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Author Topic: New Member with Questions  (Read 5396 times)

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Offline WestSide

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  • Posts: 39
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New Member with Questions
« on: January 19, 2013, 10:53:27 PM »
Newly diagnosed a few months ago.  I haven't heard much about how medication has improved quality of life for people.  Do people actually feel better once they become undetectable?  I have an anxiety disorder and also notice that I have the burning pins and needles in my hands and feet.  Also my limbs fall asleep easily if I don't keep them in a normal position.  My cd4 is 390 and vL 25k.  We haven't started treatment yet because my doctor wanted to give me time to consider which meds I wanted to start.  He recommended Complera or Stribild.  I've been feeling dizzy on a daily basis and also feel foggy sometimes.  I am wondering if I am not suffering some neurological problems.  In any case...  in a few weeks I will go back to the doctor and will start on meds.  My urine has been cloudy lately so I am going to the doctor this week to get that looked at.  Sorry for the confusion - my doctor is on vacation I think for 2 weeks so I am seeing another doctor for the urine.  I have gone in 4 times and 2 times were for anxiety.  It seems like when I am stressed at work I feel kind of sick or I get the feeling like I am going to get a fever but that doesn't happen.  Will that stuff get better?
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: New Member with Questions
« Reply #1 on: January 19, 2013, 11:13:31 PM »
It sounds like everything is anxiety related -- isn't your doctor sending you to a proper therapist to address this. Untreated it's only going to get much, MUCH worse. You need to undergo cognitive behavioral therapy, but perhaps at the beginning it would be helpful to be on some anti-anxiety medication until the therapy begins to work and allow you to control your anxiety naturally.
"I’ve slept with enough men to know that I’m not gay"

Offline WestSide

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Re: New Member with Questions
« Reply #2 on: January 19, 2013, 11:22:33 PM »
Yes - I have a therapy appointment the same day I see my doctor this month.  I used to be on Effexor and Wellbutrin and stopped that a year ago since my life was going well.  If had any panic attacks or anxiety I would use Ativan to control it as needed.  Now I am taking it nightly to sleep otherwise I wake up with a panic attack.  My current ID doc frowns on using benzos so he is sending me to a therapist for this.  I have been dealing with depression since diagnosed and have started 5-HTP which is working for me but it isn't cost-effective.  So I hope to get this all figured out.  I am not fond of starting an anti-depressant because the side-effects aren't great but I may give in if it gives me piece of mind and will help me navigate this new road I am on.  I also haven't told anyone and I am trying to find support.  There is a mentor program here that I reached out to but the town seems kind of small and I think I know this person and didn't really get a long with them so I am not going that route.  I will be enrolled in an organization in a few weeks that have resources and groups I can attend but I really don't feel like "coming out" yet.  I also don't want to burden my friends and totally break down and be non-functional.  I know I am strong but I also know that being human I have to go through the natural healing process and it just scares me to open up and be vulnerable so this forum is my hope of helping and it has been helping me tremendously so far.  I have just been living a life of isolation and spending time with some friends acting like nothing is wrong or has changed in order to survive.
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline vertigo

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Re: New Member with Questions
« Reply #3 on: January 20, 2013, 01:44:53 AM »
Complera and Stribild are both single tablet regimens, meaning just one pill a day. This simplifies adherance compared to some of the other treatments.  Stribild is very new -- just approved last year -- so not too many people on it yet.  My doc says it works well with few side effects, but is very expensive.  Complera has been around a little longer and seems to be well tolerated by most people, but it does come with a meal requirement.  If you search these boards you can find detailed discussions of both.  Sorry you have to join us here, but good luck.  You will be fine.

Offline WestSide

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Re: New Member with Questions
« Reply #4 on: January 20, 2013, 02:07:07 AM »
Thank you Vertigo.
I am leaning towards Stribild since comparing the test subjects to complera.  With any of these drugs I am just worried about how they will effect my organs.  I am also worried and hope that I will be able to function at work when I do start.  The one thing I don't see posted on here is the window of taking your meds.  I mean do people take their meds exactly the same time every day to the minute or do people vary day to day within a few hours?  I was wanting to take my meds at bedtime to reduce any side-effects but after reading it may be better to take them at lunch.  The vivid dreams kind of scare me because I can have nightmares just taking melatonin.  I am also worried about immune reconstitution and feeling sick.  It's hard to function in a high stress job.  I mean what worries me the most is trying to keep this all confidential at work and trying to stay transparent.
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline WestSide

