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Author Topic: Newly diagnosed and no sense of urgency from dr.  (Read 12979 times)

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Offline Irish Eyes

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Newly diagnosed and no sense of urgency from dr.
« on: January 07, 2014, 03:33:27 AM »
Some backgroundand how I arrived at finding out my status.
(Shouldn't take too long)
Age 40, single male, with 6 siblings, engrossed in my business and celibate for perhaps 5 yrs. level headed, a realist and don't particularly have time or sympathy for whiners. You make your bed, you sleep in it.

Mid 2011 I must have slept crooked and pulled a muscle or something and was unable to bend my left leg at hip.
After 2 weeks of hobbling about, I went to chiropractor who fixed it in 30 mins.
He suggested join gym and get massages (eek!! to both).
I don't have time to scratch never mind add to my schedule.

Two months or so later I built up the courage to join a gym, now I'm committed.

I wouldn't say that I became typical gym-bunnie, though I 'did' look good, I wasn't afraid to take my shirt off, (you know the type, Euro, tall, dark, So. Cal tan, blue eyes) but I would go at least twice a week at 2am.

Sitting in the sauna with 4 others, during conversation I mentioned the above (muscle issue and chiropractor and massage) to one of the regulars, and another fella highly recommended a masseur. To be cordial I took the number and filed it away as I built up the courage for my 1st. massage, which took place July. 2013, with more appointments to follow.

You know what happened, me anxious, nude on table in hot muscled ex-mil. home, my celibacy, blah blah blah………I'm not going to lie, I was just a little apprehensive but it was incredible

So 18th Dec. I went to a GP (my first time at a doctors, ever) in Palm Springs, with the understanding that I had loss of appetite, strep throat and an over active thyroid (as self diagnosed by my non-medical family members, apparently it runs in the family and a parent had it 15 yrs ago).
The furthest thing from my mind was HIV.

He poked and prodded and listened and decided to do blood tests which I was fine with as I assumed he needed to know blood situ prior to prescribing dosage to balance thyroid. Then he enquired about doing a hiv test. Sure I'm here now might as well get the full story.

Now it's close to Christmas, 23rd. Dec. I called GP for results and was advised they were waiting for one final result to come back.
Now I'm thinking they're stalling as GP is perhaps in Vail for the week, skiing on Christmas vaca.
Can he not diagnose on what info he already has, the final result is prob to confirm ingrown toenail or yes your hair is slowly turning gray. Come on now!
Later the same day I got a call for an appointment on 26th. Dec.

Praise be.

I arrived 1/2 hr. early, lets get this over with. I sat alone in his office for about 20mins (on hindsight he was prob building up his courage to break the news).
I'm thinking he's double-checking his diagnoses and med dosage and break the unfortunate news that I'd probably be on thyriod meds for ever.

I'v already accepted I now have this damn over active thyroid which will involve blood tests every couple of months and adjusting medication accordingly.

In he came, shuffled his papers, looked very coy, blabbed a bit and finally broke the news, you're HIV+ and recommended going to Desert Aids Project.
He was genuinely concerned and prodded asking convoluted questions about how close am I to family, do I have close friends to confide in, but he was leading up to the fact that I wasn't going to leave office and commit suicide in the near future.

Merry Christmas one and all.

My next stop on way home was DAP to see what is the timeframe to see someone, and their response was in the New Year.
Oh great another week to wait.
Finally today Jan. 6th. I had my meeting at DAP, where I practically signed my life away and expected to get blood drawn to get viral load etc. etc. Get the ball rolling.
Dream on.
Oh case manager will call later in the week to set up appointment. Oh just another week, great.

I realize it's only two weeks or so since diagnoses but whats going on inside my
little temple of a bod?

Right now I'm no further along, none the wiser, about 20lbs lighter, and waiting in anticipation for the phone to ring.

N.B. The day after confirming my status, I'v advised the masseur, who since got tested and is totally beside himself with guilt and fear etc. etc. but I'v accepted the situ and blame only myself. (I made the bed and now who has got to sleep in it, ME, forever).
I'm certain we'll become close friends.

As for telling my large Irish Catholic family, that ain't going to happen.
Never before has over active thyroid been a pleasure to have, and I'm sticking to that story… LOVE YOU ALL, BE GOOD.




10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Ann

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #1 on: January 07, 2014, 05:29:39 AM »
Hi Irish, welcome to the forums.

Unless that massage you talk about is a euphemism for unprotected anal intercourse, then you didn't get your hiv there. It's totally possible you were positive before your five years of celibacy and just didn't know it.

What's important now is that you know now.

The time you're waiting between appointments isn't unusual. It takes up to two weeks for viral load tests to return, and there's no point in having an appointment before you and your doctor have all the relevant information in front of you.

In fact, your CD4 results would come back sooner than the VL, and in this case, no news would be good news.

In other words, if your CD4 is high, there really is no rush and there's every reason to wait until the other results are in. If your CD4 is dangerously low, any doctor/clinic will get in touch sooner. So yeah, no news is good news for you right now. Believe it or not.

I understand that it's difficult to play the waiting game, but it is what it is.

Trust me, things do get better.

