Newbie

[Madrettor]

Hi all,

I've been to my doctor this afternoon and unfortunately she told me the blood results were positive; I am HIV+. It came as quite a shock, but I guess when you have unprotected sex it shouldn't come as too much of a surprise this is one of the possibilities. I assume my life will be changing in terms in certain ways from now on and I noticed I'd like to share those experiences with others who might be going through the same. Hence my registration to this forum.

[scooter24]

Hi! I'm happy you found the courage to post! Sorry you're here. I hope to hear more about your story and hopefully you find support you may need.

[mecch]

Sorry for that. Glad you found us here.

[Madrettor]

Thanks, guys. Did my confirmatory test today. Hoping my viral load will be low and I can get to undetectable soon. I seemed to be relatively calm after the results yesterday, but I couldn't sleep at all. Apparantly the fact I have HIV hasn't quite sunk in yet.

[Madrettor]

I'm quite worried I've been too late with testing now. I started having unprotected sex with my boyfriend years ago and foolishly never got tested. The main reason for me to think it's bad already is because I've lost quite some weight in the past months.

[DANIELtakashi]

You are saying you have lost weight.
Is that the only change?   No breathing problem or exreme fatigue?
Hope you are all right.

[zach]

have you received your result from the confirmation test yet?

[Madrettor]

You are saying you have lost weight.
Is that the only change?   No breathing problem or exreme fatigue?
Hope you are all right.

2 years ago I had a little wart on my finger. The lymfe in my neck has been swollen since about 2 years ago as well (I always thought it was because I was using creme to get rid of my pimples). I started a diet 6 months ago, but when I stopped I kept losing weight way too easily. 3 days after the last time I had sex with my boyfriend I got Herpes. The Herpes is the reason I found out about my HIV. I have Asthma, but those problems haven't gotten worse. No extreme fatigue. I've been feeling a little unwell because of the Herpes (I assume), but I don't find it an issue yet.

[Madrettor]

have you received your result from the confirmation test yet?

Hey, not yet. I did my blood test today. I'm expecting the results next week. The doctor has made me an appointment with a specialist in the hospital for this Friday though. I'm sort of scared, but also happy I'm starting up the war machine against HIV.

[zach]

just to be crystal clear then, based on what you've said

you have a preliminary positive result, but you have not been confirmed positive as of yet

thank you for clarifying

nothing to be scared of man, no matter what your results turn out to be, hiv is very manageable

[DANIELtakashi]

I got sick only a year ago and am still in the process of recovering mentally, so l cannot give you enough advice.   But people on this site tell me l will be all right , and you will be, too.
Dank U .

[Madrettor]

just to be crystal clear then, based on what you've said

you have a preliminary positive result, but you have not been confirmed positive as of yet

thank you for clarifying

Yes, but it's just a matter of days, I'm afraid..

[Madrettor]

I got sick only a year ago and am still in the process of recovering mentally, so l cannot give you enough advice.   But people on this site tell me l will be all right , and you will be, too.
Dank U .

I can imagine - I do believe you will recover! I hope I will too.

[Joe K]

Yes, but it's just a matter of days, I'm afraid..

Madrettor,

Until you have a confirmatory test, regarding your status, I must ask that you only post in this thread.  Please post your results as soon as you have them.

Thank you for your cooperation.

Joe

[Grasshopper]

Sorry to read you tested positive. But don't worry we do have excellent Healthcare in The Netherlands. (komt allemaal goed, en wees niet bang voor de medicijnen)

[Madrettor]

Madrettor,

Until you have a confirmatory test, regarding your status, I must ask that you only post in this thread.  Please post your results as soon as you have them.

Thank you for your cooperation.

Joe

Sure. My apologies.

