Just spoke to my Dad.

The story has changed again, my stepmum actually has full blown AIDS and the doc said she has had HIV for maybe four years or something and it has gotten worse

Meningitas will be cured by some tablets he has given her and hopefully she will be at home on monday and things are looking better now. And both my Dad and Stepmum will be given some anti-retrovirals to take home.

My Dad has had HIV for a year according to the doctor, we think my Stepmum caught it from her Thai boyfriend from a few years back.

The medication names are in Thai and right now everyone is sleeping so I want to leave it at that so they all get some good sleep.

Thankyou everyone

Ice Maiden,

I'd be wary of this doctor's pronouncements. It's impossible to tell for how long someone has had the virus. The fact that he's issuing such statements undermines his overall credibility.

Scouse.

Ice Maiden - Which doctor did your folks see at Bumrungrad? If you dont know the name of the doctor when and what time was their appointment and I can work it out from there. Did they then involve another specialist? Sounds to me like your dad & step mum are seeing the wrong doctor at Bumrungrad - if its really spinal menigitis, she should have been admitted.

I know a fair amount about HIV specialists in BKK - Forget Pattaya hospitals, they are not going to be good enough for what you need. Based on what you have said so far, I really think something is wrong here.

Edit - Some people can be quite mean can't they? My Grandad has just found out the news and the first thing he said was "Take your children away from the house they might catch it" he wasn't comforting in any way.

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Don't be too harsh on you're Grandad Icey, this disease was not about when he was young and he never had to deal with it or take precautions against it in the same way our generations have. This is no time to argue with anyone in the family or bear animosity towards them, I know its a stressful and angry time.

Educate yourself on HIV is the first thing you need to do, I think most people are surprised at how well people can live with HIV when they are armed with the correct information.

Thoughts are with you, best wishes

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Yank Basketball Player Magic Johnson is a good example. Think he's been alive/kicking for last 15yrs and he's healthier than most people. Granted he has the best medical care one can buy, but never the less i think if you get on a strict anti-viral meds its nearly undetectable these days.

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Based on last known information, Magic Johnson is using Combivir (combination of AZT & 3TC) and Stockrin. Both of these medicines are available in Thailand and a vastly cheaper price than if buying in the USA. Typically, will cost about 12,000 baht for a months supply of these medicines. To make it easier for referencing, these names are the names they use in Thailand. They are called something else in North America. They are not generic copies - they are the real drugs made by GlaxoSmithKline & Merck respectively. Combivir is also available as a generic which lowers the price even more. They are considered the definative first line drug treatment for naive patients (i.e not having any resistance to any HIV drugs).

FYI, as others have said, with correct medical care, life expectancy is now considered as near normal as anyone else - basically, IF you have access to medical care, you will live to be as old as your peer group nowdays.

I would never trust Bamrungrad hospital - they are a business more than a hospital.

When my daughter was born she was put in ICU for 5 days as the doc said is was best - I found out that this was uneccessaray, but what can you say when the so-called best doctor tells you.

Of course the bill doubled.

My best friend had to go back to UK after finding out he had HIV. He said if he hadn't gone 4 years ago, he would now be dead for sure. Something to do with the quality of drugs.

Digger has previously mentioned that Dr Matana at Bumrungrad is reknowned for treatment of HIV.

Scouse.

I'm just really not sure what to believe anymore you know. Doctors are changing the story all the time and it's really messing with my stepmum.

The doctor at Bumrungad didn't admit her but when we brought her back they wanted to admit her and advised us she should be admitted but my stepmum pleaded with us to take her back to Pattaya to see her family because she didn't want to stay in Bangkok. We couldn't really force her to stay in Bangkok especially after she found out her life expenctancy.

We took her to Pattaya the same night and admitted her to Pattaya hospital where all they are doing is messing us around it seems.

I can get the doctors name for you tomorrow because my family are in the hospital at the moment and I'm not going until tomorrow afternoon.

Sorry I didn't reply to your posts straight away I fell in a deep sleep.

This post has made me realise that life isn't worth &lt;deleted&gt; without friends and TV friends are worth a mint.

My thoughts and love are with you Icey!

This post has made me realise that life isn't worth &lt;deleted&gt; without friends and TV friends are worth a mint.

My thoughts and love are with you Icey!

Totally agree Prof.

Icey, my thoughts and prayers (I am not religious) are with you and your family.

Derek

Just spoke to my Dad.