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Re: New Member with Questions
« Reply #5 on: January 20, 2013, 02:10:53 AM »
Also, I still haven't heard if people feel like their healthy old selves after they start their meds and their counts improve.  Am I going to feel like crud the rest of my life? 
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline texaninnyc87

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  • Posts: 236
Re: New Member with Questions
« Reply #6 on: January 20, 2013, 02:20:11 AM »
I started on stribild a little over a week ago. No serious side effects. Felt a little nauseous the first few days but thats mostly gone. I take it around noon every day, not at the exact some minute. I wake up late, like 10-11 usually and take it with my "breakfast" around noon. Some days i'll wake up earlier and take it a few hours earlier. My doctor said a few hours wont change much at all. I've had the vivid dreams, even taking it when i first wake up, so that if thats your only reason for not taking it before bed i wouldn't bother. I have felt a little weird and kind of high for a few hours after taking them. I actually just posted about it. Its very subtle and I cant even tell if its real or im just making it up, but I can still function totally normally when i feel like this. I cant really attest to feeling "better" yet, since it hasn't been very long. i also have bad anxiety at night and take klonipin to help sleep. my anxiety is slowly getting better as I come to terms with my DX. seems like yours was in issue beforehand so its a little different. hope this helped!
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: New Member with Questions
« Reply #7 on: January 20, 2013, 02:27:20 AM »
My current ID doc frowns on using benzos

Oh please. I've had generalized anxiety disorder for over a decade and klonopin works very well IMO. As long as you keep the dose under 2mg/day I don't think it's a big deal. Yes, it's addictive in terms of that word meaning you take it every day, but you also are going to be taking HIV meds every day and nobody says you're addicted to those.
"I’ve slept with enough men to know that I’m not gay"

Offline texaninnyc87

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  • Posts: 236
Re: New Member with Questions
« Reply #8 on: January 20, 2013, 02:33:28 AM »
love my klonipin. i only take .5s and dont take it daily. i havent had any problems feeling like im addicted to it or anything. been taking it for over a month now.
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD

Offline WestSide

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Re: New Member with Questions
« Reply #9 on: January 20, 2013, 02:51:23 AM »
I have my therapy on the 28th along with my doctor appointment to start on meds.  I sure hope they give me something else to put me on for anxiety.  I've decided to make my ID doctor my primary care doctor too.  I hope that isn't a mistake but I am willing to give him a chance.  Timing seems really weird but I am having faith that all this timing is working out.  I am wondering if I shouldn't start my meds on the weekend to give me 3 days of being on them before starting work.  Did any of you just start taking meds the same day you went to work?  The feeling "high" thing worries me.  I don't want people to think I'm stoned at work.  I sometimes get this weird feeling that they want the money coming into their clinic but that could just be me.  I get this feeling also because some other organizations have told me if they don't work out I could think about going to a specialized hospital too.
« Last Edit: January 20, 2013, 02:53:12 AM by WestSide »
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline texaninnyc87

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  • Posts: 236
Re: New Member with Questions
« Reply #10 on: January 20, 2013, 02:59:14 AM »
The high feeling is not intense at all. No one would think you were stoned. Also, theres a very good chance you wont even get it. It's not a common side effect with Stribild and like I said, it's so subtle I might just be imagining it. I really wouldnt worry too much about side effects until they are an actual thing. theres a very good chance you wont experience them at all. and the feeling is not like being stoned, but being kind of buzzed. ive gone to work and socialized feeling this way. i've written articles for the magazine i work for this way. it doesnt really effect you at all.
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD

Offline WestSide

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Re: New Member with Questions
« Reply #11 on: January 20, 2013, 03:15:46 AM »
Thanks I'll keep that in mind.  I just worry that I am one of those people who may have neurological effects from everything.  I have these headaches that are light and I feel like my balance is messed up and I have muscle twitching everywhere that has gotten worse in the last few months so I can't help but wonder if the virus is already doing something neurologically to me.  I've emailed my doctor about that so we will see what he has to say about that too.  That kind of already makes me feel kind of high.  I really don't feel the anxiety has anything to do with the fog and feeling high.  It could very well be the neurotoxins affecting me.
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline texaninnyc87

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  • Posts: 236
Re: New Member with Questions
« Reply #12 on: January 20, 2013, 03:21:00 AM »
sounds like a typical case of hypochondria to me!  :P
before i got on meds and really talked to my doctor i had convinced myself HIV was ravaging my brain and making me feel weird and strange, i thought it was affecting my eyesight. i thought it was making me feel slow and dizzy. that was all in my head as it likely is with you. the second my doctors assured me I was fine all these symptoms vanished. it seems a lot like what youre talking about. also my cd4 count was LOWER than yours and typically people dont really experience neuro effects until much much later in the disease. have you been checked for any vitamin defeciencies? b12 can make your hands and feet fall asleep quickly and feel tingly. stop worrying until you have a reason to because stress is one of the WORST things for HIV.
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD

