Needing some positive energy re: first ID appointment

[Run4urlife]

Hello everyone, this is my first post, so bear with me!

Ok, there is no pun intended with the subject, I really am in need of some good vibes and some reassurance.  I just tested positive and I am reluctant to reveal the circumstances, but it has taken me a long time to do what I have needed to.  I finally came out of denial and got an express home test last week and unfortunately my results were positive.  So I made an appointment with my GP and went in Monday.  No additional testing to confirm, but immediately referred me to ID doctor and I have my first appointment on Friday.  That's all good, but I am having a really tough time.  For the last few months I have agonized over this test since I have not tested regularly.  The last time I was tested was 4 years ago which really worries me.  On top of making poor decisions which have lead to testing positive, I also have made the horrible decision not to tell anyone.  It has only been a week, but i feel like I have known forever.  I have found great comfort and solace in reading through some of these posts and have really appreciated the knowledge and acceptance I have found here.  I just had to get this off my chest to someone somewhere out there!  I do feel a bit better now, but I still feel like I am at the base of an insurmountable hill.  I am generally not all doom and gloom like this, but it has been a rough couple of weeks/months.  I guess if I could have a little bit of input on what to expect on my first appointment with the ID Dr. I would really appreciate it. 

Thanks everyone!

[Run4urlife]

And my apologies for not even getting my first post in the right forum.  I intended this to be in the "Just Tested Poz" Forum.  How do I fix this?  Ahhhh, sorry!

[Ann]

Run,

I moved your thread for you.

The only FDA approved home test is Home Access. The other hiv tests available over the internet are very prone to false positive results.

You really need to have your positive result confirmed with an FDA approved antibody test and if that is also poz, you need to have that result confirmed with a Western Blot.

Until your positive antibody test has been confirmed with a positive Western Blot, you really cannot be considered to have been diagnosed as hiv positive. Please read our Lesson on hiv testing

Good luck with your tests.

Ann

[Run4urlife]

Thanks for moving this so quickly!

I used the HomeAccess Express Test.  That was the only test that was available at CVS besides the standard test.  They e-mailed me the results which I provided to my doctor.  Should I get a confirming test before I see an ID Dr.?

[Ann]

Ah, ok, I gotcha, Home Access has added "Express" to their line.

You may save money by going to a local hiv testing center where they will (or at least should) run a WB if your antibody test returns a positive result. You can find a testing center near you by putting your zip code into the search engine at http://directory.poz.com/

Alternatively, you could ring the ID doctor's office and find out if they will re-test you anyway, regardless of results you've received elsewhere. 

Either way, you will need that WB confirmation.

Good luck, and hang in there.

Ann

[J.R.E.]

Hi,


I would keep the appointment with the ID doctor, and let him take the necessary Western Blot test to confirm. Be as open an honest with the ID doctor as you can, it will be to your benefit.


If there is someone that you have confided in and trust,  bring that person with you, to your appointment this friday.  Let us know how the things go on Friday.


Good luck -=---Ray

[J.R.E.]

As Ann stated,  If money is an issue, Then Go to Health Dept, or go back to the GP in  and be tested there. What ever you are comfortable with. But it needs to be confirmed.


Good luck---Ray

[Moffie65]

  I just had to get this off my chest to someone somewhere out there!  I do feel a bit better now, but I still feel like I am at the base of an insurmountable hill.  I am generally not all doom and gloom like this, but it has been a rough couple of weeks/months.  I guess if I could have a little bit of input on what to expect on my first appointment with the ID Dr. I would really appreciate it. 

Take a peek at my avvy.  27 years.  You got a lot of hills to climb yet, and HIV is probably not the most insurmountable, or daunting.  You still have a lot of years to do just about anything you want.  I know I have, and enjoyed most of those years.

As far as the doctor is concerned, ask all the questions you can think of and write them down so you won't forget them, before the appointment, and take notes.  A journal of some kind, whether paper or electronic, is a good way to keep things straight for the first couple of months.  You can learn just about all you need to know right here on this site, so use it, and ask questions when you don't understand the answer.  Other than that, ID doctors are usually pretty good folks, or they woldn't choose this field.  That isn't always true of course, but my experience has been pretty good with them. 

