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Author Topic: Helping a young girl with her HIV  (Read 5462 times)

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Offline JohnD99

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Helping a young girl with her HIV
« on: May 06, 2012, 09:47:44 PM »
This is a strange situation, but I was exposed to HIV in February, and put on PEP.  I believe the PEP worked as I just had my 3 month post-exposure test today and it was negative.  This girl who I was with is only 21 years old, and has a 5 month old baby.  She lives in a village in a very poor country and knows absolutely nothing about HIV, other than that people in her town die of HIV very quickly.  This is primarily due to lack of education and lack of funds.  I have since become a voice of help and education for her, and have committed to cover her medical expenses as long as I am able.  I want to give her a chance at a long life.

I know a lot about HIV transmission and prevention, but managing an existing infection is all new to me.  I am struggling through the information and coming up with a gameplan for her.  I have put her in touch with who I believe is the expert in infectious disease at the best hospital in the biggest city near her.  I have corresponded with the doctor's assistant and made my initial list of requests.

I hope that I can use this thread to come back here and ask for help from you all, over time on her behalf.  I want her to have all the opportunities that someone in the Western countries would have.

Thus far this is what I have done.  Can you please tell me if there is anything important that's missing?

Three months ago:

1)  She had preliminary Viral Load and CD4 count (VL: 4300 CD4: 596 with 30.51%)
2)  I had her get an Hep C PCR test - Negative

This month:

1)  I have requested follow up Viral Load + CD4 to assess trend up or down.
2)  I have requested Pneumonia Vaccine for her.
3)  I have requested genotype testing for mutation / resistance.
4)  I have requested CBC and Chemical Panel as this was recommended for newly diagnosed patients on a web site.
5)  I have requested Diptheria, Pertussis, Tetanus shots.
6)  I have requested the hospital Gyno perform a PAP on her.

I have a very important question first:  I understand #5 is a live vaccine and this poses some risks of accelerating the virus replication, but reading about this the CDC apparently still recommends them, especially if the patient's CD4 is above 500.  I am unclear since they are recommended "every 10 years" if she had them as a child already.  I see some doctors saying you should not repeat them.  Yet she is 21 years old ... so ... ?  There was also mention of putting the patient on ART meds with the vaccine to suppress any temporary viremia that may occur.  Any merit to this?  I definitely dont want to accelerate her HIV by doing something unnecessary.

Question 2:  Hep A and B are recommended but if she is not going to be sexually active anymore, why bother?   Same for HPV vaccine.

Question 3:  Apparently tuberculosis is a huge issue for people with HIV and also a huge problem in her country, yet the TB vaccine poses some risks to HIV patients and from what I see is only roughly 40% effective.  Should she get it?

That's all I could find for now.  Getting her properly vaccinated i think already gives her a huge headstart in having a long life.  What else do newly diagnosed patients need done?

« Last Edit: May 06, 2012, 11:57:42 PM by JohnD99 »

Offline emeraldize

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Re: Helping a young girl with her HIV
« Reply #1 on: May 06, 2012, 10:55:09 PM »
Hello John,

You cited it clearly in the first sentence. This is a strange situation.

You wrote "I have put her in touch with who I believe is the expert in infectious disease at the best hospital in the biggest city near her."

Why is that not enough? If you want to fund her medical expenses that is honorable, but to be keen on being the director of her care and request tests about which you knoweth not, then you are overstepping your skillset. If the person you've found is not an expert, or you need a second opinion, why not seek another?

I must be honest and note that when I read your statement "I know a lot about HIV transmission and prevention" then why did you require PEP?

Perhaps someone else will weigh in here, but there is something odd about your post. You are not a doctor and yet you want to get information from all various locations and direct this young woman's care. You would, I think, be better off making and paying for an appointment with the best HIV doc located near you. Explain the situation to him or her, get their advice, take copious notes, convey them to the doc you've located in this young woman's home country and send the right amount of money to get her started on the road to health.

