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a little update, still very concerned

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Old 06-16-2010, 03:09 PM   #1
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a little update, still very concerned

HIV antibody test 2 weeks post exposure negative...

Another test 4 weeks post exposure this one was supposed to be AB/AG although I'm unsure if they did the Antigen portion of the test.

Just over 6 weeks post exposure(6 weeks and two days) I got an Antibody and HIV PCR test. Again my results came back negative. I'm not fully convinced on the accuracy of the PCR as their can often be false positives 3-10% generally the cut off for a true HIV infection and a false positive is 10,000 copies per ML(under its likely something else causing the false positive and over it's likely you have HIV and even they may not diagnose you with that(without a positive ELISA and confirmed western blot).

Also a pyschiatrist ordered this test even though it was too early to judge given my 4 week negative test if HIV was really the cause of my symptoms. I wouldn't put it past someone to just have skipped out on the PCR part given my negative antibody test and possibly factoring in the doctor who ordered it and the cost of the test.

I guess my worry is that if they only did the Antibody tests at 2,4,6 weeks given my immunoglobulin G deficiency and very low IgM(almost a deficiency) its very possible if I do have HIV it didn't get picked up.

A little backround I have an IgG deficiency the main immunoglobulin for viruses. Lower Immunoglobulin levels make someone more prone to an auto immune disease, NOt to mention my dad and brother have crohn's as well as my aunt died of MS.

I had OHL to begin with and other skin(exfolitive cheilitis, and sebborhea) and respiratory issues. I have super low HDL genetically(not from diet) which is what your body produces myelin tissue with to protect your nerves.

A few days after my exposure I experienced a very strong feeling of discomfort extreme fatigue, loss of appetite and lymph node pain, followed by diarrhea, strong neurological symptoms, my skin sebborhea was extremely flared up and still is quite irritating when before I didn't even have to use kedoderm or anything on it(the kedoderm I use now barely helps). I also noticed my Oral hairy leukoplakia got much noticeably worse their was even a weird feeling on my tongue around the end of my intial symptoms bout. These stronger symptoms lasted about 30 days. The diarrhea went away after that point in time and I still felt very fatigued but not totaly dehabilitating I could fight through it easier alot of the time , although still feeling like a train wreck at times.

9 1/2 weeks later my nasal fold sebborhea is still very inflammed, irritating and consuming for no specific reason for a large portion of the day(aka no trigger I'm also on antibiotics(doxycycline) which are anti inflammatory and normally when I'm on antibiotics I don't notice the sebborhea at all even when experiecing certain triggers like hormones, smoke etc..)

I have a very noticeable loss of appetite still, I'm still having neurological symptoms mostly in my feet and legs(more noticeable at night), as well as every now and then in my hands.

Still now I'm having upper respiratory issues my OHL has improved but is still significantly worse than it was before, I had to get sinus surgery before and I also get allergy shots so it sort of drained into my throat before due to all that. It gets so bad at times that I gag repeatedly almost to the point where I'm worried about choking, this never happened before. Also having to do a load throat cleaning thing to sort of alieviate the irritation and then spitting afterwards I think you guys know what I'm refering to it sounds gross...

The fatigue I experience can be quite severe and dehabilitating at times but its far from as severe as it was during my first few weeks of infection. I've also noticed waking up sweating aka nights sweats, but I haven't really experieced that for the past couple weeks, except one odd night.

Their's no diarrhea anymore but I'm still getting the stomach issue of gas.

Also a very weird observation I've made is my exfolitive cheilitis seems to have improved alot aka the peeling is much less thick and doesn't come off as quick. I'm a very observant and aware person, antibiotic creams and immunosuppresive ointments/creams can be used to treat this condition, so it would make sense if my immune system was suppresed systemically my exfolitive cheilitis would improve. Also during the latency phase I know HIV goes mostly into the lymphatic system and into Dendritic cells(skin cells that are also contained in the lining of the nose mouth and throat).

I know everyone says symptoms aren't an indicator of HIV status but at the same time I'm not a crazy person these symptoms are very real and noticeable, and know all I would have done to trigger these were be stupid with unprotected sex with 2 females during a 24 hour peroid in early-mid april. I wish I was just having anxiety symptoms but its impossible for that to be my problem here.

From now I'm just going to focus on my symptoms and see how I can get medical help, because the bottom line is that these symptoms are very real and its very easy for someone to write them off as in your head when they aren't actually feeling them, not to mention you've had some issues in the past.