[Madrettor]

Sorry to read you tested positive. But don't worry we do have excellent Healthcare in The Netherlands. (komt allemaal goed, en wees niet bang voor de medicijnen)

I'm really glad I have an appointment with a specialist this Friday already. I just hope I haven't given the infection the chance to damage me too badly already at this point. But from what I read on here so far it's perfectly treatable. Dankje

[zach]

I'm really glad I have an appointment with a specialist this Friday already. I just hope I haven't given the infection the chance to damage me too badly already at this point. But from what I read on here so far it's perfectly treatable. Dankje

don't let the lab results and numbers spook you... a much better measure, how do you feel? if you feel good, and now that you're going into care, you'll be fine... you're in control now, not the bug

[Madrettor]

don't let the lab results and numbers spook you... a much better measure, how do you feel? if you feel good, and now that you're going into care, you'll be fine... you're in control now, not the bug

I certainly didn't feel ill until the Herpes showed up about a month ago. Yes, for a few years I've felt like my sleeping patterns have gone crazy (days and nights switching), but then.. I always thought that was because of the weird schedules and freedom uni gave me. That, and the weight loss are the most significant changes. The lymfe and wart are hints as well, I suppose. Anyway, in short, I don't feel bad, but I've definitely noticed changes, which have become more obvious now that I'm looking at it from a new perspective.

[Madrettor]

Sorry to read you tested positive. But don't worry we do have excellent Healthcare in The Netherlands. (komt allemaal goed, en wees niet bang voor de medicijnen)

Hey, can I ask you something else.. do they also check the viral load and all that during the first blood test? Like, *if* I had AIDS, would it show in that first blood test already? Or is that more detailed and the specialist's concern?

[zach]

without knowing what sorts of lab work was ordered for you, it's impossible to answer that question

generally, that would fall into the ID specialists wheelhouse.

moving forward, always try to be aware of what tests are being done on you, and try to get your own copies of the results. mine are emailed to me, but i used to get paper copies in the post, whatever works.

the first numbers to look for that will gauge where you are starting from... CD4 count, CD4 percentage, and viral load

there are other numbers and ratios, and they all mean something, but those first three are going to be the ones to track.

you can also expect the specialist will run a genotype test on you, to see if you have resistance to any medications. the results of that test will determine which meds will be options for you.

it can take a week or two to get those results back

[Madrettor]

That's a lot to deal with. I'll just go to the specialist Friday and see what needs to be done. Thanks for the copies tip, btw. Very useful. I'll do that.

[Grasshopper]

Hey, can I ask you something else.. do they also check the viral load and all that during the first blood test? Like, *if* I had AIDS, would it show in that first blood test already? Or is that more detailed and the specialist's concern?

If you prefer we can communicate in Dutch via PM. Feel free to ask

[Reallove92]

Hey glad to hear u r coping with it well, I just got my first cd4 count and VL  cd: 560 VL: 54,500

[DANIELtakashi]

How are you feeling today?

[Madrettor]

How are you feeling today?

Looking forward to my appointment tomorrow. Treatment can't start soon enough.

[Madrettor]

Hey glad to hear u r coping with it well, I just got my first cd4 count and VL  cd: 560 VL: 54,500

I'm not really familiar with the numbers, but I think I've seen numbers that are way worse!

[Madrettor]

Had my first appointment this morning. Did some blood, urine and other STD-tests. They checked my blood pressure, weight etc. They wanted an entire profile, I suppose. My ''nurse'' was really reassuring and nice. She obviously couldn't tell the results yet, but just talking about it and being in the hospital made me feel better already, because now I know the war against HIV is about to kick off. A few days since I heard the bad news and I'm feeling better now. Fingers crossed my scores won't be bad and ruin that mood again.

[DANIELtakashi]

Please take care.

[Madrettor]

Please take care.

Giving my all! I think my weight loss is a bad sign, btw. We'll see on Monday.

[zach]

you just had labs today... may take a week plus for those results to come back, monday may be a little optimistic

don't read too much into your weight loss... you're jumping way ahead, symptoms like wasting are advanced

see where you're at before you see bad signs

[Madrettor]

you just had labs today... may take a week plus for those results to come back, monday may be a little optimistic

don't read too much into your weight loss... you're jumping way ahead, symptoms like wasting are advanced

see where you're at before you see bad signs

Really? She told me she expected the results to be back on Monday. As for the weight loss, I'm trying.. it's just that I've been doing some research and it *usually* isn't a very good sign, but indeed.. maybe I am reading too much into it. Controlling these sudden outbursts of concerns in my head is still difficult.

