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Author Topic: Tested Positive, living in Thailand  (Read 6301 times)

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Offline LordBerners

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  • Posts: 415
Tested Positive, living in Thailand
« on: October 26, 2007, 02:31:49 PM »
New member here.. would like to introduce myself. 
I'm a long term expat teaching in Thailand. I've known for just a month, and I can remember a rather profound illness that included exhaustion, dizziness, fever, and petechaie on ankles, about 2 years ago that could've been initial infection. I had a negative test about a year before that, so I guess I've been positive for roughly 2 years.

I have no obvious signs of immune deficiency, though I feel that over the last two years I've had a few minor things like ringworm, skin tags, and a few boils, that I've never had before. These could also be the tropical climate.

I just got back my first set of lab test results - for CD4 and VL. The doctor told me over the phone that it was CD4 - 300, and VL 755,000. She didn't say anything about percentages or anythnig else. I guess those are rather bad numbers, particularly for someone who probably has only been infected about two years.

Anyway, the doctor stressed that I must come in as soon as possible and must begin taking anti-hiv medications as soon as possible.. so made an appoinmtent for two weeks hence. I still feel quite unsure about all this. Should I get a second opinion? Another test? What do those numbers mean? A bad prognosis or really nothing definitive? Is there anything different about the virus prevalent in Southeast Asia?

Lastly I'm very concerned about costs, as I have very little money.  Would welcome any comments.  Anyone else out there in Thailand?
Please, just call me Berners.. or Baron.

Offline keyite

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  • Posts: 514
Re: Tested Positive, living in Thailand
« Reply #1 on: October 26, 2007, 03:33:22 PM »
Sorry to have to welcome you to the 'club', but welcome nonetheless!

True, your numbers could be better, but you're not in any immediate risk of an OI. It's important to remember numbers jump around a lot (just look at mine in my signature) and that both CD4 and VL tests have quite a margin of error. You could take two vials, taken from the same person, at the same time, and send them to the same lab, and yet they'd most likely come back with quite different numbers.

That's why it's not a good idea to base treatment decisions on a single round of tests (unless of course you believe treatment is warranted regardless of numbers). In your situation I would get at least a couple more tests, with something like a month between them, and then hopefully a trend will start to emerge. If the trend is downwards then I would seriously think about starting treatment. But it's important you're ready to commit to the meds because it'll be a life-long thing, so this really should be a decision you're happy with and one which has been made in partnership with your doctor. You really shouldn't be feeling pressurised into it.

I'd also press her for the CD4 percentage. This number doesn't jump around so much (again, look at my numbers) and often helps to better interpret the absolute CD4 count.

Do make use of the 'lessons' - you'll find the link at the top of this page. They will give you a lot more info, including explanation of the various lab tests and when to start treatment.

Glad you found this place... ;)

Offline LordBerners

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  • Posts: 415
Re: Tested Positive, living in Thailand
« Reply #2 on: October 28, 2007, 03:46:59 PM »
Thanks so much for your response keyrite.  I don't know why the doctor is in such a rush, but she is.

While I'm 'ready to commit' to medication, the problem for me as an uninsured person is financial - I have no idea if I'll be able to afford them.  Medications are cheaper here in Thailand due to the authorities breaking many patents for 'life saving essential drugs', but still even a few hundred dollars a month is problematic as an expat teacher's salary here is about $1,000/month.
Please, just call me Berners.. or Baron.

Offline confusedme

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  • Posts: 74
  • wishing away reality
Re: Tested Positive, living in Thailand
« Reply #3 on: October 28, 2007, 04:50:30 PM »
Hello. I am a newbie to all this too so I don't have much advice. I just wanted to say hi and welcome you.
08/13/07 - Diagnosis confirmed
08/30/07 - T-cells 400, VL 6,500 (Baseline)
11/30/07 - T-cells 428, VL 9,950

Offline komnaes

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  • Posts: 1,893
Re: Tested Positive, living in Thailand
« Reply #4 on: October 28, 2007, 10:41:57 PM »
Hi Lord, I am sorry that you have to join us, but welcome nonetheless.