Offline WestSide

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Re: New Member with Questions
« Reply #13 on: January 20, 2013, 03:30:20 AM »
Good well I hope it is me being a hypochondriac.
All my tests seem to be fine but my Vitamin D is low.  We haven't reviewed the last tests yet but here they are:

Component   Your Value   Standard Range   Units   Flag
VITAMIN B12   375   200 - 1100   pg/mL   
FOLATE, SERUM   23.1      ng/mL   


Component   Your Value   Standard Range   Units   Flag
VITAMIN D, 25-OH, TOTAL   27   30 - 100   ng/mL   L
VITAMIN D, 25-OH, D3   27   See Below   ng/mL   
VITAMIN D, 25-OH, D2   <4   See Below   ng/mL   


Component   Your Value   Standard Range   Units   Flag
CHOLESTEROL, TOTAL   128   125 - 200   mg/dL   
HDL CHOLESTEROL   33   > OR = 40   mg/dL   L
TRIGLYCERIDES   157   <150   mg/dL   H
LDL-CHOLESTEROL   64   <130   mg/dL (calc)   
CHOL/HDLC RATIO   3.9   < OR = 5.0   (calc)   
NON-HDL CHOLESTEROL   95      mg/dL (calc)   
 

Component   Your Value   Standard Range   Units   Flag
RBC   5.22   4.20 - 6.20   X106   
HEMOGLOBIN, ADULT   16.1   14.0 - 18.0   g/dL   
HCT   48.0   36.0 - 54.0   %   
MCV   92   80 - 100   um3   
MCH   30.9   26.0 - 33.0   pg   
MCHC   33.6   31.0 - 36.0   g/dL   
RDW   12.3   11.0 - 16.0   %   
PLATELETS   118   150 - 400   X103   A
MPV   9.1   7.5 - 11.7   um3   
WBC   4.6   4.0 - 11.0   X103   
NEUTROPHILS %   65.5   47.0 - 76.0   %   
LYMPHOCYTES %   20.0   12.0 - 44.0   %   
MONOCYTES %   10.9   0.0 - 10.0   %   A
EOSINOPHILS %   2.4   0.0 - 6.0       
BASOPHILS %   1.2   0.0 - 4.0   %   
NEUTROPHILS (ABSOLUTE)   3.02   2.00 - 7.50   #   
LYMPHS (ABSOLUTE)   0.92   1.00 - 4.00   #   A
MONOCYTES(ABSOLUTE)   0.50   0.20 - 1.00   #   
EOS (ABSOLUTE)   0.11   0.00 - 0.60   #   
BASO (ABSOLUTE)   0.06   0.00 - 0.20   #
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline tednlou2

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Re: New Member with Questions
« Reply #14 on: January 20, 2013, 03:50:42 AM »
Westside, it does sound like you're dealing with a lot of anxiety.  I am that person.  I fight it everyday.  It was much worse in the year after diagnosis.  And, anxiety causes so many physical symptoms.  I have anxiety disorder.  My therapist says PTSD is part of that.  Even before my dx, I had depression and was prone to thinking things were physically wrong.

As I said, it is something I fight.  I will notice my urine is foamy, and I will wonder whether something is wrong with my kidneys.  I will have dizziness, which could be my beta blocker, the virus, or anxiety.  I will wonder whether something is happening in my brain.  I've been experiencing some itchiness lately.  Even though it is winter, my mind will wander to lymphoma or liver issues.  Now, I do have non-alcoholic fatty liver disease.  And, my gallbladder always shows sludge on ultrasounds.  So, the itchiness could be liver related. 

That is the challenge with anxiety.  You aren't sure what to dismiss and what may be real.  When you're in this mindset, it is hard to dismiss things as normal.  Your mind always wants to go to the worse.  Something could be a real symptom of an issue, and you worry you'll dismiss it as nothing, because you're trying to not blame every normal thing on HIV, or something bad happening in your body.  In those who don't obsess about health, I suppose they would calmly wait to see if something persists, and then decide to see a doc.  With those of us who worry, it is difficult to calmly access the situation.  The other problem is when we bring up things to our docs that are just in our heads, then docs are more likely to dismiss a symptom down the road that may be significant. 

