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Author Topic: Just tested + : Not sure what to do next - in Seattle, WA Area  (Read 7939 times)

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Offline guyinwa77

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Just tested + : Not sure what to do next - in Seattle, WA Area
« on: September 23, 2009, 12:54:22 PM »
Hey All-

I just found out 09.18.09 that I am HIV+.  I had a terrible 3 week serocoversion and as I was feeling a bit better - I was diagnosed.  So now I am feeling physically much better - back to the gym and running.  I don't know my VL or CD4/CD8 counts - still pending. 

Mentally I don't know what I feel - maybe I'm in denial - but it's not like I don't know that I have this, and I am trying to take the next practical step. 

First I want to get some medical care - and I favor early treatment.  Does anyone know a provider in the Seattle area that would be good to see?  I want to find someone that specializes in HIV care.  I myself worked in HIV research for 4 years so I know the science and I am ready to be a good patient but I am going to have a lot of questions for my provider.  I want to find someone that wants to work with me on treatment possibilites - not just tell me what to do. 

Emotionally, I am lost.  I have not cried and have basically just stepped back into my life as normal.  I have only told two people - and I am NOT ready to tell anymore.  Family included.

So if you have some words that you could share I would be so appreciative. . I'm a 31yo gay male.

Thanks and Cheers!
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline LBpozguy

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  • Posts: 51
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #1 on: September 23, 2009, 01:39:19 PM »
Hey Guyinwa:

Welcome to the forums :) I am sorry to hear about your recent diagnosis. I have been HIV+ for a short time (tested poz in Sept 08), I do not have all the answers for you but just wanted to say I know what you are going through. When I tested poz, my partner of 12 years was out of the country on a trip and I had NO ONE to talk to until he returned. Was awful and I think I cried for days at home all alone. I am afraid I do not know any providers in your area but I would think that some of the others that frequent the forums will be able to help you out in that area. I would think that your general practitioner would be able to recommend an ID doc for you. Mine did and I actually like her better than my GP. LOL

I have not told many people about my diagnosis either. I still have not told my family and to be honest I still don't think I will anytime soon. I have told a few of my close close friends and so far they have been there for me when I needed them.

My thoughts are with you!!

LBPOZGUY
Feb 08 neg
Sept 08 - First poz test
Sept 08 CD4 558 (% unk) VL 11000
Dec 08 CD4 480 (29%) VL less than 700
Mar 09 CD4 370  VL 25000
June 09 CD4 425 VL 68000
Aug 09 Started Atripla
Sept 09 CD4 639 VL 100
Nov 09  CD4 716 (35%) VL Undet!!!!!!!!!!!!!
Jan 10 CD4 685 VL UND

Offline guyinwa77

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #2 on: September 23, 2009, 01:45:54 PM »
Thanks for the kind words - they help.  I have been woking with my gp to find an ID doctor but now I hear from someone at the health department that I should find someone who sees a majority of HIV patients - not just a few.  So I need to talk to this local clinic and see if they are a good fit.  Seattle is about 30 mins from me - which is fine - but haivng someone closer would be more convienent - but 30 minutes is not bad if they are a better provider. 

I'm thankful to have insurance and a job - so least that gives me some options.

How are you doing ? Did you opt for early tx ?
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline LBpozguy

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #3 on: September 23, 2009, 02:18:14 PM »
I have been told and have read in the forums here that yes it is a good idea to find an ID doc that sees a majority of HIV patients. My ID doc sees mostly HIV patients and was head of one of my areas big ASOs.

I know Seattle well, used to live up there. There should be plenty of good ID docs in the area. So you should have no problem finding one you like.

I am doing good. Have had to make a few changes in my life style. Just started meds (aug 15) and have my first visit with my ID doc since starting, next week. can't wait to see the blood test results!! My ID doc believes starting meds sooner is a better approach. My CD4 count was in the 400's when I started. Was not a lot of fun at first but has gotten a lot better in the last few weeks.

