Doctors For Hiv

[J666]

I want to start a discussion for people with HIV about what they want from their doctor after a negative experience with a doctor that came highly recommended on this site.

Recommending a doctor is always difficult as there is the possibility that your character and their character will clash and I have just had that experience. It has left me stressed and worried about my care and I am paying for this 'care'. The doctor in question wanted no input from me, got very annoyed if I asked any of my support group for advice and just wanted to give me the drugs with no human care. She also told me that it was very very bad that I had become drug resistant to my first regime and that my health was in grave danger. Thank you for all this doc.

I am currently going through the process of now getting a second (and maybe even third) opinion before any further drug regime is started. The Red Cross messed up my drug resistance test and I am currently waiting longer than I should for these tests to be completed. Nothing has yet gone right with my care and I am left angry, frustrated and disappointed and wanted to start this forum to see what advice people have in finding the right doctor for my long term care.

I don't necessarily want to be recommended doctors, I want pointers of what to look for in a doctor to know that he/she is the right one for me.

Thank you

[Sheryl]

This is very individual. I think I know which doctor you are referring to as those who don't like her have more or less the same complaints. Others find her "doctor knows best" approach motherly and reassuring.

Conversely, the doctor I prefer to use whenever I need to bring someone I know for a consultation on HIV, and whom I like precisely because he understands he western style of a collegial relationship between doctor and patient and is willing to explain and involve the patient in decision making, some people dislike because he strikes them as "cold".

There is a strong cultural component to this in that what is seen as nurturing behavior in Asia is very much a top-down approach in which the patient is definitely unequal. A certain amount of scolding is also seen as a sign of caring and affection. Personally I find it thoroughly offensive and annoying, but to many Asians this is the appropriate way for someone in the "parent" role to behave in relation to the "child'.

I think generally speaking, doctors who have trained and worked in the West and who are comparatively young will be much more amenable to a collegial approach than those who have either not worked in the west or did so long ago and who are older.

With a chronic disease like HIV, the interpersonal relationship with the physician has a particularly great importance.

[J666]

This is very individual. I think I know which doctor you are referring to as those who don't like her have more or less the same complaints. Others find her "doctor knows best" approach motherly and reassuring.

Conversely, the doctor I prefer to use whenever I need to bring someone I know for a consultation on HIV, and whom I like precisely because he understands he western style of a collegial relationship between doctor and patient and is willing to explain and involve the patient in decision making, some people dislike because he strikes them as "cold".

There is a strong cultural component to this in that what is seen as nurturing behavior in Asia is very much a top-down approach in which the patient is definitely unequal. A certain amount of scolding is also seen as a sign of caring and affection. Personally I find it thoroughly offensive and annoying, but to many Asians this is the appropriate way for someone in the "parent" role to behave in relation to the "child'.

I think generally speaking, doctors who have trained and worked in the West and who are comparatively young will be much more amenable to a collegial approach than those who have either not worked in the west or did so long ago and who are older.

With a chronic disease like HIV, the interpersonal relationship with the physician has a particularly great importance.

Exactly, that's why I have started this thread. I think we basically agree on the fact that finding the right doctor for a disease like HIV requires them to have a combination of compassion and skill. Deliberately stressing the patient out by telling them that a situation is very very bad is not particularly helpful to the patient but is good for the doctor's ego because it places the doc in the 'god' role as they have the power over your health and recovery.

I am not here to chastise my doctor (even though I am annoyed) - what I am here for is to work through the lines of thought raised from the problems that I have encountered to help me discover what I really need from a doctor for my HIV status and then to find the right person with that in mind.

Thank you for your response, it really helped!

Any more thoughts on this subject are welcome.

[J666]

This is very individual. I think I know which doctor you are referring to as those who don't like her have more or less the same complaints. Others find her "doctor knows best" approach motherly and reassuring.

Conversely, the doctor I prefer to use whenever I need to bring someone I know for a consultation on HIV, and whom I like precisely because he understands he western style of a collegial relationship between doctor and patient and is willing to explain and involve the patient in decision making, some people dislike because he strikes them as "cold".

There is a strong cultural component to this in that what is seen as nurturing behavior in Asia is very much a top-down approach in which the patient is definitely unequal. A certain amount of scolding is also seen as a sign of caring and affection. Personally I find it thoroughly offensive and annoying, but to many Asians this is the appropriate way for someone in the "parent" role to behave in relation to the "child'.

I think generally speaking, doctors who have trained and worked in the West and who are comparatively young will be much more amenable to a collegial approach than those who have either not worked in the west or did so long ago and who are older.