Hang in there, ok? And keep us posted.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Irish Eyes

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Slim odds for top to contract hiv
« Reply #2 on: January 09, 2014, 02:28:22 AM »
Is this possible?
I'm newly diagnosed and trying to educate myself while waiting to get VL and associated blood results.
According to Ann (admin) in a reply to "I have hiv signs, worried" posted 1/7/14 10.59pm, in 13 years responding to posts she has never had a report of the insertive partner contracting hiv.
I find that hard to believe, but remember I'm educating myself.

Thank you in anticipation of your response Ann.
But go easy on me, don't be too harsh.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Ann

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #3 on: January 09, 2014, 06:02:44 AM »
Irish, I moved your above post out of the Am I Infected? forum where you originally posted it and put it here with your thread in Just Tested as it is the more appropriate place for you to post. Posters in the Am I Infected? forum are only permitted three free posts before they have to take out a subscription, so you would not have been able to respond again while in that forum.




According to Ann (admin) in a reply to "I have hiv signs, worried" posted 1/7/14 10.59pm, in 13 years responding to posts she has never had a report of the insertive partner contracting hiv.


You're misquoting me. What I've said in the Am I Infected? forum is that I've yet to see the insertive partner end up hiv positive following a condom break.

I'm strictly talking about my experience in that specific forum. Not one single insertive partner who posted there following a condom break has gone on to test positive in over twelve years (nearly 13) of my answering questions there.

I have known plenty of insertive partners (ie tops) who ended up hiv positive when barebacking - my own partner is one. People usually notice when a condom breaks and that means the unprotected portion of the act ends up being very brief. Big difference to never using condoms, or only using them some of the time.

Hiv is more difficult - but NOT impossible - to transmit to the insertive partner.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #4 on: January 17, 2014, 02:10:25 AM »
As of now, I have only had positive result from general practioner, three weeks ago. I 'enrolled' at Desert Aids Project and am still waiting to see their doctor to get blood drawn for CV4 and VL.
Perhaps I should go private…….
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #5 on: January 21, 2014, 08:52:21 PM »
**UPDATE**
Today I received confirmation for appt to see an ID doctor (I assume) in Palm Springs. Feb. 19th.
Just another 4 weeks away.
That will make it a total of 53 days from getting General Practioner diagnosis to hopefully seeing ID.
I'm going private, in San Diego.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline pittman

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #6 on: January 22, 2014, 12:06:53 AM »
I had to wait about a month after diagnoses before I could be seen by the HIV specialists. It was frustrating and stressful imagining what was going on, etc., so I can relate to how you feel about waiting.

It sounds like you think infection was no earlier than July 2013.  If true, you are still relatively early in your infection and catching it early, even with the wait.  At this point  your still probably in for multiple tests to determine progression, so more patience will be required. They tend to look for a couple of test results spaced out to get a trend and more accurate view of progression.  They should also test for resistance, in order to select the best drug combination.

You will probably be at a decision point after the tests. Depending on the doctor, they may offer treatment, as early treatment is a new normal. Or, they may defer that until your numbers start to decline. You will ultimately have to decide which path to take, considering your immediate health, and your readiness to commit to taking a pill every day.

They will probably offer vaccines for hepatitis, tetanus, pneumonia, and so forth. There will be a lot thrown at you at once, but you will probably get the best care do the closest monitoring of your life up to this point.

 One thing else I will point out, in the earlier stages, one tends to be at their most infectious due to a high viral load. For your normal everyday type activities, that really won't matter at all. In sexual situations, taking care and precautions is especially important.  I realize based on your situation that may be the furtherest thing from your mind at this point emotionally.  However, that is really the other key thing to know in this earlier stage before treatment.

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #7 on: January 22, 2014, 04:37:28 AM »
I really appreciate the time you took to reply.
Your response was not only comforting but concise, on point and understandable.

Of the several Doctors (GP), councillors etc that I have spoken to and mentioned that should there not be more of a sense of urgency, and i would just get a shoulder shrug.

Perhaps it was my sense of demeanor as I wasn't freaking out, just trying to get the ball rolling.

Thanks.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Ann

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #8 on: January 22, 2014, 08:25:07 AM »
Irish, Pittman gave you some good advice. One thing I would add is to repeat what I said a week or so ago... no news is good news. If your CD4s were dangerously low or other problems were flagged in your lab results, they'd get you in ASAP. Labs are generally reviewed as they come back from the lab and put into the relevant files - to do otherwise would leave them open to negligence lawsuits.

Believe me, I'm not being dismissive, I'm just telling you like it is - and I'm telling you this through experience. I live on a Rock in the middle of the Irish Sea (google Isle of Man) and I fly over to Liverpool for my hiv care. (Yes, my arms get tired, but it's better than swimming. [boom-tish!!!])

My blood gets drawn at the end of every clinic appointment - and I do not get those results until I go again in three or four months time. I've been doing this since 2001, and I've had to develop a lot of patience.

I've also had to develop trust in my clinic that they will get in touch ASAP if any red flags turn up in my lab work, and they have on occasion. It's happened more frequently with my partner (same clinic) - they have gotten back in touch with him two or three days after an appointment/blood-draw saying they want him back the next day, even if that next day is a Sunday. When they've had occasion to call me about my lab work, it's usually been something I can take up with my local GP.