At the end of the day, it is still that doctor's call -- it is his licensure on the line. As you also noted, you would fund this as long as you are able---best to find out what resources are available for her once you are no longer able. Will she have access to meds if she is started on them?

Em

Offline darryaz

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Re: Helping a young girl with her HIV
« Reply #2 on: May 06, 2012, 11:33:39 PM »
Quote
I must be honest and note that when I read your statement "I know a lot about HIV transmission and prevention" then why did you require PEP?

We all know the answer to that one:  KNOWING what to do and DOING it are two entirely different things.

Offline JohnD99

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Re: Helping a young girl with her HIV
« Reply #3 on: May 07, 2012, 12:56:22 AM »
I am looking for only one thing - input on what a newly diagnosed person should do.  Not moral judgments or opinions on how strange the situation is, or why I was stupid enough to warrant PEP.

However I do appreciate your idea to sit down with an HIV specialist here and take notes to send her way.  That seems like a great idea, and I will take that advice.  I was just thinking that talking to people here who have had HIV for many years, some personal experience and input would be valuable too.

Why don't I just let the doctor do it? Even in the united states I wouldnt "just let the doctor" do anything.  With HIV you have to be involved in your fight.  Anyone who still believes that doctors are infallible, hasn't ever dealt with a doctor.  Even in my short stint with this experience, more than 3 major mistakes were made (including prescribing me the wrong PEP meds initially) that my own research fixed. 

Another example - she has been diagnosed for 3 months now, and it was me who had to figure out that there's a resistance test they should have done.  Nobody there suggested it for her.  They just gave her a positive diagnosis, and sent her home.  The HIV "culture" there doesn't include a lot of proactive behavior because most people there can't afford the "VIP" medical treatment.  In their culture, 99% of people get diagnosed with HIV, wait until full blown aids kicks in, try meds, and die.  So I had to make the request for the Genotyping test myself.  If there is anything the doctor feels is a bad idea, of course I would defer to her knowledge, and then go research it still, just in case. 

The only difference between an HIV expert and a lay person is the amount of education the person has on the topic.  Education and information is available to all.  The people on this site who answer HIV questions are not doctors.  Yet they are experts.

Lastly, people have options.  You can do the bare minimum with a doctor or you can be extremely thorough and proactive with your own health.  Everywhere I read I see recommendations for elaborate discussions and "a relationship" with your doctor.  To discuss how to fight it, and which one of a multitude of methods can be used to fight it. 

That's all I plan to do.  Exactly what she is unable to do for herself.  Be proactive on her behalf.  Be that person who interacts with her doctor. 
« Last Edit: May 07, 2012, 01:21:59 AM by JohnD99 »

Offline spacebarsux

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Re: Helping a young girl with her HIV
« Reply #4 on: May 07, 2012, 03:28:20 AM »
Is this girl literate in English and educated? If so, it might be a good idea to give her the link to this site so that she can educate herself on treatments, guidelines and all other issues pertinent to living with HIV. Or alternatively, you could print out information on, what's CD4, Viral Load, Treatments, Adherence etc from this site and explain it to her. Monitoring CD4/VL every 3-4 months is at the nub of living with HIV. And once one commences therapy, matters such as treatment combinations, side-effects, importance of adherence and resistance become pivotal.

Also, many developing countries provide free treatment to HIV+ people. The difference is that they usually prescribe the older drugs and if one insists on modern ARVs they're available in the market but people need to purchase them at market price. Generics are cheaper than the originals.

With her present CD4/VL counts it is unlikely that she'd be put on treatment right away as per the guidelines. Since she's newly diagnosed, it's important that she come to terms with her new reality and this means adjusting mentally from a emotional/social standpoint as much as from a health perspective. It might not be a bad idea for her to get counselling to cope with the trauma, if needed.

Also, I don't really understand how you presume that she's not going to be sexually active again.

Best

Edited typo
« Last Edit: May 07, 2012, 05:29:11 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline emeraldize

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Re: Helping a young girl with her HIV
« Reply #5 on: May 07, 2012, 08:10:43 AM »
"I am looking for only one thing - input on what a newly diagnosed person should do.  Not moral judgments or opinions on how strange the situation is, or why I was stupid enough to warrant PEP." 