With a chronic disease like HIV, the interpersonal relationship with the physician has a particularly great importance.

Exactly, that's why I have started this thread. I think we basically agree on the fact that finding the right doctor for a disease like HIV requires them to have a combination of compassion and skill. Deliberately stressing the patient out by telling them that a situation is very very bad is not particularly helpful to the patient but is good for the doctor's ego because it places the doc in the 'god' role as they have the power over your health and recovery.

I am not here to chastise my doctor (even though I am annoyed) - what I am here for is to work through the lines of thought raised from the problems that I have encountered to help me discover what I really need from a doctor for my HIV status and then to find the right person with that in mind.

Thank you for your response, it really helped!

Any more thoughts on this subject are welcome.

The situation got worse on my last (and final) visit. I am suffering from drug resistance and was basically told that I went on the tablets too late and that's it. The testers are having difficulty in testing for the drug resistance and I am currently waiting for the third attempt, and all while time passes by during this 'emergency' period. On leaving after my last visit I was wished 'the best of luck'. So, that's that.

I am leaving for the UK in a few days for hopefully better care and to try to restore my health. May I wish anyone seeking good advice for HIV care in the country the best of luck in finding the right doctor - I have been left scarred, disappointed and fighting for my health by the recommendation I got from the Thai Red Cross.

Better pack my bags.

Love to all who read this blog.

[J666]

This is very interesting. Yesterday I left a new post naming and shaming the doctor involved in my case and that post was removed! I thought this was a site for public information?

I am now having care at the Chelsea Hospital in London and the problems they have found so far make me worried for anyone receiving HIV care in Thailand. When asked for my initial drug resistance test before being started on the anti retro viral tablets i responded that one wasn't done. My doc muttered 'fuc_king charlatans' and immediately moved on. Basically, I have had to now stop these tablets to remove them from my system while they work out what drugs to put me on next. This is a very dangerous thing to do as the virus will go crazy but we have no choice - I was put onto the wrong tablets! This should not happen in the 21st Century, the information is out there IF the doctors can be bothered to read it.

As far as the resistance testing in Bangkok goes, I have been told that the three tests I had did not work because they test only a narrow parameter depending on the indiginous population and any cases out of this range will not test correctly. The worrying thing is the the Thai Red Cross did not know what to do to correct these tests and pronounced me 'untestable'. Dr M then wanted to guess what tabs to put me on next - this is something that should NEVER happen and in the right lab, a drug resistance test is ALWAYS possible.

On a more worrying note - I have also tested positive for syphillis. This year I have had a test at the Thai Red Cross and BNH Hospital for syphillis and they pronounced me as negative. It turns out the I am level 3 and that if it had gone on for much longer brain damage could occur. I am astounded that the testing is so lax in Thailand and this is putting people's lives at risk.

I am sure that more surprises are waiting to come forward. I am rapidly losing faith in any hospital health care in Thailand and the testing performed. Some doctors may be good but how can they help you if the testing is so lax?

My love to you all

xx

[Ijustwannateach]

1. 'Naming and shaming' by individuals is a very touchy affair in Thailand because of the strong slander laws, which give plaintiffs the right to sue under certain conditions even if the alleged material is proven to be true. Websites which aren't careful about such laws tend to be sued and/or shut down. Since this is a Thai-based forum, the mods have to try to implement the Thai law regarding discourse here.

2. It is sadly not unusual to hear stories like yours about doctors generally in Asia, even at the 'bestest bestest' hospitals in the 'mostest advancedest' countries. There is almost never any effective recourse or supervision in case of malpractice, and this reduces the incentive to do continuing study or professional development. In dealing with respiratory infection a few years ago, only 1 doctor among 3 that I saw over a month long period even bothered (or seemed to know the existence of) a machine (within the same office each time) which could determine gram-positive or gram-negative status of bacteria quickly (this helped point to the right *family* of antibiotics, anyway) and none of them ever seemed to think a culture was necessary.

There are exceptions, and there are better- or worse-fitting doctors for the individual culturally, but I would have to say that there I have met few doctors here who seemed to be in touch with the full medical toolkit and its uses, whether the tools are there or not. Perhaps in some cases that saves unnecessary expenditure, but having had several apparently poorly treated illnesses here, I tend to doubt it.