Sooo.... try to not interpret those shrugging shoulders as apathy or that they don't care, interpret it as your case not being an emergency situation. That's a good thing.

You would be wise to use this time until your appointment to study our Lessons pages, particularly the ones about treatments. Use the forum's Search Engine to find out people's experience with the various drug combos available, and have a read about them in our Treatments pages.

And of course, come back into the forums to ask any questions that arise during your reading.

The more knowledgeable you are when you finally get to that first real appointment, the more you'll get out of your time with the doctor. I would also suggest that you get yourself a small notebook where you can write down any questions you may have for the doctor, no matter how trivial the questions might seem. Leave some space after every question to write a brief reminder of the answer. It's amazingly easy to forget what was said (or what you wanted to ask) when you're sitting face-to-face with the doctor. I still use my notebook after all these years.

Good luck, and hang in there. Keep yourself busy, learn all you can, and your appointment will be here before you know it. I do know very well how hard the waiting game is (and believe me, I feel for you), but you can do it and keeping busy will help. Learning all you can in the meantime will allow you to feel like something IS being done. The patient-doctor relationship is very important, and a big part of your end of that relationship is gaining knowledge, so get busy reading. :)

Ann

PS - if you extend your learning sessions outside of the info pages on this website, make sure what you're reading is no older than five years or so. There's a lot of outdated hiv info out there that no longer applies and you can scare yourself silly if you're not careful. Don't do that to yourself!
« Last Edit: January 22, 2014, 08:27:19 AM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #9 on: January 22, 2014, 11:29:28 PM »
Thanks for your response.
(Love Douglas, visited several times from Co. Down)
My GP did blood tests under the assumption I had overactive thyroid, plus hiv test.
My wait is to see ID doctor and have blood drawn to get VL and CD4 numbers.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #10 on: January 23, 2014, 05:34:47 AM »
Thanks for your response.
(Love Douglas, visited several times from Co. Down)
My GP did blood tests under the assumption I had overactive thyroid, plus hiv test.
My wait is to see ID doctor and have blood drawn to get VL and CD4 numbers.

Were you there for the TT by chance? Anyway, Peel is the place to be! ;D



I'm sorry, I didn't realise that you hadn't even had the blood draw to get your basic numbers. I agree, that's not right - how frustrating!

Your appointment is Feb 19th, and it would likely be another week or even two before they have all the test results back. It's the VL that can take time, because they run them in batches. You might get lucky and your vial is one that makes up the current batch and gets run that day, or it might be the first one in the new queue.

By the way, did your GP confirm your positive antibody results with a Western Blot? Forgive me if you've already said and I missed it.

I would suggest that you go back to your GP (assuming you can get an appointment quicker there) and have him run a CD4 (and double-check that he ran a Western Blot to confirm the antibody result - this is important!). The CD4 test isn't a specialist test, any lab can do it. CD4s are just a subset of white blood cells. They should have those results back in just a few days. If you can get a phone consultation with him he may be able to order the tests right then and there, so you could cut to the chase and only have to go in for the blood draw.

If your GP doesn't know how to interpret CD4s, you can come back here and let us know what they are. Your GP should also be able to forward your results to your ID doc.

Hang in there, ok?

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline xinyuan

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  • Posts: 186
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #11 on: January 23, 2014, 08:05:08 PM »
Irish Eyes,

I did understand that basic labs (CD4 and VL) hadn't even been drawn in your case. When I PM'ed you before.

That's not acceptable. You should get those labs drawn soon. At the very least to make sure the VL isn't in the millions and the CD4 <200 (opportunistic infection range).

If that is the case and as Ann said, they should notify you urgently.

Hoping you get things rolling.

Offline Ann

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #12 on: January 24, 2014, 06:17:58 AM »

At the very least to make sure the VL isn't in the millions and the CD4 <200 (opportunistic infection range).


As with anyone who is not on meds, the CD4 is the more important number. This is why I suggested he gets his GP to order a CD4 test. He can get his CD4 results back much more quickly than he can get his VL results back.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #13 on: January 31, 2014, 03:08:22 AM »
Finally got Covered California mix up sorted.
Registered at UCSD Owens Center today (30th. Jan) and got blood drawn (11 vials) including CD4.
Get to see case manager followed immediately by ID on Feb. 3rd.
NB Three days from registering to seeing ID as opposed to abt 7 weeks with Desert Aids Project in Palm Springs. Love Palm Springs but there is a limit.

Ann my GP had the Western Blot done and i recieved results of it on 26th Dec., which started me on this journey.

As for the TT races, never went. There was a seasonal ferry from Warrenpoint to Stanley and we visited when we were kids….
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline pittman

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #14 on: January 31, 2014, 11:04:40 PM »
Getting started has to be a relief. Let us know how your numbers are when you get them.

Offline Irish Eyes

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Please explain progression from exposure to starting meds.
« Reply #15 on: February 01, 2014, 10:16:40 PM »
My progression:

Exposure             5th. Nov 2013
Weight loss (20lbs.), aches and pains, loss of appetite, lethargy, strep throat, blurred vision. Self-diagnosed as hyperthyroid.