Regardless even if the proper Antigen and PCR tests were done it should be close impossible that I have HIV but at the same time a negative test doesn't automatically make my symptoms go away. The prognosis of feeling this way physically is pretty devastating even if it's not HIV it's not pleasant.

Last edited by missingyou; 06-16-2010 at 04:20 PM.

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Old 06-16-2010, 03:24 PM   #2
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Re: a little update, still very concerned

A little food for thought

THe accuracy of PCR has never been verified.. The only proper gold standard for this purpose is HIV itself, the next best thing we have is ELISA or western BLOT.

The concept of virus isolation as a gold standard is particularly important in the case of HIV, since HIV has been extremely difficult, if not impossible, to define in genetic or molecular terms. Even if anyone had ever accomplished virus isolation for HIV, it has never been used as a gold standard for any HIV diagnostic test, including PCR.

time after time studies state that they evaluated the performance of their test on samples which were known to be TRUE-POSITIVE or TRUE-NEGATIVE. How did they know this? It's simple: Without a gold standard, they didn't.

Some of my concern comes from the fact they may not have known how recent my exposure was aka 6 weeks earlier factoring in my IgG deficiency and other health problems which would have made the PCR part of the test crucial and comparing them to a possible negative antibody test(as the closest thing to a gold standard) which was negative strongly hinting at a false positive result(although at 6 weeks my viral load should have been like 100,000 Copies per mL or higher) for the PCR and level that didn't meet the criteria for ELISA(5 lines are required) thus they just assumed I was HIV negative and didn't want to give me a conflicting report on the PCR being positive but the ELISA being negative.

Do you see what I'm saying I know it should be like 1/1,000,000 or something odds I have HIV if they did do the antigen and PCR on top antibody testing at 4 and 6 weeks respectively.... and reported everything properly

It is sometimes argued that "studies have shown" these tests to agree with each other or confirm each other's findings, and therefore they must be correct. This is not rigorous scientific thinking. Sometimes you can get the results of different tests to agree with each other, but that does not prove anything -- no more than it would prove if five criminals all agreed that they were somewhere else when the bank was being robbed

Another weird thing is I got 6-7 cold sores with in the first 15 days... of my exposure and I had an elavated white blood cell count, at my first 2 week Post exposure blood test, clearly I was fighting something...

I was very prone to cold sores before aka when I would eat almond butter or something high in arginine(pro viral) I would have to take a lysine pill or two or with that meal or else the next day boom I'd get a cold sore. Also in very hot bouts without air conditioning I would also get chronic cold sores. AKA 30+ degrees celcius for a week or two...

Now I can eat a couple tablespoons of almond butter or other nuts and not have to even worry about getting a coldsore without laking my lysine pills. AKA my body seems to be producing alot more antibodys in general.

Last edited by missingyou; 06-16-2010 at 05:28 PM.

Old 06-16-2010, 04:56 PM   #3
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Re: a little update, still very concerned

You didn't need the antigen and PCR tests. There are no medical conditions known to interfere with the accuracy of HIV antibody tests except HAART treatment. Your 6 week test was highly accurate (regardless of your immunoglobulin deficiency) and trumps any symptoms that you have experienced (regardless of their legitimacy). You are more likely to get hit by a meteorite as you are reading this than have HIV. The antibody tests are the gold standard because their accuracy has been proven.

Work with your doctor if you are still having symptoms that concern you but forget about HIV. There may be other forums on this site where you might be better served since your tests rule out HIV as a cause.

Old 06-18-2010, 03:13 PM   #4
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Re: a little update, still very concerned

I forgot to mention during the first few weeks of my more sever initial symptoms I had a rash on my upper arms chest and back. This rash at times appeared in what looked like lines...

I know even if I only had an antibody test due to the labratorys neglect which at 6-8 weeks is between 95-99% going off 95% for 6 weeks that's 1/20 who don't have detecable antibodies when indeed they do have HIV it sounds quite uncommon but really 1/20 isn't that rare someone has to be unlucky enough to fall into that category. Albeit if the pcr was done by 6 weeks my viral load should have been through the roof
if indeed HIV was and is causing my symptoms.. Much higher than the 10,000 copies per ml false positive range.

In my mind I know all I did was sleep with the wrong person and then I got all these severE symptoms for a few weeks and I'm still having symptoms.

An antibody test at 9-12 weeks would totally rule out HIV for me.. For now I'll just focus on my symptoms with my doctor. I'll get a final HIV test to rule out HIV and get to the bottom of my symptoms hopefully sooner rather than later.

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