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Author Topic: Sometimes Hope is enough  (Read 12460 times)

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Offline HIV? poz about being neg

  • Member
  • Posts: 158
Sometimes Hope is enough
« on: January 28, 2007, 03:18:14 PM »
HI I am a gay male who has never bottomed, I have only ever been a Top. I almost always use a condom but have had occasions where i did not.
recently i was traveling in Mexico for two weeks in a three week period. and began developing what seemed as a sun rash on my shoulders and chest. When i returned the second time to Mexico the following time the rash slowly progressed. small reddish marks. When i returned from Mexico the rash became more severe. and i began to get the chills mild fever and my throat became inflamed white pussy tonsils it burned to eat and drink. I went to the Dr. he prescribed Biaxin a very strong antibiotic. The rash vanished in a day the rash was present for almost 4 weeks. (my Dr first though Scarlet Fever and then Dengue Fever. I began getting extreme headaches in the morning and my back was extremely sensitive to touch. While I still had these flu like symptoms my Dr ordered an HIV test. The test results returned and I Tested reactive for Antigen, I tested Reactive For the EIA and the supplemental. But i tested nonreactive for the Western Blot. According to my Dr this still is a negative test.
So I am now getting a 2nd test done including another Western Blot and a PCR.
Professionals or anybody with some knowledge or similar experience please help I am freakin out. Also I have now started having severe night sweats that started after all the other symptoms subsided.
That's how it started: well after 3 tests and several very encouraging and hopeful comments from the monitors of the Am I infected forum. The results finally arrived January 24th and my Dr. informed me that I was HIV positive my VL:>100000
I had already did all my crying waiting for the results that I really didn't need to anymore. I'm doing well and I'm alot stronger then the person I was on the am I infected forum. I woke up I think.
I have had abunch of routine blood and urine tests and have not got them back yet to decide what treatment if any would be needed at this time.
But what I have decided is that I am going to take any steps I can to fight this virus. I am on one a day vitamins 2 caps per day. Cal'dophilus 3 caps a day befor each meal. Calcium 1000mg and 280 iu of vitamin D.
50mg of zinc.  800iu of vitamin E.    40 drops of bio-strath 2 times a day.
50 drops cats claw 50 drops twice a day.   9000mg of Cranberry.  2000mg of Garlic.
1000mg of Salmon oil.   1000mg Flaxseed.  4000mg of vitamin C.   5000mg of Echinacea.   30mg of Coenzyme q10.   10000 iu of vitamin A.   400 mg of Selenium.
one Cap of Red reishi. and one Cap of Pua d'arco bark. 

Any ways I am coping extremely well since the news on 4 days now and the world seems to have changed alot for me. Things feel diffrent alittle sadder. alittle bit strange. I look at myself in the mirror to see if I can tell if I'm positive. I'm sure you know what I mean it's almost like going back to those days befor I came out about being gay. Thanks Anne Rapid 411 CC Andy all of you for all your support.

I know I can do this.
 



 
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline AustinWesley

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  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Sometimes Hope is enough
« Reply #1 on: January 28, 2007, 04:20:16 PM »
Hey there,

Sorry to hear your news.   I went through a similar ordeal when I was diagnosed last March.   Probably most of us here can relate.   It sounds like from the mixed intial results you were probably seroconverting when they did the first tests.   I've heard that VL can often be very high when you are first diagnosed especially if you just contracted the virus.

Do you know what your CD4 (Tcell counts) is?   

Initially, I went through an emotional rollercoaster, but being diag. early is key to staying healthy.   It's been a year later for me now and I'm still not on any meds.   I had a lot of the symptoms you talked about including the night sweats and even hives.  Those all went away.  The only symptom I mainly notice is a fatigue.

There was a recent study that indicated selenium does seem to help lower the virus and increase t cells.   I just started taking it about a week ago and I noticed I was feeling more energetic.  I don't know bout all those other supplements you are taking.  You may want to make sure they don't screw up any lab tests right now.   

I know that feeling of looking in the mirror and paranoia.   I am still occasionally overly hypochondriac ; )   The main advice I would have is to find the best HIV doctor in your area and one that will answer all your questions.  That was a big relief when I finally heard that I wasn't going to die and I could live a fairly normal and healthy lifespan.   Although, like you I initially had all those horrible and frightening symptoms and was physically and emotionally exhausted.   Not everyone has that reaction.   

Ironically, there have been some studies that suggest the people who get the symptoms from seroconversion live longer and do better.  Least that's what some say.   

Right now, we are in uncharted territory because of these relatively new drugs.    People aren't dying like they were 25 years ago.  In fact, my doctor pointed out there is now only one hospice left in the city I live in whereas 15 years ago they had dozens.

You can live a normal life and be happy if you choose to.   I'm sure you will find a LOT of support on here as well.   I wish I'd known about this site when I was diagnosed.   Don't take everything you read too seriously on these sites though. 

If I could give you some advice it would be to retain a sense of normalcy in your life.  Don't go charge up a bunch of credit cards or any of that.  : )  You'd be surprised how many people have done that thinking they were gona die. 

Holler at me if I can help answer any questions and I'm sure you'll find a ton of other support too.   I have an HIV discussion group on Myspace if you have an account there as well.

Hang in there.  You are gona be fine.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline HIV? poz about being neg

  • Member
  • Posts: 158
Re: Sometimes Hope is enough
« Reply #2 on: January 28, 2007, 04:41:00 PM »
Thanks for your reply. I do not no my CD4 count yet that's one of many I'm waiting for. I'm in Vancouver Canada and am scheduled to see a very great Dr.
Dr Julio Montaner is apparently a very well known Dr. world wide.
And about racking up the credit cards that was me befor all this started.
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Sometimes Hope is enough
« Reply #3 on: January 28, 2007, 04:48:34 PM »
Well, you guys have socialized medicine as I understand it so at least you won't have the stress of dealing with the possibility of financial ruin or no assistance like so many people in the US face.   



Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline koi1

  • Member
  • Posts: 713
Re: Sometimes Hope is enough
« Reply #4 on: January 28, 2007, 06:11:12 PM »
I am sorry to hear about your positive status. I am three months into the game, and I can tell you it does get better. The labs are very important to determine where you stand healthwise. I would be careful with all the natural medecine you aret taking. Echinacea for example should not be taken for more than two weeks at a time, since after that it becomes immuno-suppressive. Read carefully on the rest of the things you are taking and tell your doctor about all of them.

