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Avatar universal

Western Blot Indeterminate.... what to do?

I'm worried about my status and considering getting a PCR test.

On the 19th of November I started to come down with a cold.  minor aches.  On the 20th and 21st I took dayquil to ward off what I thought was just a cold.  I had hung out with a friend on the 18th and 17th who had a cold that made him lose his voice.  So the exposure time was right for a cold at 24 to 36 hours.  On the 22 and 23rd I had a fever and some chills and decided to basically take a dayquil and sleep it off.  I did continue to eat normal food but was eating light.  I did have a few instances of waking up all sweaty and so I took a shower to deal with that.  I also had the thermostat on 81 and was under the covers, so that would definately make me sweat.  The fever cleared after a 2 days and became a sore throat.  The sore throat stressed me a bit and my cold sores (aka herpes simplex) became activated.  They happened to form on my tonsils which is particularly unpleasant.  on the 24th and 25th I was basically taking it easy and pretty worn out.  On the 25th I noticed a rash on my chest.  The 26th and 27th I was active and able to work but not 100%.  On the 29th I decided to go get a HIV and syphillus test after talking to some friends.  The counselor at the testing site suggested going to the clinic the next day and getting tested.

Now the interesting part.  They did a Oraquick test (elisa) and it came back HIV neg.  Previous Negative result August 29th.  The doctor seemed to think I was having seroconversion sickness.  He also thought I probably had syphillus.  I was given two shots of bicillin, bloodwork was drawn and a test for hiv, syphillis, and hep was ordered.

Within 36 hours I felt great and my symptoms vanished.  Rash cleared up, etc.  I still had a cough that I still have (3 weeks later).  Also have a couple of swollen lymph nodes (literally 2).  Got another dose of bicillin on the 7th, no test results back yet.

Went in yesterday 14 Dec, and the test results were in.  Syphillis was positive, hep was immune (i had been vaccinated previously to hep b) and negative, and they said my western blot was indeterminate.  I had a reaction to one band.  I don't think they ran an ELISA blood test.  However, I'm not certain.  

The dr. yesterday wants me to wait 30 days and come back in for another test.  It will of course take 2 weeks to get the results.  I really don't want to stew on this for another 45 days.  I've also taken time to think through my risk factors and I can't find a smoking gun so to speak.  In the 14 days prior to my illness I was only with 3 partners.  2 of them were limited to oral sex and jacking off.  1 of them was risky, but I was the top.  That encounter was on the 6th.  Timing isn't quite right, but still is possible for an hiv exposure.

My problem is that I've been told that seroconversion illness is the worst, nastiest illness you've ever had.  I think I was sick, but it wasn't that bad.  I've had food poisoning and that was 10 times worse then this.  It's within the 14 day window to barely at the end of it, but I was under the impression that seroconversion illness happens almost immediately.

I also have read that past or present syphillis infection can mess up western blot results, resulting in an indeterminate.  I've had syphillis before, and I had it at the time the blood was drawn for the western blot.  In fact the western blot blood was drawn about an hour after I was given the bicillin.  I think I had a cold and syphillus, but not HIV.  Yes, I realize it's a bit of denial potentially.  But I can't find concrete support for an HIV infection.

I should have been sick a week earlier if it was HIV.  It should have been much more severe.  The research I've read suggests that a blood test at 21 days should show antibodies.  It didn't.  

I don't like being in limbo.  It's actually worse then being poz or neg.  I'm a bit annoyed that the dr didn't suggest a PCR test.  But I understand that the clinic has limited funds and needs to do the most with it and that they have a protocol they follow.  I still feel like I should have been given the option.  

If I am positive, I want to know asap so that I can get on with living with it.  Waiting 45 days to figure it out just bothers me.  I'm now at 45 days since the suspected exposure and 30 days from the illness.  Oh, and my titer score for the syphillus was 1 to 16 which the doctor said was pretty low.  That supports a infection at about 2 to 3 weeks and in my mind confirms where I caught it.

I'm hoping for some support and ideas here.  Monday I'm going to go back and get a copy of my lab results so I can find out which band I tested positive for in the western blot.  I also want to know if the ELISA test was done and if it came back positive or negative.  Considering that I had a negative ora-quick (elisa) that would be particularly interesting.  I'm also considering have a PCR test done and the biggest factor there is getting the results quickly.  I think they can be done for $250 to $300 from what I've seen.  And I'm not worried about that cost at this moment.
61 Responses
Avatar universal
Are you done jabbering? You said you were the top was it protected or not? HIV has no specific symptoms. Symptoms or the lack of is not indicative of HIV infection. You want the option of a PCR test then go some place that offers it. Why did they do a Western Blot if you didn't have a reactive result to your ELISA? That is the only time they do a Western Blot, is to confirm a positive result.
Avatar universal
I do agree.
A WB test would not have been performed unless the ELISA was reactive.
I would agree with your MD, however, that a PCR should not be done.

