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Author Topic: 8.5 weeks later....  (Read 4330 times)

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Offline kakamoto

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8.5 weeks later....
« on: February 10, 2009, 09:35:22 PM »
.
« Last Edit: February 12, 2009, 06:11:28 PM by kakamoto »

Offline RapidRod

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Re: 8.5 weeks later....
« Reply #1 on: February 10, 2009, 09:46:45 PM »
PCR test are not approved diagnostic tests. Just get your concllusive test at 12/13 weeks post exposure and collect your conclusive test result. When you see that nurse again tell her she doesn't know what the hell she's talking about.

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #2 on: February 10, 2009, 10:08:43 PM »
Thanks for reading my story and for your response Rod. I won't see that fool nurse again because I'm not even in that province anymore... nor do I ever plan to go back... but I did try to tell her at the time. She pretty much told me the guy was too good-looking and charming to have HIV. What an idiot. Honestly, I was flabbergasted.

Believe me when I say (and I bet some of you can speak to the opposite of this) it's really hard to get taken seriously about HIV concerns when you don't fit into a "high-risk category."

Everyone just thinks I have an anxiety problem. Well I AM anxious, but unfortunately, I also know all too well how real my risk was.


Offline kakamoto

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Re: 8.5 weeks later....
« Reply #3 on: February 10, 2009, 10:10:49 PM »
Sorry, just one quick question- is 12/13 weeks conclusive even with 28 days of PEP?

Offline RapidRod

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Re: 8.5 weeks later....
« Reply #4 on: February 10, 2009, 10:14:09 PM »
That's after your last dose of PEP meds.

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #5 on: February 10, 2009, 10:15:36 PM »
damn.

thank you

Offline Andy Velez

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Re: 8.5 weeks later....
« Reply #6 on: February 10, 2009, 10:35:20 PM »
You also need to be aware that the PCR, because of its high level of sensitivity can not infrequently yield false positives.

So you need to be patient and get through a waiting period. You had a single risky incident. None of the symptoms you are worried about are in any way HIV specific. None! Your initial negative result is more than a little encouraging.

Taking everything into consideration along with your having done PEP, I expect a happy result at the end of your waiting period. What you are going to have to make a concerted effort to do -- and this can be done -- is to get productively busy with other things while you're waiting to re-test. Don't say you are too upset to do that. That is not going to fly here. Keep breathing, get busy and the time can pass more quickly and easily than you imagine is possible.
Andy Velez

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #7 on: February 10, 2009, 10:50:45 PM »
Thank you for your encouraging words Andy. I've made it this far, so I guess I can make it a few more weeks. I won't say it's been easy (especially for the past 4 weeks since the symptoms began), but I've been functional, with the exception of a couple of days at the beginning. Going in for the tests will be tough, but I somehow managed it today. 

I know that the PCR can give false negatives... I was considering it mainly because I know early treatment is important, although I guess I few weeks' delay won't have a huge negative impact in the event that I am positive...

I do know that my chances of being negative are not that low, by the numbers, but I have never had a cold or flu like this before and I know I put myself in a significantly risky situation. And the timing... well anyway, you've heard all this before.

The worst part is waking up at 5 am damp from night sweats... I really can't say if they're from stress/anxiety (cause they are usually linked to a nightmare) or not, but I can say that they're enough to wake me allll the way up.

Thanks again Andy, I have a huge amount of respect and gratitude for all you moderators.

Offline RapidRod

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Re: 8.5 weeks later....
« Reply #8 on: February 10, 2009, 10:56:35 PM »
Even if you would test positive. You wouldn't be starting meds this early. It may be years before you would need meds. Get your conclusive test results and go from there.

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #9 on: February 10, 2009, 11:14:31 PM »
I thought I had read that some studies are suggesting that very early treatment may be beneficial? But either way, I guess I need to just wait it out.

That's what I'll do.

Offline RapidRod

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Re: 8.5 weeks later....
« Reply #10 on: February 10, 2009, 11:30:31 PM »
Normal CD4s are between 500 and 1500. I don't know anyone that would start you before 350. Like I said that may take years to drop that low.

Offline Ann

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Re: 8.5 weeks later....
« Reply #11 on: February 11, 2009, 07:32:40 AM »
Kaka,

All things considered, I don't expect your negative results to change and neither should you.

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 kakamoto

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Re: 8.5 weeks later....
« Reply #12 on: February 11, 2009, 08:31:25 AM »
That's good to know Rod.

And Ann, thank you, I really hope you're right.

So far I have only talked to social workers and nurses about my symptoms who are not very experienced with HIV. I am considering talking to my PCP about all my symptoms as well, just to get a doctor's opinion on whether I may be in the process of seroconverting. It does seem hard to believe that the result wouldn't be even weakly reactive after 5 weeks of symptoms.... but I know it's still possible.

