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4 week 'negative' girlfriend showing extreme symptoms post (my) exposure
#269032 - 11/18/12 04:12 AM
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Hi guys,
Firstly - thank you for running such an informative service. I have already posted this on another forum but maybe you - as experts - can help shed some light / further offer some assistance.
Please help me.
45 days ago - whilst traveling across Indonesia - I had what I believe to be a very high risk encounter.
After about a week or two of being back - and after multiple instances of unprotected sex with my girlfriend - we both began exhibiting symptoms.
First came the fever / diarrhea / sore throat / runny nose / itchy hives / muscle ache / numb lips / minor torso / facial rash and fatigue. These have been plaguing us daily right up until this very moment. We are both also often covered in bruises despite not doing anything even remotely physical / labor intensive during the day.
(The muscle ache / fatigue / bruising in my case is so severe I literally feel like I can barely walk, or lift my arms. This is regardless of eating well - when I do have an appetite - and always getting between 8-12 hours sleep each and every night.)
I've convinced myself several times this is / was all just due to over-research / guilt / anxiety but then that wouldn't explain my girlfriend's symptoms (who had absolutely no idea that there might be an issue / or what the symptoms might be).
She was the first to have oral ulcers and thrush - both oral and vaginal and has also had bladder incontinence, extreme weight loss (mine isn't quite as bad) and blood in her urine. Pins and needles is a frequent occurrence in our hands and feet - mine maybe once an hour or so / particularly after waking up - and my girlfriend 'four, maybe five times a day'.
We both had full STI and UTI blood & urine tests at the one week and four week mark and EVERYTHING has come back negative. Everything.
Today - 40 days since exposure - and the reason I'm finally resorting to posting this - is because things, in my mind, have become significantly worse. I woke up - as usual drenched in sweat - and noticed an extreme, dark-red looking rash has appeared up on one of my palms (the small ones I've seen on my chest are usually quite faint and disappear after a few hours).
Several hours later my girlfriend fainted and seizured - for almost a minute - right in front of me. Her eyes rolled back in her head and even when she did finally come round it took a good few minutes for her to even know where she was or what had happened. This has never, ever happened before. She insists she is fine - 'I'm just run down', with an innocent - wonderful - but breaking smile on her face.
I am absolutely positive / terrified this is early HIV Encephalitis - why else would NOTHING be showing up in any tests that could possibly explain ANY of this? Nothing. No STDs / UTIs / vitamin deficiencies / mono / bugs etc etc etc?
I've told them I feel our immune systems aren't the greatest right now (which would explain the antibody results) but the doctors just say that regardless, there's nothing they can do right now as the fact is: the tests *are* both / all still coming up negative. They haven't offered any other explanations or treatment. 'Come back in two weeks / at the 6 week mark'. Obviously I will but for now I just feel hopeless. Hopeless, desperate and suicidal with anxiety.
Right now my girlfriend is sleeping next to me - beautiful, my world - but pale, gaunt, a raised itchy rash on her neck and face, and white / cracked skin in the corners of her mouth.
I am sick to my stomach, can't stop crying, and would give my life for her in a second if I could just make this stop.
Please help us. What can we do? I honestly feel that every second we waste is another second that this is just going to get worse.
Please. Are there any tests - other than the viral load (which they won't do) - that might show anything / finally get us - her - started on treatment? Please. Please.
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ashler1977
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Reged: 05/18/12
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What was your risk in Indonesia?
If you had unprotected anal/vaginal sex then you should wear condoms with your girlfriend until you're certain of your status.
The window period for HIV is 3 months. A test at anytime after that period will give you an accurate result.
At this point, the only other test that could show something in case you're infected would be a PCR RNA.
All the best.