I went to talk to a herbalist and we both decided that I would start natural medicine after my liver enzymes return to normal and the medications have had some time to work. Again you need the labs to determine where you are.

Much luck, and I hope your labs mean that you will be healthy for a long time to come without meds. Welcome to a support group that helped me out a lot during my initial days. I hope you will have the same great experience with a lot of the people on this forum.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline rick21007

  • Member
  • Posts: 286
Re: Sometimes Hope is enough
« Reply #5 on: January 28, 2007, 07:43:05 PM »
Hey---Sorry you are a poz but happy you are here, and in good company.  I tested positive on Dec. 11th myself so what you are going through is pretty fresh in my memory.

I am fortunate enough to have a fantastic hiv doctor---she taught hiv treatment protocols at the national center for AIDS research and education in San Francisco before coming here (may not be the exact name but connected to UCSF Medical School.)  Anyway she is a sweetheart.  I had my first appt. with her last week.  I also go to a naturopathic physician and take supplements (Good Lord, not as many as you though.)   My hiv doc and naturopathic physician agreed to work together and communicate at my request so we are all on the same page.

Believe it or not having hiv does not feel like front-page news after a while.  You learn to do what you need to do to stay healthy.  I think it changes your priorities for the good and at least for me helps me stay focused on what is important in my life. I went back to working out at a gym every day and am probably healthier than ever right now-----this after a good year of being sick most of the time with acute hep-B which I kicked and a nasty OI that wasted me for a couple of months.  Could never have been in the good place I am now without the love and support of some special people though----one of whom just died of cancer a week ago, and left me feeling grateful for the days I have been given to walk this earth and the resolve to live my life to the fullest.

I sure wish you the best.   Rick

Offline rick21007

  • Member
  • Posts: 286
Re: Sometimes Hope is enough
« Reply #6 on: January 28, 2007, 07:53:52 PM »
Wesley--how much selenium are you taking?  I started selenium about a month ago, and am taking 600mgs a day. (dosage recommended by my naturopathic physician)  Have the endorsement from both my hiv doc as well on this.  I thought the research around selenium and hiv was pretty compelling but of course wont get the endorsement of the drug companies because they can't make a dime on it.  I was a little surprised by how few people take it from what I can gather though.

Rick

Offline AustinWesley

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  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Sometimes Hope is enough
« Reply #7 on: January 28, 2007, 08:02:11 PM »
Hey Rick,

If you had acute Hep B you should now have fought it off successfully?   I had it 10 years ago, but I understand many who are tested positive often have Hep B at the same time.  That scare 10 years ago kept me from risky behavior until I had a lapse in judgement a year ago and ended up with HIV.

At the time with the Hep B there was less known about it and I was hearing horrible things which were inaccurate and never happened.   At the time I was 26 and it scared me enough to stop drinking for a good year or more.   I recall at the time all the tests that I went through and misinformation I was given.   I also recall doctors telling me I would likely develope liver cancer etc and it was almost worse then the whole HIV ordeal.   However, when I tested positive they did all the Hep tests and mine came up negative as if there was no trace.   I was like what?  I even recall at the time for that ordeal the doctors were checking my liver enzymes and the specialist looked at me and said I had counts that were off the charts and he'd never seen anyone with such bad numbers who wasn't in ICU and told me "You must have one Hell of an immune system."   Luckily, I did everything right I guess cause it was over and done with.  

I've talked a lot about my HIV status, but I was kind of ashamed to mention this prior ordeal cause I thought oh no everyone will think I must be way promiscous or what not.  Now I hear of so many people with dual diagnosis and I am just glad I didn't have to battle both at once.  To this day they have to run some special test to get the Hep B to even show up.  I forgot what they called it.   But, I know I kept bringing it up as I was worried it would be potentially a liver problem, but according to all the tests my liver is functioning perfectly and better than most half my age.   That stunned me.

So, just a bit of advice.  I know I got off track, but if you do test pos. for HIV make sure they do all the other STD tests so you don't compromise any future treatments or options.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline fondeveau

  • Member
  • Posts: 425
Re: Sometimes Hope is enough
« Reply #8 on: January 28, 2007, 08:02:44 PM »
I take the selenium 200 mg.  

Faith, Hope and Love - somewhat maudlin when used at a wedding, but truly three things that endure and that will see you through your experiences as HIV+.

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Sometimes Hope is enough
« Reply #9 on: January 28, 2007, 08:21:19 PM »
Wesley--how much selenium are you taking?  I started selenium about a month ago, and am taking 600mgs a day. (dosage recommended by my naturopathic physician)  Have the endorsement from both my hiv doc as well on this.  I thought the research around selenium and hiv was pretty compelling but of course wont get the endorsement of the drug companies because they can't make a dime on it.  I was a little surprised by how few people take it from what I can gather though.

Rick

Hey Rick,

How funny!   I had just replied to your other comments and then read this.   I had to go check the bottle.  I've been taking 400-600 mgs. of the Selinium for about a week.   Since I'm not on meds and my counts have remained still above that recommended criteria I figured it wouldn't hurt.   I'm not a huge drinker like I used to be, but did have a few last nite at dinner with a friend.  Normally, the hangovers really affect me more now, but I didn't have one at all today.  I am starting to think this stuff does have some real potential.

Previously, a few labs back when I was in a horribly stressful relationship my counts plumeted and I attribute it to the stress.  In addition, I'd gained some extra weight and my cholesterol was borderline high as well as my blood pressure.  By just getting rid of the crappy boyfriend my viral load actually dropped, my cholesterol and blood pressure both dropped to low/normal and my cd4 count dropped from 409 to 408.   I am a strong believer that eliminating stress is a major asset in this.   In my case it happened to be getting rid of the crappy boyfriend.   However, since I lost about 20lbs and have improved my diet so I want to see my new tests cause I'm certain they are back to perfect.

