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Avatar universal

30 YEARS ON: HAS HIV SCIENCE MADE ANY PROGRESS AT ALL?

OK, a little over 3 months ago, I had an encounter with an escort. Since then, I have had ALL THE CLASSIC ARS Symptoms, even the rare ones, namely White tongue (Oral thrush?) and burning sensation/tingling the hands and feet (Peripheral neuropathy?). These two are still present today, even after testing NEGATIVE on a HIV duo test at the 13-week mark. Fever, Swollen lymph nodes, body-wide rash, night sweats, oral ulcers were all present. Now we are told that TEST RESULTS ALWAYS OVERRULE SYMPTOMS, if they are taken after the window period. Because few of my symptoms are still present (i.e. white tongue which has refused to respond to nystatine, and presently being treated with fluconazole, and burning tingling sensation in the hands and feet plus EXCESSIVELY DRY THROAT for the past two days alongside general fatigue), I decided to review many fora, where I came across quite a substantial number of people who also presented with classic ARS symptoms and yet tested negative after 3 months, and some even after 6 months.

And in the face of all the symptoms they have had, some have been unable to accept their negative result. I am also not able to figure out what the problem is with me. Why did my tests come back negative? I tested 3 days-, 3 weeks-, 6 weeks-, and 13 weeks- post exposure all with DUO tests, and all coming back negative…..Now, the typical answer these people get to their question as to why they have all the classic symptoms and yet testing negative is that “your symptoms must be due to something else”, “go see your doctor if you are concerned about your symptoms, you don’t have HIV”.
My questions are:

1. Why would a previously healthy person present with all classic ARS symptoms just after exposure and would be told that he once he tested negative, he has got no HIV concern? So where from the symptoms? What do they signify? Nothing? I am unable to come to terms with all these….Of course, this situation brings about questions such as:
a. Am I carrying a rare strain of HIV not yet identified?
b. Am I a late seroconverter because my immune system is weak?
c. Was I co-infected with HIV and another STI thus delaying antibody production and thus continuously testing negative?

2. Why is there so much confusion about Window period? I called up the laboratory where my tests were done (in the Netherlands) to ask them what they think about the fact that I still have some ongoing symptoms despite my recent negative 13-week test. I was told that they consider 13 weeks to be conclusive, but if my symptoms concern me, I could test again 6 months after exposure to see what happens…Hmmmmm….Meanwhile, my doctor said she recently had some discussion with some microbiologists in a seminar and they indicated that they now consider 6-week conclusive and that the 13-week requirement is just a government regulation….So my question is what happens if someone is a late seroconverter? Of course, she mentioned to me that she would no longer order additional tests for me, and that I am HIV negative….But then, I would like to go back to ask her to order tests to check my CD4 and CD8 and viral loads for me….I am not sure if she will agree anyway….But I will try….I am unable to accept the fact that my symptoms were mere coincidence….especially when the escort agency have all their phone lines out of reach since I indicated my preparedness to report them to the police….Why is that?

3. Finally, or is it the case that those who present with all these classic ARS symptoms and yet test negative manage to get the infection process aborted? This may make sense….   “Your symptoms are being caused by something else hardly convinces me”

I hope that someday, HIV science will become so advanced that we would have answers to these questions. At the moment, there is too much confusion in the science, and yet, ironically, those who matter are quiet as though HIV is no threat. I am tempted to believe that the arrival of anti-retroviral treatment is what has caused people to stop talking about the devastating effects of HIV as it used to happen in the past….This is not right.
Finally, please stay away from commercial sex workers! They are the true reservoirs of STIs and HIV. It seems as though they have been licensed to kill. Because as I have seen so far, in the Netherlands where sex work is legal, nobody seem to care whether these sex workers are carrying HIV or not….They are not OBLIGED to test….And remember, too, that it takes only one time to catch the dreaded disease. Stay with God….



10 Responses
Avatar universal
So normally I would say you have a conclusive test and my quick guess is that you probably used a condom so you probably didn't have a risk anyway.