No moral judgments were rendered by me. I agreed with your assertion that this is a strange situation. Further, you asserted you know "a lot" about transmission and prevention. So I inquired why was it that you required PEP. No one wrote anything indicating your level of intelligence. Perhaps your morality reference was to the subsequent poster.

Spacebar's question regarding "Question 2:  Hep A and B are recommended but if she is not going to be sexually active anymore, why bother?   Same for HPV vaccine." is a good one. Why would she not have sex again?

Have you read all of the education available via the tool bar on this site? That plus a chat with an expert should give you the assurances you want as you seek "input on what a newly diagnosed person should do". If you were to share with members of this forum what country/region you're working with to enable this young woman's care, perhaps there's even more site-specific insight that could come your way.  That might actually save you considerable time and money.

You mention nothing about the five-month old child being tested. Has that been done? That's another concern to be addressed based on what you've shared thus far.





 


Offline JohnD99

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Re: Helping a young girl with her HIV
« Reply #6 on: May 07, 2012, 09:14:12 AM »
Quote
Is this girl literate in English and educated? If so, it might be a good idea to give her the link to this site so that she can educate herself on treatments, guidelines and all other issues pertinent to living with HIV.
Unfortunately no, which is why I am here.  She doesn't speak a lick of english and we have been using professional translation services to correspond by email.  Its been difficult and expensive.  But worth it to me.  Its a blessing to help someone on this level who otherwise believes they will "die in 2 years" (her words).  Can you imagine being diagnosed with HIV, then taking a bus back to your "village" all by yourself.  Walking into a house with a mom and a brother who you can't tell.  And sitting there.  Day after day.  Going nowhere.  Doing nothing.  Stewing inside your own mind - completely alone - and no ability to go online and research, aside from long trips to an internet cafe where privacy is zero.  No way to get answers aside from 1 doctor appointment 3 months from that point.  No constant feed of new information - ways to take control of your condition - give yourself some hope.  Knowing little or nothing about HIV and having zero control?  This is what she has been dealing with and this is why I can't just let someone live in a mental torture like that.  So I have been doing everything in my power to encourage her, educate her, and give her hope. 

I have emailed numerous organizations in her country and been sent 30 page PDF files in her language (so thankful for that) which I will be printing out and snail mailing to her as she doesn't have a personal computer either yet (uses internet cafes).  Im hoping those PDF's will contain good, thorough information. 

I am starting to learn that the beginning phase of HIV infection has only so much involved, medically.  This small battery of vaccines and the "every-three-months" CD4/VL testing seems to cover most of it.  And the resistance test.  That's really all I wanted to be sure of by posting here.  Then the other major factors like adherence to meds once started, proper moment of initiation (based on CD4 trends), etc are the other major things to know. 

There is no HIV support system in her area aside from a women's shelter  which I have tried repeatedly to get ahold of.  They are secretive due to the stigma and wont correspond with me.  Plus its a 3 hour bus ride from her just to get there.  A lot of expense and time involved.  I will keep trying as I know moral support is probably the biggest need right now.

But I cant imagine being in her shoes.  My heart has gone out to her on so many levels, just being in a situation like this - where she lives.  I cant imagine the lack of control she must feel right now.

Quote
Why would she not have sex again?
Oh - I was just asking "if" .... If she *is* planning to continue having sex then I know the answer.  I was covering the part of the question I am not sure about.  At this time, rest assured, this girl has no intention of having sex.  Accurate or not, she has resigned herself to a life of celibacy.  I assume that will evolve as time goes on, but in the absence of further sexual exposures, are these two items necessary?  For Hep B the answer is no.  For HPV - and PAPs - - I'd say yes.   But that HPV vaccine is a scary one to me.  Heard much much much negative about it.  That's partially why I asked.  The fewer vaccines the better.  So if she could avoid it, ....