[zach]

again, you're non-specific about which "results" you're talking about

all depends on what sort of test is being talked about

some lab tests only take a few hours for the results, some take days

some lab work is done in house, some clinics send the blood to an offsite lab, so you have to add shipping time

[Madrettor]

again, you're non-specific about which "results" you're talking about

all depends on what sort of test is being talked about

some lab tests only take a few hours for the results, some take days

some lab work is done in house, some clinics send the blood to an offsite lab, so you have to add shipping time

The CD score and viral load.

[Madrettor]

My CD4 is 580. No VL yet.

[Joe K]

Thanks, guys. Did my confirmatory test today. Hoping my viral load will be low and I can get to undetectable soon. I seemed to be relatively calm after the results yesterday, but I couldn't sleep at all. Apparantly the fact I have HIV hasn't quite sunk in yet.

What was the "confirmatory" test that you took to confirm your positive status?  The answer matters.

Joe

[Madrettor]

What was the "confirmatory" test that you took to confirm your positive status?  The answer matters.

Joe

Hasn't come back yet. I expect it tomorrow or the day after that. Matters for what, btw?

[Joe K]

Hasn't come back yet. I expect it tomorrow or the day after that. Matters for what, btw?

It matters because you have not been confirmed as being positive.  It makes no sense that you are having all of these tests, when they haven't even verified that you are indeed positive.  The first thing anyone does, when first testing positive, is to get a confirmatory test that confirms the status.  Until they have that, why waste resources on testing you, until they know what you actually have?

Joe

[Madrettor]

It matters because you have not been confirmed as being positive.  It makes no sense that you are having all of these tests, when they haven't even verified that you are indeed positive.  The first thing anyone does, when first testing positive, is to get a confirmatory test that confirms the status.  Until they have that, why waste resources on testing you, until they know what you actually have?

Joe

Possibly because it's best to get started with treatment asap and because it helps to put a patient's mind at ease? We're not talking about some random mumbo-jumbo test here; its accuracy is over 99%. It makes *much more* sense to me to get those falsely tested started already in the meanwhile, just in case, instead of making almost *all* of the testers wait for that one thing that will be inevitable for them: treatment

I honestly can't believe that someone would refer to that as a waste of resources. I'm sorry.

[Joe K]

Possibly because it's best to get started with treatment asap and because it helps to put a patient's mind at ease? We're not talking about some random mumbo-jumbo test here; its accuracy is over 99%. It makes *much more* sense to me to get those falsely tested started already in the meanwhile, just in case, instead of making almost *all* of the testers wait for that one thing that will be inevitable for them: treatment

I honestly can't believe that someone would refer to that as a waste of resources. I'm sorry.

No reputable ID doctor, would start a patient on HAART, without confirming their HIV status.  You DO NOT start a "falsely tested" patient on drugs without a good reason.  You retest the patient to determine their "true" status.  It's also not true that all folks who test positive need to start meds ASAP.  That is not how HIV is treated.

Either way, I still need to know which test you took that "confirmed" your HIV status.  It matters because some people like to come here and "pretend" they are poz, when in fact they are not.  I am not saying that is what you are doing, however, your inability to provide an answer regarding your confirmatory test, throws up all kinds of red flags to me.

It's my job, as a moderator, to verify stories regarding HIV infection, that simply do not make sense.

That's why your answer matters.

Joe

[Madrettor]

No reputable ID doctor, would start a patient on HAART, without confirming their HIV status.  You DO NOT start a "falsely tested" patient on drugs without a good reason.  You retest the patient to determine their "true" status.  It's also not true that all folks who test positive need to start meds ASAP.  That is not how HIV is treated.

Either way, I still need to know which test you took that "confirmed" your HIV status.  It matters because some people like to come here and "pretend" they are poz, when in fact they are not.  I am not saying that is what you are doing, however, your inability to provide an answer regarding your confirmatory test, throws up all kinds of red flags to me.

It's my job, as a moderator, to verify stories regarding HIV infection, that simply do not make sense.

That's why your answer matters.