Thanks again for your time.


Offline Andy Velez

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Re: 8.5 weeks later....
« Reply #13 on: February 11, 2009, 09:00:12 AM »
My suggestion is that the remaining waiting time will pass most easily by directing your thoughts and energies elsewhere. Of course you're very concerned. But you have a good indication with a negative result that you are likely to continue testing negative. Getting into conversations with doctors and others for opinions only feeds anxiety without the answer that only a test can give you.

So don't feed the anxiety beast. Get on with other things. For what it's worth I'm expecting you to come out of this ok.
Andy Velez

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #14 on: February 11, 2009, 09:45:16 AM »
thanks Andy, I think that is good advice and I'll do my best.... it's just hard to face months of this uncertainty, especially when I know there is an (imperfect) option to get an answer sooner.

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #15 on: February 11, 2009, 09:45:50 AM »
If it weren't for the symptoms, I would pretty much be able to put this behind me already.

Offline HIVworker

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Re: 8.5 weeks later....
« Reply #16 on: February 11, 2009, 10:01:29 AM »
Hi there. I've been on this forum for a few years and I think I lost count of the number of times someone said what you did in the last post. I have seen people display what they thought were text-book symptoms of acute infection (really there are no real set of symptoms that a doctor can point to like chicken pox and say, "Yup, that's HIV") only to post negative at 13 weeks...after all sorts of symptoms and alll sorts of exposures.

My point is that symptoms cause anxiety in the window period and in reality, they mean very little. From what I have read, I don't see a doctor's diagnosis that your lymph nodes are swollen. If you are making that self-diagnosis, there is a high probability that it's wrong. Even if a doctor did make that diagnosis, there are plenty of things that can make your lymph nodes swell up - even prodding them.

It's hard to do but don't concentrate on the symptoms you have. They are clearly causing you anxiety as is evident by your sweating at night....a classic stress symptom. I do that when I am stressed too.

I don't expect you to test positive after this incident, but I do expect that you learn from it. If you come out of this better educated about HIV and safe sex, then the experience was an important one.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline Ann

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Re: 8.5 weeks later....
« Reply #17 on: February 11, 2009, 10:09:45 AM »
Kaka,

Forget about the symptoms. It's cold and flu season! Not only that, but many, if not all, of your symptoms could easily be attributed to stress. Nothing you report sounds like ARS to me and none of it is hiv specific.

I seriously don't expect your negative result to change. The best thing you could do for yourself right now is to get off the internet - or at least stop visiting hiv sites. It's highly unlikely you're hiv positive. You'd be more likely to walk outside your house and find a multi-million dollar winning lottery ticket lying in the gutter than you are to test positive now.

In future, please make sure a condom is being used for intercourse. I understand all too well that this can be difficult with some guys, but do your best.

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 kakamoto

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Re: 8.5 weeks later....
« Reply #18 on: February 11, 2009, 10:24:33 AM »
Thank you both.
I'm pretty sure about the lymphadenopathy... I've felt them before when I had mono, but never in all these strange places (i.e. elbows... and I checked because I had pain there, not out of paranoia).

I really really hope you're right and that it's only stress, or some stress-related thing. I know my symptoms aren't typical of ARS exactly, but I can't come up with any alternate explanation. And the timing... well... I know you can imagine where my thoughts have been.

And I've certainly learned my lesson. I really need to think about why I put myself in that situation in the first place. I think it had to do with feeling out of control to begin with. Obviously everything is much much worse now.

As for future mistakes... well there definitely won't be any of those. I haven't even had a remotely sexual thought since this happened, and I doubt I ever will again. Sorry if that sounds maudlin or melodramatic... but that's how it feels to me right now.

I'll do my best to stay off the internet, it's tough though, it's the only place where I seem to find the information pertinent to this situation. But I do need to think of other things. Starting next week I will be busier with other commitments, so that should help.

Thanks again. I'll really try to take your advice.

kaka

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #19 on: February 12, 2009, 11:42:52 AM »
Sorry, I know you won't be happy to hear from me... I'm having ongoing uncomfortable symptoms- continued myalgia, painful pins and needles, malaise, new lymph nodes (now behind my knee as well). This has been going on for almost 6 weeks now.

I know you have said that I wouldn't need treatment so soon anyway, but seeing as how I seem to have symptomatic HIV, wouldn't early treatment be indicated?

Also, it seems that starting treatment at CD4 counts of 500 improves survival...

http://www.thebody.com/content/confs/croi2009/art50496.html

I think I may talk this over with a doctor, since I have real physical and psychological distress. I've tried to manage it on my own but I think I need help at this point, regardless of how things turn out.