Sero conversion    8 weeks approx. Thanksgiving to mid Jan.
I'm assuming above symptoms reflect my sero conversion.

1st. Dr appt. (GP)  18th. Dec. 2013
Under the assumption of having hyperthyroid and strep.
Dr. drew blood including HIV test.

2nd. Dr. Appt.      26th. Dec. 2013
Results, no mention of strep, hyperthyroid, but HIV positive.
No mention of starting PEP (perhaps too late)
Refered to Desert Aids Project.

Made appt. @ DAP  on 30th. Dec. 2013 scheduled for 6th. Jan 2014
Hopefully to see Infectious Disease Dr. (ID) and get blood drawn for CD4/VL

Register @ DAP    6 Jan. 2013   met with "intake" person only to be scheduled with case manager 8th. Jan. and then hopefully see ID on same day. Case manager appointment lasted all of 10 mins. and would be contacted with appt. time to see ID.
ID Dr. appt scheduled Feb. 19th. (8 weeks since initial blood results)
Cancelled appt. @ DAP.

Registered UCSD Owens Clinic Wed. 29th. Jan., had blood drawn same day and see ID on Monday 3rd.Jan. Slightly more efficient with their scheduling.

Today Feb. 1st. 2014 did OraQuik result showed negative.

Current health, good mood, feeling fine 'normal' for about a month though still poor appetite leading to slow weight gain, 6lbs added in 6 weeks.

Baffled…...



 
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline pittman

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Re: Please explain progression from exposure to starting meds.
« Reply #16 on: February 01, 2014, 11:40:42 PM »
You said previously that you had a western blot done. Assuming that was positive, then that is more definitive than the oral test. It is "the standard" for confirmation.

In this post you say that you were exposed in November and seroconverted since then. That is much more recently that you previously thought, July being your first assumption. If in fact the exposure was more recent, then you are still early enough that some of the results may be false negatives. You are at the statistical extremes for that, but it is still (remotely) possible to test negative as long as 6 months after exposure.  Keep in mind that the tests are looking for HIV antibodies, not the virus itself. Your body takes time to produce those. Your viral load tests and a second western blot would be standard, and your doctor should share those results as soon at they come back. 

PEP as you mentioned would be for the first 72 hours. After that, it is not effective.

I'm sorry that you have the confusion and uncertainty to deal with. It does happen.

My own experience was not entirely smooth either.

When I was tested, I first went to the county health department.  It was crowded, and the receptionist was overworked, sour, rude, unhelpful and condescending. I had a full battery of tests, and got all but the HIV test shortly after when I called back. The receptionist actually yelled at me for taking too long to call back, and then told me the person I had to speak with was not available. The whole experience was so off putting I just disengaged.   They then started calling me the next month. Vague, non-alarming messages were left, which I attributed to my prior calls getting lost in their bureaucracy.  I ignored them.

After a few more calls, I then began to wonder! but I was in no certain terms going back to them. I went to a local AIDS organization to get retested, by a very kind soul who worked there. After a few days, I went back for my results, and much to my relief I was told I was negative. (whew!) I continued to ignore the county.

Come one week later, I got a message from same said kind soul, asking me to stop by. Puzzled, I went back after a few days, and he told me that he had messed up. Turns out that he never looked at my actual results, but rather just looked to see if he had any positive test results for my test day (none) and based on that told me I was good. Seems that my results did not come back with the others, as they were running confirmatory tests on my positive result. He got my actual results a few days later than normal.

I then had to find a doctor, so I called the local HIV specialty clinic that had a good reputation. They couldn't see me for over 60 days. At that point I was really an emotional mess, and all I knew about HIV treatment and prognoses was years outdated, in a rapidly progressing field. When the guy that tested me followed up with me and found out about the wait, he called them and somehow got me in in about 20 days. 

My first visit was a whirlwind of tests, people, social workers and others I probably forgot about. I was given immunizations on my first visit just in case and they took unseemly amounts of blood vials for tests.  I had to return over the next few months several times until they figured out my numbers on a trend to avoid anomalous individual test results. 

It was part of a teaching hospital, and the rounds of young (and sometimes obviously nervous) doctors did nothing to reassure me, especially when they would all ask the same questions. I finally asked if they read any of the notes they took, or if this would be starting over each time because they were not inspiring confidence in the care I was receiving.  (OK, maybe I was the one making them nervous' but I promise that I really am a nice and happy guy at my core- just not at that moment.)

Fortunately my primary physician was both very grounded in science and rational explanations as well as extremely kind and human. 

At the time I was ready to bolt, and if it was not for the particularly kind (and gentle) treatment that the nurses and doctors provided, I am not sure I would have lasted in treatment there.

Years later, the visits are now routine, and my doctor has my confidence and respect.  He spends as much time as I need/want when he sees me. He consults for how to prep for international travel, making sure I have the right immunizations and so forth. (Oh and what beers to try when visiting his native country of Holland.)

