Unusual symptoms

[Resilience]

Hey everyone,

First off thanks for taking the time to read this, the forums here seem like a great support network.  I'm a 31 y/o hetero male and I've had 6 long term relationships in the last 12 years or so.  I regret to say I've had unprotected vaginal sex in a couple of these monogamous relationships, but only a handful of times (the last was maybe 2 1/2 years ago).  I've only slept with 2 women (both well protected with a condom) with whom I wasn't in a long term relationship with, and the latest was in late August.

So, here's my medical history the past few months:

In mid November, the first thing I noticed was a flat purple spot on my inner right ankle (circular, about the size of a pencil eraser).  It's still there, but mostly faded.  That ALONE was weird, but I had no idea what I was in for.  Soon, I started to notice skin lesions all over my body; kind of like acne (but without the whiteheads) which started to disappear, and some became boils.  Instead of fully disappearing, they seemed to change and became more like whiteheads and some were different than others.  A lot of them have become purple spots on my skin, kind of like bruises.  They have mostly subsided, but lately I'm still getting some of them, and they heal with white scabs that form sort of around them.  I also developed a couple of patches on my legs that get really itchy.

I also noticed what seems to be molluscum contagiosum on my face.  There are maybe 5 or 6 of them and are really tiny, almost flat, and flesh colored and haven't gone away for weeks.  Every once in a while my skin gets a little dry and flakey too.

A few days ago I found white material on the tip and side of my tongue like I've never seen and scraped it off, which seems consistent with oral thrush, and it feels like there is something in my throat.  As I speak my throat is slightly sore (not like when you have the flu), my tongue is sore, and today my gums have actually burned and peeled a little from eating hot soup.  I also occasionally get little mouth sores that appear and disappear very quickly. 

Besides these symptoms, I've just felt tired and weird in general for the last few months.  I went to a doctor in mid January and I was really anxious.  I told him about my skin but I didn't get a chance to mention all my symptoms, and I thought I'd have him figure out what was wrong just in case I was being irrational.  My doctor heard some slight crackles in lower lungs so asked me to get a chest xray.  I did, and there was a "tiny bit" of fluid in my lungs.  On the phone he said it was due to "infection".  I'm supposed to get a follow up xray for this soon.  He also noted that I had high cholesterol and after some blood work (cbc, etc), sent me to get more blood work for my liver.  He suggested that I might have fatty liver and today I had an ultrasound of my liver.  However, the symptoms of fatty liver don't explain my symptoms at all (doesn't really cause symptoms except possible fatigue).  Anyway, I'm supposed to see him again soon now that I've done the ultrasound of my liver and although I was terrified to even mention HIV at the time, I just want the symptoms to go away. 

Well, here are my questions:

1) It's unlikely that my last sexual encounter has anything to do with this because symptoms didn't set in til about 10 weeks after, have lasted for months, and because it was fully protected vaginal intercourse, correct?
2) Are my symptoms more like what you'd see after being infected for a while? They don't seem to match typical "ARS" symptoms as far as I can tell.  What worries me is they seem like later stage HIV symptoms. 
3) Would my doctor have reason to suspect HIV according to my blood work if I do have later stage HIV symptoms? Is it true the symptoms I'm having mean that I have a lower cd4 count? I've had a complete cbc w/differentials and a bunch of liver tests.  He also tested me for hepatitis (neg). 

I've had many sleepless nights over the last few months, and I'm sure tonight won't be much different.  Today, I felt really weak and kind of spacey.  I know the moderators are not necessarily doctors, but I really needed to talk to someone.  Ironically, I've isolated myself a bit from my friends since I've been sick.  What I'm most worried about is my family dealing with the news if it turns out I'm positive (I'm an only child), and my prospects for having a family of my own someday.

Thanks so much.

P.S. I don't have a lot of money to spare, but I've donated $20 to Amfar, was this a good organization to enhance CURE research (as opposed to prevention, etc)?  Even if I'm negative, this experience has enlightened me for good.  I plan on doing everything I can to help further research in a cure.  From what I've read lately, it seems like a real possibility.

