HIV + Confirmation without Western Blot?

[NotTheOne]

Hello All,

A few weeks ago, I went to the doctor for a routine STD/HIV test. Two days after that I was called in for further treatment. The doctor advised me that I tested positive Syphilis, and the HIV test was repeatedly reactive. However, they would have to wait for the HIV confirmation test to come back. ...they let me walk out the doctor's office that day without any treatment for my Syphilis. ..which is another story, but I've gotten that taken care of.

The next day, the nurse called me to set up an appointment with an ID doctor. I asked her has the “Western Blot” test come back, she advised me that they do not use the Western Blot, but another confirmation test, and that did come back positive as well.

The following week, I went to the ID Doctor to get the blood work done, which is expensive as hell! Thank god they had a grant available to cover whatever my insurance doesn’t pay for. I will see the ID Doctor in a couple weeks for my lab results; CD4 Count, viral load, resistance test, OI and all that good stuff.

When I found out that the test came back positive, I cried a few days about it! I kept wondering what am I going to do now?! Why me?! …I’ve finally accepted the fact that I am HIV positive, and thanking god that I found out in a relatively early time, and that I still feel healthy. I know its not a death sentence, I just have to rearrange my life a little bit.

My question is, what other HIV confirmation tests are there other than the Western Blot Test? I don’t know of any other test. My test was done by Labcorp, but I am uncertain what test they use. Can someone please enlighten me on this?

[mecch]

http://hivinsite.ucsf.edu/InSite?page=kb-02-02-02-02#S3X
Before I turned HIV positive I was identified with the antigen test, because I was in acute - seroconversion.
I don't know enough about your situation or what should be standard protocol but antigen tests - I thought they are only used for suspected acute HIV and then are followed up by western blot and of course eventual viral load tests and tests to see the strain and drug resistance.
Im sorry you got this virus.
If your insurance is spotty, you might go to an ASO and figure out your best options for meeting the coming sticker shock.

[zach]

Indirect Fluorescent Antibody or just a straight up viral load test (nucleic acid amplification testing, pcr, rna, same thing different names)

why not just ask point blank, what confirmation test was used? and get paper copies for your own records, of every lad you ever get done. get to know that id doc, i mean love em like dearest fam

sorry buddy, you're one of us now, its not that bad though, even when it sucks (and it sucks, don't believe the hype)

just think though, now that you're one of us, jeez, now you get to deal with us. you're in for a treat


edited to correct, lab, not lad... but sure, make a list of all the lads too

[AusShep]

Yeah, the Western Blot isn't required by the CDC anymore, and they've left it open as to what could be used, just needs to be different than the initial test.

You should be able to sign up at https://patient.labcorp.com and get your results online and see what test they used.  Note: for viral load and some other pathology tests you need to open the PDF file, you probably won't see the info on the summary page.

[NotTheOne]

Hello Again All,

I tested positive 28 April 2014. I had my first vital readings with the ID Doctor today. My CD4 Count is 651, and viral load is 40k.

The doctor exclaimed at how good of health I am in just from my readings, and said that I could probably go on for years without any treatment. She prescribed Complera, but told me to only start when I'm ready to adhere.

It was just strange to me because she seemed so relaxed about it and really had no sense of urgency. HIV is serious to me of course, but it was just weird how she had no sense of urgency for treatment.

Any thoughts on this...?

[Jeff G]

Hi Not . Welcome to the forum . I merged your threads so that you can keep all your questions and reply's in one place . It may help to see it all together and how you are prorgressing with getting the information you need   . Thanks .

[vertigo]

When to initiate treatment is the subject of much discussion.  The trend is certainly to begin earlier these days.  For the US, present guidelines are for all HIV+ to be on meds.  This is a strong recommendation if CD4 <500, and a moderate recommendation if CD4 >500.

Even with the recommendations for immediate treatment, many docs would rather their patients be mentally prepared for adherence rather than always insisting on starting meds asap.  Obviously for patients with bad numbers that won't be the case.  But your numbers are fine for now, and very typical for a fairly new but post-acute case.

I do take issue with the suggestion that you can go "for years" without starting, however.  I think there has been a tendency for docs to soft sell the rate of disease progression in order to make HIV less scary for patients.  Only something like 10% of individuals are going to be slow or non-progressors.  Another 10% progress rapidly and will have to start immediately.  The remaining 80% are going to experience a fairly predictable CD4 decline.

So while your numbers don't mandate immediate treatment, I would bet that if you don't start now, within 1-2 years your doc will be recommending that you do so.

[zach]

looks like she gave you a month to wrap you head around the idea and get comfy with a pill bottle laying around the house. what i'd do, if you haven't already, fill the script.... wait two weeks. note the date you begin for your dr. that way, when you refill 30 days after your first bottle, you'll start the game with a two week surplus. then, every month, refill your script 1-3 day early, growing that surplus slowly. whatever they allow for as far as early refill. and you might get lucky and get 90 days stock. depends on your insurance and such

when the day comes (and it will) that for whatever reason you can't refill on time, you'll have at least two weeks to resolve the issue without panic of missed dosage.

she didn't say don't bother. she put the pill in your hand, its up to you to commit to that.

[mecch]

It was just strange to me because she seemed so relaxed about it and really had no sense of urgency. HIV is serious to me of course, but it was just weird how she had no sense of urgency for treatment.

Any thoughts on this...?