I am not in Thailand (I am in Hong Kong) but I have spoken to some people about treatments here and my impression is that costs are probably one of the lowerest in Asia as those folks have been battling with HIV for years and much harder than most other countries. I believe that the government clinics are free to almost free to everyone for consultation and basic testing (maybe not including genotype tests, but you need to check), but sudsidies for drugs are only available to Thai nationals. You should check whether it applies also to expats with valid working visas.

You should still talk to your doctor and find out what she has to say about treatments, how you can get them and only with more information about your conditions you can plan ahead and make informed decisions with her about whether to start meds immediately. But in any case it's (almost) inevitable that you need to start at some point. In the meantime I suggest you to talk to some NGOs such as HIVNAT:

http://www.hivnat.org/

I am sure you must have thought of it, but allow me to ask - You didn't mention which country you're from originally. If finance is stopping you from getting treatments, and if you're from a country that offers universal health care, there may be a point that you need to consider heading home.

Hope it's useful. We have a few members from Thailand too, perhaps you can offer more advises.

Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline LordBerners

  • Member
  • Posts: 415
Re: Tested Positive, living in Thailand
« Reply #5 on: October 29, 2007, 02:04:20 AM »
I am sure you must have thought of it, but allow me to ask - You didn't mention which country you're from originally. If finance is stopping you from getting treatments, and if you're from a country that offers universal health care, there may be a point that you need to consider heading home.

I didn't mention it, though I thought it might be obvious from my financial anxieties - yes, unfortunately for me I am an American.  Thus, no access to health care. 

Please, just call me Berners.. or Baron.

Offline komnaes

  • Member
  • Posts: 1,893
Re: Tested Positive, living in Thailand
« Reply #6 on: October 29, 2007, 02:29:40 AM »
I can only suggest at this point is to talk to your doctor first. Your first CD4 is 300, which is not exactly low and there are two schools of thought about when to start meds - one says it's better to start as soon as CD4 goes below 350 and some doctors are now saying that 500 should be the starting point; the other says to observe a few more counts to clearly establish a trend that is decreasing to below 200 before starting meds.

You mentioned already that Thailand is famous for imposing compulsory licenses for the manufacturing and importing of generic drugs for HIV, including recently Kaletra and Efavirens. Some are cheaper but the latest ones can still be costly, like Rayataz/Norvir I know costs around USD600 per month. But you still don't know if you'd need the more costly ones, so, again, talk to the doctor first and find out why she's in a rush.

Best of luck, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline LordBerners

  • Member
  • Posts: 415
Re: Tested Positive, living in Thailand
« Reply #7 on: November 03, 2007, 05:33:00 PM »
I'm planning to post this information on 'living with hiv' as well, but wanted to update here...

I can only suggest at this point is to talk to your doctor first. Your first CD4 is 300, which is not exactly low

I just had a second visit with the doctor, and she informed me that my 'percentage' is 14.6%, which she said was a worse sign than the 300 cells...

Quote
You mentioned already that Thailand is famous for imposing compulsory licenses for the manufacturing and importing of generic drugs for HIV, including recently Kaletra and Efavirens. Some are cheaper but the latest ones can still be costly, like Rayataz/Norvir I know costs around USD600 per month. But you still don't know if you'd need the more costly ones, so, again, talk to the doctor first and find out why she's in a rush.

Shes said she's in a rush because she thinks I'm in bad shape.. to tell the truth I got the feeling she just rushes anyone who shows up into treatment.  So get this - she said the medicines would probably be 30,000 baht per month, to which I responded 'that's nearly my entire income!'.  She then researched it in the hospital's drug pricelist, and sure enough the three medications she recommended would come to just under 5,000 baht/month (about $150).  Very liveable.  However CD4 and VL testing was about $225 at this hospital, compared to a price quote I got at the Red Cross for around $75.  So I decided to hold off on treatment.  Really didn't like that doctor anyway.
Please, just call me Berners.. or Baron.

Offline Matty the Damned

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  • Posts: 12,228
  • Ninja Please
Re: Tested Positive, living in Thailand
« Reply #8 on: November 03, 2007, 06:35:11 PM »
Your Lordship,

I just had a second visit with the doctor, and she informed me that my 'percentage' is 14.6%, which she said was a worse sign than the 300 cells...

The CD4 % is generally taken as a more stable indicator of how one's immune system is faring. (Yes Newt, Matty the Damned is aware of that frigging Italian study you quote from time to time.)