Thanks again for your input and help... I'll let you know what happens.

Offline RapidRod

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Re: 8.5 weeks later....
« Reply #20 on: February 12, 2009, 11:49:31 AM »
Treatment isn't based on symptoms, it's base on CD4 and viral load levels. You don't even know if you have been infected and I can tell you now it would be years before you start medication even if you would test positive tomorrow.

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #21 on: February 12, 2009, 12:08:24 PM »
No, you're right, I don't have a positive result yet.

I'm not trying to pick a fight, that's for sure, but how could you tell from my posts what my CD4 counts are? Are there not people who do need to start treatment soon after diagnosis ?

Offline RapidRod

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Re: 8.5 weeks later....
« Reply #22 on: February 12, 2009, 12:22:52 PM »
Because you are claiming a recent exposure. If your exposure were to have been years ago then that would be a different story and you would have already tested positive.

Offline Ann

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Re: 8.5 weeks later....
« Reply #23 on: February 12, 2009, 01:07:08 PM »
Kaka,

If you feel unwell, you need to see a doctor. You might be missing something important OTHER than hiv, by concentrating on hiv and assuming whatever is going on with you is being caused by hiv. It's highly unlikely.

Go see a doctor! If you insist on continuing to come here to list your symptoms, you'll be timed out until it's time for your conclusive test. We don't discuss symptoms here.

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 kakamoto

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Re: 8.5 weeks later....
« Reply #24 on: February 13, 2009, 01:57:10 PM »
I went to see a doc today.
He agreed that it's unlikely that I have HIV (I agree with that too, for the record).

I had a bunch of bloodwork taken, including several things besides HIV, as well as a PCR, since after hearing my story he thought it was worth doing. At least I will know if the symptoms I'm having are related to HIV or not.

Anyway, just thought I'd let you know, I won't post again until I know something conclusive.
Thanks for listening during these tough times.

Offline Ann

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Re: 8.5 weeks later....
« Reply #25 on: February 13, 2009, 02:18:32 PM »
kaka,

PCR testing is NOT approved for diagnosing hiv as the tests have a high rate of FALSE positives. Let's hope you don't get one of those. Your doctor never should have ordered this test.

You need to remember that if the PCR test comes back with a positive result, it means nothing, really. You will still have to be confirmed by the standard ELISA and Western Blot testing.

A negative PCR result is more reliable, but you will STILL need to confirm your negative status with a standard ELISA at the appropriate time. There is no such thing as a short-cut when testing for hiv. That's just how it is.

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 kakamoto

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Re: 8.5 weeks later....
« Reply #26 on: February 13, 2009, 02:49:50 PM »
In the case of a high-risk exposure and symptoms and timing consistent with ARS, I think a PCR makes sense, and the infectious disease and HIV specialists that the ER doc consulted with agreed (as does Dr Frascino at thebody.com).
For the record, the PCR wasn't something I insisted on or fought for, I told my story, described my symptoms, and it was suggested to me. If I am in the process of seroconverting, then the viral load should be sky high. If I get a false positive, I won't feel worse than I am feeling now, to be honest, but I do understand it's a possibility. If the P24 is negative and the PCR is a low positive number, it's more likely that it's a false positive. ALL tests have their risks of false negatives and positives. I have worrisome symptoms, and at this point, HIV needs to be ruled out or in.

Of course, either way, I will also have whatever confirmatory tests are indicated, and any other follow-up as suggested by my doctors, depending on the test result.

I'm not trying to be argumentative here, but I feel the need to say that it almost seems as though you think people worried about exposure deserve to suffer... and should wait until their health plummets and they wind up in the hospital before getting treatment or diagnosis of any kind. Regardless of what my status ends up being, my physical and emotional health are important to me, and I'm trying to be proactive and not keep symptoms to myself because I'm ashamed, or because anyone else thinks I deserve them, or deserve to suffer the agony of uncertainty for months and months while experiencing disabling symptoms.

I know you read so many posts of people who have had to actual risk of exposure and/or have symptoms that are completely inconsistent with HIV. These people need counseling or psychiatric help more than they need HIV testing. I understand that. But I think that cases where there is a real risk and consistent symptoms are quite different.

I know that many of you live with HIV and/or are experts in the area. I respect your knowledge and experience very much, but, with all due respect, I disagree that without medical training or the benefit of a physical exam or labwork of any kind, you could be able to give me a more reliable diagnosis or medical advice than the doctor who has examined me.

Offline Andy Velez

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Re: 8.5 weeks later....
« Reply #27 on: February 13, 2009, 03:22:35 PM »
OK, so you have made decisions based on what you feel is good information.

We're not here to argue with you either. Good luck with your test results. Hopefully you'll be coming out of this OK as far as HIV is concerned. And HIV is all that we can really discuss with you.