So, I just share so that you know that you are not alone in what you are going through, and that things will eventually settle down and become much less disruptive, and much less the focus of your life.

Offline Irish Eyes

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Re: Please explain progression from exposure to starting meds.
« Reply #17 on: February 02, 2014, 01:43:35 AM »
You're just a mine of info. (and member recollections)
Referring to July, I apologize, I mixed up my dates. Actual dates are, met in July, several non-sexual encounters in Sept., then two bb on 28th Oct. and 5th. Nov. with me being the receptive partner.
Thanks for explanation and enlightenment.
D.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline wolfter

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Re: Please explain progression from exposure to starting meds.
« Reply #18 on: February 02, 2014, 05:21:24 AM »
There is too much here that does not compute.  why have oral tests after a positive Western Blot? 

I'm skeptical here as I read through all your posts and I have a difficult time believing your recent diagnosis would still allow to participate in anything other than being recently diagnosed. 

I apologize if my BS detector isn't working correctly today after dealing with so MANY who have agonized after finding out their recent diagnosis.  Most wouldn't have the strength to care about such things as AMG. 

If a hammer is needed for my post, I hope it's a soft mallet as I have weak bones.  :)
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline pittman

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Re: Please explain progression from exposure to starting meds.
« Reply #19 on: February 02, 2014, 07:51:01 AM »
There is too much here that does not compute.  why have oral tests after a positive Western Blot? 

I had the same question, but when I read back through Irish Eyes' posts, I got the feeling he did his own OraQuick, or went to some other screening organization who didn't know he already had the western blot.   My partner does his own at home for example.  Yes, it does not make "sense" to bother doing one after a positive western blot, but when anxious and not yet able to see the doctor, I can understand wanting to "just make sure". If he had still said the only exposure was July, and had a negative oral test 6 months later, that would indeed be stretching credibility. A 2.5 month timeframe from exposure still puts him in the window before he may test positive, though most who are positive would show up on an oral test by now as they are highly sensitive.

Sounds like it will be clear one way or another with the (doctor's) tests ongoing now. As he said he had a doctor's office do the initial test and said it included the western blot, the most likely assumption is that he is really positive.

Offline Ann

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Re: Please explain progression from exposure to starting meds.
« Reply #20 on: February 02, 2014, 08:04:16 AM »

If in fact the exposure was more recent, then you are still early enough that some of the results may be false negatives. You are at the statistical extremes for that, but it is still (remotely) possible to test negative as long as 6 months after exposure[/n].  Keep in mind that the tests are looking for HIV antibodies, not the virus itself. Your body takes time to produce those. [n]Your viral load tests and a second western blot would be standard[/n], and your doctor should share those results as soon at they come back. 


Two things wrong with the above quote.

One, with the tests in use today, most people will test positive by six WEEKS, not months. The window period for conclusive hiv testing has been three months for years now. I had to challenge this incorrect information because a lot of our members from the Am I Infected forum read this section and I'm not having them start insisting that someone said they might have had a false negative at three months because they read your bad information. They do this type of stuff with tiring regularity.

Two, a VL test should not normally be run until there has been a positive antibody test result confirmed with a positive Western Blot test result. Only one WB test is necessary, although in the case of a rapid test, and sometimes also in the case of a positive on a blood test, a second blood draw is taken to use for both another antibody test and a WB test. However, far too many GPs have no idea of proper hiv testing protocol and therefore screw things up.


 A 2.5 month timeframe from exposure still puts him in the window before he may test positive, though most who are positive would show up on an oral test by now as they are highly sensitive.


He said his last incident of unprotected intercourse was November 5th, which means his twelve week point was this past Tuesday, and he tested with the in-home test yesterday. Twelve weeks is conclusive for a negative result. His test at his GP's office (Dec 18) was one day shy of the six week point.



Irish, while the in-home oraquick test kits are slightly more prone to false negatives for a few weeks after the six week point than the other types of rapid tests, they ARE reliable at twelve weeks. If your last incident of unprotected anal or vaginal intercourse was November 5th, then the negative result you received yesterday is quite likely to be correct.

It wouldn't surprise me if your doctor is not completely informed about hiv testing protocol and that a WB test wasn't actually run. Something isn't right, that's for certain. False positive results can happen for several reasons and you wouldn't be the first member here to have had a false positive result, which their GP didn't adequately screen for and rule out. I despair at the lack of knowledge possessed by many GPs who will test for hiv regardless, and sometimes to the patient's detriment.

I have merged your new thread into your original thread and until you get to the bottom of what is going on, and I'm going to request that you only post in this thread for now. Until you have been 100% for sure diagnosed as hiv positive, you cannot be considered to be hiv positive and that restricts where you may post.

To be clear, please do NOT post outside this thread until you have a definite answer - hiv positive or hiv negative. Thank you for your cooperation in this regard.

Ann
« Last Edit: February 02, 2014, 08:38:16 AM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline YellowFever

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #21 on: February 02, 2014, 08:06:34 AM »
Unless that massage you talk about is a euphemism for unprotected anal intercourse, then you didn't get your hiv there. It's totally possible you were positive before your five years of celibacy and just didn't know it.