LB
Feb 08 neg
Sept 08 - First poz test
Sept 08 CD4 558 (% unk) VL 11000
Dec 08 CD4 480 (29%) VL less than 700
Mar 09 CD4 370  VL 25000
June 09 CD4 425 VL 68000
Aug 09 Started Atripla
Sept 09 CD4 639 VL 100
Nov 09  CD4 716 (35%) VL Undet!!!!!!!!!!!!!
Jan 10 CD4 685 VL UND

Offline confidentIwillbeOK

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  • Posts: 131
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #4 on: September 23, 2009, 06:38:45 PM »
Quick article about picking a provider:

http://www.aidsinfonet.org/fact_sheets/view/202

...I was told (~8 weeks ago) that if at all possible and practical your doctor should be an HIV "expert" to ensure he or she has the most up to date information about treatments and meds.  Your ID doc can certainly be coupled with your GP/internist if you want to stay with him or her. 

Two different sources said an "expert" is someone with 150 patients. When I met with my doctor and asked how many patients he had he said "148"...."sorry" I said...."gotta can you...you need to have 2 more to be an expert".  He laughed.   ;) 

Anyway, I don't think you will have trouble finding someone good and if you need to drive 30 mins for it that would probably be better than settling for a less qualified person who happens to be a little closer. 

Seems like you will do fine....you are motivated and educated so you know the questions to ask and will work with your provider to come up with the best plan for yourself.

Right on about feeling lucky to have a job and insurance...makes things so much easier!

Here are two great books:

http://www.amazon.com/100-Questions-Answers-About-AIDS/dp/0763750425
http://www.amazon.com/First-Year-Essential-Guide-Diagnosed/dp/1600940137/ref=sr_1_1?ie=UTF8&s=books&qid=1253745144&sr=8-1

...I have only read the first one and it was great.  A few people recommended the second one and I just ordered it after looking at a few pages of it on Amazon. 

Hang in there and come back here with questions.   :)

Later,
Steve

PS...I think it is a good you told the 2 people...having a person or two to talk to for me was very beneficial.  You will tell others when you are ready.....

Offline CallMeSid

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #5 on: September 23, 2009, 06:49:24 PM »
Hey.

Sorry to hear about your recent diagnosis.  Hang in there with everything.  You'll likely cycle through the full-spectrum of emotions.  Do talk to the friends you've chosen to confide in.  Come back here frequently.  Read as much as you can, but take breaks when it seems overwhelming.

The AAHIVM (American Academy of HIV Medicine) web site has a searchable list of HIV providers which may help you find one in your area.  I'm not sure if this link will work, but you should be able to cut and paste into your browser:

http://www.aahivm.org/index.php?option=com_comprofiler&task=usersList

You can also try contacting the Seatlle ASO (Lifelong AIDS Alliance) and they may be able to point you toward some resources/providers:

http://www.lifelongaidsalliance.org/

LAA also has a program called STEP (Seattle Treatment Education Program) and they run community forums about treatment-related issues and may be useful to you as you explore your treatment options.  To get on their mailing list for upcoming STEP community forums, contact them at step@llaa.org or (206) 957-1629.

Hope that helps!  Feel free to PM me if you're so inclined.

~Sid, a former Washingtonian
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Offline guyinwa77

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  • Posts: 16
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #6 on: September 23, 2009, 07:51:48 PM »
Wow! Thanks guys - this is very helpful.  The sites are great - this is going to help a lot.

Luckly my friends are being very helpful right now.  They have called everyday - which seems overwhelming - but as the news is hard for me to digest, it is going to be hard for my friends to digest.  At this point I know that I have two people looking out for me and I just want to take the steps to see a good doctor and get on some plan of action.  Then probably a thearpist!

I appreciate the kind words.  Do I need to get a 'case worker' ? I'm not sure how involved all this needs to be - I know there are lots of resources, but besides your medical providers - what other things do you all find helpful ?  I'm not a big 'group thearpy' kinda guy - do you guys find support groups in your area helpful?