The general rule of thumb when considering the significance of an absolute count against the percentage is to go with the worst. 300 seems ok, but a percentage 14.6 indicates that things could be a bit grim.

A result above 21% is considered to indicate "normal" immune function in HIV positive types.

A result below 21% and above 13% indicates some damage to the immune system and the possibility that you may get ill.

A result below 13% indicates that there is a real chance of getting ill.

None of that is set in stone of course.

MtD

Offline traveltramp

  • Member
  • Posts: 39
Re: Tested Positive, living in Thailand
« Reply #9 on: November 07, 2007, 05:53:22 PM »
I didn't mention it, though I thought it might be obvious from my financial anxieties - yes, unfortunately for me I am an American.  Thus, no access to health care. 

It may be out of place, but I don't understand why you would say it is unfortunate to be from the United States?  I am a US citizen and have lived outside the USA for 7 years, but at no time have I felt it was unfortunate to be from where I am from.  Most countries will help their own... go back to the USA if you must, but you can find help and love and all that good stuff in Thailand.. possibly more.. just look for it.  And you do have access to healthcare... you just have to pay for it.. there is a difference.  I may not live in Thailand, but I have been there many times... with HIV and I have always been able to get what I need in BKK.. As a matter of fact.. Thailand is where I tested positive for HIV...

You will be OK.... it is hard, you are not alone.  Be content with who you are, it is the only way.  These feelings you have will come and go, in the end it will be the love you have for yourself that will pave the way.

I wish you love and compassion.


5/7 SEROCOVERSION
7/7 CD4 669
9/7 CD4 1079 V/L 1200
2/8 CD4 803   V/L 3050
4/8 CD4 805   V/L 2200
9/8 CD4 959   V/L 2418
1/9 CD4 909   V/L 550

Offline LordBerners

  • Member
  • Posts: 415
Re: Tested Positive, living in Thailand
« Reply #10 on: November 08, 2007, 02:39:38 AM »
I didn't mention it, though I thought it might be obvious from my financial anxieties - yes, unfortunately for me I am an American.  Thus, no access to health care. 

It may be out of place, but I don't understand why you would say it is unfortunate to be from the United States?  I am a US citizen and have lived outside the USA for 7 years, but at no time have I felt it was unfortunate to be from where I am from.  Most countries will help their own...

Traveltramp, thanks for your kind comments. 

I apologize if my viewpoint on my nationality seems confrontational, and I did not intend to start a political debate here, though I admit I am a very politically minded person.  All I meant was that in the context of the pursuit of HIV treatment being an american is a severe handicap for me, because we have no provision for health care in the United States like they do in Europe, Canada, etc.  Of course as you say had I the money to pay for it, I could be treated in the US, but of course like most people I do not have a spare several thousand dollars a month coming in.
Please, just call me Berners.. or Baron.

Offline traveltramp

  • Member
  • Posts: 39
Re: Tested Positive, living in Thailand
« Reply #11 on: November 08, 2007, 07:06:02 AM »
I agree in part, I have had HIV for only 3 months and have yet to see a Dr.  I traveled to the US to find that there are many programs available to me and found that the level of service provided to me at the local Aids Project was comprehensive.... but, it required me to get a state ID and some other device showing that I was a resident of that state. (Even though I have a US passport and am a national)   I was not willing to do this for a variety of personal reasons, currently I live in Costa Rica and I have had blood tests and it was about 200 USD for CD4/CD8 and a VL test.  Mind you I could not afford it in the USA outside of getting financial help via the "system"

I travel to India in a few days and I hope that I  don't fall ill in a part of the world that I am not familiar with.  I may travel back to the USA when I need to.  I am not a wealthy person by any means.  We must do what we must do to survive in this world.

I will be in Maylisa in February.. Penang... I am close to Thailand...maybe over the months we can become friends and meet and share war stories.. 

Be harmless to yourself and to others... I wish you love and compassion.