Now, for the brief lecture....and believe me, I have had mine before.
(1)You NEED to be using condoms for all anal/vaginal sex that you are having outside a committed, monogomous relationship. And even in a committed, monogomous relationship, you shoud be aware of the other partner's status.
(2) You state that you "ONLY had 3 partners in the last 14 days".  That is a high-risk lifestyle.  You lack of contiuance to using condoms is going to have you infected with HIV...someday, ...if not sooner than later.
(3) Your pase approach to having syphils before somewhat frightens me.  You said that you have had syphilis before, and seem as though that it is no big deal.  Well, it is. No less the fact that you are haivng HSV lesions on your tonsils is another facet that is alarming.  You seem to be rather sexually active. Considering the past STI's and the mere fact that you are coming here today to ask us about a rather lengthy epsiode of your sexual health history demonstrates a sever need to be using protection ALL the time.
I do hope that you come out of this ok.
But please, unless your purposely looking to get HIV, you BEST be using condoms for sex. Putting on a condom only takes a few seconds dude!!
Avatar universal
I think I did mention that Chris.
Read my #3 reply.
Avatar universal
I'm sorry, I didn't sign in here for the moral lecture.  All of which is correct.  It's not that I'm unconcerned with it, rather that syphillis is very easy to catch, and very easy to cure.  Therefore in the grand scheme of things it doesn't seem that important.  And no, I did not expose anyone to the HSV sores / ulcers.  Seeing as they have never been tested it's just a guess that they are HSV.  They are stress induced and they are a separate issue.  80% of the population has HSV according to what I've read.

The MD thought that symptoms were indicative of primary HIV infection despite a antibody negative Elisa.  I don't understand why a PCR wasn't run as it's nonsense to run a WB when there are not antibodies.  I know this now, but at the time I didn't know any better and thought a WB was the best possible test.

What I was hoping is that some of the people here might have more insight into the small population, statistically, that I'm in.  Indeterminate WB results are extremely unusual (.00004%) because it is typically used as a confirmatory test after a antibody positive Elisa.  The fact that the MD ordered a more advanced test isn't a surprise.  He genuinely thought it was a primary hiv infection.  I'm not convinced that I was that sick.  As for sickness, according to NYU's first call site (which I think is a reputable source), 80% of those infected with HIV experience what is called "seroconversion sickness."  Everyone I know that has had it said it is the absolute worst cold you have ever had in your life.  I'd like more information about that, but again can't seem to find it.
Avatar universal
Well, let's get this straight...no pun intended.
I am gay, so you are preaching to the choir there bud.

1. As for HSV, it is not stress-induced, FYI, that is an old wise-tale.
2. having syphilis is not a walk-in-the-park. Having a concurrent STI while having sexual relations with someone significantly increases your risk for HIV, for starters. That includes HSV, gonnorhea, or chlamydia. And besides, HSV in the mouth is NOT a common occurence, it may eb an oral ulcer, not HSV.
3. 50-80% of persons are the stated risks for seroconversion, and it is not like a cold, more like the worst FLU you would ever have.
4. I think the lecture is IMPORTANT. As much as you may not know me, I am telling you this (and writing this) in the sincere hopes that you see that someone does care. (The fact that I am spending a colossal amount of time writing this info.)
5. The confusion to whether or not you received an ELISA test is still unclear. Your MD should not have ordered a WB unless an ELISA showed a preliminary +ve. Then the WB is followed....for primary purposes as well as expense. FYI
219662 tn?1223858560
1. An indeterminate WB is not unusual early after infection.  In fact the WB is always indeterminate until full seroconversion takes place.
2. A "seroconversion sickness" varies from person to person.  Some people have it very bad, some have it mild and some don't get sick at all.  Your sickness was entirely consistent with the typical HIV ARS.
3. Syphilis increases the risk for HIV transmission by A LOT.

So, in summary, I think you should take this seriously and get tested at the proper time - 3 months is the official guideline.  Whether you take PCR or not is irrelevant.  If you do come out of this HIV-negative in the end, I suggest you make some lifestyle changes, because if you don't you it is only a matter of time until you get HIV.  Good luck with the tests.
Avatar universal
Well-written Joe.
Avatar universal
1.2>  Maybe they are oral ulcers.  I had a dentist look at them once and several MD's.  They all said they were stress induced and to watch my diet and stress levels.  That seems to have worked and typically only two or three things will produce an episode.  Being sick (cold/flu), financial problems, and severe relationship problems.  I had a cold (or whatever), and had some looming financial headaches which have since resolved themselves.  They were responsive to a prescription.  I forget the name of the drug, although it was expensive.