The story has changed again, my stepmum actually has full blown AIDS and the doc said she has had HIV for maybe four years or something and it has gotten worse 

Meningitas will be cured by some tablets he has given her and hopefully she will be at home on monday and things are looking better now. And both my Dad and Stepmum will be given some anti-retrovirals to take home.

My Dad has had HIV for a year according to the doctor, we think my Stepmum caught it from her Thai boyfriend from a few years back.

The medication names are in Thai and right now everyone is sleeping so I want to leave it at that so they all get some good sleep.

Thankyou everyone

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The term full blow AIDS is misleading these days. Basically you are considered as having AIDS once your CD4 count falls below 200 (normal level is around 700-1100, depending upon the person). In very simple terms CD4 are the bodies 'army' that fight off infections - the smaller the CD4, the easier it is to get ill with infections that can cause death. Ordinarily in someone with a regular CD4 count, these infections would get killed off before they cause any problems.

The HIV virus basically destroys the CD4 cells over a period of time and limit the body from making more CD4 cells. Over time the CD4 count gets very weak and then opportunistic infections set in which ultimately are the cause of death in the worse case scenarios.

Two primary tests are done to measure progress of the disease. One is the CD4 test, which counts how many good cells remain in the bloodstream. The other is the viral load test which counts how much of the HIV virus is in the bloodstream. Typically the CD4 count will without treatment go down from regular levels all the way down to 0 and the viral load test will over time go up as the virus multiplies within the body.

HIV medicines are designed primarily to stop the virus growing and to attack it. The body produces its own CD4 cells, medicines do not do that.

So in very simple terms, any medicines that your family take will be aimed to do what I describe above.

Depending upon the levels of CD4 counts and Viral load, there are different recomended medicines. For example, most patients are put onto a 3 drug regime as its been proven over many years now that the most effective way to destroy the virus comes from using 3 drugs all of which do something a little bit different. These are very powerfull drugs, however they do work but they also carry some side effects. Its worth considering that the overall benefit outweighs the risk.

Due to the CD4 count of a patient, in some cases, the patient needs to be hospitalised. When a CD4 count is very low, the risk of an infection is very high - close medical supervision is important and likely means that the patient should be receiving additional nutrients and saline via a drip. Possibly a blood transfussion may be suggested depending upon the anemic levels in the blood.

IT IS VERY IMPORTANT TO MAKE CLEAR TO THE DOCTOR THE FINANCIAL POSITION YOUR IN. By that I mean, many of these treatments are expensive in Thai terms - a blood transfussion can cost 10,000 baht for one dose of blood - therefore the doctor may not suggest it fearing that its too expensive for the patient. HIV treatment is a life time of medicine - it can be very expensive. If you have the financial means, you must make it clear to your treating doctor and to inform them that financial issues are not the primary concern here. That will allow them more scope to enhance what treatment options are available.

Patients with low or single digit cd4 counts are very sick, however with correct medical attention, many many have fully recovered and restored their CD4 counts to over 200 and sometimes considerably higher. Viral loads can be suppressed as well but the key is having a specialist doctor and Absolute adherance to taking the medicines on time EVERY TIME. Side effects from medicines can be upsetting, however for the most part they are manageable - in extreme cases, problems caused by medicines can be overcome either by changing the medicine or more commonly by the body becoming more accepting of the medicine. For example, Stockrin can cause dizziness which is why its taken just before you sleep at night. Stockrin can also cause more vivid dreams however it is also one of the most regarded HIV medications and is very powerfull in destroying HIV/AIDS virus and side effects tend to wear off within 2-3 weeks of starting to take it. Many people have been taking this medicine for over 5 years continually and its considered as one of the most effective medicines with proven results.

Finally one of the most important areas is how you handle the illness from a mental standpoint - HIV/AIDS is not always a death sentence - With a positive mindset and medicine, the condition is now considered as a manageable chronic condition, similar to diabetes. With a strong mindset, it can be overcome and a meaningfull life enjoyed for many years.

Thanks for that informative post Digger.

Thanks for that informative post Digger. 

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Yes it was indeed, thankyou

My Stepmum is home now and she will be fine if she takes her meds.

Spoke to the French doc in Pattaya and we are seeing him tomorrow so everything is looking great now! He said no one can put a life expectancy on an HIV/AIDS victim.

This French doc works for free and only charges you for medication. The money he makes he puts back into helping other patients. And if you can't afford the meds he discounts for you which I think is excellent. He relies on people rasing money.

As soon as my Stepmum is well enough I'm going to do some kind of sponsored event for definate. I really want to help HIV/AIDS victims and help more people be aware.

Thanks for that informative post Digger. 

