of my life trying to pin down this illness.  This is the last place I wanted to come back to.  The problem is; any medical professional I see tells me the conclusive results would have been AFTER 6 months. 

I appreciate your candor.  The responses from some other sites - not dr moderated or even on here are "oral is zero risk".  Yet even in your own "just tested poz" forum there are recent posts of people claiming to have been infected from oral only. 

When they made these claims, no one that commented disputed their validity.  Why?  Why would someone claim something on a support website that isn't true?  At this point if you are going to claim that you are positive wouldn't
full disclosure be the best possible thing? 

Sorry to be a burden - just don't know where else to ask these questions.  I am still working with a dr to find an answer but he is not an infectious disease dr.  I am trying to go down the neuromuscular path.  It's the eye issues - vision and pain that have me so concerned.

Thanks for any and all help

 

Offline Andy Velez

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Re: Ann or Andy, still concerned...
« Reply #26 on: November 04, 2010, 10:14:31 PM »
We are not going to get into another round with you about your HIV status. As far as we are concerned you are HIV negative. Period. End of that story.

When someone comes on the site insisting they became positive through oral we don't argue with them. There are a number of common reasons why people come up with that -- they aren't comfortable saying what they really did whether sexually or through drug use. Or they actually can't remember a specific sexual incident or incidents. Among other reasons.

At that point the issue is what to do now that they are positive. I will say that claims of infection sexually other than unprotected intercourse just don't hold up under careful examination.

And simply because thus far your doctors have not been able to diagnose what is going on with you doesn't by default mean it's HIV.

We really can't help you any further on this site. If you aren't already seeing a therapist or other professional to get support with this problem while looking for a diagnosis, I suggest you do that since clearly it's understandably a great strain for you to live with. Good luck with getting it sorted out.
Andy Velez

 


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