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Author Topic: Had PEP last May - worried  (Read 3575 times)

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Offline RedDirtGirl

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Had PEP last May - worried
« on: February 19, 2009, 06:27:12 PM »
Hi all,

I was on PEP last May for a condom failure with my HIV positive boyfriend.

He is and has been undetectable for years.

I took the full course of PEP and tested negative out to 5 1/2 months from exposure. I WAS convinced that I had tested enough.

I'm very unwell and going through lots of other testing. I won't go into the details as I know symptoms are not a way to diagnose.

I just cannot get it out of my head that I was in fact infected and that is what's causing my illness. In the past I was diagnosed with CFIDS and on IVIG which restores IGG as I do have some immune problems.

My question: Im thinking about asking my doc to do a PCR test as Im concerned that testing for antibodies may not be good in my case due to immune issues.  Is this a good idea? Or is testing with Elisa out to 5 1/2 moths post exposure 100% reliable?

Offline RapidRod

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Re: Had PEP last May - worried
« Reply #1 on: February 19, 2009, 06:57:07 PM »
You are conclusively negative.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Had PEP last May - worried
« Reply #2 on: February 19, 2009, 09:39:30 PM »
Red,

You were never likely to end up positive over this incident. Whatever is going on with you has NOTHING to do with hiv - you are more than conclusively hiv negative.

PCR testing is NOT approved for diagnostic purposes. You don't need PCR testing - you ARE hiv negative.

Keep working with your doctor to find out what, if anything, is wrong with you. Whatever it is, is IS NOT hiv.

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 RedDirtGirl

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Re: Had PEP last May - worried
« Reply #3 on: February 24, 2009, 05:05:59 PM »
Thank you both. I saw my main Dr today and he ordered another antibody test. I didn't even ask for it. I described how I was feeling and he asked if I'd followed up with the HIV clinic since the condom incident. I told him that I tested negative at 5 1/2 months post exposure and asked how long he thought I would have to be concenred about this. He said that it's possible with my health history that I may still test positive after what is considered the "window period" for other people. Not what I wanted to hear and like I said above I didn't even bring it up.

I would really like to know, if anyone can tell me, how long does someone with documented immune problems have to test before they can rest easy about this?

And Ann, yes, I am anxious about this as I'm not feeling well. You said "what, if anything is wrong with you." I am not making this up nor am I exaggerating. I'm just trying to find answers so I can hopefully feel better soon.

I appreciate your replies, and they do ease my mind. I just hope you're both taking into account that I do have previous documented immune problems.

Offline anniebc

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  • Posts: 5,951
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Re: Had PEP last May - worried
« Reply #4 on: February 24, 2009, 06:40:53 PM »

Quote
He said that it's possible with my health history that I may still test positive after what is considered the "window period" for other people

Only a small group of people seroconvert after the 13 week window period, this group includes those who are receiving immuno-suppressive therapy after transplant procedures, cancer patients who are receiving chemotherapy and long term injecting drug users.

So unless you are going through any of the above then you are HIV negative.

Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Had PEP last May - worried
« Reply #5 on: February 24, 2009, 06:46:41 PM »
RDG,

Look, hun, you're hiv negative unless you've had a risk since you had PEP and tested conclusively hiv negative. As you've been told, you were NEVER likely to end up positive over this anyway.

The ONLY people who MIGHT seroconvert a little late are those on chemotherapy for cancer, anti-rejection drugs following organ transplant, or someone who has been injecting street drugs, every day, for YEARS.

I never tried to imply that you're making things up. You've already been diagnosed with things that are making you feel unwell. Why you are chasing something that has been conclusively ruled out is beyond me.

If you cannot accept your negative hiv status, perhaps it's time for some counseling. You don't have hiv.

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 RedDirtGirl

  • Member
  • Posts: 30
Re: Had PEP last May - worried
« Reply #6 on: February 24, 2009, 07:17:11 PM »
Thanks for the clarification AnnieBC.

Ann,

I am in counseling and for the most part I do accept my negative HIV tests. I went to my doc today, a doc that has known me for years. I told him how poorly I'm feeling. I had to get test results of a Mammo, Breast US and MRI. I have developed severe pain in both breasts and have numrous lumps which have been diagnosed as a fibroadenoma and swollen lymph nodes. He examined me. HE asked if I have followed up with the HIV clinic. After reading replies here and from my own research I had decided not to ask for any more testing.

The reason I do end up worrying is because I have been feeling progressively unwell since I had to be on PEP. I was also,  at that time, diagnosed with Bartonella or Cat Scratch Disease. My doc has told me that this would not cause my symptoms and is self limiting.

I have no appetite, have lost 25 pounds, have stomach pain and chronic diarrhea, headaches, severe leg pains, night sweats and profuse sweating during the day (though only low grade fevers), fainting and severe fatigue.