Cheers.
Andy Velez

Offline kakamoto

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Re: 8.5 weeks later....
« Reply #28 on: February 16, 2009, 08:57:36 AM »
I should get results tomorrow. I have no questions right now, just need to share the fact that I'm scared to death. I know the odds are in my favour but I have such a bad feeling about all this.

Thanks again for listening.

K

Offline Ann

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Re: 8.5 weeks later....
« Reply #29 on: February 16, 2009, 09:28:09 AM »
...it almost seems as though you think people worried about exposure deserve to suffer... and should wait until their health plummets and they wind up in the hospital before getting treatment or diagnosis of any kind.

Kaka,

For the record, there are very few people on this earth who I think should suffer. However, we cannot change the facts surrounding transmission and testing. As you've been told, there are simply no short-cuts to obtaining a reliable, conclusive negative hiv test result when there has actually been a risk of infection. (emphasis added for others reading this thread, not you, Kaka.)

We also do not want people to wait until their "health plummets" to be diagnosed or treated. That is why we tell people they should be having routine sexual health check ups at least once a year. We also don't want to see additional infections due to a person not knowing their status.

In your case, a few weeks without treatment is not going to make a bit of difference, should you test positive. Many people can go years without treatment - I'm one of them, positive nearly twelve years now and no meds yet.


...without medical training or the benefit of a physical exam or labwork of any kind, you could be able to give me a more reliable diagnosis or medical advice than the doctor who has examined me.

We don't pretend to be able to diagnose anyone over the internet. That's why we've repeatedly refered you to a doctor to investigate your symptoms. However, we CAN tell you about testing, and we have. To expand on this train of thought a bit more, we also cannot provide the emotional/mental health support so many demand of us. People need face-to-face contact with a mental health professional for that.

We know our limitations. In this forum, we give risk assessment and testing advice only.

I hope that's cleared a few things up for you.

Good luck with your results.

Ann

« Last Edit: February 16, 2009, 09:30:22 AM by 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 kakamoto

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Re: 8.5 weeks later....
« Reply #30 on: February 16, 2009, 10:00:08 AM »
Thanks Ann,
I do understand your perspective. I've not been myself lately because I am utterly terrified, and have been so for over a month. Normally I'm quite reasonable and even pleasant.
I suppose I felt as though my actions were being attacked when to me they seemed reasonable, but I know I was being overly sensitive.
I also understand that you are not able to give emotional support or counseling over the internet, and I have sought out other, in person, sources. There are just times when the panic and fear is too much. I hope you can understand.

K


Offline kakamoto

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Update and question...
« Reply #31 on: February 25, 2009, 07:53:30 AM »
Today I got the results of my p24 and PCR done 10 weeks after exposure, 6 weeks after finishing PEP.

Both were negative/non-reactive.

Do you think I can be sure my symptoms aren't from HIV?

Thanks in advance for your advice.

Offline Ann

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Re: 8.5 weeks later....
« Reply #32 on: February 25, 2009, 08:48:10 AM »
Kaka,

Yes, at this point you can be sure hiv isn't causing your symptoms. Have you seen a doctor about them yet? You could be missing something serious by only investigating hiv. Go to a doctor!

You should test with a standard hiv antibody three months after you stopped PEP to obtain a conclusive result. I do NOT expect your result to change. The p24 test is only valid the first few weeks of infection, and the PCR test is not approved for diagnostic purposes - because of a high rate of false positive results. However, a negative PCR is more reliable but still needs to be backed up with a negative hiv antibody test.

Again, I do not expect your negative result to change, but please confirm that at three months. And see a doctor about your symptoms!

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 kakamoto

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Re: 8.5 weeks later....
« Reply #33 on: February 25, 2009, 08:56:57 AM »
Thank you Ann

I have seen a doctor about these symptoms but of course my main concern was HIV. I tested negative for Hep C and I'm vaccinated for Hep A & B and I've had a full STI screen (negative).

So... I'm hoping the symptoms will get better now with this encouraging news, and if they don't I'll be visiting my family doc about them.

Thanks again for your help, and I'm sorry again for being overly sensitive. The past two months have been really dark for me. I've learnt a lot though so I'll try to think of it in a positive light, so to speak.

I'll let you know what happens at the 3 month mark, and I guess the 6 month mark, since I took PEP. Keep your fingers crossed for me, if you would.

K

Offline Ann

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Re: 8.5 weeks later....
« Reply #34 on: February 25, 2009, 09:08:04 AM »
Kaka,

You don't need to test past the three month point, even though you took PEP. You only need to test three months past your last dose of PEP, which is four months past your exposure.

I don't expect your negative result to change.

And thank you for your apology. It's much appreciated.

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

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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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