[BrotherDavid]

Hi Run4urlife,

Its a stressful time, but it is what it is. It ain't gonna go away if its there. Go to you're ID doctor and get the bloodwork both as confirmation as well as VL and CD4s. Then worse case you have a baseline, best case you is you are not HIV. You're doc should do a whole STD panel anyway

Just my opinion, have a great day. David

[Run4urlife]

Thanks to all of you for your input!  I went to the appointment today and feel comfortable with the doctor.  Just still reeling from everything.  They should have some results for me on Tuesday which I  am very anxiously awaiting.  I will post when I get them.

Thanks again!

[J.R.E.]

Thanks to all of you for your input!  I went to the appointment today and feel comfortable with the doctor. 

Thanks again!

Glad to hear that !! When you have a doctor you comfortable with, it makes things a lot easier.  Let us know about those results.


Take care, and try not to stress.  One day at a time.

Ray

[Run4urlife]

Ok, so I got numbers today.  CD4=283 and VL=44,000 and no other STD's.  I would be interested in any input any of you might offer.  It is good to know where I stand and I have a follow-up appointment next Friday unless the doctor decides to see me sooner once he has reviewed the results. 

By the way i have told three close family members as well as two of my best friends and have been received with nothing but love and support which I never should have doubted.  This has been a HUGE relief for me.  I am so lucky to have such amazing people in my life and know that their love and support is going to be a huge part of moving forward.  So today that is what I am doing, moving forward.

Thanks to all of you who have offered encouragement, I can't tell you how much I appreciate it!

[Hellraiser]

With those numbers did the doctor suggest beginning HAART?  You're basically right on the precipice of wanting to get on it very soon.

[kev72]

Great news Run4urlife. It sounds like everything is working well for you. It is great that you're friends and family are supportive. That makes a world of difference.

Did you're Dr suggest Bactrim as a precaution due to you're CD4? Mine did not either until I read about it on here and called him. He said "Oh wow, yes you should" so he called in a prescription. I think he forgot which is why I mention it here.

It sounds like you will be starting a regimen next week. I am not sure where you are located, but I am in CNJ and my doctor told me that there is a great clinical trial going on for people who have not been on meds before. It is with Atripla and adding a 4th drug.

I decided not to do it because it required waiting a few weeks and I was concerned about waiting, but it may be something you could check into. I believe the Atripla is supplied for free if I recall what my Dr told me.

Good luck with whatever you decide. Keep us posted. Kev

[Run4urlife]

I only spoke with the nurse today and there were no prescriptions.  She also said that they were waiting for the rest of the tests, phenotype/genotype, etc.  She was very positive and said to just plan on my appointment scheduled for next Friday, unless the doctor wants to see me sooner once those results are back.  This is all still so new, does this seem strange?

[Hellraiser]

Not at all I forgot about the genotyping/phenotyping.  Essentially if he had prescribed medication your virus might already be resistant to it and it wouldn't work anyway.  I also don't see my doctor when I get my blood drawn, but I do every time I get results so in my mind you had seen the doctor.  Your numbers are not terrible by any means so things should continue as normal for you.

[kev72]

I do not think the nurses reaction is strange at all. I was also delayed a couple of weeks before starting meds while they did the genotype tests. I was all worried, but the doctor assured me I would not get any worse in that short of time.

My doctor gave me a choice of meds I could take, but he and I thought the one pill a day regimen was easiest. It really was pretty simple to start.

I only mentioned the Bactrim because my doctor forgot to put me on it until I read about it on here and suggested it as a precaution for PCP. I don't know if a CD4 of 283 merits it since it is not so bad.
I am just a worrier... Good luck keep us posted.

[Hellraiser]

It does not.  A CD4 below 200 is the benchmark for an AIDS diagnosis and is when you should use Bactrim and Azithromycin as prophylaxis for PCP and CMV.

