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Author Topic: Newly diagnosed  (Read 4485 times)

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Offline magnetpoz

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  • Posts: 9
Newly diagnosed
« on: June 05, 2019, 08:26:30 am »
Hi all, just gotten diagnosed from a company medical check up. Was not expecting the results to be positive. Went for another rapid test at a different Center and came back positive as well. Not sure if I need a blot test but will be visiting the hospital next week for examination and treatment. I had always been on condom besides oral yet still contracted it. I'm from Malaysia btw so hopefully I could connect with some seniors here from the same place.

Online Jim Allen

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Re: Newly diagnosed
« Reply #1 on: June 05, 2019, 08:31:20 am »
Hiya

Welcome to the forum, sorry to hear about the reactive results on the screening tests.
We have a few members from your region of the world, I'm sure some will chime in at some stage.

Glad to hear the follow-up appointment has been arranged so soon, it means you can get whatever follow-up testing is needed, blood checked and start treatment soon.

Keep us posted, for the time being, I am however going to ask you to post only in this one thread, you can ask whatever questions you have here and, members will be able to reply to you.

Best, Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline magnetpoz

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Re: Newly diagnosed
« Reply #2 on: June 05, 2019, 09:42:21 am »
Thanks Jim. At the moment, I am constantly having anxiety from the news. Hopefully it gets better in time.

I saw in a few posts here that the 1st line treatment regime offered here is not good? Combivir + Efavirenz I think which have quite a few side effects? I was wondering if there is other option that I could opt for which has the least side effect.

Online Jim Allen

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Re: Newly diagnosed
« Reply #3 on: June 05, 2019, 09:55:26 am »
Hiya,

Its a lot to digest right now, being anxious is a perfectly natural response to a new and unknown situation. It will settle down and in a year from now you will look back at this thread and laugh or have totally forgotten this forum even exists.  In the meantime, try not to read too much ahead.  Just take the journey one step at a time. 

Combivir contains "ATZ" (zidovudine) and it has somewhat a bad rep, although once dosing was better, in combination with other meds it saved many, many lives and, works well to suppress HIV. Plenty of people take it without issues.

Only once you have spoken to the doctor will you know for sure what treatment options they have for you and, from them what treatment is recommend to work best for you.

HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline virgo313

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  • Posts: 215
Re: Newly diagnosed
« Reply #4 on: June 07, 2019, 12:58:32 pm »
Hi Mag,

Welcome and apa khabar? Malaysian too here.
Try not to worry too much about “side effect”..

Let the tests takes places with ID Dr check on you and get some results first
Later after when you start ART, then you can ask more about “side effects”
You may not have any side effect.

Keep posting us updates.
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline magnetpoz

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  • Posts: 9
Re: Newly diagnosed
« Reply #5 on: June 08, 2019, 11:59:29 am »
Hi Virgo,

Khabar baik. Thanks for the advice. I'll check with the doctor. May I know what meds are you taking? I do know a malaysian here taking truvada and tivicay since efavirenz tend to have more side effects.

I will register with the hospital coming Thursday and along with all the test and meds. I'll update here once I got the results.

Offline virgo313

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Re: Newly diagnosed
« Reply #6 on: June 09, 2019, 09:13:01 am »
Hi Mag,

I am on efavirenz(Sustiva) + tenofovir disoproxil fumarate & emtricitabine(Truvada)
Let's call this 3 drug combo as "Atripla".

It is good to read up on HIV, but again, there is also lots of "negative" news..
For now i would suggest just keep to 'the basic" part of HIV.

You have not gotten the "actual confirmation Hiv status" yet. So, i suggest not to get too worried on what kind of meds/drug you will be taking. When you visit Hospital, they will draw blood & check your health (i mean to see if there is any sign of sickness that could have). Drawing blood will be for CD4, VL & others readings.

It takes few weeks for results & for you to know your status... Only then Dr will start you on meds. What i am saying here is to bear for a while before meds reaches you.

Meantime, just relax & head to hospital for your test/check. Ask them & keep tab on your VL & other results thats/when is available. My advise is to take any meds that is given to you on time & later only worry on "side effect". 