I do take Xanax daily.  My prescription is for 4mgs per day.  But, I usually don't take more than 1.5mgs.  I let refills expire.  I should probably take a little more than I do, to better control my anxiety.  I have never craved the drug.  I think I don't take more, because so many have acted like 1.5mgs is already a huge dose.  My therapist said he was surprised I could function.  He is great, but I don't think he's ever taken it.  Or, meds really affect him. 

Offline WestSide

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  • Posts: 39
  • Living and Learning
Re: New Member with Questions
« Reply #15 on: January 20, 2013, 03:57:17 AM »
I just want this information to be out there so that when I go to my appointment I can ask more of the right questions or not bring up questions I don't need to worry about.  The last thing I want to be is an irritating patient.  I brought a list last time I was in.  I want to make the most out of my appointments so that i don't have to worry when I am away from the doctor since I feel alone. 
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline mecch

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  • Posts: 10,781
  • red pill? or blue pill?
Re: New Member with Questions
« Reply #16 on: January 20, 2013, 06:55:59 AM »
Also, I still haven't heard if people feel like their healthy old selves after they start their meds and their counts improve.  Am I going to feel like crud the rest of my life?

If you want to, you can read back into threads, but why bother. Here's the info you need. 

People suffering HIV infection usually feel better when they start HAART. 

(Also, as you know,  we need the meds or we will die... Another point, of course.)

_______

Many people with HIV do feel run down and have all sorts of aches and pains, even when they are "healthy" - in other words - not suffering a distinct HIV-related problem.  The HAART often takes care of all that.

I felt completely run down before i started, but then again, I had a huge viral load. The next day, my body felt less under seige.  Within a week, I felt "more like my old self". 

But soon came to understand that was a wrong "feeling."  Let me explain. 

Stop thinking about the past.  Today is today. Tomorrow is what's coming.  Whether you are HIV+ or HIV-, the past is gone. You could feel fantastic next year, but its not "your old fantastic".   Its the you in 1 year.

Live for today and for tomorrow also.  There are so many things you can't change and one of them surely is that you cant recreate a past. Also, the past is not the reassuring, safe, good thing we always think it is, retrospectively.   

I understand you have an anxiety disorder so you'll have to pick and choose which things to worry about, somehow. 

Most people on HAART are very thankful for the drugs and many many people on HAART feel pretty good about their lives, health, bodies, and optimistic about the future.

« Last Edit: January 20, 2013, 08:17:41 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Ann

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    • Num is sum qui mentiar tibi?
Re: New Member with Questions
« Reply #17 on: January 20, 2013, 08:51:38 AM »
Hi West, welcome to the forums.


I have the burning pins and needles in my hands and feet.  Also my limbs fall asleep easily if I don't keep them in a normal position.



I have been dealing with depression since diagnosed and have started 5-HTP which is working for me but it isn't cost-effective.


Did the tingling and other (possible) neurological-type symptoms start before or after you started taking this supplement (5-HTP = a formulation of the amino acid L-tryptophan)? If it started after, it may be the supplement at fault.

Check out this website for further information.

Just because a supplement is purported to be "natural" does not mean it is "without possible side-effects". It sounds like you're experiencing several of the "initial symptoms" listed on their symptoms page (linked to in the left-hand column of their home page).


Also, I still haven't heard if people feel like their healthy old selves after they start their meds and their counts improve.  Am I going to feel like crud the rest of my life? 


I started my first ever combo of Prezista, Norvir and Truvada last July, after being poz since 1997. I have more energy, a better appetite, and little problems I've had for years like athlete's foot that I could never completely get rid of have finally gone away. No more flaky, dry skin patches on my face.

My CD4 count last Tuesday (Jan 15th, after six months of meds) went from pre-treatment numbers in the 3 and 400s, mid-20% to 1050, 34% - my highest ever numbers on both counts.

I don't yet have my VL result from Tuesday, but there's no doubt in my mind that it will be UD. In the blood draws I've had since initiating treatment it went from 30,900 (before first dose) to 414 (six weeks in) to 65 (fifteen weeks in). I'm quite sure I'm UD now (six months in).