5/7 SEROCOVERSION
7/7 CD4 669
9/7 CD4 1079 V/L 1200
2/8 CD4 803   V/L 3050
4/8 CD4 805   V/L 2200
9/8 CD4 959   V/L 2418
1/9 CD4 909   V/L 550

Offline thailand

  • Member
  • Posts: 6
Re: Tested Positive, living in Thailand
« Reply #12 on: November 21, 2007, 11:50:39 PM »
Hi Lord,

There are many treatment options in Bangkok from very basic and cheap till upclass and expensive. Public Government hospitals are cheap, medication is cheap, doctors are great, but you have to endure long long queues of patients and facilities are basic.  The upscale private hospitals are expensive, medication is expensive, very commercial feel but facilities are topnotch.

Go and talk with the people at the Thai Red Cross. They are a bunch of very nice people who can give you all the details where you can get the best treatment according to your wishes and budget.

Thai Red Cross Anonymous Clinic
104 Ratchadamri Road, Pathumwan, Bangkok 10330
Tel. 02-252-2568

Good government hospitals witch specialized hiv clinics are:

- Siriraj Government Hospital / linked to Mahidol University
2 Prannok Rd. Thonburi  Tel: 411-0241-9

- Chulalongkorn Hospital (linked to Chulalongkorn University
Tel: 252 8133-9 Rama IV Road (opp Dusit Thani Hotel)

If you however rather go to a private hospital I heard good stories about Samitivej Hospital at Sukhumvit Road. There seems to be a good doctor who allows his patients to buy the much cheaper generic medication instead of the much more expensive originals. So maybe of interest to you to check this place out.

- Samitivej Hospital 133 Sukhumvit 49, Klongtan Nua Vadhana, Bangkok 10110 Tel: +66(0)2711-8000

Medication at government hospital cost about 3000 thb per month for Efavirenz (called Stocrin here) and & generic Combivir  (called Zilarvir).

VL and CD4 counts at the Thai Red Cross at about 1600 thb.

Good luck and keep us posted,

Steve     

Offline LordBerners

  • Member
  • Posts: 415
Re: Tested Positive, living in Thailand
« Reply #13 on: November 24, 2007, 11:42:42 AM »
Thanks, 'Thailand', for your helpful and informative comments.  I am continuing to pursue treatment options - for now I want to get a few more CD4/%/VL tests in over a period of a few months before I jump into medications.  I will look into the places you recommended, and post more here about how things are going in future.

It is certainly reassuring to hear of the low-cost of medications, testing, and doctor's care - since last posting here I  have independently discovered roughly the same costs that you mention.

Just shocking the cost differential with back in the US - not that I want to return there, but it is beginning to look like that may never be an option (well unless they ever allow us State provided medical care).
Please, just call me Berners.. or Baron.

Offline guydude

  • Member
  • Posts: 4
Re: Tested Positive, living in Thailand
« Reply #14 on: November 29, 2007, 09:52:23 PM »
Hi all,

I've never posted here before but I had to jump in.  By way of disclosure, I'm HIV-negative, but somebody who is very close to me is HIV+ and I've made it a project to learn as much as possible about this subject.  I find this site incredibly helpful.  So thanks. 

Let me add one suggestion about HIV treatment in Thailand.  There is a hospital in BKK on Pitsanuloke Road, number 430, that is known as Mission Hospital.  It has another name too that I can't recall now.  There is a doctor there named Dr. Nick Walters who I happen to know just a bit.  He treats quite a few HIV patients, including the person I know who I mentiond above.  I think he's one of the best doctors I've ever known, and I've known quite a few.  He has prescribed a Thai generic called GPO-Vir 30 for my, uh, friend, and the cost is only about 1,900 baht per month.  Office visits are very cheap, maybe about 300-400 baht, although you're right that blood tests can be quite expensive.  BTW, GPO-Vir 30 consists of Navirapine, stavudine (d4T), and lamivudine (3TC).  It's a potent med, although there can be some side effects that some people find harsh (mostly lipo-related).  But the price is hard to beat, and the bad side effects often don't appear immediately and are often reversible if you switch to different meds later as they become available. 

I suggest that before you decide to start or not start treatment you should see a doctor who you feel comfortable with, and consider what that person has to say.  Your viral load sounds high to me, although I'm definitely not an expert.  Just my $0.02. 

Also, I know that the Thai Red Cross can be a great resource.  Again, the person I mentioned above has been in contact with a certain counselor there and found them to offer great advice, and also a lot of support and encouragement. 

Thanks for reading, and sorry for such a long post. 

 


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