3: I don't think I was that sick, but I found some more info that details what the ARS/seroconversion illness entails and some of the symptoms are similar.  An article from American Family Physician, August 1999 entitled "how to recognize and treat Acute HIV Syndrome" gives frequency statistics on the symptoms and how often they occur and gives details on what they are like.  It's an informative article.

The NYU site I mentioned earlier is from NYU Medical Center's HIVInfoSource.

4. Acknoweldged, and appreciated.

5. I've made a habit of going to see the same HIV Testing counselor each time I needed to get tested.  As a result a friendship of sorts has developed.  An ELISA test was done, Oraquick.  It was negative.  However, The MD wanted to do a blood test because he thought it looked like primary HIV infection.  He also initiated treatment for syphillis.  My counselor and I discussed it for several minutes.  I was content to wait 30 days and retest.  He urged me to go ahead and do the more advanced test to see if I was positive.  I didn't know anything about PCR or WB or Elisa testing at the time other then it would tell me if I had antibodies to HIV and that the western blot was a more expensive and more accurate test.  You are correct in that a + Elisa result is normally requird for a WB to be done.  The other condition that warrants a WB is a MD who thinks it is acute HIV.  I had the second condition.

What is frustrating for me is that I was basically told that I had an indeterminate WB and that I should wait 30 days to retest.  I wasn't presented the option for a PCR test which, depending on what you read is accurate between 7 and 28 days from exposure.  More daming, in my opinion is that the WB and Elisa test are "sharp stick" type tests where they are searching for antibodies to proteins (the virus itself or components of the virus depending on the test).  Whereas the PCR test is a high sensitivity, high accuracy test searching for DNA of the virus.  PCR is said to be capable of detecting 50 copies per ML of blood.  The PCR has a gold standard and WB and ELISA do not.  PCR is what is used for health practicioners and researchers who fear they may have been exposed.

I'm at peach with being poz if it comes to that.  I'm also hoping I'm still neg, although I doubt it to be perfectly honest.  I dislike being in the purgatory of ignorance.  Having an indeterminate result and being told "we don't know."  The more I read, the more important I realize that the first few months are in an HIV infection.  It appears to be critically important to know the viral load, and if the load is high or the cd4 count low it is important to have the virus genotyped for resistances.  Each test takes a week or two and that means that if I really got unlucky and got a nasty strain of the virus it could wreak havoc on my system until mid Feb by the time we got all the test results back after a poz test result in mid to late Jan.  If I'm poz it seems that knowing it in December and being able to get the necessary testing done a month earlier makes alot of sense.

to Others: Any experience with PCR?  Am I correct on it's accuracy?
Avatar universal
Again, PCR testing is not used as a diagnostic tool to decipher someone's HIV status. PCR, from what I UNDERSTAND, is used to measure someone's viral load, NOT STATUS.

If you are not at all that concerned about being HIV+, then why not wait the MD's "30 days"?
Does it really matter?

When was the last time you had a risk that substantiates for testing?
Avatar universal
What I am reading from your "original posting" is the "dipping".
That is the only substatiated risk.  When was it?
219662 tn?1223858560
PCR is a fine test.  The problem with PCRs is that they are in fact not the "gold standard" test - a Western Blot is.  For example, it is not very uncommon for a PCR to give a falsely positive result.  Also, some people naturally have very low amount of virus and test negative on a PCR.  "Teak" here for one is undetectable by PCR - and he has AIDS.  He takes medication, but some people are undetectable in the absence of any medication.  So you can take that test, but it does have certain limitations.

I understand your anxiety and desire to get the results ASAP.  First of all - you don't need to wait 2 weeks for the ELISA results!  There are plenty of tests nowadays that give you an accurate result in 20-30 minutes!  You just need to find a clinic in your area that offers such a test, often it is free.  Second, since it has been 6 weeks since your last serious risk, you don't need to wait for that test, get it done on Monday!  It will be very accurate and you could relax a little.  I would still follow-up with a test at 3 months to be sure, but a test right now will be fairly reliable (the one you took 3 weeks ago is not).  I hope this answers your questions.
Avatar universal
Yes it does.  
Avatar universal
My understanding is that a PCR test is the most accurate way to detect new infections.  Yes it is called a viral load.  It can often be used to detect the virus before the immune response has begun and created detectable antibodies.

Yes, there are people on meds who are able to get the virus to become undetectable.  However, if I am infected then I should have very high levels of the virus in my system at 6 weeks.  
Avatar universal
Why do a PCR at this point?
95%+ of persons would test +ve by now.
Based on your original statement, you do not seem so overtly concerned with contracting HIV anyways.
6 more weeks will not kill ya.
or just test now...for a "general" idea.