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Oral sex and HIV transmission http://goo.gl/x2kV1
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riverprincess
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I definitly nderstand your anxiety over all this , but to speak of suicide is not the cure after all where would that leave your girlfriend. Now with that said may I suggest that you see if your doctor will at least perscribe you both an antibiotic. Even if nothing right now shows up as anything definitive yet, there is obviously some sort of infection going on. And perhaps an anti-biotic will subside some if not all of these symptoms and possibly the cause of it all. Other than that , another poster sugested the DNA test . But in the meantime get some anti-biotic so that you feel like your doing something to help this. And it wouldn't hurt you even if it didn't work. You may of just picked up some sort of viral bug that you carried onto your girlfriend. Lets hope for the best .
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casper
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You didn't mention what your exposure was.... You believe it to be of high risks, why?
Did you also disclose your risky behavior to your doctor when you went for a check up? He/She might order further RNA test if it is indeed warranted.
The symptoms you described, although described in great details, can often be exaggerated and created by your own anxiety and guilt. When I went through same anxiety prior to the test, I swear every rash that appears in my body and my partner's looks like HIV related ARS...
I was suggesting RNA HIV test until I reread your post and the doc won't do viral test? Which means you tested for all STIs... except for HIV? If so, you need to switch to another doc. If they won't offer viral load test, you can try Uni-gold.... I don't know if there is GMHC near you but they offer free HIV testing, anonymously.
Remember, even if your doctor says you shouldn't need to test based on full disclosure of your risky behaviors, sometimes the anxiety/phobia can get the best of you, insist on getting tested for a peace of mind.
Good luck
Edited by casper (11/18/12 04:12 PM)
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Thank you all so much for your prompt replies.
I just woke up / 9 hours sleep / but as usual feel incredibly ...dazed right now / extreme pins and needle in my fingers so apologies if this doesn't make all too much sense.
ashler1977, yep - have definitely been using condoms since first ...worries. Going to abstain completely for the next fortnight or so at least I think.
riverprincess, thank you for your kind words / optimism. Will be - both - going to see a doctor ASAP this morning. Hopefully they'll test us or yes, at least give us some antibiotics. (If it is / does turn out to be HIV though - will antibiotics affect it / for some reason make it stronger etc etc though?) I know, I know, I'm full of worst-case-scenarios but...
casper, yeah - the doctor(s) (have seen two - one at one week and one at the four week mark) have had full disclosure / admit there was a risk / but yet simply say 'there is nothing we can do unless / until it appears on an anti-body test'. If it wasn't for yesterday's seizure I would happily just accept that and wait; if the seizures / re-occur / continue / get worse though I will / would never forgive myself for not staying on top of this.
I truly appreciate the whole guilt / anxiety side of things but when it comes to my girlfriends' symptoms, she wasn't even remotely aware that any risk had taken place whatsoever. She had nothing at all to be stressed / anxious about but yet was the first to tell me she was having strange pins & needles / extreme fatigue / mouth ulcers / diarrhea / night sweats etc etc etc (all of which - amongst other things - I was secretly experiencing too). She truly had no idea.
In hindsight, maybe I shouldn't have told her (recently) what I thought this could be, but again - if it it the worst then I least want her to be prepared / on top of it. Can't take that decision back now, as much as I may like to.
Yeah, it's correct they won't do the viral load test as 'it's irrelevant if the anti-body test is coming up negative'. The previous two (one week, and four weeks post possible exposure / symptoms) WERE for HIV and all other STDs / blood sugar etc etc. Again: all negative / no explanation to what we've been experiencing.
Will try again this morning (it's now been 10 days since the four week mark / last test) and report back here with what they say.
Thanks again for all of the replies - truly appreciated.
PS. After my girlfriend woke up last night, we discovered the lymph node in her neck had swollen up to a ridiculous size. It's visible just by looking at her, very hard to the touch and about the size of a small grape. Mine - although nowhere near as prevalent - has been swollen for a week or so, too. I know HIV diagnoses cannot - ever - be determined by symptoms by alone but c'mon. What else would be causing this and not show up on any of the previous tests / blood work(?)
Thanks again.