While I can't say that I feel my "old healthy self" - like before becoming poz - I sure do feel a lot better. Keep in mind that I was fifteen years older when I started meds. I'm (just) over 50 now, so I'm quite sure natural ageing is the main thing stopping me feeling like "my old healthy self" when I was a 35 year old pre-infection spring chicken. I'm more of an old hen now. ;D



« Last Edit: January 20, 2013, 01:17:10 PM by Ann »
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"...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 Justme2012

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Re: New Member with Questions
« Reply #18 on: January 20, 2013, 10:51:32 AM »
I just found out last week that I was poz. My current BF took rapid test and it came back neg. He has blood test scheduled for Monday. Last person I was with is also neg. Then there is that ex, he cheated on me with numerous people, but can't get a hold of him. We ended on bad terms so he will never call back more than likely.
I just overwhelmed and still trying to process everything. I did more blood tests yesterday and have to wait two more weeks. I'm scared of those results as I was not expecting these results at all. Should I talk to doc about meds now or wait for those results? I can't even think about telling my parents. I'm an only child and know this will devastate them. I have been on a roller coaster ride of emotions and was up all night. Called off work today and my manager was stressing me out. All questions about why and can't you just come in a deal with it type of response. I had just been crying right before and know I sounded off. Just trying to gather my thoughts here and not have a complete emotional breakdown but I feel it coming anyway... I really just don't know what to do from here. Oh and at the same time I tested poz for herpes. Doc did tell me I caught HIV early so I guess that's a good thing.
1/19/13 tested poz
1/23/13 Cd4 339 VL 90
1/23/13 start Atripla
2/21/13 Cd4 553 VL undetectable

Offline texaninnyc87

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Re: New Member with Questions
« Reply #19 on: January 20, 2013, 12:38:59 PM »
just say no to webMD!
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD

Online Ann

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Re: New Member with Questions
« Reply #20 on: January 20, 2013, 01:20:22 PM »
Condoms are a girl's best friend

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"...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 texaninnyc87

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Re: New Member with Questions
« Reply #21 on: January 20, 2013, 02:06:25 PM »
I guess i'll have to explain...

I read JustMe's response and wrote a little note suggesting he open a new thread. then realized he already had but couldnt delete the post so i just quickly changed it to something generic that relates to not getting too into self diagnosing via the web cuz it only leads to trouble.
 :-[ :-[ :-[
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD

Offline WestSide

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Re: New Member with Questions
« Reply #22 on: January 20, 2013, 03:44:49 PM »
Hi West, welcome to the forums.

Did the tingling and other (possible) neurological-type symptoms start before or after you started taking this supplement (5-HTP = a formulation of the amino acid L-tryptophan)? If it started after, it may be the supplement at fault.

Check out this website for further information.

Just because a supplement is purported to be "natural" does not mean it is "without possible side-effects". It sounds like you're experiencing several of the "initial symptoms" listed on their symptoms page (linked to in the left-hand column of their home page).

Thanks Ann...  you are always very insightful.  No I have had these symptoms long before taking the supplement and my doctor is aware that I am taking it.  I just wish he could RX it.  So more than likely they will need to get me on some medication for my depression.

I sure am looking forward to feeling better.  I know I need to start working out to maintain muscle mass but I find it hard to drag myself to the gym.  I am also afraid of catching something because it's prime time flu season.  Is there anything special that an HIV+ person should do when they become sick to seasonal illnesses?  I have all my shots.  I make sure I wash my hands frequently but I feel like I am going to be a germaphobe until my cd4 counts get higher.
« Last Edit: January 20, 2013, 04:08:57 PM by WestSide »
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline WestSide

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Re: New Member with Questions
« Reply #23 on: January 20, 2013, 04:02:49 PM »
If you want to, you can read back into threads, but why bother. Here's the info you need. 

People suffering HIV infection usually feel better when they start HAART. 

(Also, as you know,  we need the meds or we will die... Another point, of course.)

_______

Many people with HIV do feel run down and have all sorts of aches and pains, even when they are "healthy" - in other words - not suffering a distinct HIV-related problem.  The HAART often takes care of all that.

I felt completely run down before i started, but then again, I had a huge viral load. The next day, my body felt less under seige.  Within a week, I felt "more like my old self". 

But soon came to understand that was a wrong "feeling."  Let me explain. 

Stop thinking about the past.  Today is today. Tomorrow is what's coming.  Whether you are HIV+ or HIV-, the past is gone. You could feel fantastic next year, but its not "your old fantastic".   Its the you in 1 year.

Live for today and for tomorrow also.  There are so many things you can't change and one of them surely is that you cant recreate a past. Also, the past is not the reassuring, safe, good thing we always think it is, retrospectively.   

I understand you have an anxiety disorder so you'll have to pick and choose which things to worry about, somehow. 

Most people on HAART are very thankful for the drugs and many many people on HAART feel pretty good about their lives, health, bodies, and optimistic about the future.