Granted, I still drink and smoke and I don't exercise at all.   I am certain my diet and reduced stress were the reason I had such improvements.  I do intend to ad exercise back in and may quit smoking as well, but I think it's important to do things as you are able.  You don't want to try to do too much at once and throw your body into shock.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline trellium

  • Member
  • Posts: 95
  • stArk raving Borg
Re: Sometimes Hope is enough
« Reply #10 on: January 29, 2007, 01:16:18 AM »
hiya all

just wanna clarify 1 milligram  (mg) = 1000 microgram  (mcg)

0.2mg = 200 mcg

http://www.convert-me.com/en/convert/weight

the recommended daily dosage (upper limit) for Selenium is 200 mcg and not 200 mg
taking too much (more than 400 mcg) of it daily will cause poisoning and prolly leave a metallic taste in the mouth according to most reports

too much of it isn't always a good thing

Offline HIV? poz about being neg

  • Member
  • Posts: 158
Re: Sometimes Hope is enough
« Reply #11 on: January 29, 2007, 02:33:41 AM »
Thank you guys all for all your information I will have to wait as I said for my Dr to tell me what sort of treatment if any I need but I just figure trying these things can't hurt in the meantime. Any ways is there any body changes or functions that will change or that could that I should be aware of or watch out for?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Sometimes Hope is enough
« Reply #12 on: January 29, 2007, 01:35:49 PM »
First off thanks T for correcting me on the selenium dosage.  You are correct.

As for things to watch out for that's a good question.   Mainly, anything like thrush or any type of opportunistic infections.    You don't want to let those get out of hand.  Try to keep your stress level in check.   I let mine get out of control initially and made myself sick with stress and rage.   I wasn't sleeping and lost 14lbs in 10 days and was online 24/7 reading all the horrible side effects etc. and not eating.   Don't make my mistakes.

Your doctor should be doing a liver panel.   My only concern is that all those vitamins and supplements you are taking could throw off your numbers on some of that.   If they do suggest meds they'll want to keep check of your cholesterol and liver functions.   I don't know what effect so many supplements would have or not.

Not trying to cause worry or added stress, just think it might be better to be a little more moderate especially while they are doing all the initial testing so you get the most accurate results possible.

Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline HIV? poz about being neg

  • Member
  • Posts: 158
Re: Sometimes Hope is enough
« Reply #13 on: January 29, 2007, 02:36:52 PM »
Thanks Austin I actually started taking the supplements after my blood and urine work. I have not got the tests back yet. And after reading your post I decided to lower the intake for now to a more moderate level thank you.
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline rick21007

  • Member
  • Posts: 286
Re: Sometimes Hope is enough
« Reply #14 on: January 29, 2007, 05:50:53 PM »
 

Faith, Hope and Love - somewhat maudlin when used at a wedding, but truly three things that endure and that will see you through your experiences as HIV+.
[/quote]

Just as saccharine-sounding as a Helen Steiner Rice greeting card, but right-on nevertheless!!!  ;D

Offline rick21007

  • Member
  • Posts: 286
Re: Sometimes Hope is enough
« Reply #15 on: January 29, 2007, 05:57:55 PM »
Wesley--yes,  I am negative for hep-B now.  Liver panels have all been normal since July.  BTW I did not start taking supps until my liver functions were normal.  Am pretty sure I was infected with hiv and hep-b at the same time.  Experienced the seroconversion reaction prior to my having symptoms of acute hepatitis.

Rick

Offline HIV? poz about being neg

  • Member
  • Posts: 158
Re: Sometimes Hope is enough
« Reply #16 on: February 02, 2007, 02:58:15 AM »
OK so i really haven't slowed down all the herbs and vitamins I have been taking I have actually added to them I am now taking olive leaf extract 500 mg twice a day Curcumin turmeric 500 mg twice a day and lickerish extract 300 mg twice a day. I have not got my blood or urine tests back from the Dr. yet it really seems to take along time for this stuff.
Any ways I feel great not tired nothing been working 15 hour days and all.

I did talk to my Dr and he told me most people don't start treatment immediately that they wait for hiv to start winning the battle I don't understand why?

I have read articles on the internet that state that if you catch hiv early enough and start treatment early that it is beneficial and that in some cases it can era-ticate hiv completely is this true?

so with the stuff i mentioned above i am currently also taking one a day vitamins 2 caps per day. Cal'dophilus 3 caps a day befor each meal. Calcium 1000mg and 280 iu of vitamin D.
50mg of zinc.  800iu of vitamin E.    40 drops of bio-strath 2 times a day.
50 drops cats claw 50 drops twice a day.   9000mg of Cranberry.  2000mg of Garlic.   1000mg Flaxseed.  8000mg of vitamin C.   5000mg of Echinacea.   30mg of Coenzyme q10.   10000 iu of vitamin A.   400 mg of Selenium.
one Cap of Red reishi. and one Cap of Pua d'arco bark.


« Last Edit: February 02, 2007, 03:12:40 AM by HIV? poz about being neg »
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Sometimes Hope is enough
« Reply #17 on: February 02, 2007, 03:19:01 AM »
Yeah, waiting is a huge part of this.  Don't panic, all of us have to wait for various tests etc.

You will here a LOT of different opinions on when to start meds.   There are a couple other threads starting on the topic going on right now.  The truth is NO one has a correct answer.   There are a lot of facts and the pros and cons to be weighed.   I've been online a LOT lately reading (NOT JUST ON HERE) information and the most current articles I can find.   

You should make certain to keep an accurate list of all of your supplements to bring in to your doc. case they ask.   At least I would.

My personal opinion is that regardless of HIV status making too many drastic lifestyle changes at once can throw anyone's body into shock.   I've gradually adapted to some healthier lifestyle changes slowly.   I've not seen much benefit from any of it thus far, but no detriment either.

Make sure to read on other sites and don't just take anyones random advice including mine.   I've just about reached a burnout point on this site because many topics end up running in circles.

Take what you need and leave the rest!

If you find something elsewhere and bring it here sometimes there are some people who will respond and give your their take or experiences so that can be helpful.