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crabman
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The most reasonable thing considering the short period of time involved is that this has nothing to do with HIV or perhaps any other STI. Here is a start for all the other things in the world it might be. I defined by bruising, swollen lymph nodes and fatique. There are some 3000 things so you can define from where I left off....
http://symptoms.rightdiagnosis.com/cosymptoms/easy-bruising/fatigue/swollen-lymph-nodes-sall.htm
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ashler1977
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Quote:
PS. After my girlfriend woke up last night, we discovered the lymph node in her neck had swollen up to a ridiculous size. It's visible just by looking at her, very hard to the touch and about the size of a small grape. Mine - although nowhere near as prevalent - has been swollen for a week or so, too. I know HIV diagnoses cannot - ever - be determined by symptoms by alone but c'mon. What else would be causing this and not show up on any of the previous tests / blood work(?)
you still don't mention what was your exposure.
in your first post, you said you had test at the 1 week and 4 weeks mark. I am assuming you had these tests counting from YOUR exposure in Indonesia. But what about your girlfriend? Did you have unprotected sex with her or not? You also don't mention this clearly.
there are many things that can cause a swollen lymph node including herpes.
what kind of HIV test did you have? I don't know where you live, but a highly sensitive 4th generation test would have been able to pick up an early infection due the dectetion of the p24 antigen (an HIV protein) if present. for the test to be reliable at six weeks I would also suggest a 4th generation test.
of course, you will still need to retest at the 3 months mark.
don't forget to wear condoms with your girlfriend until then.
best of luck.
--------------------
Oral sex and HIV transmission http://goo.gl/x2kV1
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Hi. I just want to encourage you and your girlfriend to keep the faith and hope up. I had ALL the sypmtoms you described and many more, including a mild seizure, after a risky encounter. You can read my story in my old posts. The guy i was with, tested for HIV twice, and he was negative. I myself tested six times and all negative, thank God.
Your first tests at 4 weeks turned out to be negative. Both yours and your girl's. That's an excellent sign. If indeed infected many people at this point would test positive already. Find a place where you can have a 4th generation test. The result will be conclusive at six weeks and being more relax will improve your symptoms. Remember that agonic stress can damage your inmune system and make the symptoms of a minor infection a lot worse. Good luck. Hoping for the best,
Sher
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casper
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Hi,
Hope your trip to the doc today will make you and your gf feel a little better with some antibiotics.
I can not stress any further that you should insist on a viral load test or a p24 test... viral load will test for RNA instead of antibodies... I don't know why your doctor wouldn't consult you further and recommend further testing even if it is to ease your anxiety (if he doesn't think you are infected at all)
I recommend you research for a clinic that are more experienced at dealing with HIV....
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Thanks - as always - for the ongoing support guys. I have limited time / internet right now but even if I don't reply for a few days, please at least know that I'm reading / checking this daily and truly, truly appreciative.
Crabman - I appreciate what you're saying but considering the exposure / timeline et al (and the fact that there are at least 15 combined / frequently seen symptoms - in both of us - right now) I can't help but worry it's not HIV. Again: I do understand that it's impossible to diagnose just based on symptoms alone and I stress I will be getting tested at the correct intervals instead of just posting here. It is reassuring to know that there are other possibilities however. Thanks for the link.
ashler1977, sorry about the vagueness / lack of exact exposure details. There was - I assure you - a very real risk though. Will reveal all at the three month mark / depending what happens with my girlfriend and I. Hope this makes some kind of sense(?) By all means feel free to PM me if you'd like some further details before then though.
Rather than questioning risk I'm guess I'm more just focused on the fact that if it DOES turn out to be HIV, that I am at least prepared / on top of things (and doing everything I can to find it sooner rather than later - especially if there's a risk of more seizures).
Yes, all of the (frequent) post exposure oral/anal/vaginal sex with my girlfriend was unprotected. We've only started using condoms recently (after I started to notice more and more possible symptoms).
Not sure what test was used at the one and four week mark. I'm in Australia and they were blood tests at two different sexual health clinics - I imagine that they would be 4th generation(?) Will confirm next time / at the 6/7 week mark.