[RapidRod]

1. Correct, you had protected sex.
2. HIV has no specific symptoms. The only way to know if you were ever exposed is by testing.
3. No, not without doing a specific HIV test.

[Ann]

Res,

Anytime you have unprotected intercourse you are putting yourself at risk for hiv infection and you need to test. Testing is the ONLY way to accurately know your hiv status. Symptoms or even the LACK of symptoms will never tell you anything about your hiv status.

As long as you are testing three months or more after your last incident of unprotected intercourse, your result will be conclusive. Go test and get it over with - it's the ONLY way to know.

Here's what you need to know in order to remain hiv negative;

You need to be using condoms for anal or vaginal intercourse, every time, no exceptions until such time as you are in a securely monogamous relationship where you have both tested for ALL sexually transmitted infections together. To agree to have unprotected intercourse is to consent to the possibility of being infected with an STI. Sex without a condom lasts only a matter of minutes, but hiv is forever.

Have a look through all three condom and lube links in my signature line so you can use condoms with confidence.

Anyone who is sexually active should be having a full sexual health care check-up, including but not limited to hiv testing, at least once a year and more often if unprotected intercourse occurs.

If you aren't already having regular, routine check-ups, now is the time to start. As long as you make sure condoms are being used for intercourse, you can fully expect your routine hiv tests to return with negative results. Don't forget to always get checked for all the other sexually transmitted infections as well, because they are MUCH easier to transmit than hiv.

Use condoms for anal or vaginal intercourse and you will avoid hiv infection. It really is that simple.

Ann

[Resilience]

Thanks for the answers, both of you.  I already knew what I have to do, I guess it's just driving me mad in the meantime.  I already don't feel too well, and mentally this just adds to it.  I'm supposed to hear from my doctor soon about my ultrasound, so maybe he can shed some light on the subject when I go see him. 

It's kind of scary to learn that doctors can't diagnose this disease right away.  I bet most of the world has no idea, and people would test more often if they knew this.  Until I started reading up on it, I always figured that it would be obvious due to symptoms. 

Also, any opinions about the donation? I think if all the people who are worried about HIV on this forum donated to a cause that searched for a cure, that'd be a great thing.

[RapidRod]

How about spending the money on condoms and lube so you don't find yourself in this situation again.

[Resilience]

Well, honestly, right now sex is the farthest thing from my mind and there's no way I would ever do it again without protection (unless I was married or something).  I'm not even interested til I find out what the hell is wrong with me. 

Like I said though, the only times I ever DID have unprotected sex were with long term partners, but I've finally learned that even this is just as risky as anything else...I just hope it's not too late now.  I was very naive in my 20's putting my full trust in my long term g/fs after dating them for around 4 or 5 months without a second thought.  Even then, I was very careful, but there was that handful of exceptions and that's what worries me.  Statistically, I think my chances are pretty low but my symptoms are driving me nuts and it only takes one time.  Nothing else seems to fit nearly 4 months of strange rashes, weakness, lung infection, oral thrush, etc.  I've convinced myself that my cd4 count must be low because these are all signs of weakened immunity.  On the other hand, almost all of my ex g/fs know where to contact me if they found out they were infected...it's driving me insane.

Anyway, I already did spend some money hoping that it would go into research, Amfar was the best one that I could find offhand because they seemed committed to research.  I think you guys are doing a great service by educating the masses on this forum, and that is something that is very necessary as well, but IMO there HAS to be more effort to find a cure out there.  Without research, we wouldn't have HAART today, but unfortunately it feels like that sense of urgency to find a cure has diminished since it was discovered.  It seems so close, but I'm sure a lot of researchers are slowing down or stopping due to funding problems.  That's why I'm wondering: if you were to have every person in the world donate $1 to an organization devoted to the cure, which one would it be?

[Ann]

Res,

Quit torturing yourself - just go test and get it over with. The odds ARE in your favour of testing negative, but the ONLY way to know for sure is to test.