[Ijustwannateach]

Regarding Red Cross testing; that seems more serious. I have always been impressed by the 'people' side of their operation here and I would assume the testing is a fairly automated, by-the-book affair. Where did you eventually test positive (Chelsea again?) Was the type of test done by the Red Cross appropriate for detecting stage 3 (it is my understanding that the bug hangs out in different areas of the body in different stages)? Also, I think, tertiary stage can take quite some time to reach and the bug is dormant a lot of the in-between time, so perhaps your Red Cross test was taken during this dormant period?

Also, perhaps your doctors have already assumed this, but many times if you have any STD(s) it is very likely that you have also contracted chlamydia, which can be asymptomatic for long periods. Possibly the drugs used to wipe out the syphilis will take care of the chlamydia at the same time, but you might want to ask about this.

[Galong]

One of my best friends who is HIV+ was going to the Bangkok Phuket Hospital in Phuket. Though not caught at an early stage, his CD4 count was raised and his viral load soon became undetectable thanks to the ARVs given at this hospital.

It gets better. The doctor at this private hospital recommended that he go to the Mission Hospital as he pays social security here in Thailand and is therefore covered by the medical plan within the system. The doctor basically told him to go there to get the meds for free. The level of compassion in this case seemed really impressive.

Within the healthcare system, there are regular bi-annual tests. His results are always good.

Again, he was diagnosed after it was believed that he was HIV+ for a long time, perhaps a decade. He was quite sick, but now is back to top health.

I'm sad to hear that your personal experience was so poor. This is apparently NOT across the board here in Thailand.

Somewhat similarly, I have a rare lung disease. I've had it for over 30 years. I'm on fairly hardcore medicine. I've had my ups and downs, but I've not had any issues with the medical professionals here. I dare say that they are as good as the doctors when I was in the US.

Best of luck to you. Keep your chin up and get well soon.

[J666]

Regarding Red Cross testing; that seems more serious. I have always been impressed by the 'people' side of their operation here and I would assume the testing is a fairly automated, by-the-book affair. Where did you eventually test positive (Chelsea again?) Was the type of test done by the Red Cross appropriate for detecting stage 3 (it is my understanding that the bug hangs out in different areas of the body in different stages)? Also, I think, tertiary stage can take quite some time to reach and the bug is dormant a lot of the in-between time, so perhaps your Red Cross test was taken during this dormant period?

Also, perhaps your doctors have already assumed this, but many times if you have any STD(s) it is very likely that you have also contracted chlamydia, which can be asymptomatic for long periods. Possibly the drugs used to wipe out the syphilis will take care of the chlamydia at the same time, but you might want to ask about this.

Yes, I have tested positive at Chelsea but will gain more information about this at my next appointment on monday. I was last tested in Thailand 6 weeks ago and cannot presume that the syphillis has changed so much since then. The problem is that when you are pronounced negative you presume you are negative. I will be taking this matter up with both BNH and the Thai Red Cross when I get back to Bangkok. How can a doctor do his job if the labs are poor quality?

Yes, the cure for the syphillis will also cure any Chlamydia present, that much I do know. The cure for both is an injection of penicillin and I am about to get a huge dose in each cheek of my ass. Deep joy.

Thank you for your response.

[J666]

One of my best friends who is HIV+ was going to the Bangkok Phuket Hospital in Phuket. Though not caught at an early stage, his CD4 count was raised and his viral load soon became undetectable thanks to the ARVs given at this hospital.

It gets better. The doctor at this private hospital recommended that he go to the Mission Hospital as he pays social security here in Thailand and is therefore covered by the medical plan within the system. The doctor basically told him to go there to get the meds for free. The level of compassion in this case seemed really impressive.

Within the healthcare system, there are regular bi-annual tests. His results are always good.

Again, he was diagnosed after it was believed that he was HIV+ for a long time, perhaps a decade. He was quite sick, but now is back to top health.

I'm sad to hear that your personal experience was so poor. This is apparently NOT across the board here in Thailand.

Somewhat similarly, I have a rare lung disease. I've had it for over 30 years. I'm on fairly hardcore medicine. I've had my ups and downs, but I've not had any issues with the medical professionals here. I dare say that they are as good as the doctors when I was in the US.

Best of luck to you. Keep your chin up and get well soon.

I am going to be fine thank you and am not looking for sympathy. What I am saying here is that IF a patient does not conform with the usual treatment for HIV the doctors here seem clueless and the laboratories unable to check any results that do not fit within narrow parameters. This piece is meant to be about offering help from someone elses experiences.

I also have friends who have responded very well to their initial care and my partner is one of them. This is normal and is due to the decades of medical research into this disease. What is not normal is to be abused and given the wrong tablets while promoting yourself as the 'best in the country' and then for the doctor not to know what to do when her standard care has not worked. Personally, I think she is an endangerment to life and should not be let near a HIV patient again. The problem with HIV is that it affects everyone differently and therefore, to treat everyone the same way is a grave mistake.