Maybe it's the sauna. Could have contracted it by sitting on wood...

Testing positive for HIV isn't a life-threatening condition, having AIDS is. So wipe the image of sickly patients being rushed into the ER, it's a chronic illness just like any other.
08/2010 HIV- 08/2012 HIV+
10/2012 CD4 415(15%)
04/2013 CD4 457(15%)
10/2013 CD4 520 (20%) VL 650 (wtf?)
02/2014 CD4 410(20%) VL 390 (yay!)
08/2014 CD4 580(?%)

Offline pittman

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #22 on: February 02, 2014, 09:21:27 AM »
Ann,

I recognize the danger/angst these things create and do try to keep to the facts as best I can, so in addition to my own experience from about 5ish years ago, I looked at some OraQuick specific info found here which is recent:

http://www.fda.gov/BiologicsBloodVaccines/BloodBloodProducts/ApprovedProducts/PremarketApprovalsPMAs/ucm311895.htm

I am aware that most who are infected will test positive within several weeks, and as that time frame grows, it becomes statistically improbable to get inaccurate results.

The published guide for the test also found on the site does speak to false negatives, and provides a 3 month window recommendation.  It then does state there is a 92% false negative rate while (unhelpfully) failing to speak to how that drops the further you are from the time since exposure.  Last I read about it, at 3 months, it was about a 99.x% confidence rate that at 3 months it shows positive for a positive individual, that is, avoiding a false negative. (Hence my comment that it was at the statistical extremes, though multiple that across a population and you may be surprised.) The rate of false positives is even significantly less than that.

The second western blot I am referring to would be when a newly diagnosed patient goes to an HIV specific clinic, they (certainly mine) will generally do a confirmatory test including western blot. That is for the very reasons you observe that GPs are not always doing what they should, and they want to confirm.  My office will also generally go ahead and run many of the other tests, as it is less stressful to get as much done as possible, and not because the viral load test is a means for confirmation.

I realize it is a difficult balance when sharing information with those testing or who are newly diagnosed. To be really detailed can overwhelm and to over simplify can also be problematic.  You clearly have more experience doing that online and it would seem otherwise, so I defer to your wisdom in the best way to communicate with the right balance, though I did want to clarify that was wasn't really just making stuff up, and even tried to keep my info current based on the specific test mentioned.

For Irish Eyes, there are quite a few things to work out, but as he said, he is now getting a battery of tests at the HIV clinic, one of which is most likely a confirmation if they are anything like my own clinic.  He, and hopefully we, will know soon enough.

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #23 on: February 02, 2014, 04:03:15 PM »
Wolfter,
Absolutly no BS from me, but it's all very confusing, and realize everything on the web ought to be taken with a pinch of salt as i attempt to educate myself, but there will always be doubts and questions, however frivolous, from those newly diagnosed.
When I was diagnosed positive by GP with WB test result was given on 26th. Dec. it had been just over 7 weeks (51 days) since last exposure. (though blood draw was on 18th. Dec.)
Even with my ailments, I read from the posts that it was perhaps too soon to test, (window period and false/positives etc.).

Even though I feel well other than a little lethargy and not 'freaking' out abt situ.
the reason for OraQuik test was based not on timeframes but conversations getting the cogs turning in my head and exercising my options.

As mentioned in my very first post, I'm a realist and accepted the dx immediately, hense not "agonizing about diagnosis" and "having the strength to care about AMG" (as mentioned in your post today).
I am certain I am fully capable to provide input (whether positive and/or negative) with reference to AMG, perhaps even though your opinon is appreciated, you ought to give your BS detector a break.
"dealing with so MANY who have agonized after finding out their recent diagnosis".  Oh Please!!!
It's without a doubt exhausting you. Take a well deserved break and recharge that detector. (looking forward to your response)
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #24 on: February 03, 2014, 07:37:53 PM »
Attended dr appointment today @ UCSD Owens Center.
Not all blood results in, but VL 257000.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline pittman

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #25 on: February 03, 2014, 10:30:07 PM »
A high viral load is typical earlier in the infection.  Nothing unusual so far.  As you get the rest of your labs back and then a follow up or two you will have a better picture of your current state.

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #26 on: February 04, 2014, 04:34:15 AM »
I did ask dr/da today if my VL number could 'date' infection to which he answered yes and no, as its the CD4 number along with VL which can give approx date but def not exacting.

What did alarm me was GENOTYPE.

If I understood correctly, genotype of my HIV, tests my drug resistance to specific meds based, on the person who infected me.
Which meds he was on, if any, and whether he was consistent in taking them.
Scary as it may limit me to my selection.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline pittman

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #27 on: February 04, 2014, 07:14:54 AM »
Correct, VL does not date the infection, but you can expect a higher number at first, tapering off, then rising again over time when left untreated.  Even with your CD4 and cd4% it is only a general idea, as every person is different and progresses at different rates.

The genotype is an important test, as it allows for the selection of a combination that will work for you. I had some resistance, but not enough to affect the med selection. Even with some resistance, my doctor was able to prescribe pretty much any combination. I it isn't an "either/or" type measurement.  I take Atripla once a day with great results and no noticeable side effects after the first two weeks.