I've found this site is primarily used for entertainment which can be a nice distraction from time to time too ;)
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Online RapidRod

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Re: Sometimes Hope is enough
« Reply #18 on: February 02, 2007, 04:45:13 AM »
HIV?, I hate to pop the bubble, but you can take all the supplements and vitamins that you can safely take and don't over do it. You can do more harm with some supplements and vitamins if your body does not require them. Leave it to the doctor to tell you what you need to supplement your system with if you need anything at all. HIV?, if you just started taking all those vitamins and supplements back off until you have discussed it with your doctor. All the supplements and vitamins in the world are not going to eradicate hiv.  This is one thing you can assure yourself of, until they come out with a cure. Most Dr's. will not start suggesting meds until your CD4 level has a range below 350, that is the reason for all the blood tests they do to tract how your body is reacting. Some of us have gone years without having to start meds and others have started within a year. This is depending upon your lab results. With good results, you may only have to visit your doctor two or three times a year at the on set. I wouldn't worry to much about it. 

Offline Coffeechick88

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Re: Sometimes Hope is enough
« Reply #19 on: February 02, 2007, 06:56:52 AM »
OK so i really haven't slowed down all the herbs and vitamins I have been taking I have actually added to them I am now taking olive leaf extract 500 mg twice a day Curcumin turmeric 500 mg twice a day and lickerish extract 300 mg twice a day. I have not got my blood or urine tests back from the Dr. yet it really seems to take along time for this stuff.
Any ways I feel great not tired nothing been working 15 hour days and all.

I did talk to my Dr and he told me most people don't start treatment immediately that they wait for hiv to start winning the battle I don't understand why?

I have read articles on the internet that state that if you catch hiv early enough and start treatment early that it is beneficial and that in some cases it can era-ticate hiv completely is this true?

so with the stuff i mentioned above i am currently also taking one a day vitamins 2 caps per day. Cal'dophilus 3 caps a day befor each meal. Calcium 1000mg and 280 iu of vitamin D.
50mg of zinc.  800iu of vitamin E.    40 drops of bio-strath 2 times a day.
50 drops cats claw 50 drops twice a day.   9000mg of Cranberry.  2000mg of Garlic.   1000mg Flaxseed.  8000mg of vitamin C.   5000mg of Echinacea.   30mg of Coenzyme q10.   10000 iu of vitamin A.   400 mg of Selenium.
one Cap of Red reishi. and one Cap of Pua d'arco bark.



No, all the meds in the world or supplements will not completely eradicate HIV.  Those articles you read are mistaken.  Perhaps you are reading about how the meds can make you undetectable in terms of viral load?  That still doesn't mean the HIV is gone from your body-the virus is there reproducing all the time, plus there are other reservoirs in the body where the virus can be found.

I would suggest you follow up with a doctor knowledgable about supplements--such as your regular doctor, a naturopath, or the like.  They can help you with what supplements you might need, what levels, etc.  You can get too much in terms of supplements--just because they are natural doesn't mean they don't have risks.  Also some supplements are "snake oil"--you can hear outrageous claims about some that have no basis.  Have someone give you guidance on what is worth taking and how much.

As for the other tests, what will be suggested really depends on what they say.  You may very well be able to go a while without starting meds (generally they will start talking meds when you start to get below the 350 range).  If your labs look better, then they will basically track you at regular intervals with your CD4 and viral load--looking for downward trends and the like.  You may be a lucky one who can go years without meds.  I wasn't one of those, but I know several people on this board who have and we all handle HIV differently.
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline Andy Velez

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Re: Sometimes Hope is enough
« Reply #20 on: February 02, 2007, 07:57:41 AM »
POZ, while I am sorry you've ended up on "this side of the aisle," nevertheless I'm glad we're here to welcome you.

Getting the right doctor with whom you can develop a good working partnership to keep you healthy is essential, so it's good to read that you're already making that happen.

Right now the reality of living with HIV is still new and perhaps at moments (or more than moments) overwhelming. You don't have to learn everything all at once. Gradually you're going to become familiar with a lot of information which will be useful to you. Give yourself time to get adjusted to this new reality in your life.  Obviously it's an important part of your life, but it isn't going to be all that your life will be about.

Read the lessons on this site, not the least of which is the one about disclosure issues. Take your time dealing with that too.

Explore the various sections of the Forum. It's not a test so you don't have to take it all in right away.  You're always welcome here to ask questions and to discuss anything that's on your mind.

And welcome.



You're always welcome here   
Andy Velez

Offline Ann

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Re: Sometimes Hope is enough
« Reply #21 on: February 02, 2007, 09:08:30 AM »
Hpabn,

I want to chime in here with a warning about all those supplements you are taking. For instance, the vitamin A. You will probably already be getting that in the one-a-day vitamins you are taking. The extra vitamin A you are taking is at the upper limit, so you are taking far more than you should. Excess vitamin A, along with most other vitamins taken to excess, can be harmful and even fatal. The Tolerable Upper Intake Level (UL) for vitamin A, for a 25-year old male, is 3,000 micrograms/day, or about 10,000 IU, which is what you are taking as a supplement, in addition to your one-a-day multivitamin.

BE CAREFUL WITH SUPPLIMENTS!!! More is not always better. Also, if you are taking two of the multi-vits a day, you should take them twice a day, spread out, instead of both at once. I do this. When you take them both at once, not only do you run the risk of toxicity, but you also waste much of it because your body will simply excrete the excess of many of the vitamins. Others will hang out in the body, potentially causing damage.

And that echinacea you are taking - it isn't recommended for people with hiv.

If you want to take supplements, please be sensible about it and do your homework on them. A good place to start is here in the Nutrition Forum. Be Careful!!! I cannot stress that enough. We don't want you becoming sick from overdosing on vitamins. Really speaking, if you are eating a well-balanced diet, you don't need to add all that much in, especially when it comes to things like Vitamin A, which is readily available in milk and eggs.

Seriously, you scared the crap outta me when I read your supplement list! ::) ;)

As for the question of when to start the hiv meds, you may also want to start doing your homework where this is concerned. Read through the
Welcome Thread, where in the first post you will find links to other sections of the website, like the Lessons. (This is a different Welcome Thread to the one you may have read in the Am I forum) In the Lessons, there is a section that discusses when to start treatment.

For myself, I don't like to see people go on the meds too early. There are no hard and fast proven data to support the hit hard, hit early school of thought. You may be able to go for years without going on the meds. The meds carry restrictions to your lifestyle (ie adherence issues), both short and long-term side effects and a daily reminder of your status, among other concerns. I'm approaching ten years positive and I'm not yet on meds. I thought this year might be the year, but my CD4s reversed their downward trend and I think I may get another few med-free years, which makes me very, very happy.