Looking forward to hear more on your progress. thanks

RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline virgo313

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  • Posts: 215
Re: Newly diagnosed
« Reply #7 on: June 13, 2019, 01:27:00 pm »
Hi Mag,

Did u manage to get some test done today? Tks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline Phantom2019

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  • Posts: 10
Re: Newly diagnosed
« Reply #8 on: June 17, 2019, 06:21:48 am »
Hi mag
I'm malaysian...
I'm now taking efaviren@nite n tenofovir@morning from the gov hospital,
My cd4 is 68, yaa till now sometime fever but I continuously taking medicine on time, with the bactrium since my cd4 low,
For me I hv less side effects n maybe side effects from the bactrium tat I have taken...I start taking harrt on 25.4.19 ...

Offline virgo313

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  • Posts: 215
Re: Newly diagnosed
« Reply #9 on: June 17, 2019, 10:31:42 am »
Hi Phantom,

Welcome and glad that you hv started ART.
Yes, Bactriam is “nasty”, but very important for those with low CD4. Good thing is that this is not forever and will be discontinue once you reach higher CD4 count. Meantime do bear with it.

Btw, do you know your Viral load? Tks

« Last Edit: June 17, 2019, 10:37:07 am by virgo313 »
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline magnetpoz

  • Member
  • Posts: 9
Re: Newly diagnosed
« Reply #10 on: June 17, 2019, 11:22:38 am »
Hi Virgo,

Thanks for asking. I have not gotten the lab results yet as it takes them over 2 weeks to get the results =.= my next appt is 4th July. Not sure if there's a group for the poz in Malaysia that we can reach out to.

Hi Phantom,

Nice to know you. May I know where are you based at? I hope the lab results is not too depressing when I get it. I get worried on the side effects.


Offline virgo313

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  • Posts: 215
Re: Newly diagnosed
« Reply #11 on: June 18, 2019, 02:29:10 am »
Hi Mag,

Glad to hear that there is progress & results will be out soon. Again, please bear with the waiting time. I can assure you our Dr/nurses are a caring bunch.

As for support group, there are a few. http://klass.org.my/ , http://ptfmalaysia.org/ & more. at hospital there are also volunteers moving in/out everyday to help PLU (people like us). They collect med, send the weak one to do check up. Help with new cases & other support

Lastly, here this forum help me a lot when i first diagnose. There are a lot senior that advise & support me. Do use this space to reach out.

btw, which hospital did you went for testing? Thanks 
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline magnetpoz

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  • Posts: 9
Re: Newly diagnosed
« Reply #12 on: July 04, 2019, 09:43:51 am »
Heya,

Just gotten my results. CD4 at 385. VRL not gonna be tested till after taking my meds. Will be starting my treatment this Saturday. Next blood draw in 2 weeks time.

Offline virgo313

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  • Posts: 215
Re: Newly diagnosed
« Reply #13 on: July 04, 2019, 12:43:36 pm »
You will be fine & life will be normal like negative people.
What combo did the Dr prescribe to you?
Do write here for any thing you need to ask.
It can be a mind blogging few weeks for new ppl.
Just think of it as just taking “vitamins”.  :)
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline magnetpoz

  • Member
  • Posts: 9
Re: Newly diagnosed
« Reply #14 on: July 08, 2019, 02:56:42 am »
Heya,

I was prescribed Tenvir-em and dolutegravir. Started 2 days and experienced zero side effects fortunately  :)

Offline virgo313

  • Member
  • Posts: 215
Re: Newly diagnosed
« Reply #15 on: July 08, 2019, 01:33:08 pm »
Great. Moving forward you need only need 2 things
1) keep taking pills daily
2) reach UD viral load and maintain UD vl level. That’s all
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline Acesra

  • Member
  • Posts: 20
Re: Newly diagnosed
« Reply #16 on: July 31, 2019, 09:26:35 am »
I have a nice doctor at Prince Court hospital (Dr. Suresh Kumar). He is kind, understanding, and non-judgmental. Prince Court is expensive, but I think Dr. Suresh works at a public hospital too.

I am given Atripla. The side effects are very bad. I get extremely dizzy after taking it. But I take it at night, so in a way it helps with my sleep. But it is not helpful for those night-outs with family or friends.

Regarding support groups, I found KLASS and PTF useless (from my personal point of view and experience). When first diagnosed, I called their hotlines every day for 2 weeks, nobody replied. I was at the edge of suicide, and their hotlines were far from hot. I tried to reach out to PTF's MSM group, it took them months to reply to me, and they meet very irregularly. All in all, I got upset with and disappointed by these two organizations. I understand they are understaffed and underfunded. But when we need them the most, they are never there.