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #28 on: February 06, 2014, 03:21:12 PM »
****Update****

CD4 results r in 491  and 26%
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline pittman

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #29 on: February 07, 2014, 09:47:58 PM »
Those numbers aren't bad, and not unusual for how recent you think you were infected.

Has the doctor yet brought up or have you thought much yet about when you would like to start medication?  With those numbers you still have options on when to start, though the current thinking in the U.S. is for earlier treatment (below 500) though cd4 can vary quite a bit so a single test is not a reliable measure.

I am guessing your doctor will have a follow up to try and get at least one more test result before starting anything.

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #30 on: February 07, 2014, 09:59:59 PM »
Next appointment on 13th. to see PA and pharmacist.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #31 on: February 15, 2014, 02:59:49 AM »
Correction…..
It was my error but only saw case manager and applied for ADAP, requested and got blood draw for genotype.
Next appt. set for Feb. 25th. to see pharmatist and ID to discuss meds. eeek!!
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline pittman

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #32 on: February 15, 2014, 03:23:02 PM »
That's coming up quick!  If you plan to start meds soon, then you will be undetectable before you know it.

Offline Irish Eyes

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Re: Newly diagnosed and no sense of urgency from dr.
« Reply #33 on: February 15, 2014, 07:50:48 PM »
Thanks Pittman, but your positivity had me recheck my numbers, which should be emblazoned, and I left out a zero in the middle. Sorry to disappoint, but thanks for the encouragement.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Irish Eyes

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  • Member
  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #34 on: February 25, 2014, 06:26:28 PM »
Just back from 3 appts and 5hrs at doctors which included enrolling in patient retention survey which will last abt 3 years plus I had to give 3 full vials of blood.
Reviewed orig blood work with PA (physicians assistant) and everything looked good there. Especially the genotype result. Pan-resistance, ie no resistance to any meds, all at my disposal. Awesome.
The pharmacist explained the med options.
For me due to higher VL no Complera or Atripla, narrowed down to Truvada taken w Trivicay or Stribild.
I settled with, drum roll please….Stribild.
He placed the order but have to get approval form insurance co as it's not on their "normal" list (whatever it's called)
Starting down that road in a few days. Oh Lord!.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Irish Eyes

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  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #35 on: February 25, 2014, 06:31:08 PM »
Also Pharmatist ordered blood draws, 5, thank you very much. That was 8 full vials today.
It can almost relate to a chicken going to slaughter, they should just hang me from my feet afterwards.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Irish Eyes

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  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #36 on: March 07, 2014, 09:41:29 PM »
***Update***
Just received call from pharmacist that my Stribild is ready to be picked up and the copay would be only $2500.
WhAAAt!!
She is going to reconfirm with Anthem and advised that they will perhaps only fill/refill via mail order.
I wait in anticipation for her call on Monday.
Was under the impression that most if not all would be covered.

It's not the $2500 that puts me off, it's the fact that i won't be able to afford food, clothing, gas, and utilities. But looking on the bright side I own my SUV outright -  tinted windows, spacious and comfy. Just have to figure out bathroom for that all important biweekly shower. LOL
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Irish Eyes

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  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #37 on: March 07, 2014, 10:08:12 PM »
 For all those recently diagnosed, the heading of my thread should be absorbed and realize that it's not that 'there isn't a sense of urgency from the doctors', it's the simple fact that dr visits and waiting for blood results all take time.

Hopefully I will start meds approx 10 weeks after diagnosis (as correctly mentioned by Moderator Ann, "playing the waiting game").
It has given me time to ponder, educate myself and relate to the many here.
Posting and responding is only 1/2 the education here, the other 1/2 are the more personal connections via PM. It's all greatly appreciated. Thanks. Dónal.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline AusShep

  • Member
  • Posts: 274
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #38 on: March 07, 2014, 11:05:54 PM »
Clothing is overrated  :)

Hopefully just a pre-auth or something easy on the meds.  When I was with United they gave me a couple of months at the pharmacy, then made me switch to OptumRx Speciality mail order pharmacy.  With my new insurance this year, it's back to the pharmacy. 

Offline pittman

  • Member
  • Posts: 240
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #39 on: March 07, 2014, 11:13:13 PM »
***Update***
Just received call from pharmacist that my Stribild is ready to be picked up and the copay would be only $2500.
WhAAAt!!
She is going to reconfirm with Anthem and advised that they will perhaps only fill/refill via mail order.
I wait in anticipation for her call on Monday.
Was under the impression that most if not all would be covered.

It's not the $2500 that puts me off, it's the fact that i won't be able to afford food, clothing, gas, and utilities. But looking on the bright side I own my SUV outright -  tinted windows, spacious and comfy. Just have to figure out bathroom for that all important biweekly shower. LOL

Are you on a high deductible plan?  I am for the last couple years, which means that 1 order of meds and 1 doctor visit makes me hit my annual max out of pocket, $2500.  After that, I no longer have compays. I have started putting aside  1/12 of my annual out of pocket each month so I can have it ready by the beginning of each year when the big bill hits.  Just makes it easier.