What country are you in?
Is this an infectious disease doc?

Opinion is split as to wether one is best off starting at diagnosis, or waiting for some sort of markers in the blood work, or some sort of disagreeable symptom.

Her cool may be her personal style, as well. It may be the way she transmits the message to people diagnosed with HIV, which can be a highly stressful event, that medicine has it under control and dealt with...

[NotTheOne]

What country are you in?
Is this an infectious disease doc?

Opinion is split as to wether one is best off starting at diagnosis, or waiting for some sort of markers in the blood work, or some sort of disagreeable symptom.

Her cool may be her personal style, as well. It may be the way she transmits the message to people diagnosed with HIV, which can be a highly stressful event, that medicine has it under control and dealt with...

I live in The United States. Yes she is an ID doctor. Her delivery was calm, but also seemed routine. I just didn't care much for the relaxed attitude, as if I shouldn't be too concerned about my diagnosis. She went to assure me that there are new medications being developed every day,  even the possibility of 1 shot a month, and that by the time I were to reach her age that there most likely will be a cure.

I necessarily didn't need a pep talk from her.... because I've already come to terms with the fact of my diagnosis in a short period of time, that life happens, it is what it is, and now I have to deal with it. I have my Google PhD in HIV, so it wasn't much she could tell me that I haven't already researched.

I stayed in her office for less than 20 mins. She gave me the prescriptions, and said take it when you're ready...  Since she didn't seem in a rush so, I  plan to start treatment in a bout 2 months, after my next blood work. That should give me enough time to get my finances together, and find some programs to help me pay for the medications because I don't believe my insurance will help much with paying for Complera. Its expensive as sh*t!

...to me it seemed like she pretty much shrugged her shoulders after she saw my vitals. I didn't gain much from the visit, but a prescription and reassurance that I'm in good health for now.

[mecch]

Her attitude and way of doctoring probably helps other people. You didn't need it. 
On the other hand, you didn't get negative vibes - which sadly still exist out there - doctors who aren't very comfortable with HIV+ people and their lives....

Doctors also read patients and their needs.  If you gave off a calm collected informed vibe, she might have responded in kind thinking thats appropriate for you.

[absopozilutely]

Hi Not,
24 y/o male, California. I have kaiser, and complera costed me $25 a month, have you called your insurance company just to ask what cost would be. These medications, which don't have Generics, are name brand, so that's usually with kaiser the price you'll pay. If you have an insurance company other then them I'm not to experienced, but you could get ADAP/RyanWhite assistance if you meet financial qualifications. Otherwise, go to the Gilead website and request a copay assistance card, super easy, and I had mine mailed to a place I could trust. They will cover up to $400 of your prescription cost! Crazy right! Plus the other programs will help. The US has some good programs so just utilize them, and find your local ASO.


Abso!

[NotTheOne]

Thanks so much for the replies...

Being that I'm 26, I started my new health insurance earlier this year. I had no idea that I would be putting it to good use. However, I found out that I have pretty good insurance, and Complera is covered!! I calculated that I would be paying about $120/m or $361 every 3 months with The Gilead co pay card. Totally affordable for me!! I will try some other HIV programs, but I doubt I qualify for them.

I saw my ID doctor again this month. I gave her a set time on when I will start my medication. She again, stressed that there is no rush. I'm in good health and have plenty of time. She also said that once I start, I would probably only have to see her every 6 months, or once a year if she trusts me(which I think she already does). This again is very weird...

I've read countless stories of people taking cocktails of pills, seeing the doctor 6 times a year and other complicated things.
I'm SOO boggled, thrilled, and THANKING GOD at the same time as how convenient and liveable having HIV can possibly be for me. I can continue to live a normal life, stay healthy and remain discreet about my diagnosis.

However, I am worried about the side-effects of Complera once I start, but I've read and was also advised by my doctor that there are little to none. It really seems too good to be true...

[Joe K]

I'm not sure I agree with you starting meds and would like to see your test trends since April.  Your CD4s are decent and your VL at 40k is not exceedingly high.  I would expect your doctor to show you the trends that justify starting meds right now.  I find it hard to believe that an ID doctor would be so cavalier about giving you meds and telling you to start them whenever you feel like it.

Something is not right, IMHO.

Joe

[NotTheOne]

I'm not sure I agree with you starting meds and would like to see your test trends since April.  Your CD4s are decent and your VL at 40k is not exceedingly high.  I would expect your doctor to show you the trends that justify starting meds right now.  I find it hard to believe that an ID doctor would be so cavalier about giving you meds and telling you to start them whenever you feel like it.

Something is not right, IMHO.

Joe

Exactly! I thought that I would have to get my blood drawn a few times to see a trend. I actually would prefer that, just to see how fast the virus is progressing.

I was going to ask my Doctor about it, but being that everybody's case is different, I was thinking that might be their protocol for my situation. I will ask about this during my next appointment.

[Joe K]

The best thing you can do for yourself is to advocate on your behalf.  Your doctor works for you and that means you can ask her to explain her reasoning on starting you on drugs, based on only one set of labs.  I would not start any meds, until I saw a trend that indicated that meds would be beneficial to start at this time.

To me, your doctor seems indifferent to treating each patient as unique and if I were you, I would be looking for a new doctor.  Seriously, you should have a partnership with your doctor and that means open communication and discussing strategies, remembering that yours is the final decision, not hers.

At the very least, I would seek a second opinion.

Joe