Quote
Have you read all of the education available via the tool bar on this site? That plus a chat with an expert should give you the assurances you want as you seek "input on what a newly diagnosed person should do".
I did read the newly diagnosed area, and for some reason couldn't find anything on practical listings of tests and vaccinations needed.  There was some general guidelines, but most of it was "Discuss the rest with your doctor - OH and make sure you find a GOOD HIV DOCTOR".  It was moreso a discussion of "what its like" and "stuff you can do" (like find moral support).  I failed to find anything detailed and medical.  If you could link me to a page that lists important tests and vaccinations and medical-only related checklists, I'd appreciate that.  Your suggestion to take notes and meet with a specialist was outstanding and I am going to do that.  probably a smarter idea than posting here, but I was envisioning a years-long thread where i can come back and ask questions as she encounters things.  Maybe I still can do that.

Quote
You mention nothing about the five-month old child being tested. Has that been done? That's another concern to be addressed based on what you've shared thus far.
The very first thing I did was suggest she stop breast feeding.  I suggested having the baby tested, and he was found to be negative. She needs to re-test the baby at some point.

So i guess as per my first list - nothing seems to be missing.  If that's the case, then great.  I appreciate everyone's input. 
« Last Edit: May 07, 2012, 09:23:50 AM by JohnD99 »

Offline emeraldize

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Re: Helping a young girl with her HIV
« Reply #7 on: May 07, 2012, 03:51:03 PM »
"I have emailed numerous organizations in her country and been sent 30 page PDF files in her language (so thankful for that) which I will be printing out and snail mailing to her as she doesn't have a personal computer either yet (uses internet cafes).  Im hoping those PDF's will contain good, thorough information. "

Does she want these documents sent to her or are you sending them because you think it's a good idea for her to have them? Without her consent, you might unwittingly out her in a setting where her privacy is key to her survival.

As you note your heart has gone out to her, but you also note not being able to imagine being in her shoes. That last part is very important -- you cannot imagine ANY of what she is going through -- not as a woman, not as a sex worker, not as a mom, not as poor, not as uneducated, not as a Thai person. So, if she has not clearly indicated to you to send this stuff -- don't do it. You may be unleashing a biting dog she will not ever tell you has bitten due to a host of cultural and linguistic differences. You have a strong sense of being a do-gooder and I suggest you keep that in check as you may do far more harm than good -- again, unwittingly.

 
« Last Edit: May 07, 2012, 03:55:45 PM by emeraldize »

Offline spacebarsux

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Re: Helping a young girl with her HIV
« Reply #8 on: May 08, 2012, 02:01:52 AM »
John, I agree with Emís post. As well-meaning and noble-intentioned as you are, you cannot possibly comprehend the intricacies of this girlís situation or her circumstances because youíre not confronted with her reality. If she lives in a remote part of a developing country (Thailand?) there may be social/cultural mores and norms weighing on her mind causing her to be initially cautious about seeking medical advice etc.

I too, fear that in the haste of trying to make a positive difference you shouldnít inadvertently have the opposite effect. Living with HIV is a marathon, it is a lifelong condition (at present), and itís perfectly ok for her to take some time to come to terms with everything and work out how she'd go about things. Ticking boxes in your post-diagnosis checklist may give you some satisfaction no doubt, but what this girl really needs is local help on the ground. Perhaps a female social worker working in a Public Health NGO in her country would be in a better position to assist with the ins and outs of her predicament?
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline JohnD99

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Re: Helping a young girl with her HIV
« Reply #9 on: May 12, 2012, 02:05:35 AM »
Quote
Does she want these documents sent to her or are you sending them because you think it's a good idea for her to have them? Without her consent, you might unwittingly out her in a setting where her privacy is key to her survival.
I have already thought ahead of time of the fact that her mailing address is a house with 2 families and 10 people living in it, including her mother.  She has said she does want the documentation.  She said she "wants to learn so she can improve her chances of a long life" and to educate herself.  She has asked me to send the paperwork.  I was intelligent enough to ask permission first.  I will triple check before mailing if it can get to her without anyone seeing it though.