Thank you Mecch!  That information helps a lot.  :)
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline mecch

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Re: New Member with Questions
« Reply #24 on: January 20, 2013, 07:18:26 PM »
You're welcome.

Don't worry about not liking the gym/fitness center.  Try not to add big projects to the plate that will only stress you out.  Why not just do free and easily scheduled exercise like walking vigorously in the fresh air. Or depending where you are, riding bike, or swimming, etc. 

Doesn't sound like the gym is your cup of tea, so why bother?  Please yourself.

There is nothing special you need to do about cold/flu season, since you say you already have flu vaccine. Your cd4 isn't in danger zone.  Just wash hands like the advice to everyone.  If you get the flu, so be it. See your doctor if the flu gets worrisome.  Don't advance worry about sicknesses that may never happen. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WestSide

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Re: New Member with Questions
« Reply #25 on: January 20, 2013, 07:46:28 PM »
Thank you so much!
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline WestSide

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Re: New Member with Questions
« Reply #26 on: January 29, 2013, 12:27:11 AM »
Update...  Went to the ID doctor today.
We decided on Stribild.  I am going to pop my first one Friday night so I have the weekend to adjust to whatever is in store for me - hopefully nothing (crossing my fingers).  He started me on high dose Vitamin D 1/week too.  My B12 is in normal range.

Had the doctor check me for my neurological concerns.  He says everything seems fine.  The tests were rather practical and some were funny.   

I gave him some urine to test and he said that there is bilirubin in my urine so he took some more blood to check my kidneys and liver.  I am a little scared about that.  My next appointment to check up on me is on 2/11. 

Saw the therapist today and started on Effexor.  I forgot the stuff really dilates my pupils.  Hopefully that will help my anxiety disorder.  I'm not happy about starting it because ultimately I think it just suppresses what I need to work through but I am going to find a counselor to help me out.
« Last Edit: January 29, 2013, 01:38:39 AM by WestSide »
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Online Ann

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Re: New Member with Questions
« Reply #27 on: January 29, 2013, 06:52:56 AM »

Saw the therapist today and started on Effexor.  I forgot the stuff really dilates my pupils.  Hopefully that will help my anxiety disorder.  I'm not happy about starting it because ultimately I think it just suppresses what I need to work through but I am going to find a counselor to help me out.


A wise and accurate insight, but knowing that you have issues you need to work through shouldn't stop you from taking the med.

Med therapy, hand-in-hand with talk therapy, is the most effective way of treating anxiety disorders and study after study has shown this to be true.

While you're searching for a therapist, I recommend you find one who is adept at something called Cognitive Behaviour Therapy (CBT). It's a therapy that enables you to train yourself to stop the kind of thinking that contributes to anxiety. Many members here will attest to it's effectiveness. (Calling Ms PP to the courtesy phone!)

A grounding in CBT will likely mean that you won't need the psych meds forever. In the meantime though, they will (should) help.

Good luck! :)

Oh, and good luck with the Stribild this weekend too.
Condoms are a girl's best friend

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"...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 WestSide

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Re: New Member with Questions
« Reply #28 on: January 29, 2013, 10:17:12 PM »
Thank you so much Ann!  I appreciate your advice.
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline mobileballs

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Re: New Member with Questions
« Reply #29 on: January 30, 2013, 11:35:22 PM »

I started my first ever combo of Prezista, Norvir and Truvada last July, after being poz since 1997. I have more energy, a better appetite, and little problems I've had for years like athlete's foot that I could never completely get rid of have finally gone away. No more flaky, dry skin patches on my face.


Ann, You and I have the same combo.  My story is here somewhere so you can read.  Since I have been on meds I feel like a completely different person now.  All the little problems I was having went away which includes nerve pain in my arms and legs.  Now, I am not saying the HIV contributed to the nerve issues but it did start when I got shingles the first time.

One positive thing about my meds - It really has helped me organize the way I take care of myself.
I used to be an adventurer like you but then I took an arrow to the knee.

Offline WestSide

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Re: New Member with Questions
« Reply #30 on: January 31, 2013, 12:13:55 AM »
That's great to hear.  I am looking forward to starting this Friday.  I can't wait to feel better and on the edge of feeling like I will get sick.  I feel like such a germaphobe right now too because everyone around me has the flu or the norovirus.  I have been keeping myself away from people as much as I can because I don't want that to interfere with me starting my meds.  I keep staring at the bottle and thinking that 2/1 will be the day I take a pill the same time every day for the rest of my life.  I am thinking I will take it with my last meal of the day in private and hopefully I will be fine to sleep on it.  I told my doctor my plan and he seems fine with it.  Thank you for your comments mb.
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Online Ann

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Re: New Member with Questions
« Reply #31 on: January 31, 2013, 08:31:15 AM »
Ann, You and I have the same combo.  My story is here somewhere so you can read.  Since I have been on meds I feel like a completely different person now.  All the little problems I was having went away which includes nerve pain in my arms and legs.  Now, I am not saying the HIV contributed to the nerve issues but it did start when I got shingles the first time.