Joe

Who says my doctor did? She made me do a confirmatory test while getting me a first appointment in the hospital (where they did some further tests) in the meanwhile. I haven't started using meds yet. Even if all folks who've tested positive don't have to start asap, I still don't see any reason in why starting things up in the meanwhile would be a waste of resources. Surely it can't be bad to know where one stands?

Anyway, apart from that, I get that you have certain responsibilities as a moderator, but could you please do it more subtlety? I mean, with all due respect, but it sounded a little insensitive. I came here because I had no other place to go to express my concerns. This makes me feel a little unwelcome in a way.

[Madrettor]

And exactly what do you need to know about my test? I don't mind sharing information with you guys at all, but I hope you can imagine I don't plan on sharing all of my medical records?

[zach]

not for nothing madrettor... you and i spoke about this in private on the 13th

that was the subtle approach, it was handled quietly, and you knew not to post outside this thread yet

you are welcome here. like i said then... trust but confirm

don't go away mad

for example.... confirmed via western blot... viral load 25000

would have and will suffice

[Joe K]

And exactly what do you need to know about my test? I don't mind sharing information with you guys at all, but I hope you can imagine I don't plan on sharing all of my medical records?

I am insisting that you share only one test name and result with this forum.  I've tried to be very discreet, but you keep dodging my question.  Anyone who is confirmed as being poz is welcome here.  All we ask are test results that anyone, who actually is poz, will have had and know the test and the result.

Joe

[Grasshopper]

I'm including a link to an example of lab form used by most Hospitals in here in Holland.  I doubt  new be is able to understand or interpret it.....unless it was explained in detail by their doctor. They just hand you the forms and send you off to the lab. THAT'S how it's done here in Holland.

Even I can't distinguish the so called "confirmatory" test.  I know it's supposed to be "immunoblot" 

Link:  http://www.cma.be/LinkClick.aspx?link=aanvraag%2fAF.pdf&tabid=156&mid=387

[DANIELtakashi]

You mention they should start medication on a patient to ease his or her mind but 
I am not sure about that without any clue of the viral load?

[Madrettor]

not for nothing madrettor... you and i spoke about this in private on the 13th

that was the subtle approach, it was handled quietly, and you knew not to post outside this thread yet

you are welcome here. like i said then... trust but confirm

don't go away mad

for example.... confirmed via western blot... viral load 25000

would have and will suffice

And I haven't posted in other threads since then, have I?

[Madrettor]

I am insisting that you share only one test name and result with this forum.  I've tried to be very discreet, but you keep dodging my question.  Anyone who is confirmed as being poz is welcome here.  All we ask are test results that anyone, who actually is poz, will have had and know the test and the result.

Joe

Dodging which question? Seriously, what's not to understand? There are no results yet, so how do you expect me to share them? The fact I'm ''unwelcome'' until I've gotten the results of my confirmatory test is a little odd. Like I said, the first test came back positive and has a 99% accuracy.

[Madrettor]

You mention they should start medication on a patient to ease his or her mind but 
I am not sure about that without any clue of the viral load?

I didn't mention they should start *medication* on a patient, Daniel.

[leatherman]

It's also not true that all folks who test positive need to start meds ASAP.  That is not how HIV is treated.

that is how HIV is being treated in America now.

This year the newest US Dpt of Health and Human Resources HRSA (Health Resources and Services Administration) HAB (HIV/AIDS Bureau) HIV Performance Measures for Prescribed Antiretroviral Therapy is to prescribe antiretrovirals for all persons diagnosed with HIV** regardless of CD4 count. (**more and more testing sites are also moving to a rapid-rapid confirmation method also. This is a positive reading on two (different brands) rapid tests) The current performance measurement goal for fy 2015-2016 for Core02 "Prescription of ARV Therapy" is currently 90%; but the expectation is that treating agencies will get this measurement up to 100%.

http://hab.hrsa.gov/deliverhivaidscare/coremeasures.pdf
http://hab.hrsa.gov/deliverhivaidscare/habperformmeasures.html

the primary goals behind this measurement is using Treatment as Prevention (TasP), and to also mitigate HIV inflammation in patients as soon as possible.