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Author Topic: Seeking Advice on behalf of a friend.  (Read 646 times)

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Offline JohnD99

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Seeking Advice on behalf of a friend.
« on: April 29, 2014, 11:21:28 PM »
Hello everyone -

First I want to say thank you to everyone who takes their personal time to post here.  HIV is not a simple condition to manage, as per much reading I have done.  So your input is very valuable to me.

I continue to try and help a friend in Thailand, to get better medical care than most people there get.  As you may know, people in Thailand typically don't live longer than 5-10 years with HIV because the medical culture there is such that very little is done to manage the condition, and treat it appropriately. 

I was present when she was diagnosed, and I made a promise to help her afford her medical care as long as I could.  But I have repeatedly run into doctors who pay very little attention, or are not educated on the condition sufficiently.  So I have had to engage them in discussions to ensure she gets proper testing, and treatment. 

I really would love to bounce questions of you guys, and get feedback that I can bring to her doctor.  One good thing about the doctors out there:  They listen to feedback and willingly act on it as long as it isn't contrary to their understanding.  With a condition like HIV there are a thousand possible routes one can take.  So they often have no problem doing things that make sense.  They just need to be prompted quite often. 

I managed to get her all the necessary vaccinations listed on this site for someone newly diagnosed.  So that's good.  Also got her baseline CD4 and Viral Load testing done.  Got her first PAP taken care of, and even a "Drug Resistance" test to see what medications would suit her best.  Very happy I was able to help facilitate all of those things.

Lastly, the government hospital she was going to was very bad.  And they put her on AZT, which is making her extremely sick.  Extremely sick.  So I found her a very good private clinic in Phuket that is very communicative and willing to take her in.  Most locals can't afford this clinic, but that is why I am here.  To help her get the best health care.  So I am going to pay. 

I wanted to ask first off  - I see there are 30+ medications for HIV.  If you wanted to get a young 22 year old girl off of the older drugs that have a much less positive safety profile (specifically AZT) and onto something newer with a much safer, easy on the system treatment, which one would you think of?  My mind keeps telling me Truvada, but a page on this site mentions that Truvada is nearly the same as AZT.  I have heard of many people in my life who got very very sick from AZT so I would prefer she steer far clear of anything that is similar to it. 

In the end this will be a discussion with the Doctor.  But the doctor will no doubt be interested to know what I am willing to *pay* for.  Because they have access to nearly everything, but very few of the locals can afford to buy it.

Thanks so much everyone.

Offline Joe K

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Re: Seeking Advice on behalf of a friend.
« Reply #1 on: April 29, 2014, 11:47:36 PM »
John,

It's great that you are helping your friend, but nobody here can suggest which drugs she might take, as we are not her doctor.  Picking antivirals can be somewhat complicated, depending upon the patient involved.  I would suggest you see what the doctor suggests and if you have questions, come back and post them in this thread.

Joe

Offline JohnD99

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Re: Seeking Advice on behalf of a friend.
« Reply #2 on: April 29, 2014, 11:53:17 PM »
Thanks Joe - ill do that.

As a general "topic" - is there a class of drugs that you guys know are considered safer and just as effective?   I guess this is an impossible question considering there are about 34 of them total!   I guess I just want her off AZT as soon as possible.  The doctor will probably make some suggestions.  Hopefully I can come back with a "short list".

Thanks again.

Offline Joe K

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Re: Seeking Advice on behalf of a friend.
« Reply #3 on: April 29, 2014, 11:58:14 PM »
John,

It's not up to you which drug she takes, because you are not a doctor.  I understand your desire to help, but this is not your decision.  It is between her and her doctor and nobody here is going to second-guess her doctor on which meds she should take.

For you to be suggesting which drugs she should take, you are over stepping your role as a friend, regardless of whether you are helping to pay her bills or not.