One positive thing about my meds - It really has helped me organize the way I take care of myself.

Good to hear. :)


I feel like such a germaphobe right now too because everyone around me has the flu or the norovirus.  I have been keeping myself away from people as much as I can because I don't want that to interfere with me starting my meds. 


The best thing you can do to prevent catching either the flu or the norovirus is to wash your hands regularly and keep them away from your face as much as possible. Rubbing your eyes or putting your fingers in your mouth after you've touched something someone with the flu or norovirus has touched with unwashed hands can lead to infection.

This time of year when these viruses are making the rounds I carry a small bottle of antibacterial hand gel with me when I'm out and about and use it regularly. One thing that makes me paranoid (and I'm no germophobe, believe me) is the handles on shopping carts. Too many times I've seen someone coughing or sneezing into their hand and then grabbing the cart handle immediately afterwards. Ick! :P
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 WestSide

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Re: New Member with Questions
« Reply #32 on: February 01, 2013, 12:03:13 AM »
I hear ya.  I am doing my best to keep my hands away from my mouth or at least make sure I wash my hands before I do.  It's so hard since I am a nail biter. I am going to have to change my ways for sure.  I do like how grocery stores do have antibacterial wipes for carts now - or at least the store I go to.  =)
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline WestSide

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Re: New Member with Questions
« Reply #33 on: February 02, 2013, 12:51:57 AM »
Just downed my 1st Pill for HIV.  Felt like writing since I have no one else to talk to or explain my experience to.  I was all nervous and excited today.  I'm so tired of the aches and pains and the flaky skin.  In my mind I think and wonder how everyone else handles their meds.  I keep thinking about situations where you might lose your meds or you may be away from them or they may get ruined.  I suppose that is only natural.  I guess I should store them in different places so that I always have access to them.  I've never had to take a medication where you could never skip a dose or have to take it close to the same time every day.
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline tednlou2

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Re: New Member with Questions
« Reply #34 on: February 02, 2013, 01:49:06 AM »
Congrats on the first dose.  I say that, because as long as I've had to prepare myself, I worry I will be a big baby when I take my first dose. 

Let us know how the first day and weeks go.  All the best! 

Offline WestSide

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Re: New Member with Questions
« Reply #35 on: February 02, 2013, 02:10:28 AM »
Thanks for the reply!  I will definitely post updates.
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline WestSide

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Re: New Member with Questions
« Reply #36 on: March 07, 2013, 04:40:42 PM »
Got my test results today:


30 Days on Stribild:


Went from 25,700 VL to just 24
CD4 from 389 to 570.

All my blood tests came back normal but my ALT is at 76 and PLT is at 128.
I will see my doctor on 3/11 to discuss my test results.

I wonder what he will have to say.  Has anyone had an issue with their liver enzymes being at this range?  Do your blood platelets stay low with HIV?


Thank you!
« Last Edit: March 07, 2013, 04:50:16 PM by WestSide »
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline Oneday/undia

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Re: New Member with Questions
« Reply #37 on: March 10, 2013, 07:49:06 PM »
With any of these drugs I am just worried about how they will effect my organs.  I am also worried and hope that I will be able to function at work when I do start.  The one thing I don't see posted on here is the window of taking your meds.  I mean do people take their meds exactly the same time every day to the minute or do people vary day to day within a few hours?  I was wanting to take my meds at bedtime to reduce any side-effects but after reading it may be better to take them at lunch. 
[/quote]

I have been on meds for 4 years and never have any side effects and i just switch to stribild 3 moths ago and is working great.i also take cymbalta for depression. I take both in the morning during the week i usually take it at the same hour but not in the weekends that would depend at what time i wake up. So far no problems and they being working great
Positive nov/08. Vl 15,000 cd 400
12/08 start treatment ( norvir, truvada,reyataz)
07/12 und/cd 575/42%
12/12 start Stribild
01/13 one month on stribild cd 715/35 %
2/13 725/47% UND
08/13 709/45% UND