Prior to all of this I was 'dating' and had met someone that I liked - he and I were never sexual.  He's out of town for another month, but I'm scared when he returns if he wants to see me - I have to tell him.  How do you all handle that?


I could shoot off a million other questions  .. but this is it for now.

J
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline Rev. Moon

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  • Posts: 3,782
  • Smart ass faggot ©
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #7 on: September 23, 2009, 08:20:52 PM »
Hello Guyinwa, sorry about your diagnosis, but welcome aboard.  It is good that you have joined us; you will be able to find support, information, some laughs here and there (humour is much needed in order to do well), and good advice from many great people. 

I probably don't have much to add to what Steve, Sid, and LB had to say.  Right now you just need to adjust to this change in your life.  The time to cry or to face the other emotions that come along with this will come when it does.  I for one cried only after my ID doc gave me the news (worried about my family, not afraid of death) and then went through a short phase when I returned to being a "tough guy."  A couple of weeks after I felt pretty lost.  Now --after almost four months-- I just take life one day at a time.

You are well informed about HIV, so you should be OK as far as planning a healthy way of living from now on; take good care of your body and mind (that includes spirituality, whatever you may believe in).  Making sure that you have a good support network will be crucial to your well-being, so don't be too worried about sharing this info with others who matter to you and who you know will be supportive.  In my case I told my immediate family and five closest friends.  They make a big difference in my being strong.

As far as telling a "special" someone... there is no easy way.  Honesty however goes a long way, especially if he cares about you. 

I wish you well in all respects.  You sound very level-headed and clever; you are going to be fine.

A big hug for now,

m.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline guyinwa77

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  • Posts: 16
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #8 on: September 23, 2009, 08:26:29 PM »
Well good news - got my 1st appointment scheduled to see a specialist.  His clinic has over 1000 HIV patients and it is about 30% of their practice - so I think that will suffice!  That's one thing to mark off the list - I guess I should get a genotype test done before it - good idea ? I know I have my VL and CD4 test done - just don't know the results. 

The apt is a little over 2 weeks away - and now I'm thinking that is too far - but I guess my body is doing what it need.  Yes ? I started with seroconversion symptoms on 22Aug2009.  See now I'm gonna second guess myself - should I move more quickly ?

Ok, gonna relax a bit.

j
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline guyinwa77

  • Member
  • Posts: 16
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #9 on: September 23, 2009, 09:41:19 PM »
Ok, another post but I got more info just now from my PCP.

So I started serocoversion on like 22Aug2009.  After the news that I was + on 18Sep2009 I got my VL an CD4 drawn.  So my PCP just called and my VL is 244,000 and my CD4 is 425.  The VL being so high kinda freaks me out - what do you all think ?
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline confidentIwillbeOK

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  • Posts: 131
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #10 on: September 23, 2009, 10:13:09 PM »
I am not an expert but I will just tell you what me and the other half went through.  We also found out 3-4 weeks after seroconversion and our VL numbers and CD4's were similar (250,000 to 490,000 VL and low to high 400's for CD4).  The next labs the VL was way down (25K for me) and CD4 up slightly.  My initial ID appointment was not for 4 weeks after my + test....I ended up switching facilities and then got it about 2 weeks after the fact.  Your appt should be totally fine.  If you found out during seroconversion there is a school of thought that initial immediate treatment could help but I think that is inconclusive.  

Yes...definitely do the genotype/resistance test at your first appointment.....best to do it when the VL is high.

Sounds like you found a good place to go. You will be in good hands.

Final thought.....as my partner was walking out of the ID doc's office after the first appointment the doctor patted him on the shoulder and said "You guys are going to be fine".  Coupled with the book noted above having the doctor say this really made be believe I could be (and would be) OK.

I don't think you need a case worker unless you are having troubles finding services or are having financial or housing difficulties.  The option always exists if you need it down the road but IMHO from what I read it doesn't sound like you need this right now.  I went to a "newly diagnosed" support group but found that a lot of the info was already given to me by my doc, a few people + people I spoke with, and in the info on this and other websites and the books I read.  I am just trying to find a few local people to connect with.....I think that would be most beneficial.....still trying to figure out how to find some poz friends. 