You dont need to worry about these things.  I am not reckless about this.  I am an intelligent person who thinks of everything.  I appreciate your concerns, but they strike me as warranted for someone who doesn't think much about the ramification of things.   I think you guys are assuming the worst honestly.  She does not see a doctor in her town.  She takes a bus 6 hours to the doctor for this very reason.  Privacy.  The doctor whom she sees is at the best hospital in the region, and has no contact with her family.  This was by intent, and after much discussion.  This isnt being conducted recklessly, and there is no risk of my enthusiasm ruining her life.  Quite the opposite in fact. 

Quote
Ticking boxes in your post-diagnosis checklist may give you some satisfaction no doubt, but what this girl really needs is local help on the ground.
She has help on the ground.  Please dont assume that everything ive written is everything there is to know.  I feel like I am spending all my time explaining and justifying myself to you guys to put you at ease ... rather than getting advice and input on HIV.......... and that is fairly frustrating.  This thread has not gone anywhere near what I had hoped it would because I am only explaining myself over and over.  I have two individuals who work as liaisons and who have already visited her village to coordinate education and work with her - privately.  Nothing has been done recklessly. 

I have already stated above that there is no social worker.  There is a womens shelter which actually is 6 (not 3) hours bus ride away.  She has begged me to get her there so she can meet other women with HIV. Everything is being done with her consent, and as per her requests.  Nothing is being "forced on her". Lets stop trying to analyze why im doing this, how im doing this, and the possiiblity that im going to make things worse.  I was just asking for input on things necessary for someone recently diagnosed with HIV.  If that can't be the discussion ill bow out now and go talk to a specialist here in the states.  Im a big fan of social networking input but often times things don't go as they should.

Something I dont think you guys comprehend is that 99.9999999% of the people in this country *DO* die of AIDS within 5 to 10 years.  And this happens because they DONT do any of these things on my "checklist" which has now been referred to in slightly derogatory terms.  This isnt a checklist that "makes me feel good".  Im fairly offended you even wrote that.  This is leaps and bounds above what anyone else does in her country, to extend her life and give her little baby a mother.  Not sure why anyone would be viewing any of this negatively!  Shocking, honestly.  I am a grown man and am capable of considering ramifications, and moving carefully in someones best interest.  If you want me to stop, then this girl is going to die in 5 to 10 years.  Period.  Because that is the culture there with HIV.  Now can we get back on topic or will this just continue to be scolding and judgmental comments and discouragements?

Offline emeraldize

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Re: Helping a young girl with her HIV
« Reply #10 on: May 12, 2012, 07:22:32 AM »
" I am an intelligent person who thinks of everything." wrote John.

That is not true. All you have to do is re-read your threads in toto on this site.

Make an appointment with a specialist as I suggested earlier. Pay for the advice you want rather than continually be disappointed by and dismissive of what is offered here. Trust me, the super-smart people whom I respect on this site aren't even weighing in on this. You are transparent dear John - emphasis on john.

The best thing that happened due to your condomless f**k of this disadvantaged woman (not girl) was that she learned she is HIV positive and she can now get care, whether you are involved or not.

Good luck with your comparable website, which if it truly is comparable then why are you here? And good luck with f**king people who cannot understand your wall of words. The USD goes far in Thailand, doesn't it?  I wonder if I've seen you lurking in a mall in downtown Bangkok. Shudder.

" This is my last post in this thread." wrote Em.
« Last Edit: May 13, 2012, 09:04:50 AM by emeraldize »

Offline puuchai

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Re: Helping a young girl with her HIV
« Reply #11 on: May 12, 2012, 08:54:42 AM »
Dear John ,I find myself thinking 555555555.which means LOL laugh out loud in Thai.Having read all your posts on this forum, As the previous poster said (Make an appointment with a specialist),but with a Psychiatrist for yourself particularly,and please Buddha,help the poor Thai people to tolerate the poor individuals that are thinking with there dicks and dollars.5555555555555555555555.