1.Because you have a conclusive negative test. Exactly why we don't use symptoms as a diagnosis tool, they can be from many things.
a. No, not rational to think that
b. No and you don't have a weak immune system
c. No

2. No confusion on widow period, 3 months is still the standard and has been for several years now. Some Dr's will say 6 weeks based on all available info.

3. Symptoms mean nothing.
480448 tn?1426952138
Actually, scientifically speaking, HIV is one of the easiest things to diagnose, very straightforward and with the advances in testing, the guesswork and waiting has been pretty much eliminated.

1. Why would a previously healthy person present with all classic ARS symptoms just after exposure and would be told that he once he tested negative, he has got no HIV concern? So where from the symptoms? What do they signify? Nothing? I am unable to come to terms with all these….Of course, this situation brings about questions such as:
a. Am I carrying a rare strain of HIV not yet identified?
b. Am I a late seroconverter because my immune system is weak?
c. Was I co-infected with HIV and another STI thus delaying antibody production and thus continuously testing negative?

ARS symptoms are not seen in only HIV, they are very generalized. Plus, I'm sure you've read enough here to KNOW that symptoms are NOT in any way a relaible indicator of infection.  A study of people seeking medical attention in an ER with classic ARS symptoms showed that 99% of those people tested negative, with their symptoms being related to other, more common things, like flu, colds, even anxiety.

Symptoms seen in early HIV infection are the same symptoms seen countless other conditions.  Even anxiety can cause most of the symptoms. A.  No  B. NO, your tests prove you don't have HIV...all of those tests didn't lie.  C.  No.  Even if you were co-infected, you tested well beyond the window period, which eliminates that irrational possibility.

2. Why is there so much confusion about Window period? I called up the laboratory where my tests were done (in the Netherlands) to ask them what they think about the fact that I still have some ongoing symptoms despite my recent negative 13-week test. I was told that they consider 13 weeks to be conclusive, but if my symptoms concern me, I could test again 6 months after exposure to see what happens…Hmmmmm….Meanwhile, my doctor said she recently had some discussion with some microbiologists in a seminar and they indicated that they now consider 6-week conclusive and that the 13-week requirement is just a government regulation….So my question is what happens if someone is a late seroconverter? Of course, she mentioned to me that she would no longer order additional tests for me, and that I am HIV negative….But then, I would like to go back to ask her to order tests to check my CD4 and CD8 and viral loads for me….I am not sure if she will agree anyway….But I will try….I am unable to accept the fact that my symptoms were mere coincidence….especially when the escort agency have all their phone lines out of reach since I indicated my preparedness to report them to the police….Why is that?

There really isn't.  There are some varying views and some people who are behind the times.  3 months is definitively conclusive.  If you haven't tested + by then, then HIV isn't your problem.  To continue to ask your doc to order tests looking to rule out HIV is not rational.  You are unable to accept that you're not infected for the same reason so many other people are...because you've become overly focused on and anxious about HIV..just like someone with OCD cannot let their fears go...same idea.  I cannot answer anything about the escort service, but I see no reason for you to be contacting them anyway...you dont have HIV.

3. Finally, or is it the case that those who present with all these classic ARS symptoms and yet test negative manage to get the infection process aborted? This may make sense….   “Your symptoms are being caused by something else hardly convinces me”

Well, if you cannot be convinced of that indicates that you need to seek professional help.  Science doesn't lie.  You have MULTIPLE negative HIV tests.  It's simply not normal to still be so focused on this.

This isn't a matter of science needing to advance as you claim.  The science has advanced in a HUGE way when it comes to HIV and the science behind it...it PROVES you don't have HIV.  It's YOU who cannot accept that.

This is a common problem...people convince themselves their "symptoms" are related to HIV and they cannot accept the reality that is before them. That's an emotional/anxiety problem.  

Avatar universal
Well said!
Avatar universal
Thank you Nursegirl, your response is soothing, and I hope that I can always be comforted by them. It's my prayer that I remain/ am negative!