Yes...relax a bit.   :)  You found out early which is awesome (this does suck but it is much better to find out early on than years down the road!), you found a good facility, you have a job and insurance, friends, you sound smart and motivated, and you found this site.....you will be OK.    :)

« Last Edit: September 23, 2009, 10:27:37 PM by confidentIwillbeOK »

Offline Rev. Moon

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  • Smart ass faggot ©
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #11 on: September 23, 2009, 10:32:19 PM »
So my PCP just called and my VL is 244,000 and my CD4 is 425.  The VL being so high kinda freaks me out - what do you all think ?

No need to be frightened; even higher viral loads can be seen at the time of the acute infection (mine was also about 3 weeks and it was quite nasty at one point).  My own VL was 1.4 million (beat you by over a mil mate); CD4 was also at 425 --I wonder if this a common number while the initial infection is taking place-- and my % was 13 (which I guess, officially, means that I had AIDS from the get-go?).

If you check the profile for some of our other members you may see numbers like that; Mecch for example was over 3 million.  The high number had a significant influence over the fact that I started meds immediately while still undergoing seroconversion.  

Do not stress; just make sure to get your genotype (and phenotype if possible) so that the right course of treatment can be followed.

m.
« Last Edit: September 23, 2009, 10:36:00 PM by livebythemoon »
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline tokyodecadence

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  • Posts: 234
  • A one room disco.
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #12 on: September 23, 2009, 10:34:34 PM »
GuyinWA: I used to live in Seattle (I live in Portland now). Consider yourself lucky! Well, for what it's worth. The PNW has some of the best HIV/AIDS services in the country (statistically).

In any case, go the Harborview Medical Center. The one on...I believe it's 6th or 7th and Jefferson. It's the hospital that bus numbers 3 and 4 roll by. That place is the BEST. Everything's there; the pharmacy, financial services, healthcare services, mental services, the works. When I first began taking meds, I went to the Life Long Aids Alliance, which is good if you're poz and homeless, addicted to drugs, or an at-risk youth. Which wasn't my situation, as I had a job, a home, health insurance, and was of compus mentus. Just go straight to HMC (if you haven't found out already).

The clinic is called the Madison clinic (http://depts.washington.edu/madclin/). Trust me, go there, you will leave with services, and everything in order.

Of course they have the standard confidentiality policies and whatnot, so you're covered there.

Good luck with your services! I'm sorry to hear about your status, but we're all in it to win it. One thing you should know though, is that no matter where you live, what your financial status is, you can and will receive access to the services and medication you need. Especially in our neck of the woods. The providers, programs, and services in general are top notch, in both Washington and Oregon. You'll work it out.
« Last Edit: September 23, 2009, 10:37:08 PM by toykoDecadence »
[.Fodão.]

Offline CallMeSid

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  • Member
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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #13 on: September 23, 2009, 11:47:08 PM »
Hey.

Glad you're getting answers to some of your questions from us! 

To address some of your questions posted above:

*  I need to preface this with the fact that I'm jaded and cynical and a pessimist, but I don't think you need a caseworker.  Based upon your posts in this thread alone, so shortly after your diagnosis, I think you're 3,000 times smarter and 1,500 times more informed than any caseworker you might find.

*  As livebythemoon and confidentIwillbeOK said, i think your numbers are pretty common for somebody in the seroconversion process.  It would probably be good to get another set of numbers in a month's time (2 sets of labs within the first month of diagnosis seems to be fairly "standard") and hopefully by then, you'll be hooked up with your HIV doc who can guide you from there.