Offline WestSide

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Re: New Member with Questions
« Reply #38 on: March 13, 2013, 09:02:56 PM »
My doctor said the platelets is related to HIV and may get better over time I think.
As far as my ALT - he wants to order a more conclusive test for Hep C.  I sure hope I don't have that.  He said the HIV can sometimes give you a false negative with the antibody test so thee is another test  out there that can help rule this out.  I just think I have a sensitive liver.  My enzymes have always increased if I take any medications but we shall see in a month what else there is to report.  I take Effexor for my depression and anxiety
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Offline jkinatl2

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Re: New Member with Questions
« Reply #39 on: March 14, 2013, 02:03:18 AM »
My doctor said the platelets is related to HIV and may get better over time I think.
As far as my ALT - he wants to order a more conclusive test for Hep C.  I sure hope I don't have that.  He said the HIV can sometimes give you a false negative with the antibody test so thee is another test  out there that can help rule this out.  I just think I have a sensitive liver.  My enzymes have always increased if I take any medications but we shall see in a month what else there is to report.  I take Effexor for my depression and anxiety

HIV can only give you a "false negative" if you test before your body produces antibodies - before three months. The tests are actually skewed towards heightened sensitivity- meaning you are mor likel to get a false negative, which a Western Blot would rule out.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline WestSide

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Re: New Member with Questions
« Reply #40 on: March 14, 2013, 11:56:44 PM »
I know that about HIV but are you saying that pertains to the HEP C as well?

06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

Online Ann

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Re: New Member with Questions
« Reply #41 on: March 15, 2013, 09:55:57 AM »
I know that about HIV but are you saying that pertains to the HEP C as well?


Most people will seroconvert and test hep C antibody positive within three months, just like with hiv.

The only times where hiv and hcv have been seen to lengthen one or the other's window period has been in people who were long-term "recreational" drug injectors.

They not only had previously depressed immune systems due to their long-term drug use (and the health and living conditions that often go hand-in-hand with injecting drug use)...

...but they also acquired BOTH hiv and hep C at the same time from using (sharing) a needle after someone who was hiv/hcv coinfected. There have only been a handful of documented cases like this.



He said the HIV can sometimes give you a false negative with the antibody test


I've never heard of hiv causing someone to falsely test hep C antibody negative other than in the type of situation I outlined above concerning IDUs.

Someone can "falsely" test hcv antibody negative when they've tested too early in the window, but that's not due to hiv in circumstances when the two viruses were acquired at different times.

If a person did acquire both at the same time, once they'd started testing antibody positive for one, they'd most likely be testing antibody positive for the other as well.



Your doctor is likely talking about doing a hep C viral load test on you. Normally these are only used once a person has tested hep C antibody positive. (Don't panic - he may just may be a little overly pro-active/cautious.)

If you have further questions about what tests your doctor has run and why he's planning on running more tests, you really need to ask him. Don't be afraid to question your doctor about what tests are being run and why, and what the results mean for you personally.

It's important to have these discussions. If you're new to communicating with doctors on more than a superficial manner, don't worry, you'll get used to it. It's imperative you have a good two-way relationship with your doctor.



Some people (an estimated 20% or so) will clear the hep C virus on their own, but they will always test hep C antibody positive.

The way to find out if the person has been infected in the past and clear the virus themselves, or has been infected and has NOT cleared the virus, is through VL testing.

Someone who has cleared the virus will not have a detectable viral load. (but will still test hep C antibody positive)

Someone who has NOT cleared the virus and has a chronic infection will have a viral load.

It's not uncommon for a person with a chronic infection to have an hcv VL in the hundreds of thousands or even tens of millions. (The typically extremely high viral load is one of the reasons why hep C is so much, much more communicable than hiv.)
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Offline WestSide

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  • Posts: 39
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Re: New Member with Questions
« Reply #42 on: March 15, 2013, 11:29:41 PM »
Wow Ann.  Thank you for all that helpful information!  Now I can make sense of it the next time I go see him.  We have to get rid of a planters wart.  He is freezing it but I think he really wants to send me to a Podiatrist to cut it out.  I wonder how I could tell if freezing is working?
06/10/13 CD4 611 % 40.3 VL UD / CD8 493 % 32.5
03/07/13 CD4 570 % 38.8 VL 24 / CD8 634 % 43.1
02/01/13 Started Meds: Stribild
01/07/13 CD4 389 % 42.3 VL ?   / CD8 407 % 44.2
12/10/12 CD4 264 % 31.6 VL 25.7K

Age: 41
Race: White (Italian/Welsh)
Orientation: Gay
Location: NW USA

 


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