There is no reason right now for you to rush into taking the meds. Read up on them, ask questions both here and of your doc, and make an INFORMED decision. I hope you also decide to take this approach to those supplements you are taking. One of the rules of medicine is "first, do no harm."

Again, I can't stress enough that you need to be careful about those supplements. Your body is busy working on adjusting to your hiv infection and bringing it under control. You don't want to add further stress to your body by overloading it with vitamins and whatnot that it will have to take energy to deal with. By all means use supplements, but don't put yourself at a disadvantage by taking too much.

Hang in there, it does get better.

Hugs,
Ann
xxx
 
PS... check your PMs.
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 Ann

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Re: Sometimes Hope is enough
« Reply #22 on: February 02, 2007, 09:42:03 AM »
Here's some additional information I've found - your vitamin A intake has got me a little concerned.

Quote
Extra vitamins in the diet can be harmful, especially when taken as supplements. Overdoses of fat-soluble vitamins are particularly dangerous because the excess will be stored in the body rather than excreted, increasing the risk of toxicity.
For example, high doses of vitamin A are toxic and increase the risk of birth defects. Additionally, vitamin B-6 can cause irreversible nerve damage when taken in large overdoses. Now that's not good at all.

link and more info

Quote
Hypervitaminosis A refers to high storage levels of vitamin A in the body that can lead to toxic symptoms. There are three major adverse effects of hypervitaminosis A:

1. Birth defects
2. Liver abnormalities
3. Reduced bone mineral density that may result in osteoporosis

Toxic symptoms can also arise after consuming very large amounts of preformed vitamin A over a short period of time. Signs of acute toxicity include nausea and vomiting, headache, dizziness, blurred vision, and muscular uncoordination.

Although hypervitaminosis A can occur when very large amounts of liver are regularly consumed, most cases of vitamin A toxicity result from an excess intake of vitamin A in supplements.

The Institute of Medicine has established Daily Tolerable Upper Levels (UL) of intake for vitamin A from supplements that apply to healthy populations. The UL was established to help prevent the risk of vitamin A toxicity or overdose. The risk of adverse health effects increases at intakes greater than the UL.

link and more info

By the way, I'm not endorsing that website. I found it by Googling "vitamin A overdose" and I'm sure you can find more information about the subject in general by Googling "vitamin overdose".

Please be careful! As I said to you in a PM, it would be beyond ironic if you made yourself sick with vitamin toxicity when all you're trying to do is remain healthy.

Ann
xxx
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 AustinWesley

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Re: Sometimes Hope is enough
« Reply #23 on: February 02, 2007, 02:10:40 PM »
I think Ann has give you some very sound advice on the supplement situation.    Also, the person who mentioned all the "snake oil" out there.   Unfortunately, there are tons of disreputable sites that go unregulated which promote varioius remedies and promote unrealistic and sometimes dangerous supplements and other magic potions to people who are HIV+.   

Make sure to be completely honest with your physician and don't try to do everything at once.    Take it one step at a time.   
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline HIV? poz about being neg

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Re: Sometimes Hope is enough
« Reply #24 on: February 02, 2007, 07:51:19 PM »
I got in to see the Doc and he pretty much said everything you guys are saying and then some. He did feel strongly that there should be no further use of the vitamin A as there already is 4000 iu in the one a day tablet I am taking two separate times in the day. As for all the other anti viral stuff I was taking he suggested that I should use those in moderation one week on one week off he did agree that I have to let my body work on its own as well.
as for the CD4 its at 480 its abit low but nothing to be concerned about according to the Dr as the test where done when I was very sick. and that I am scheduled to see the specialist some time next week. ???

He said that I had to get another Hep B shot as the one I had wasn't showing up very strongly??
I tested Negative for Hep C :)

And one of my livers was slightly elevated but nothing major??

The only really strange thing was that he took out a sheet and started asking me about my sexual partners of the past there contact numbers and stuff like that is that normal??   I have already spoken to the person that I had unprotected sex with is that not enough ?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline AustinWesley

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Re: Sometimes Hope is enough
« Reply #25 on: February 02, 2007, 08:05:29 PM »
Hey There,

I'm glad your doctor has seen you.   Your CD4 count is not bad.   Everyone has different ranges normally.   What was the Viral Load?

Yes, in the states they also ask for a list of your past partners.   The Health Dept. takes the information and contacts the individuals anonomously and advises them to get tested.

I don't know the laws for Canada, but I would think they would be very much the same as ours which will protect your privacy.   

It sounds like your Doc. is doing all the right things.   You should have a vaccine for Hep A and Hep B.   My doctor here also gave me a flu shot and a pneumonia shot as well so you might want to ask about those too.    The Hep A and B are a series so make sure you get them all.

Ironically, I was just chatting on the phone w/ a friend and his Hep. B vaccine didn't take either so they are having to redo it.   Not a big deal.

It sounds like you are on the right track now medically.   

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline HIV? poz about being neg

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Re: Sometimes Hope is enough
« Reply #26 on: February 02, 2007, 08:36:37 PM »
Thanks Wesley

The last test I had the VL was >100000 which was really high for a newly infected but I would imagine when i see the specialist he will do another.
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline AustinWesley

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Re: Sometimes Hope is enough
« Reply #27 on: February 02, 2007, 09:40:45 PM »
Oh, sorry I missed that.  I went back up to reread your original post.  I also had that wierd rash.    It sounds to me like you were infected fairly recently probably within several weeks of that rash issue.   I'm just guessing.

I've heard many people have high viral loads when they are diagnosed soon after seroconverting.   And, as your body kicks in as your doctor was suggesting things level off more.

I still don't see them prescribing or suggesting meds so early since you aren't having any symptoms now or rather infections or anything serious.  They'll want to test you probably on a monthly or every couple three months to figure out how your own body is handling the virus.   

I've talked to people who have been diagnosed with VL over 500,000 and some with numbers under 1000.   So, just keep up with all the appointments and see how it goes.   Trust me, I know this was a stress nightmare for me too.