What helped me a lot was to be connected with a few individuals who are positive, and they guided me through. One guy became my good friend until now.

Take care of yourself.

Hugs

Offline virgo313

  • Member
  • Posts: 215
Re: Newly diagnosed
« Reply #17 on: July 31, 2019, 12:48:14 pm »
Hi Acesra,

Glad to know that you are settling well with your Dx. Good to know you have friends to speak to now. I am sure you will be fine now & hope you do not feel "suicide" anymore

I have a nice doctor at Prince Court hospital (Dr. Suresh Kumar). He is kind, understanding, and non-judgmental. Prince Court is expensive, but I think Dr. Suresh works at a public hospital too.

Dr Suresh works at Sg Buloh goverment hospital. He is at Prince Court only "by appointment basis" He is a senior ID Dr. He was also the one who told me i need Chemo treatment. Almost all ID Dr are non-judgmental. Yes, Prince Court is the MOST expensive private hospital, only less then 1% of poz malaysian can afford to step into this hospital.

The choice of government or private is individual. A lot of poz are drug users, sex workers & the only choice they have is free health care.

Regarding support groups, I found KLASS and PTF useless (from my personal point of view and experience). When first diagnosed, I called their hotlines every day for 2 weeks, nobody replied. I was at the edge of suicide, and their hotlines were far from hot. I tried to reach out to PTF's MSM group, it took them months to reply to me, and they meet very irregularly. All in all, I got upset with and disappointed by these two organizations. I understand they are understaffed and underfunded. But when we need them the most, they are never there.

I dont think you have seen how some of out NGO "work". Spend 2 days at Sg Buloh & you will see them in/out pushing patients around for Dr appointments. Walk into the beds section & you will see they spend nights with the weaks one. I am sure you have read how our transgender community is left alone because family could not accept them (we are basically a Muslim country). So, i think they are doing their community part right.

I understand from past post, it took you months before you took step forward in meeting people. I also PM you & ask if you need me to follow you to a support group. Why it took you so long to "step forward" & reach out, only u know why...
So, don't say "when we need them most" when you have all the time to do something. Glad you manage to reach out.

----------------------------------------------------------

The main point i want to say here is that:-
1) Medicate is free for all Malaysian & Dr in government hospital is good.
2) "Why pay when u can get it free". If you can afford, take out a calculator & cost up to let's say 80yrs old, then decide if u want to go private or public.
3) You will most likely see "the same" DR & the only difference is that Prince Court offer you a soft comfortable sofa while waiting for your Dr.
4) Be humble, allocate time for treatment. prepare to wait a bit.

Just want to say to all Malaysian that we have a good health care & go get tested & start treatment & reach out if you need help.

Thanks
« Last Edit: July 31, 2019, 12:54:27 pm by virgo313 »
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline magnetpoz

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  • Posts: 9
Re: Newly diagnosed
« Reply #18 on: August 14, 2019, 05:45:32 am »
Hi Acesra,

Thanks for the replying here. I got to know another forumer here and thanks to him, I feel more comfort talking about the condition with him. Hope to know many more other locals here.

I contacted PT Foundation support group and they are quite responsive for my case to guide me on the clinic registration and everything. They've improved i guess  :)

Offline magnetpoz

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  • Posts: 9
Re: Newly diagnosed
« Reply #19 on: August 14, 2019, 05:50:34 am »
By the way, I have gotten my lab test and apparently my creatinine level has increased quite alot but still within safe range after a month of meds. Not sure was it the workout session or the meds that had caused the increased. I will be going for another appointment in 2 months time, hopefully its all good with my kidneys.

Offline virgo313

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  • Posts: 215
Re: Newly diagnosed
« Reply #20 on: August 14, 2019, 12:28:59 pm »
Hi Mag,
Glad u r following up with more test and monitoring your results.
Am sure you will be in control of the hiv and live a normal life.

“Local”... hahaha. Every one here is caring. “Local” or ppl from other parts of our earth. I learn and have support from all that reply. Tks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline virgo313

  • Member
  • Posts: 215
Re: Newly diagnosed
« Reply #21 on: August 26, 2019, 12:26:56 pm »
To fellow Malaysian,

Just to share a new website on HIV by PT. Quite good. In 3 languages
https://www.take-charge.today/
« Last Edit: August 26, 2019, 12:35:16 pm by virgo313 »
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

 


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