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Yes it was indeed, thankyou

My Stepmum is home now and she will be fine if she takes her meds.

Spoke to the French doc in Pattaya and we are seeing him tomorrow so everything is looking great now! He said no one can put a life expectancy on an HIV/AIDS victim.

This French doc works for free and only charges you for medication. The money he makes he puts back into helping other patients. And if you can't afford the meds he discounts for you which I think is excellent. He relies on people rasing money.

As soon as my Stepmum is well enough I'm going to do some kind of sponsored event for definate. I really want to help HIV/AIDS victims and help more people be aware.

<{POST_SNAPBACK}>

By all means go and see this doctor and form your own opinion - some suggestions of questions I would be asking would include:

1. Are you allowed to practice medicine in Thailand?

2. What happens when your not available for any reason (holiday, sickness etc)

3. What testing of blood do you undertake (CD4, Viral load, CBC - complete blood count)

4. How is the testing undertaken and where are the results analysed

5. How often do you undertake follow up blood tests

6. What treatment guidelines do you follow (e.g which countries - they vary)

7. How do you get access to medicines

8. What medicines can you supply

9. How often do you meet with other HIV/AIDS specialists to establish best practice in treatment options.

10. What relations do you have with the main drug companies supplying ARV drugs

11. How do you handle problems related to side effects of some medicines - e.g anemia from AZT

12. What medicines would you be suggesting to use as the first course of treatment for our family and why?

13. What happens if I get sick - where do I go and are you allowed to practice in that hospital? Do they have specialist treatment facilities?

One of the reasons why AIDS is still such a problem in Africa is not to do with the supply of medicine per se, but more of the infrastructure required to monitor the medicines and their effects. The medicines are very powerfull and as such can cause as many problems as they solve without expert knowledge - its for that reason that for example, a GP in the UK does not issue prescriptions for HIV medication - the patient MUST go and see a specialist unit for HIV treatment and then undertake extensive testing, not just for HIV but also how the rest of the body is handling the infection. For example, AZT which is a mainstream treatment for HIV can often cause Anemia. Left unchecked, anemia can kill you or make you very very sick. Its an unfortunate side effect of this medicine - however with correct follow up testing, its quite easy to see it developing and then chnage the medicines if required. However in order to see it developing, you need to be having regular blood tests every 3-4 months which check the level of iron in your blood. There are many other illnesses that can affect a HIV positive person as well.

The point I am making is that you need to spend a lot of time ensuring that the doctor you choose will be able to meet your goals in HIV treatment - there are lots of well meaning people out there - but you need more than just well meaning people. One of the key's to HIV treatment is the laboratory back-ups in place - The friend who's treatment I pay for has also seen on seperate occassions, specialist hematologists (blood) , Dermatoligists (sp - skin experts), heart and lung experts all related to complications caused by HIV. The focal point of all this attention remains her own specialist doctor who she has been seeing for about 5 years - its her doctor that has suggested WHICH doctors she goes to see for second opinions and then they as a group discuss the outcome. The cost for these undoubted experts averages 500 baht a time - not exactly a large amount of money.

There are many many things to be considering at the moment - but remember the doctor needs to be with you for many many years to come.

Good luck

Quoting Kayo I have nothing intelligent to say Ice...but

Hugs and kisses

Lord... I don't really know you so well, IM- we don't seem to post on the same parts of the board- but please accept my condolences as well. It's brave of you to come out talking on this here, but then I guess you've been learning a lot about courage. Hope you won't mind if I offer my 2 cents.

Your stepmum is Thai? If so, you really might need to second-guess her and her doctors. A friend of mine helped his Thai bf take care of his grandfather (who had basically raised him) in a provincial hospital, but it was a constant battle to get proper care [my friend had some medical experience so he knew the standard treatment]. Either the hospital didn't know the proper treatments, or didn't have the proper treatments, or didn't care to give him the proper treatments, or didn't believe that he'd have the money or care to pay for the proper treatments (as it was, my friend kept the cost between him and his bf, as the family [said his bf] would have been shocked at the cost and probably have the attitude it would be better just to let him go untreated). As other posters have said, you might really want to consider seeing specialists in Bangkok.

In the end, the bf's grandfather probably had more trouble with depression than anything else- he stopped taking his meds and the problems that had been under control took their natural course. I think the psychological state of your stepmum is a big consideration here, and she's going to need a lot more support in the short term than your Dad, though both of them (and you) are going to need tons of love and support. I think you need to stop listening to doctors who want to tell you how long she has to live, and look for doctors who can help you improve her mood right now and quality of life in the longer term, who can give you and her and your Dad hope. As many posters have pointed out, meds can give victims a normal life, and her attitude might wind up being the deciding factor in getting through her current illness and dealing with the longer term.