W
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Ann

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Re: Sometimes Hope is enough
« Reply #28 on: February 03, 2007, 08:42:50 AM »
Hpabn,

Your VL result is totally consistent with a person who is newly infected. It WILL come down in time.

Your CD4 is fine and quite good considering your high VL. You will want to take note of your CD4% as well. There is a very good explanation of what the percent means in the T-cell Lesson (T-cell is aka CD4).

One very important thing you need to know right now concerning your labs is that you cannot go by one set of results. You need to look at several results over time. There is a tool available on this website called "Graph my labs" (link in the Welcome thread) and if you start now, it will be easy for you to add them in during the coming months. You will likely see your VL go down and your CD4 go up.

Getting more than one result goes for your liver enzyme results as well. Try to not stress about having one come back elevated this one time - see what the next result brings. It's something to keep an eye on but not really anything to worry about just yet.

I'm glad you got the vitamin A thing sorted out - as I said, you scared the crap outta me when I read your list and that was mainly because you were over-dosing on that particular one. Whew! ;D You need to be careful with vitamin E as well and as a man, iron.

When you do research on the various supplements, it's best to read sites that are (for example) university based, rather than sites that also sell the products. You will NEVER get an unbiased view from a commercial site. (commercial as in they have a shop area on their website, or link to a sister site where you can buy the products they discuss on the information site)

Ann
xxx
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 AustinWesley

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Re: Sometimes Hope is enough
« Reply #29 on: February 03, 2007, 11:33:09 AM »
Ann's given you some excellent advice and resources.   I wasn't nearly as articulate, but I would agree with everything she's said here.

Definitely get copies of all your records and keep track of everthing so if you have to change doctors or want to research something you have the information on hand.
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Coffeechick88

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Re: Sometimes Hope is enough
« Reply #30 on: February 04, 2007, 03:31:19 PM »
I got in to see the Doc and he pretty much said everything you guys are saying and then some. He did feel strongly that there should be no further use of the vitamin A as there already is 4000 iu in the one a day tablet I am taking two separate times in the day. As for all the other anti viral stuff I was taking he suggested that I should use those in moderation one week on one week off he did agree that I have to let my body work on its own as well.
as for the CD4 its at 480 its abit low but nothing to be concerned about according to the Dr as the test where done when I was very sick. and that I am scheduled to see the specialist some time next week. ???

He said that I had to get another Hep B shot as the one I had wasn't showing up very strongly??
I tested Negative for Hep C :)

And one of my livers was slightly elevated but nothing major??

The only really strange thing was that he took out a sheet and started asking me about my sexual partners of the past there contact numbers and stuff like that is that normal??   I have already spoken to the person that I had unprotected sex with is that not enough ?
--Ann gave you some excellent resources.  It is an excellent idea to track your counts like that (I wish I had thought of that when I was infected rather than going by memory).  As she said, % (% is much more constant than the absolute)and absolute go hand in hand and it is the trend over time that matters rather than each individual lab.  You will probably see a lower viral load as your immune system kicks in and the CD4 will eventually settle to a steady number---hopefully for many years.

--The viral load is also pretty standard in the newly infected.  My first viral load was well over 100,000 (I can't remember the exact number).  After that, it eventually settled to between 5,000-10,000 each time and one point even went undetectable without meds.  I was an uncommon case where my CD4 still kept dropping despite that, but more commonly, the CD4 will probably go up a bit and settle there as your viral load goes down.

--The Hep B vaccine would be standard if you didn't get a reactive result, which would mean for some reason your body doesn't have an immune response (it happens--same thing happened to me despite my hep b series).  They usually offer the pneumonia vaccine (every 5 yrs) and will encourage flu shots

--The liver enzymes can be elevated to several things.  Since we can rule out hepatitis, another possibility would be other meds, including those supplements you are taking.  That is some thing that would be monitored over time--it could be possible that it will settle down or stay elevated at a low level, but if it keeps rising with every lab--then there is likely a problem.  Don't be concerned over just one lab.

--The sexual partner list is standard procedure when you get infected.  I'm surprised the health department didn't call you.
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline lifechanging2007

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Re: Sometimes Hope is enough
« Reply #31 on: February 05, 2007, 10:29:14 AM »
Hey man,

I am sorry to hear your story.
I wanted to mention one small detail "We both share the same "on-this-day-my-life-changed" which is 24-1-2007
on this day me and you were feeling the same thing.

Good luck in your life.

lifechanging2007@hotmail.com
27/01/07 CD4=15.36%=245 VL=542000
14/03/07 CD4=13%=241 VL=858000    STARTED COMBIVIR AND SUSTIVA ON APRIL 27, 2007
05/09/07 CD4=22%=361  VL=undetectable
21/12/07 CD4=22%=451  VL=undetectable

The greatest adventure is what lies ahead
Today and tomorrow are yet to be said
The chances, the changes, are all yours to make
The mold of your life is in your hands to break.

Offline HIV? poz about being neg

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Re: Sometimes Hope is enough
« Reply #32 on: February 05, 2007, 06:52:10 PM »
lifechanging

That makes me want to cry....I wish you strength.
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline HIV? poz about being neg

  • Member
  • Posts: 158
Re: Sometimes Hope is enough
« Reply #33 on: February 15, 2007, 03:37:59 PM »
Wow it really seems like time has been moving ever so slowly I still have not been in to see the specialist. But I am scheduled for this coming Monday.
I have been feeling perfectly normal health wise. I have noticed a lump in my pubic area that comes and goes I am guessing it might be a lymphnode or something?
I continue taking the vitamins and supplements but in a much more moderate level.
I am not experiencing any fatigue at all. Emotionally I am doing really good.
I have not had any sexual activity since diagnosed is it safe to receive oral sex at this point with a VL> 100 000?
« Last Edit: February 15, 2007, 03:42:09 PM by HIV? poz about being neg »
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline AustinWesley

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Re: Sometimes Hope is enough
« Reply #34 on: February 16, 2007, 12:52:44 PM »
Hey there,

How long will it be before you see the specialist?    It always seems to take eons especially when you are newly diagnosed. 

Lump?   Hmm, you may want to start another thread about that topic to get opinions, but if you can't get into see the specialist I'd go see any MD to have that checked out.   I kept checking my lymph nodes in my neck so much early on I think I irratated them, but I tend to be a hypochondriac ;)  I've never had a lump in the area you are mentioning so I wouldn't know.