Meanwhile, I have no intention to argue with you, but did you, in your closing paragraphs, say "Science doesn't lie"? Well, that is debatable. The fact is, scientific opinions/findings at any particular moment are only as accurate as they can get. That is, science doesn't tell us "what is not known" until "it" is discovered....New discoveries are being made everyday, throwing into the dustbin of history "facts/opinions" held in high esteem previously/only the day before. So yes, science in on the move, but I doubt if there is any area of medical science so controversial as HIV science. It sucks....I pray for a miracle...I hope I come out of all these unscathed. Let's all stay away from danger. Stay with God.....
480448 tn?1426952138
but I doubt if there is any area of medical science so controversial as HIV science

I'm not sure where you get this impression but I couldn't disagree more.  HIV is one of the most straightforward conditions to prevent, diagnose and treat.
Avatar universal
Nursegirl, contrary to your assertion that "HIV is one of the most straightforward conditions to prevent, diagnose and treat", I got the impression that it is one of the most controversial and uncertain terrains from the medical practitioners themselves.....If you consider that there are doctors saying test to 6 months and others saying test to 1 yr, despite the insistence by many that 3 months is definite (even if you have had ARS symptoms and still lingering past 3 months) even some agencies in some western countries claiming 6 weeks, then you must agree with me that there can't be any science more controversial and uncertain than HIV science.

In view of all these, I am even considering abandoning my marriage plans which should have come on in less than a year. Yes, my 3 months is NEGATIVE....but what about my lingering symptoms?...My white tongue scares me...the tingling/burning sensations in my hands and feet scare me. I cannot afford to pass on anything to an innocent woman....I plan on testing for the next two years....how sad that mere curiosity can land me in this huge problem? I am in deep depression and anxiety....Sorry if I sound paranoid....

Unable to believe my 3 months negative result and in search of what might be causing my symptoms if indeed I am HIV negative, I made the doctor test me for HSV and EBV, with only the EBV VCA and EBV NA antigens coming back positive....The EBV VCA IgM returned negative, and they explained that it indicated a PAST INFECTION, at least more than 3 months ago. So how could I tell if I did not pick up this infection from the encounter which is causing me all this headache considering that it occurred a little over 3 months before I went for these tests?

If I can tell definitely that the EBV is what is causing these symptoms, then I can have some piece of mind, not because EBV is a good infection to have, but at least preferred to HIV! I had asked the doctors to test me for EBV during my 3-week HIV test and they did not agree. If only they did then, this puzzle would not have arisen.....Doctors....and HIV diagnosis....What a mystery!
                                                                                                      
5628687 tn?1371411467
what was your exposure?
5628687 tn?1371411467
anxiety doesnt cause infection directly but plays a big role in the developement of infection and you are riddled with anxiety.you have gone beyond the point where any forum can help you now.you need the help of a clinical psychologist.
Avatar universal
Your knowledge is wrong, Dr's who say 6 months or longer are just not educated. The FDA, CDC and testing manufactures say 3 months and that has been that way for years. Dr's saying 6 weeks is based on personal experience and known sensitivity of tests today. Not controversal at all, just misinformed people.

You can do whatever you want with testing but don't be suprised if you get a false positive sometime. I would encourage you to find a therapist to help you with depression and anxiety.

This is not a mystery to us, we KNOW you don't have HIV. You keep talking about symptoms but your lack of education on HIV and symptoms is what is causing you to focus on them.

This forum can't provide any more assistance to you. Again it is best to seek a therapist for your issues as HIV is not one.
707563 tn?1553635552
This thread is closed. Many experts, including our own, believe that a test at 6 weeks is conclusive, and test manufacturers state 3 months is conclusive. This is certain, along with symptoms not being a good indicator of HIV infection.

Please follow up with your own doctor about any symptoms you are experiencing, but if you've had no other exposures, HIV is not your concern.

Emily

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