Best of luck and big hug.

"Steven"

Lord... I don't really know you so well, IM- we don't seem to post on the same parts of the board- but please accept my condolences as well.  It's brave of you to come out talking on this here, but then I guess you've been learning a lot about courage.  Hope you won't mind if I offer my 2 cents.

Your stepmum is Thai?  If so, you really might need to second-guess her and her doctors.  A friend of mine helped his Thai bf take care of his grandfather (who had basically raised him) in a provincial hospital, but it was a constant battle to get proper care [my friend had some medical experience so he knew the standard treatment].  Either the hospital didn't know the proper treatments, or didn't have the proper treatments, or didn't care to give him the proper treatments, or didn't believe that he'd have the money or care to pay for the proper treatments (as it was, my friend kept the cost between him and his bf, as the family [said his bf] would have been shocked at the cost and probably have the attitude it would be better just to let him go untreated).  As other posters have said, you might really want to consider seeing specialists in Bangkok.

In the end, the bf's grandfather probably had more trouble with depression than anything else- he stopped taking his meds and the problems that had been under control took their natural course.  I think the psychological state of your stepmum is a big consideration here, and she's going to need a lot more support in the short term than your Dad, though both of them (and you) are going to need tons of love and support.  I think you need to stop listening to doctors who want to tell you how long she has to live, and look for doctors who can help you improve her mood right now and quality of life in the longer term, who can give you and her and your Dad hope.  As many posters have pointed out, meds can give victims a normal life, and her attitude might wind up being the deciding factor in getting through her current illness and dealing with the longer term.

Best of luck and big hug.

"Steven"

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Thankyou for your concern. I still read your posts even though like you said we don't post in the same parts of the board and I appriciate this post of yours.

We are fed up of hearing all life expectancy to be honest. And all of the other negative news that goes with it. I'm sorry to hear about your friends situation too.

At the moment I've been posting in all the fun threads and getting back to my normal self. I'm not exactly forgetting the situation I'm in but not thinking about it so much.

Life will always go on and we as a family are going to move ahead and deal with this.

I will be going to University and my Dad will start going back to work. My Stepmum will be doing what she does best watching movies and eating Thai food with her friends and family and my brother will start college.

As we step forwards putting this situation behind us but always keeping it in our memories this thread will sink to the bottom with all the other worn out threads on ThaiVisa but like I said the memory will never die.

I always walk forwards and never backwards and I think that is important for my family at the moment. Last night we all watched a film together and I saw my Stepmum and Dad laugh and smile, that made me all warm and fuzzy inside and there will be plenty of those moments to come

Just staying positive now really. Thanks for all your support

For what it is worth, I say listen carefully to Digger's advice. Best of luck and don't forget to keep eating well even though you are running about the place helping them out.

Ice Maiden,

My apologies for resurrecting this thread, but I do so out of genuine concern for your step-mother's welfare.

I am worried that the French doctor to whom you refer, whilst well-intentioned, may not be a specialist in the HIV field and it is vital that your step-mother and, perhaps to a lesser extent, your father have the best possible assessment of their condition.

I received the following information from someone in Pattaya intimately connected with HIV and its treatment:-

"Chonburi Hospital (government run) has what is known as the 'Anonymous Clinic' specialising in HIV/AIDS. Dr Chureeratana used to be head of the clinic and is probably one of if not the most knowledgeable person in Thailand on the subject.

As a minimum, I would advise the people concerned to pay the clinic a visit to get CD4, CBC and other fundamental tests done as soon as possible. They will be a fraction of the cost of Pattaya private hospitals. That said, they can be done at the Pattaya Banglamung government hospital but you have to tell them exactly which tests you want done or they will not do them, ridiculous as that may sound. The clinic there is extremely low profile for some reason so I would recommend Chonburi. I would hope that the basic tests have already been done. Even if they have, I would still recommend a visit to the Anonymous Clinic, taking along all test results, as the assessment of the condition before antiretrovirals are prescribed is critical in my view."

Your step-mother might also wish to consider contacting the Camillian Centre which offers support and treatment for those with HIV.

Best of luck,

Scouse.

Thankyou for your concern of my Stepmum and Dad, I'll be sure to pass on the information you have given me

Icey... How are things on this front?

Cant see you getting much of a reply here Kayo, check Iceys member group.