Oral sex?  Hmm, well the general concensus is that you can't contract HIV through oral sex.   I think it's a good step that you are thinking about it : )   

Also, I wanted to appologize for previously sidetracking your story with my own conversation with another member.  I didn't realize I was under your post.   

But, if you really have a lump I'd get it looked at.  That could be any number of unrelated HIV issues.   Urinary tract infection?   I don't know, but it's probably nothing.   Can you get in to see any doc to have a look see?

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline HIV? poz about being neg

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  • Posts: 158
Re: Sometimes Hope is enough
« Reply #35 on: February 16, 2007, 09:04:45 PM »
Thanks Wesley

I will actually be in to see the specialist this Tuesday. As for the lump I will mention it to the DR. Its strange its like one side is puffy or something it doesn't hurt or anything i dunno?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline HIV? poz about being neg

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  • Posts: 158
Re: Sometimes Hope is enough
« Reply #36 on: February 20, 2007, 05:54:32 PM »
So I finally got in to see the specialist and he was really great He confirmed my blood work for me as of January 25,2007 a day after testing positive my VL>100000   CD4 480   21%.  I got another set of tests done today and now just waiting to see how they turn out.
As for the lump in my pubic area which comes and goes today it was gone so he was unable to see it but said to watch if it gets larger or stays as it could possibly be a hernia.
So other then that I feel great physically all over the place emotionally especially sitting in the waiting room with all the other HIV patients was kinda heart breaking. But I'm OK.
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline BKNYLivin

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Re: Sometimes Hope is enough
« Reply #37 on: February 21, 2007, 02:34:34 AM »
Sorry to hear you recently tested positive. I went through the same thing about 6 months ago - negative western blot and then a second test etc. so I know how nerve-wracking that can be. The lump in your pubic area could also be lymph nodes, I had quite a few and they would move around, sometimes I could find them and sometimes not. I also got them in my testicles and we(me and the doc) couldn't always find them - I was told this often happens with a high viral load mine was >500,000 - initial labs. Ask your doctor and see what he thinks.
Your numbers are not bad, so don't panic about the viral load, it will probably level off and go down, especially if you were seroconverting like I was. Stay strong and there are a lot of good people here, so you are not alone.
Best Wishes
Diagnosed 9/18/06
10/13/06 - CD4:449, 33%,  VL:>500,000
11/20/06 - CD4: 392  VL:425,000
02/08/07 - CD4: 361, 16.9% VL:133,000
02/13/07 - Started HAART: Atripla
03/08/07 - CD4:401, 23.8% VL:643
06/05/07 - CD4:614, 33.6% VL:225
09/14/07 - CD4:612, 37%  VL: <50
12/14/07 - CD4:582, 38.5% VL:<50
4/11/08 - CD4: 658, VL: <50
3/5/09 - CD4: 847, 49% VL: <50
7/29/09 - CD4: 965, 50.1% VL: <50
12/28/09 - CD4: 925, 49.2% vl <50
9/16/10 - CD4: 1011 vl: <50

Offline HIV? poz about being neg

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  • Posts: 158
Re: Sometimes Hope is enough
« Reply #38 on: February 21, 2007, 02:56:29 PM »
Thx BKNY... I kind of thought it could be lymph nodes.

I realise I keep coming back to this issue: Vitamins and supplements.
As for the supplements and vitamins I'm just so confussed about them the specialist took the list I was taking put a big circle around it and then a big X over the page.
his reasoning was that they are all a big waste of money!
And that the meds Dr's provides are free but if he doesn't plan on putting me on meds at present should I not be taking thing to improve or strengthen my immune system now? The only vitamin he suggested was calcium?
Another question is it normal to feel perfectly healthy and energetic during this present time of me having HIV? the VL and all?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline BKNYLivin

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  • Posts: 76
Re: Sometimes Hope is enough
« Reply #39 on: February 21, 2007, 08:34:34 PM »
Yes, a lot of HIV+ people feel healthy and energetic, so enjoy it. check your pm and don't go crazy on the supplements.
Diagnosed 9/18/06
10/13/06 - CD4:449, 33%,  VL:>500,000
11/20/06 - CD4: 392  VL:425,000
02/08/07 - CD4: 361, 16.9% VL:133,000
02/13/07 - Started HAART: Atripla
03/08/07 - CD4:401, 23.8% VL:643
06/05/07 - CD4:614, 33.6% VL:225
09/14/07 - CD4:612, 37%  VL: <50
12/14/07 - CD4:582, 38.5% VL:<50
4/11/08 - CD4: 658, VL: <50
3/5/09 - CD4: 847, 49% VL: <50
7/29/09 - CD4: 965, 50.1% VL: <50
12/28/09 - CD4: 925, 49.2% vl <50
9/16/10 - CD4: 1011 vl: <50

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: Sometimes Hope is enough
« Reply #40 on: February 22, 2007, 12:24:21 AM »
I have yet to see compelling evidence that supplements do any good for the vast majority of people, including the HIv infected.

They used to make me pee in pretty colors, though.

"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 HIV? poz about being neg

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Re: Sometimes Hope is enough
« Reply #41 on: February 28, 2007, 05:43:25 PM »
OK so my second count is in as of February 20th my cd4 450 28%
my last one on January 25th was cd4 480 21% i think it's good right?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline aupointillimite

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Re: Sometimes Hope is enough
« Reply #42 on: March 01, 2007, 02:03:56 AM »
OK so my second count is in as of February 20th my cd4 450 28%
my last one on January 25th was cd4 480 21% i think it's good right?

Very nice CD4 counts and percentages!

What's your viral load?
Your tastebuds can't repel flavor of this magnitude!

Offline HIV? poz about being neg

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Re: Sometimes Hope is enough
« Reply #43 on: March 01, 2007, 02:18:01 AM »
all the Dr said was >100 000 i dunno why they don't give an exact number ?
« Last Edit: March 01, 2007, 02:20:29 AM by HIV? poz about being neg »
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline aupointillimite

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  • FUS DO RAH!
Re: Sometimes Hope is enough
« Reply #44 on: March 01, 2007, 02:20:03 AM »
I wasn't given a number from these test I had done ?