[Run4urlife]

Worrier?  Um, that would be me!!!  I have been wringing myself out over this the last couple of weeks and the waiting has been really tough.  All I have to read is CMV and I am off the charts anxety-wise and I have to get this under control.  I am getting my eyes checked on Friday morning just since I haven't in years and have had really tired eyes and have noticed floaters.  Other than that my vision is fine, no flashes or other symptoms, but that is one thing I am not messing with and probably way too freaked out for my own good at the same time.

Anyway, thanks, you guys for the input! Grateful as always!

[kev72]

Hello Run4urlife,

Funny you mention CMV. I just got back from the doctor this morning and we discussed this. My vision had deteriorated rather quickly over a period of a few months and I was very worried about CMV since my CD4 was extremely low. My doctor tested me for CMV and it came back negative. I think my vision issue has to do with turning 40. Of course because I am a worrier, HIV is the worst thing I can have because every time I get even a pimple for god sakes I freak. God forbid I got a cold, I would probably think it was the end LOL.

You will be fine. If you start meds, I suspect like me many of the symptoms you may be having will go away including the anxiety and worry. I feel very well overall. My doctor feels based on my success with the Atripla in just three weeks, by my next set of labs in 3 months I should be undetectable and my CD4s should shoot up. He said the new meds are amazing.

Try not to stress, you are far from having any problems. Keep us posted, Kev

[J.R.E.]

By the way i have told three close family members as well as two of my best friends and have been received with nothing but love and support which I never should have doubted.  This has been a HUGE relief for me.  I am so lucky to have such amazing people in my life and know that their love and support is going to be a huge part of moving forward.  So today that is what I am doing, moving forward.

This is also great news!!  I'm glad you took that step.   It sounds as though your in good hands with the support your receiving, and the care that your getting.  Keep us updated.



Ray

[Run4urlife]

So I went back for a follow up appointment yesterday and am feeling stuck.  The doctor said that my test for the phenotype/genotype was "missing" so they had to draw blood again.  He also wanted to run the test for CD4/VL again to make sure a second set correlates with the first set of numbers.  Then based on the results of those two tests they will get me started on a course of treatment meaning they will call in a prescription for me (?).  Then my next appointment is in 4 weeks.

Does this seem odd to anyone?  Again the numbers were CD4 283/VL 44000.  I forgot to ask when the nurse called with the initial results, but found out yesterday that my CD4% is 15% which from what i understand is low.  I asked the doctor if there is anything I need to be concerned about, or precautions I need to take and he said that I should not have anything to worry about and that the headaches, the ringing in my ears, trouble sleeping and all the aches and stuff I have been experiencing are probably anxiety related. Hmmm...

Anyway, I didn't feel as comfortable with the doctor this time as I did the last time.  It just felt very routine, his phone kept ringing in his pocket and his demeanor seemed different, I felt like just another patient.  Even the nurse seemed different this time.  Perhaps it's just me.

So in the meantime, I guess I'm back to waiting and trusting that I am in good hands.  Did anyone else feel like this?

[Hellraiser]

Yes.  I was actually aware that my CD4 was at 15 and I had a VL of 700k and due to the incompetency of the guy handling my ADAP and some miscommunication between him and me about where he should reach me it took me another month and a half before I was able to get on meds.  The entire month and a half wait every single pain and ache to me was the beginning of the end, but I'm still here and my numbers are still going in the right direction.  So, though I know it's difficult right now, the best thing you can do is relax and be patient.  Your numbers are not scary bad.  They're not fantastic, but you're not even to the level of a clinical AIDS diagnosis yet.  Just take a deep breath, go take a bubble bath, and realize that you're making this so much harder on yourself.

[Run4urlife]

Hellraiser,

Ok, thanks for the "smack-in-the-face-get-ahold-of-yourself-man!!!"  That's totally what I needed and yes, i do realize I am not doing myself any favors here wasting all this energy!  Time for a little meditation, it would seem.

Thanks again!