I am very glad to hear that your friend is doing well - this is how it should be in the 21st century. The information is out there for doctors, all they need to do is read it and then do their job properly.

Much Love xx

[J666]

This is very interesting. Yesterday I left a new post naming and shaming the doctor involved in my case and that post was removed! I thought this was a site for public information?

I am now having care at the Chelsea Hospital in London and the problems they have found so far make me worried for anyone receiving HIV care in Thailand. When asked for my initial drug resistance test before being started on the anti retro viral tablets i responded that one wasn't done. My doc muttered 'fuc_king charlatans' and immediately moved on. Basically, I have had to now stop these tablets to remove them from my system while they work out what drugs to put me on next. This is a very dangerous thing to do as the virus will go crazy but we have no choice - I was put onto the wrong tablets! This should not happen in the 21st Century, the information is out there IF the doctors can be bothered to read it.

As far as the resistance testing in Bangkok goes, I have been told that the three tests I had did not work because they test only a narrow parameter depending on the indiginous population and any cases out of this range will not test correctly. The worrying thing is the the Thai Red Cross did not know what to do to correct these tests and pronounced me 'untestable'. Dr M then wanted to guess what tabs to put me on next - this is something that should NEVER happen and in the right lab, a drug resistance test is ALWAYS possible.

On a more worrying note - I have also tested positive for syphillis. This year I have had a test at the Thai Red Cross and BNH Hospital for syphillis and they pronounced me as negative. It turns out the I am level 3 and that if it had gone on for much longer brain damage could occur. I am astounded that the testing is so lax in Thailand and this is putting people's lives at risk.

I am sure that more surprises are waiting to come forward. I am rapidly losing faith in any hospital health care in Thailand and the testing performed. Some doctors may be good but how can they help you if the testing is so lax?

My love to you all

xx

AND THE RESULT IS! There should have been a roll of drums and maybe a gold envelope 555

I am now on a new regime of tablets, which is a relief. Dr Maitland of Chelsea Hospital said my blood was a total mess and I have been put onto a very powerful combination of drugs. I am now totally resistant to all aspecs of the first drugs, which is not good. This happened because of all the delays in testing. As soon as it was apparant that I was resistant to the truvada and stocrin, I should have been taken off them immediately. By not doing that my virus has mutated and my choices for drugs is now very limited - there is only one combination left that I can take after this one.

If I had not come back to the UK my situation would have got steadily worse and in a few months time I would have been dead. I hope that my experiences with the care I received in Thailand will help someone else avoid the problems I have had. I now have to stay in the UK until I am undetectable - this may take 3 to 6 months - and i miss my partner. The main thing is that I am not dead. If you have any friends receiving care in Thailand, get them to read this blog as the information here can save your life.

My love to you all

xx

[jdinasia]

To the OP ---

You are making generalizations about one Dr. and one Lab, and painting all care in Thailand by those very personal (and yes, very negative results!)

One of my best friends goes to Dr. Asada at Bumrungrad and is extremely pleased. I have gone with him a couple of times and I was incredibly impressed by Dr Asada. I can't speak well enough of the man! Informed, caring, and takes time with his patients particularly early on.

I am sorry that you had negative results with a Dr. here in Thailand but there are idiot Dr's everywhere.

Best of luck to you!

[J666]

To the OP ---

You are making generalizations about one Dr. and one Lab, and painting all care in Thailand by those very personal (and yes, very negative results!)

One of my best friends goes to Dr. Asada at Bumrungrad and is extremely pleased. I have gone with him a couple of times and I was incredibly impressed by Dr Asada. I can't speak well enough of the man! Informed, caring, and takes time with his patients particularly early on.

I am sorry that you had negative results with a Dr. here in Thailand but there are idiot Dr's everywhere.

Best of luck to you!

As I have said before in this blog, your friend has had the care that people should be given in the 21st Century and blog is about sharing information to help someone else who may have the same problem as me in the future - so there's no need to be so defensive. One reason why care for HIV patients has improved so much is the sharing of knowledge and I am sharing my experience to help others who may be (unfortunately) in the same boat as me. My experiences were at the same hospital as your friend but with a different and alledgedly more experienced doctor.

Yes, this should not happen and my lifespan has been shortened by 5 to 10 years because of it. Now all of us should avoid anyone else going through this experience by understanding where my treatment went wrong.

I hope this helps you understand what I am trying to do?