They haven't given you a viral load yet?

With me, the viral load results can take longer than the other labs... but it really is helpful to know both the CD4 and viral load results... but your CD4s are doing really well, dude.
Your tastebuds can't repel flavor of this magnitude!

Offline DUVCAST

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Re: Sometimes Hope is enough
« Reply #45 on: March 01, 2007, 01:53:54 PM »

 I am sorry to hear your DX, I had all the symptoms you describe, after umprotected sex, could you tell if you recall how long after your symptoms did you tested positive, since I am going crazy 6 months after and still negative, Thank you for any imput and take care.

Offline aupointillimite

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  • FUS DO RAH!
Re: Sometimes Hope is enough
« Reply #46 on: March 01, 2007, 01:56:13 PM »
I am sorry to hear your DX, I had all the symptoms you describe, after umprotected sex, could you tell if you recall how long after your symptoms did you tested positive, since I am going crazy 6 months after and still negative, Thank you for any imput and take care.

DUVCAST, if you haven't a positive HIV test, you shouldn't be posting in these forums and should stick to the Am I Infected forum.
Your tastebuds can't repel flavor of this magnitude!

Offline HIV? poz about being neg

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Re: Sometimes Hope is enough
« Reply #47 on: March 04, 2007, 12:15:20 AM »
Ok so i got the small lump that comes and goes on my left pelvic side checked and its a small hernia seriously what is going on with me one thing after another!
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline Fosbery

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  • Posts: 47
Re: Sometimes Hope is enough
« Reply #48 on: March 06, 2007, 11:59:17 AM »
Hey there,

I'm another Vancouver Canada area guy, found out a year ago, I know it is very hard to deal with all this, but as Wesley said, thank God that we live in a province that all the meds are free, well sort off our taxation system is high for everyone, but at least we do not have that added stress. I'm still very new to all this, but I have had about 5 test now since this nightmare started and your CD4 is good, my last one was around 384 and VL around 28000, while your lucky and your going up, I'm going down by about what seems 20 at every test, that sucks, everytime I see my doctor I hope it goes up, so far no damn luck, such is my life.  I was in bad shape when I found out, I thought my life was over, I'm a bit better now, I know that I won't die tomorrow so I go on, however it is on my mind like almost all the time in between living day to day, but that is what living with this in your body does to you. I'm more tired than I use to be, that's for sure, naps are part of my life now it seems, but other than that I have not been sick since I found out, in fact I was sick more often before all this, go figure. I looking forward to my trip to Europe this September and here to hope that I don't have to take meds till after this trip, the number he wants to start me at is 300 CD4, so here's to hoping.
I like Wesley have started taking Selenium, looks promising, and I take a one a day, but that's it. It you feel that all the other ones are helping then take them, but don't go broke with all them either, my Doc said the same thing it's all a waste of money, and as Wesley said you don't know what that many vitamins will do to your test results, but you can see that as you get more test done.

Keep strong, I know it's easier said than done.
Take cake
Garret.

Offline HIV? poz about being neg

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  • Posts: 158
Re: Sometimes Hope is enough
« Reply #49 on: March 07, 2007, 01:30:30 AM »
Hey Fosbey thank you so much for your insight on my test results, I do hope you start to see an improvement in your numbers as well. Although my numbers don't mean much so far as i think it's still pretty early for me. And the CD4 did go down it's the % that went up.
Did you % go down on all your tests? or just the CD4 count?

PS I sent you a PM
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline Fosbery

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Re: Sometimes Hope is enough
« Reply #50 on: March 07, 2007, 02:45:02 PM »


My Percentage went down from the beginning, however I must say I can't remember the numbers all the way through partly because I was in denial and let the test results just sail through my head, but when I go in next time I will be getting them all from the beginning to track them all from here on in.

Time to pull my head out of the sand I guess.

Offline HIV? poz about being neg

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  • Posts: 158
Re: Sometimes Hope is enough
« Reply #51 on: March 11, 2007, 05:59:54 AM »
Well everything seems to be going OK get abit depressed still can't believe it but staying very tough emotionally.

A quick question does anybody else notice there face seems reddish sorta like a flushed complexion? And if so is why is that?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline HIV? poz about being neg

  • Member
  • Posts: 158
Re: Sometimes Hope is enough
« Reply #52 on: March 22, 2007, 02:07:34 PM »
OK so i guess nobody else has noticed the reddish complexion?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline HIV? poz about being neg

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Re: Sometimes Hope is enough
« Reply #53 on: March 29, 2007, 01:59:08 PM »
Since being so recently infected does anyone know how often you should be doing blood work to check the viral load and the cd4 count is 2 months between to long?
Jan/25/07 VL > 100 000 CD4 480 21%
Apr/13/10     Started Atripla
May/11/10    VL !! 300 !!     CD4 520
Jul/15/10      VL    75          CD4 400   27%
Dec/20/10    VL UD             CD4 390 28%
Jan/10/12    VL UD              CD4 670 28%
Mar/31/14    VL UD              CD4 580 37%

Offline milker

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Re: Sometimes Hope is enough
« Reply #54 on: March 29, 2007, 03:44:41 PM »
Hi,

your doctor should have told you when to take your next tests. The doctor will take into account your overall blood work results, the VL, CD4, and many other variables. I was tested first time with a cd4 of 430 30% and a vl of 54000. Given my expected infection date and the overall test results my doctor told me to test again mid-april, that's two months. He gave me the option to test earlier, but said he'd prefer a two month period. I told him he's the doc i'm the patient so i'll go with his recommendation.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

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Offline jcmiami

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Re: Sometimes Hope is enough
« Reply #55 on: March 31, 2007, 12:02:39 AM »
When I was diagnosed with AIDS in 10/2006, I had rashes on my face and very dry flaky skin on my body that wouldn't go away. Well my MD told me that was a "visible" symptom of the disease. I had a CD4 count of only 21 and a viral load of over 650,000 at that time. After I was placed on medication, all the skin problems went away. I am on a medication callled Atripla which initially gave me a little of the "flushed" face look but it went away. As of now, I have an undetectable viral load and my CD4 count went up significantly. Most important, never lose hope and don't dwell on the disease - continue to live life period!

 


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