But a word-to-the-wise....
If you do test negative,.you should modify some of your sexual activities.
A regular participant on this forum who is HIV+ would see your activities as irresponsible and reckless.

If you are seeking to become HIV+, you are doing a damn good job.  I just hope that you are going to get accustomed to living a HIV+ life, which endures sickness, countless paperwork regarding health forms (since the drugs can run over $80,0000/year) and that you are able to deal with it mentally.  Not to mention MANY other factors.

All I can say is....good luck!
Avatar universal
wow! the thought of being HIV+ is one thing..but the cost of the medicines....are you serious?
Avatar universal
Would I have stated it had it not been realistic?
Avatar universal
Not to mention Doctors visits every 3 months, fatigue, diarrea, constant headaches, the fact that 10-15% of medications become invaluable after a designated amount of time, ending up in the hospital due to other complications, not being able to cope with some everyday duties. Not to mention SOOOO many other health complications.

Think about it!
219662 tn?1223858560
You are right, PCR is the best way to detect new infections.  By "new" it means the first month after infection.  In your case it has been longer, 6 weeks or so.  At this point PCR is no longer the best way, ELISA/WB is.  I would say don't wait, take one of the "rapid" tests tomorrow.  If it's negative you can relax and expect a negative on the follow-up.  If it's positive you know what to do.  By the way, you said above "I'm at peach with being poz" - I hope you have good health insurance to go with that attitude!    
Avatar universal
When I said "i'm at peace with it" I simply mean that I'm not going to freak out, get depressed, or go crazy.  I do not want to be poz, I just realize that I engaged in some risky behavior, regret it, and can't undo it.  

You cannot change the past.  You can make the best of the present and the future.

I prefer to see the glass as half full, as it is all too easy to see it as half empty.  At this point the only thing I can do is get re-tested and find out for certain.  

I did go back to the clinic that did the test and spoke with a counselor.  That was a good step.  Based on what I've learned over the last few days I asked more detailed questions.

An ELISA test was not run.  Just a Western Blot.  A rapid elisa (Ora-quick) was done the same day and came back negative.  I've also been vaccinated against Hep B, and had syphillis at the time.   The bad news is that the band that was reactive was P24.  That is typically the first band to react during seroconversion.  The other bad news is that several of the symptoms I had match Primary HIV Infection pretty well.

So at this point I'm hoping it's negative, and mentally preparing for it be poz.

The clinic didn't seem interested in doing a DNA PCR test.  It required a follow up appointment, 2 week wait, and $600.  I discussed the option of another testing provider and the counselor suggested waiting 30 days, or if it would put me at ease, using the other testing provider.  It was $239 to have an ELISA and DNA PCR done with results in 2 days.  If the ELISA returns positive they will automatically run the WB at no extra charge.  While there are some who would feel this is overkill, or impatience.... I think I am far enough past the exposure and illness that the results should be reliable.  The process was very easy.  A 5 minute call to setup the test, pay for it, and pick a site to draw blood.  They use Labcorp who has sites all over Houston.  It took 5 minutes once I got there and the technician/nurse who took the blood was able to tell me that I'd have the results on Wed for sure.  The testing provider thought it would be 2 to 5 days but couldn't say for certain.  I even asked her if they found something if it would take longer, and she said no, I'd have my results for sure on Wed.  So on Wed I'll call the testing provider and find out hopefully for sure what is going on.  We'll have at the least an ELISA result and a DNA PCR result to compare.  If they are both negative than I think it will be safe to conclude my status as negative.  If they are both positive, then we will have a ELISA/WB and DNA PCR both saying the same thing.  Either way I will know more on Wednesday.

Brian123 - You are correct, I do need to behave more responsibly.  NO I am not trying to catch anything, much less HIV.  Thank you for your concern.
Avatar universal
For those that wonder why HIV is still being spread, this thread is prime example.

Fever, Rash, Fatigue, pharyngitis, lack of apetitie, mouth ulcers, night sweats........  coupled with point of onset.

Text book

For those that would more in depth explanation of onset, symptoms & duration; check this link
Avatar universal
Now explain what you just read. Did you not read down at the bottom? However, if these results are confirmed.
Avatar universal
No explanation needed. Of course the ultimate diagnostic tool for HIV is getting tested. But if there were no indicative/coralative symptoms, they would never be mentioned or investigated in hte first place.
Avatar universal
And how many people don't have symptoms? How many times have you read that symptoms or the lack of, are not indicative to HIV. HIV has no specific symptoms and the only way for one to know that their symptoms were related to ARS is by testing positive.
Avatar universal
yep, I never said the like wise either.
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