Offline spacebarsux

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Re: Helping a young girl with her HIV
« Reply #12 on: May 13, 2012, 03:55:15 AM »

Something I dont think you guys comprehend is that 99.9999999% of the people in this country *DO* die of AIDS within 5 to 10 yearsAnd this happens because they DONT do any of these things on my "checklist" which has now been referred to in slightly derogatory terms.  This isnt a checklist that "makes me feel good".  Im fairly offended you even wrote that.  This is leaps and bounds above what anyone else does in her country, to extend her life and give her little baby a mother.  Not sure why anyone would be viewing any of this negatively!  Shocking, honestly.  I am a grown man and am capable of considering ramifications, and moving carefully in someones best interest.  If you want me to stop, then this girl is going to die in 5 to 10 years.  Period.  Because that is the culture there with HIV.  Now can we get back on topic or will this just continue to be scolding and judgmental comments and discouragements?

Your number is wildly inaccurate. But anyway- No, they die because they remain untested and/or they're diagnosed too late into the disease and/or they don't have access to ARVs when needed and/or because of poor adherence to meds causing resistance.

Your checklist has little to do with it. If you REALLY care maybe you should help put her in touch with NGOs on the ground (Thailand has many) that would doubtless be better suited in dealing with these issues and would be more sensitive about her socio-cultual context.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Blue75

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Re: Helping a young girl with her HIV
« Reply #13 on: May 13, 2012, 09:18:40 PM »
Hi John, although I'm do not know anything about the other countries and their protocals, health care or anything. I understand what everyone here is saying, mostly for the benefit of this young woman and her rights, confidentiality, and the lack of a lot of that....I just wanted to put in my two cents (which is not worth much)...I think you are a really good guy trying to do what you feel is best for a young, uneducated woman who doesn't have much (from what I've read) at her disposal to help herself much.  I think she is very lucky to have someone like you on her side trying his damnest to help.

I do also respect the others' opinions here too as I don't understand what goes on in the other parts of the country and they seem very concerned for her personal safety given her location.  From my not very experienced self, but I have a husband HIV+, you have done and requested the same tests as he/we did...it's all up to the ID doctor now and go with her professional opinion.  Once again, I commend you for your honesty, care and obviously a love for this young woman.

I wish the best for this young woman and her child and thankful she has someone to help her in the right direction..you can only do what you can do.  I hope I didn't overstep any bounds here as I can only attest to what we've done given my husbands dx and the steps thereafter, I just feel bad because I feel you really are trying to help..whether it is helpful or not..you want to.
Husband:
2/14/12 Tested HIV+
3/16/12: CD4-216, VL-56,500
5/4/12: Started Atripla
5/7/12: CD4-184, VL-12,000 (Taken off Atripla after 3 days, awaiting liver testing) Started antibiotics.

Offline Lad_Liam

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Re: Helping a young girl with her HIV
« Reply #14 on: May 16, 2012, 07:01:26 AM »
Hi John,
I jut want to address the origional post's questions on HPV and Hep A&B vaccinations.

Both are are benefit as complications from either Hep A&B and HPV are best avoided, especially for HIVers.

The HPV vaccine specifically protects against the strains of wart virus most linked with cervical/rectal cancer. It is most useful when given prior to any sexual exposure, as the various HPV strains are massively common among sexually active people. That said, my immunologist recommended it even if I  had been exposed.

Hep A and B wreck havock with your body, and Hep A is passed freely, sex or not, so assumptions about future sexual activity are no protection.

HIVers need to protect their systems, so vaccination is alwlays important. Flu vaccinations are an annual recommendation.
a new dark passenger joins the ride

Offline Matty the Damned

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Re: Helping a young girl with her HIV
« Reply #15 on: May 22, 2012, 05:40:05 PM »
Hi John,
I jut want to address the origional post's questions on HPV and Hep A&B vaccinations.

Both are are benefit as complications from either Hep A&B and HPV are best avoided, especially for HIVers.

The HPV vaccine specifically protects against the strains of wart virus most linked with cervical/rectal cancer. It is most useful when given prior to any sexual exposure, as the various HPV strains are massively common among sexually active people. That said, my immunologist recommended it even if I  had been exposed.