*  Ah, yes.  The dating disclosure question.  Since you haven't slept with him yet, there's no urgent need to disclose (and even if you had slept with him but been "safer", there wouldn't be an urgent need).  But the reality of dating as a POZ individual is that it's generally best to disclose fairly early in the course of things.  You don't necessarily need to bring it up on the first or second date, but it's probably best to bring it up by the 3rd or so date if it's looking like naked Twister beneath the sheets is in your future.  The unfortunate reality is that many NEG guys would feel "led on" if you disclose after they've developed feelings for you.  At the same time, if you're feeling that this guy is special, you should probably tell him before he has the chance to irreparably break your heart.  At the same time, don't disclose on the 1st date (or even the 2nd) because on those dates he REALLY DOES want to get to know you.  He may call it quits on the 3rd date because you're chronically late or you order red wine with fish and you being HIV-positive isn't an issue because -- guess what?  he is too! -- but he's a punctuality queen so he has to kick you and your tardy ass to the curb.

* Finally, I did want to second what tokyoDecadence had to say about the Madison clinic.  It is the cutting edge HIV care clinic in Seattle.  I would just like to add, however, that you may (may!) find that they want to sign you up for some research studies.  If those opportunities are presented to you, please (please!) make sure that participating would be beneficial to YOU (as opposed to beneficial to their agendas).  And I do want to add that some of the leaders at that clinic do strongly favor the "early treatment" (i.e. starting when CD4 count drops below 500) school of thought.  So, just take that with a grain of salt....
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Offline guyinwa77

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #14 on: September 24, 2009, 08:57:22 AM »
Thanks all, I will keep the Madison Clinic in mind.  I actually currently work in clinical drug studes, just not for HIV anymore.  Back in the early 2000's I worked for the UW/Fred Hutch in the virology dept - ironic.  I actually was exposed to some cell cultures and they thought it was serious enough to put me on PEP.  Well , I thought it was pretty serious too considering the strains of the virus I was working with. 

So, I was on almost 10-14 pills-a-day since there weren't a lot of combo drugs.  I survived it just fine - so I'm not scared of HAART - infact I am more for using them.  Maybe that will just soothe my need to feel like I'm 'doing' something about this - but I think the evidence supports it so I'm ok if the doc is with starting it. 

You guys/gals are wonderful.  I am going on vacation (nicely timed I think) until the middle of next week.  I'll definatly try to keep connected to this forum while I'm gone. 

j
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline guyinwa77

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  • Posts: 16
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #15 on: October 01, 2009, 08:04:15 AM »
Hey All-

Well just got back from a few days on vacation, it was nice.

I guess now it's back to reality - got several appointments set up in the next weeks.  I'm feeling terribly anxious.  While I was gone I had an anxiety attack and blacked-out.  I blamed it on the heat - but I know it wasn't that.  I think it's time to start to 'feel' all this - but that's scarry.

Wish me luck,

j
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline ruralguy

  • Member
  • Posts: 141
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #16 on: October 01, 2009, 09:51:44 AM »
Hang in there.  The anxiety attacks will pass but they can be scary.  At least you recognize them for what they are.....knowing when they are coming on will help you handle them better.  For me, they came with great frequency at the beginning and lessened gradually over 6-8 weeks and now I don't get them anymore.

-dave
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline guyinwa77

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  • Posts: 16
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #17 on: October 07, 2009, 09:19:47 PM »
So today I had an apt with and ID doctor - I figured I would get a second opinion before I see the specialist.  I got my genotype test back and I am not resistant to any of the meds so that is good.  One concern she had was when I got my CD4 tested my CD4 was 425 but the % was 14, which she was a little concerned with. 

Even thought she was not an "HIV Specialist" I really liked her.  But I will see what the guy in Seattle has to offer.  Her suggestion was to start meds, Atripla, which is fine by me.

She was very reassuring and I felt better leaving the office.  She repeated all my labs again to see where I am at today - but I guess I will start the meds unless the guy in Seattle has some persuasive reason why I shouldn't.

What do ya all think ?

j
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline guyinwa77

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #18 on: October 09, 2009, 08:50:34 AM »
So I started Atripla last night.  This morning ... I feel a little 'drunk' but I guess besided that I feel ok.  I repeated my CD4 count two days ago and while my doc said the absolute number was fine (>500) my percentage was only 9% which is not good.  So it's time to start meds and 'reset' my immune system. 