As for Saturday / after my last post: the same doctor (where I had the one-week test) actually point-blank refused to test me again. 'We're just a sexual health clinic / this isn't my speciality / you were negative at one week(!) / see a GP'.
- 'So HIV isn't a sexually transmitted infection? And you're saying the one week test was conclusive?'
'No, there is a window period but if it does turn out to be HIV - then what difference does it make whether you find out now or in 3 months(?) Just be patient until then.'
(If it helps paint a better picture of his attitude that day: he had a sandwich in his hand and music playing from his mobile phone for the entire 'consultation' too.)
So disappointed. Public health care(!)
I'll be going back to the other / much more knowledgable / helpful place in 10 days / at the 7 week mark (as per THEIR request - not just mine!) (Or - ideally - this weekend / 6 week mark if any cancellations / appointments become available.)
As for my girlfriend: she saw a GP today re: her seizure / symptoms. He seems to - finally - be someone who knows what he's talking about and will be running tests (including HIV) on her tomorrow. He's also recommend an MRI as an out-of-the-blue seizure like that is obviously very symptomatic of neurological damage - regardless of the cause.
Sherezade, really, really - incredibly - reassuring to hear. Thank you! Will try and track down your old posts as soon as I get a chance. ...these symptoms are affecting the both of us though. Ugh, hate my thought processes right now. (Sorry!) Did your partner also have symptoms too back then?
Casper, thank you. Maybe my girlfriend will get some antibiotics tomorrow. I'll be sure to tell her to insist on the P24 too, although - despite what's happened - she is (as always) incredibly passive / convinced she's fine. YOU HAD A SEIZURE(!!!)
If not before, I'll be back with my girlfriend's results in just over a week or so and/or mine in 10/17 days.
Thanks again guys. This is a wonderful community (and - even if these posts do seem excessively dramatic to some of you - do absolute wonders for my mental state). Very much needed. Thanks for listening.
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ashler1977
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I assure you - a very real risk though. Will reveal all at the three month mark / depending what happens with my girlfriend and I. Hope this makes some kind of sense(?)
some people comes here worried for something as ridiculous as shaking somebody's hand, that's the reason why we always ask what kind of exposure there was. i don't know the reason why you want to hide the risk you had, but it's up to you. maybe you had no risk in the first place and are worrying over nothing?
either way, good luck.
--------------------
Oral sex and HIV transmission http://goo.gl/x2kV1
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I know - regardless of symptoms, whatever - that I'm clearly suffering from some extreme mental / anxiety / hypochondria issues right now: but: my girlfriend discovered a small, painless lump just under her chin / next to the-already-swollen lymph node / rash today.
Know the last thing I should have done was Google it but:
http://hivinsite.ucsf.edu/InSite?page=kb-05-01-04
An HIV / syphilis co-infection could not only explain ALL of the symptoms (and their immediate / aggressive progression) (especially / the seizure / bad wetting) but also the delay in seroactivity(?)
I've lost the link (all of this research is being done on my phone alone) but I also read that there is currently a global epidemic of this co-infection right now with the highest prevalence / affected area being South East Asia / *in particular* Indonesia.
I know I'm crazy. I hope I'm just crazy. (?)
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(Or - if not a co-infection - could this possibly be *just* syphilis?)
I'd never really considered it because neither of us had any strange cysts but now...
****, I really can't take this anymore.
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crabman
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You know of the multitude of symptoms you seem to think are worrisome, there is only one that makes me sit up and take notice, but not because of HIV. If your girlfriend actually had a seizure then she needs to be evaluated. Seizures are not to be trifled with.
http://neurology.health-cares.net/seizure-causes.php
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I know. MRI is booked for early December.
I cannot sleep / shake the idea that this could be a co-infection though. Would explain far too much. If it was just syphilis - just for example - could it be possible that we had second stage symptoms *before* the primary stage / cysts(?) Having a really hard time finding exact details of it. So anxious.
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