Donating to Amfar is fine. You might also think about donating to your local ASO (AIDS Service Organisation) because many are struggling to meet the needs of their clients in these difficult economic times. You can find the ASO nearest you by going to http://directory.poz.com/ and entering your zip code.

Now quit faffing about and go test!

Ann

[Resilience]

Well, I finally went ahead and took the test through my doctor at Westcliff laboratories a few weeks ago (along with a lyme test which was neg).  The results came back unreactive through a Siemens Chemiluminometric Immunoassay.  I was already getting used to the idea of living with HIV, and I was completely SHOCKED. 

Kind of ironic, as I'm sure many people who actually test positive are shocked to learn they are positive.  Well, it was the opposite for me.  I'm stumped.  I STILL have a couple of molluscum lesions on my face, and I am still getting paresthesia (numbness) in my hands and feet as well as a oral ulcers and mild thrush.  I still get dry itchy patches of skin occasionally too.

But I want to thank those of you who deal with undiagnosed people like me with genuine health concerns.  I know you have to live with this disease and that's a burden enough already, I commend you for fighting back against HIV/AIDS in this way.

Well, I trust the results about 90%, but because I had so many symptoms similar to what would happen if someone was undiagnosed with HIV for years, can I get a confirmation from those of you who are more knowledgeable in this field?

1) Is there ANY way the lab might have erred, mixed up my sample, or anything else?
2) Any chance of a false negative due to an unusual subtype, co-infection, or having HIV for a long time with symptoms?

If there's ANY chance I have HIV, I need to know, because I likely would have been infected a long time ago.  I REALLY don't want to end up in a hospital with PCP having a doctor apologize to me about how the lab erred on my previous test.  Yikes.

I was SO SURE that I was going to test positive, that I would check this site a lot just to get an idea of what it was like to live with HIV so I knew what was inevitably going to be my future.  I got really comfortable with it, to a point where I was already OK with it.  It was bittersweet; I'm actually really glad I got to experience that, and I wish more people could experience it (without having to go through the same anxiety that I did) just so they could understand the stigma involved.

Anyway, I vowed to myself whether or not I was positive that I would support AIDS activism from now on and do everything I can to support those working on research and I will. 

As for me, I'm still undiagnosed with something and that still bums me out.  My doctor isn't being very helpful (says my labs look normal), and I don't have insurance.  Here's hoping it's something minor.

cheers

[RapidRod]

Your test is conclusive. You are negative.

[Ann]

Res,

1) It's extremely  unlikely. If you're that worried, go get a rapid test done where the results come back within 20 minutes and there is no lab involved. If you do this, don't expect your result to change.

2) NO. As long as you tested three months or more past your last incident of unprotected anal or vaginal intercourse, the test result is conclusive. It would have picked up any strain.

There are hundreds, if not thousands, of conditions and illnesses that can cause the problems you're having. You need to go to a doctor to find out what is going on instead of chasing an illness you do NOT have. You're not the first to erroneously believe they have hiv based on symptoms and unfortunately, you won't be the last. That does not change the fact that you do NOT have hiv.

You will not be permitted to use this forum to continually question your negative hiv status. Get yourself to a doctor and find out what, if anything, is going on. Whatever it is, it is NOT hiv.

Use condoms for anal or vaginal intercourse, correctly and consistently, and you will avoid hiv infection in future. It really is that simple!

Ann

[Resilience]

Thanks Rod, straight to the point.

Thanks Ann.  Don't worry, I'm not going to continually question my status.  This was my first ever HIV test, and the whole thing has definitely changed me for the better.  It has all turned into a process of growing up for me.  I just wanted to be sure that this test was 100% reliable since there is a footnote under "non-reactive" that states "HIV antibodies have not been found.  This does not preclude previous HIV exposure or infection". 

This experience also forced me to see the flaws in the medical field.  I thought that some simple blood work would easily diagnose me.  Well, I guess there's still a lot of work to be done.

As for what's really wrong with me, I've been seeing my doctor for the last few months.  I am going to make a dermatologist appointment for next week, even though I can barely afford it.  Maybe you'll see me on one of those "medical mysteries" shows.  Take care