So,  as I said above, I went to my doc to get results of tests and hopefully some answers or treatment for my symptoms. He mentioned more testing and was elusive when I asked how long it would be before I could put this behind me. He did say most people test positve within 4-6 months.

After he mentioned doing another HIV test I asked him about my low grade fevers 99.2 - 99.6 and the sweating. He said it's possible that my immune system is just not strong enough to bring on a full fever. This, coupled with my documented swollen and painful lymph nodes has me questioning my previous results.

In my heart, I believe the advise I am getting here. I will be surprised if this test comes back positive. But obviously he think it's possible if he brought it up...

Offline Ann

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  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Had PEP last May - worried
« Reply #7 on: February 24, 2009, 07:28:36 PM »
RDG,

Your doctor is wrong. The vast majority of people who have actually been infected will seroconvert and test positive within six WEEKS. Not months, WEEKS.

I'm sorry he's frightening you so much. Maybe you might want to think about getting a second opinion as to why you feel unwell.

Good luck sorting it all out.

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 RedDirtGirl

  • Member
  • Posts: 30
Re: Had PEP last May - worried
« Reply #8 on: February 24, 2009, 09:50:39 PM »
RDG,
Maybe you might want to think about getting a second opinion as to why you feel unwell.



If my test comes back negative tomorrow I will do just that. Thank you.

Offline Danny47

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  • Posts: 19
Re: Had PEP last May - worried
« Reply #9 on: March 15, 2009, 01:32:55 PM »
Hi Red...

I suffer from Ulcerative Colitis which is a immune system disorder that attacks your intestinal walls. Due to this disease I was more prone to being infected than other people, because my colon sort of becomes a filter having barely no mucosa protecting its walls.  There are a great deal of symptoms that you can have that might feel like sysmptoms of being infected.  In my case it worked the other way around, for I had some symptoms of seroconversion and I identified them as a UC flare.

In your case if you tested negative HIV after 5.5 months then you should be looking to your symptoms as a sign that something else is not right with you, but I doubt that it is because you are HIV positive.

My Gastro (someone who knows me very well) recommended the test because I had a possibility for being infected which I clearly admitted to him. After my Elyssa came back (reactive) he ordered a viral count and CD4-CD8 test (also a western b, but it takes almost a month to get the results here in PR)

My Infectious Disease Doctor who is treating me for my HIV is aware of my UC condition, he also knows that every symptom that I have is not HIV related. Although at times I can confuse them a bit.

I did go to a second Doctor who I didn't know but is considered the highest authority in Infectious Diseases here in PR.  After I briefed him on my UC history and actual safe habits, he questioned each and everyone of them, including my UC diagnosis. And kept insisting in my description of what "I" consider to be safe.  Was having and Internet relationship for over a year, where I NEVER had the chance to see the person considered safe?  He wanted a negative test from the person...imagine that!

I was negative all my life, tested negative twice in 2007 and once in 2008.  Tested positive in 2009 because I had unprotected sex with someone who I trusted (told me) was negative after I showed him the results of mine. .He was my partner for 11 months.  Doctor's at times, depending if they are in the field of investigation or not, will try and look for related disease, the one I saw was trying to established I didn't have UC, and literally doubted that all the results I had were wrong, or maybe he just didn't trust me.

I do believe that if you tell your Doctors you are having night sweats, chills, flu like symptoms, and that you were exposed 4 years ago to HIV, they will suggest you get tested.  Even if you tell them you have, they will recommend it again.  Even today there is a great deal of "lack of knowledge" amidst the medical field.  My Infectious Diseases Doctor is (to me) the best in his field, but I consult anything and everything related to my UC to my Gastroenterologist.  They have to agree on a treatment, but to each its own....

Go get tested for other things (like I know you are now) and you will be a lot closer to finding what is really wrong with you...

Hope you find your answer soon...the sooner you this, the faster you'll be in your way to recovery....

My best to you,

Danny

Negative on Feb. 3, 2008, Positive Elyssa Feb. 3, 2009
Feb. 11, 09 cd4 120, VL 267,000
Feb. 17, 09 Prophylaxis SMZ and Azytromicin
March 2, 09 Atripla and prophylaxis
May 09, VL UD, CD4 515
July 09, Lymphoma. Started Chemo every week, 13 weeks
September 09, VL UD, CD4 310
December 09, VL UD, CD4 414
January 10, UC flare, Lymphoma, Colon Cancer
Chemotherapy treatment & Radiation
July 2010, VL UD, CD4 234
August 2010, Cancer Free
Nov 2010, VL UD, CD4 204, Brain CT, Liver, Lungs, Kidney, Colon ans Lymph nodes Cancer Free!

 


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