Joe

Offline tednlou2

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Re: Seeking Advice on behalf of a friend.
« Reply #4 on: April 30, 2014, 12:05:31 AM »
John,

It is good you're being an advocate for your friend's care.  I'm not sure what meds are available there.  I can share this article from a respected HIV doctor and researcher, which is targeted for an American audience.

All the best to your friend. 

http://www.thebody.com/content/74191/antiretroviral-therapy-in-2014-how-does-a-doctor-c.html

Offline JohnD99

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Re: Seeking Advice on behalf of a friend.
« Reply #5 on: April 30, 2014, 12:09:25 AM »
Thanks Ted.

Joe - please see above regarding the education levels of doctors in Thailand regarding HIV.  This is not the united states we're talking about.  These are doctors who don't even bother running CD4 tests unless you insist.   Its a very different culture there with this disease, and people with HIV there are treated like lepers.  They are not given the same level of care that you are used to.  As such, intervention is not only important, it can add years to her life.


Offline Joe K

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Re: Seeking Advice on behalf of a friend.
« Reply #6 on: April 30, 2014, 12:29:12 AM »
Thanks Ted.

Joe - please see above regarding the education levels of doctors in Thailand regarding HIV.  This is not the united states we're talking about.  These are doctors who don't even bother running CD4 tests unless you insist.   Its a very different culture there with this disease, and people with HIV there are treated like lepers.  They are not given the same level of care that you are used to.  As such, intervention is not only important, it can add years to her life.

John,

I read your posts, so do not try and act condescending to me.  You are negative and much of what you say about HIV and drugs is simply not true.  I also read your response to the Truvada PreP thread, where you suggested that the OP should not use PreP because you think he should not.

John, you are not a doctor or pos, so stop telling people how to manage their health.

Joe

Offline Jeff G

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Re: Seeking Advice on behalf of a friend.
« Reply #7 on: April 30, 2014, 08:00:47 AM »
John . This statement you made is very telling ...

I wanted to ask first off  - I see there are 30+ medications for HIV.  If you wanted to get a young 22 year old girl off of the older drugs .


She is not a girl, she is a woman and unless she is mentally not capable of making her own decisions she is the one that should be encouraged and empowered to make her own decisions with the help of her doctor . If she speaks English please invite her to resister for an account here so that she can get the information she needs to go forward . 


I have read your posting history and its clear you have made up your mind about some aspects of HIV and hold on to notions that are not based in fact or science . I am not going to attempt to discuss or change your mind but I did want to address this particular thread and tell you I am absolutely convinced that while you may think you are helping this woman the truth is you are not . There is nothing you can do for her that she cant do for herself and that should be the ultimate goal .   

If you care about her you will encourage her to do her own research and outreach . You do not have HIV, she does . She is the one that can and should be talking to her doctors and making her own decisions . If you want to offer her emotional moral support you need to butt out of her medical decisions . Please ask her on my behalf to join us here on the forum ... I would love to talk with her, you ... not so much .     

Offline mecch

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  • red pill? or blue pill?
Re: Seeking Advice on behalf of a friend.
« Reply #8 on: April 30, 2014, 08:22:23 AM »
John, I responded to your other post about PREP.
Yes, obviously it would be great if your friend gets off AZT. Since you are paying so she has better doctors and hospitals, tests, and drugs. etc -- perhaps you can put some trust in these doctors to find the better combo for her? 
Why doesn't she, or OK, you, post the newly suggested combo here when you find out what it is?  And you seem clever enough to read the info and update your knowledge about the new molecules, yourself. She can ask the doc if its new, and good. There must be some good doctors in Thailand so I assume she has a good one now, right?
Yeah finally its between her and her doctor.
I don't think anyone is poo-pooing your idea that being on outdated drugs is not great, if there are better options...
Just a question of style of communication and behaviour, I guess.
 ;D

Your comment on how different countries may treat HIV+ people is taken into account. Surely, yes, its true.  Keep up the fight for better care.  HIV can be a manageable condition.  Should be! 
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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