Offline Irish Eyes

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  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #40 on: March 07, 2014, 11:33:24 PM »
Clothing is overrated  :)

AusShep, Have you been reading the 'Off topic' Lent post? I'm goin commando.

Pittman,
I signed up for the wonderful Obamacare, Bronze.
My understanding from my Case manager was that with ADAP that all expenses were covered.
I know I applied for it, sent the fax off. But am I supposed to get a wallet card or confirmation that my application has been approved or is it all computerized ?
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline Irish Eyes

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  • Member
  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #41 on: March 14, 2014, 09:08:15 PM »
Picked up my first script for Stribild. EEK!!
So far all doctor visits, blood tests and now meds, compliments of Anthem Blue Cross and ADAP.
Very anxious. Will give it a week or so b4 starting.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline pittman

  • Member
  • Posts: 240
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #42 on: March 14, 2014, 10:49:17 PM »
Good luck! Remember it probably will take you a couple weeks for your body to adjust, so if you have minor side effects at first, they will probably go away after that.

Offline Irish Eyes

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  • Member
  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #43 on: March 18, 2014, 06:42:49 PM »
So today I received new VL numbers and it's SCARRRRY….
A jump from 250700 to 530000.
Nothing has changed in my routine, I feel fine.
But this does concern me.
I got the meds, guess tonight I'll stop smoking and start poppin.
Come on Pittman, enlighten me with your words of wisdom.
In anticipation, thanks.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline xinyuan

  • Member
  • Posts: 186
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #44 on: March 18, 2014, 07:32:55 PM »
Take the plunge and don't look back.

You may or may not feel different right away, but you'll definitely notice changes after the first couple weeks. Usually for the better.

If you do have a side effect, let your doc know right away.

Offline Irish Eyes

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  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #45 on: March 18, 2014, 08:02:36 PM »
Thx Xinyuan, you always appear when necessary.
Just received response from dr and apparently fluctuations do occur when not on meds.
I did realise that, but to double in numbers?? EEK!.
Guess tonight's the night.
OMG nausea ensues, with a deep sigh.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline kevinazus

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  • Posts: 23
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #46 on: March 18, 2014, 11:17:50 PM »
Hey Irish, I'm now on day 8 with Stribild and haven't noticed a single side effect.  It would be easy to forget I'm even taking meds as I feel perfectly fine, except for the fact that being HIV positive has been constantly on my mind for the last 5 weeks since being diagnosed.

I tested positive on Feb 11 at the local clinic after doing an inconclusive OraQuick at home the week before.  As soon as I tested positive, they drew blood for a Western Blot then escorted me upstairs to meet with an HIV Caseworker who ordered a CD4 and viral load test that same afternoon and made me an appointment with an HIV specialist for the next week.  By the way, my CD4 was 524 and viral load was 245,000 as of Feb 11, and I'm pretty sure I was infected on Dec 30.  Saw the doctor on Feb 18.  He ordered a genotype test and a whole battery of other blood tests.  Genotype came back on Mar 4 and I got my first month's supply of Stribild on Mar 11.

Don't know what the local assistance programs are like where you are, but my caseworker immediately signed me up for an insurance policy on the Insurance Marketplace since I don't qualify yet for insurance at my job, and the County is paying my monthly premiums and my deductible from, as I understand it, grants they get through the Ryan White foundation.  Someone can correct me if that's not the correct explanation.  But, anyway, I have not had to pay for any of the labs or doctor visits at all.  She is also signing me up for ADAP which she says will pay 100% of the cost of my meds.  And since I wasn't enrolled in ADAP yet when the doctor prescribed the Stribild, she got me a free 30 day sample from the manufacturer. Gillead.   All it took on my end was a 10 minute conference call with the caseworker and a rep from the drug maker.  Hopefully you can get the same kind of assistance through ADAP and Ryan White where you're located.

Anyway, from where I am, about a week ahead of you on the meds, there seems to be nothing to worry about with Stribild.  Hang in there and good luck.

Kevin

Offline kevinazus

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  • Posts: 23
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #47 on: March 18, 2014, 11:26:10 PM »
Correction:  Guess I'm only about 3 days ahead of you on the meds.  You said you had some nausea at first?  Have you experienced any other effects since?

Kevin

Offline Irish Eyes

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  • Posts: 460
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #48 on: March 18, 2014, 11:47:01 PM »
Correction:  Guess I'm only about 3 days ahead of you on the meds.  You said you had some nausea at first?  Have you experienced any other effects since?

Kev, I may have picked up my meds 3 days after u but have yet to start.
As for ADAP, yes I got it, thank god. And also no bills.
NB I'm nausious* due to the anticipation of starting and the commitment.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
11.26.2014      VL <20

Offline kevinazus

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  • Posts: 23
Re: Newly diagnosed and no sense of urgency from dr.
« Reply #49 on: March 19, 2014, 12:38:50 AM »
Just curious, why have you not started taking them yet if you already have them?  If it makes you feel any better, I can assure you that after 8 days I have not experienced one single side effect.  I honestly feel completely normal.  In fact, I feel better emotionally than I have for the last 5 weeks just because I am so happy to be finally doing something to fight this fucking virus.

 


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