Any ideas ?
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline ruralguy

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #19 on: October 09, 2009, 02:50:25 PM »
Starting meds sounds like a good idea.

I've been on Atripla for about 3 and a half weeks.  I get my first post-meds VR load results on Monday.

I had the same hungover / groggy /drunk feeling but it began to subside fairly quickly and is gone now.  No rash.  A few fun dreams early on but none now....never anything scary.  I had some gas from it but found if I ate a light snack with it that problem disappeared too (this was suggested by people here and it worked).  But everyone is different.

Now it is so unnoticable I'm going to ask my doc how to switch to the morning since my morning routine is more stable. 

Hope you got a good break on your vacation anf that you do well with the meds.  Keep us posted.

tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline confidentIwillbeOK

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #20 on: October 10, 2009, 12:26:02 AM »
J, hope all goes well with starting meds.

Ruralguy, glad to hear you have such a positive experience and are not experiencing side effects.

My boyfriend wanted to be proactive so he started meds today...Atripla as well.  We discussed with out doctor alternatives due to his desire to stay away from efavirenz but decided that it was the best choice and a change could always be made if need be.  He took it about an hour ago....going up to the bed now to see how he is doing.

Hugs to all,
S.

Offline guyinwa77

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #21 on: October 10, 2009, 12:17:52 PM »
Well day 2, took it last night, and this morning I feel great.  No more groggy then I normally would be in the morning and that is kicked with a cup of coffee.  I met with the doctor in Seattle who has more HIV patients but in the end what I came away with is that any treatment regimen I choose at this point will basically get me to the same end point. 

What I am going to consider doing is a clinical trial where they add Raltegravir to half the subjects and the other half don't get it.  You still continue whatever regimen your doctor put you on so there is no real 'loose' even if you don't get it.  From what I gather raltegravir is most useful to optimize viral suppression in viral resistant HIV infection - so at this point I have no reason to 'need' it per say.

So overall feeling much more hopeful about the situation.

This week I went out and bought myself a new HDTV - something I've always wanted - cause SHIT I feel like I deserve it! 
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline ruralguy

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #22 on: October 10, 2009, 03:51:05 PM »
Good for you  ;D

You do deserve it.  And, for day 2, that is great.
Keep us posted.
- Dave
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline lilred122214

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #23 on: October 11, 2009, 01:11:07 PM »
Hey I'm sorry to hear about ye recent diagnosis. I have been poz fir about 6 months now. It sounds like you are definitely on the right track. If you Google the dunshee house in Seattle there are support groups for poz... including a newly diagnosised group on wednesday nights.

Offline guyinwa77

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #24 on: October 12, 2009, 09:16:31 AM »
Great I'll take a look into that. 

So I've downed 4 days of Atripla and I feel perfectly fine.  Last night in my dreams I went apartment/condo shopping.  It was quite fun actually.  I didn't really want the dream to end. 

I'll be pretty anxious to see what my VL is in a few months.  I check back in with my ID doctor in two weeks just to see how things are going.  This week I'm probably going to screen for this research study and they apparently are going to do another antibody test that can give an estimate on how long you have been infected - didn't know this existed - so assuming my little 'flu' back in August was really seroconversion then I should fit in the 6 month window the study is looking for.  The nice thing is that the study will pay for all my labs for 2 years.  My insurance covers labs but I still have to pay 10% which as I'm looking at some of the charges is going to be a few hundred dollars for all the stuff they have done so far.  A lot of that I assume won't need to be repeated minus the VL and CD4/8.  But they ran every STD test and I bet the genotype was pretty pricey.

Thankfully the Atripla only cost me $25 a month - damn the sticker shock when I saw what the pharmacy charges for that for a month! But ya know I won't get down on the pharmaceutical companies at all - they put billions into research into drug that sometimes never see the light of day - so I know it cost a lot to get these meds onto the market.  Clearly people are living longer, better lives with HIV - so I bow to them for doing it.  I'm sure HIV meds are not a lucrative as many of the more 'common' ailments that they could be pouring their money and time into - so I'm just happy that there is all these choices for us.