Hep A and B wreck havock with your body, and Hep A is passed freely, sex or not, so assumptions about future sexual activity are no protection.

HIVers need to protect their systems, so vaccination is alwlays important. Flu vaccinations are an annual recommendation.

One caveat with this: HIVers need to be aware which vaccines they can have and which they cannot. Some live type vaccines (eg: polio, measles?) are no-nos.

As for the OP, I am in complete agreement with Spacey and Em.

MtD

Offline Assurbanipal

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Re: Helping a young girl with her HIV
« Reply #16 on: May 27, 2012, 10:07:11 PM »
John

If you are interested in treatment guidelines for people with HIV, they are generally not a secret.    The US treatment guidelines are published on the internet at this link http://aidsinfo.nih.gov/contentfiles/lvguidelines/adultandadolescentgl.pdf


They are also not a quick read, but if you want to better understand current medical thinking and compare it to the treatment afforded your friend, you may find it helpful to read through the details, perhaps more than once.
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Ann

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Re: Helping a young girl with her HIV
« Reply #17 on: May 28, 2012, 06:05:30 AM »
John

If you are interested in treatment guidelines for people with HIV, they are generally not a secret.    The US treatment guidelines are published on the internet at this link http://aidsinfo.nih.gov/contentfiles/lvguidelines/adultandadolescentgl.pdf


Places like Thailand tend to go by the European/British guidelines more so than the US guidelines. You can find them at aidsmap.com. (They do differ.)

Also, if you check out their E-atlas (a database of hiv/aids services world-wide), you may be able to find resources in Thailand you did not know existed.

You can also find the British guidelines at the BHIVA website and at i-Base

« Last Edit: May 28, 2012, 06:11:26 AM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline idee

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Re: Helping a young girl with her HIV
« Reply #18 on: May 29, 2012, 09:23:44 PM »
Wow you have done a lot for this woman. Why don't you just marry her? I am not being rude or joking... I just mean you can take care of her better.

Offline forrest

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Re: Helping a young girl with her HIV
« Reply #19 on: June 03, 2012, 11:48:08 PM »
I debate on even commenting... b/c I don't like to argue...

But I do not understand the hatrad in this thread. It makes me sad.  No where did John mention that this girl was in Thailand. I am not sure why Thailand was brought up. 

I feel there is a mean spirit here from people that I have even respected.  :(  It makes me sad. I am beginning to see it a lot in these threads and it makes people like me not even want to speak up or say anything because I don't want to deal with the repercussions. Sometimes, I think a swift kick in the buttocks is warranted... but I don't understand why the venom here? Am I missing something?

Can't we just all get along?  :(
2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline Matty the Damned

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Re: Helping a young girl with her HIV
« Reply #20 on: June 03, 2012, 11:56:26 PM »
I debate on even commenting... b/c I don't like to argue...

But I do not understand the hatrad in this thread. It makes me sad.  No where did John mention that this girl was in Thailand. I am not sure why Thailand was brought up. 

I feel there is a mean spirit here from people that I have even respected.  :(  It makes me sad. I am beginning to see it a lot in these threads and it makes people like me not even want to speak up or say anything because I don't want to deal with the repercussions. Sometimes, I think a swift kick in the buttocks is warranted... but I don't understand why the venom here? Am I missing something?

Can't we just all get along?  :(

Awww. :) I don't have to look at your profile to know you're new around here.

Tell me, is this the first internet forum you've joined?

MtD

Offline forrest

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Re: Helping a young girl with her HIV
« Reply #21 on: June 04, 2012, 12:00:37 AM »

Tell me, is this the first internet forum you've joined?


Why yes is actually, Matt.  :-\

I'd just think that sometimes... knowing we are all going through quite a bit in dealing with HIV and related issues... that we would be a little bit more compassionate and kind as human beings to one another - that's all. 