Well off work - take care all :)

J
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline lilred122214

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #25 on: October 18, 2009, 03:22:09 PM »
From the sounds of it things seem to be going well. My only advice is to remember this is a life journey... it took me a while to accept that. Hope to see you at group on Wednesday.

Offline Dale Parker

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #26 on: October 18, 2009, 06:16:03 PM »
Hey Guy: You will find a lot of good advise on this site. It sounds like you have a great attitude and should handle HIV emotionally pretty good. I was diagnosed this past spring and only had 21 CD4's and a viral load of over 500,000. I told my siblings and friends as I was sure I was going to end up sick in hospital or worse in the very near future. That didn't happen for which I'm gratefull. So far I've received great support from my family and really great support from my friends.
  Sounds like you really like your doctor even though she is not a HIV specialist. Having a doctor who you can talk to and understands you is very important. Maybe you can find a HIV specialist who will work with your current doctor. See you specialist on the tougher issues and your regular doctor for everything else. My HIV doc is great and also acts as my G.P. doctor.
Best of health and luck
Dale
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline hades01

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #27 on: October 19, 2009, 05:32:35 PM »
Everyone here is great!
I was in your shoes 14 months ago and i found great support here!!
No health issues at all after 14 months of my diagnose and my CD increase from 199 to 410 last lab work
HUGS and god bless
Eduardo
Eduardo Cabrera
"Life will never give me what i want, only what is best for me"
08-08-2008 HIV+ (What a day)
08-14-2008 VL 105K   CD4 199 (Pretified and hopeless)
11-14-2008 Started Atripla  and no side effects at all yet
Lab Results 12-31-2008 VL 220 CD4 189
Lab Results 03-31-2009 VL undetectable CD4 308
Lab Results 06-30-2009 VL Undetectable & CD4 274
Lab Results 09-30-2009 VL Undetectable & CD4 410
Lab Results 10-06-2010 VL Undetectable & CD4 514 %34

Offline guyinwa77

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #28 on: October 21, 2009, 11:38:22 PM »
Well I got some great news today.  On 10/14/09, just 12 days after I started Atripla, my VL is at 942 and my CD4's are going up a bit.  My doc noticed that my precentage is low but then noticed that I had a CD8 count of 3,096 [range 250-1240] so this may account for the precentage looking low.  Anyone else experienced this stimulation of CD8 ? My CD8 precent is 78% - much higher then the upper normal which is 35.

I'm just happy about the VL news - amazing I think.
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline ruralguy

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #29 on: October 22, 2009, 01:57:12 PM »
That is great news and I am sure a relief for you.  I had a similar experience with atripla, getting to undetectable in only 3 weeks.  It feels good to know the virus is dormant and in hiding.  Let's hear it for medical science  :)
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline guyinwa77

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  • Posts: 16
Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #30 on: November 14, 2009, 12:21:58 PM »
I wanted to say how sad it was to hear that 'confidentIwillbeOK' passed away in that tragic skydiving accident in California.  Having never met Steve in person, I could tell he was a caring and compassionate individual.  His words helped me through the early days of learning about my HIV status. 

Adam, his partner, has all my best wishes and thoughts as he grieves during this horrible moment. 

Steve, you will be missed by all of us on this forum - your mark in life will not fade.

With Love,

J
Sero: 08.22.09 Dx: 09.18.09
09.18.09: VL 244,000 CD4 425 %14
10.07.09: VL 67,000   CD4 ???  %9
10.08.09: Started Atripla
10.14.09: VL 942 CD4: 479 12%

Offline Forevergreen

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Re: Just tested + : Not sure what to do next - in Seattle, WA Area
« Reply #31 on: November 16, 2009, 02:20:53 PM »
i used to live in seattle. i was actually diagnoised there. dr. michael rosenfield is a great hiv doctor. he's knowledgeable and compassionate. he's also a general practice doctor, so you can see him for almost everything.

if you want more info...here's a link

http://www.ecmedicalarts.com/michael-rosenfield.html

 


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