Call me soft... or maybe it's because I'm pretty damned low myself right now... or maybe I am more sensitive right now because I am personally struggling... I dunno... but just seems like it wouldn't hurt to be a bit more tolerant at times is all?
2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline Matty the Damned

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Re: Helping a young girl with her HIV
« Reply #22 on: June 04, 2012, 12:10:12 AM »
Why yes is actually, Matt.  :-\

I'd just think that sometimes... knowing we are all going through quite a bit in dealing with HIV and related issues... that we would be a little bit more compassionate and kind as human beings to one another - that's all. 

Call me soft... or maybe it's because I'm pretty damned low myself right now... or maybe I am more sensitive right now because I am personally struggling... I dunno... but just seems like it wouldn't hurt to be a bit more tolerant at times is all?

Well, the thing with internet forums is they're not really places where people go to support each other. That's just a cover.

Internet forums are places where people go to be douchebags to other people. We say things here that we wouldn't dare say in real life. Presumably because one can't get a broken nose on the internet.

But stick with us. Whilst it's a bit traumatic when you're new, over time you'll discover that this approach to life is perversely therapeutic. :)

Pictar related:



MtD

Offline jkinatl2

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Re: Helping a young girl with her HIV
« Reply #23 on: June 04, 2012, 12:46:03 AM »
I debate on even commenting... b/c I don't like to argue...

But I do not understand the hatrad in this thread. It makes me sad.  No where did John mention that this girl was in Thailand. I am not sure why Thailand was brought up. 


The OP was and is an HIV negative person. Some of us who have been on this forum a long time (and have worked within the HIV community, both locally and globally) find that this smacks of sex tourism, condescension, and *even* if it is well-intentioned, the intrusive nature of the OP's actions might well cause the girl in question to be ostracized, or even killed.

In some areas, especially those known for sex tourism and prostitution, being labeled as HIV positive is a metaphorical - and sometimes literal - kiss of death.

We take umbrage when someone trues to insinuate themselves into a culture whose complexity and nuances they might not be remotely aware of, and cause disruption that might have horrific repercussions.

Is this motivated by guilt? Love? A deep altruism? Who knows? I don't pretend to know the heart of the OP.

I am sorry you are going through a down time, forrest.

Sometimes it DOES hurt to be more tolerant. Sometimes it causes damage that some of us have seen first hand, and know all too well. Please don't think we behave the way we do without a valid reason. If you know anything about this group, you ought to know that.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline phildinftlaudy

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Re: Helping a young girl with her HIV
« Reply #24 on: June 04, 2012, 01:28:50 AM »
She lives in a village in a very poor country and knows absolutely nothing about HIV, other than that people in her town die of HIV very quickly.  This is primarily due to lack of education and lack of fundsI have since become a voice of help and education for her, and have committed to cover her medical expenses as long as I am able.  I want to give her a chance at a long life.

I know a lot about HIV transmission and prevention, but managing an existing infection is all new to me.  I am struggling through the information and coming up with a gameplan for her.  I have put her in touch with who I believe is the expert in infectious disease at the best hospital in the biggest city near her.  I have corresponded with the doctor's assistant and made my initial list of requests.[/u]

I hope that I can use this thread to come back here and ask for help from you all, over time on her behalf.  I want her to have all the opportunities that someone in the Western countries would have.

Thus far this is what I have done.  Can you please tell me if there is anything important that's missing?

Three months ago:

1)  She had preliminary Viral Load and CD4 count (VL: 4300 CD4: 596 with 30.51%)
2) I had her get an Hep C PCR test - Negative

This month:

1) I have requested follow up Viral Load + CD4 to assess trend up or down.
2)  I have requested Pneumonia Vaccine for her.
3)  I have requested genotype testing for mutation / resistance.
4)  I have requested CBC and Chemical Panel as this was recommended for newly diagnosed patients on a web site.
5) I have requested Diptheria, Pertussis, Tetanus shots.
6)  I have requested the hospital Gyno perform a PAP on her.

I have a very important question first:  I understand #5 is a live vaccine and this poses some risks of accelerating the virus replication, but reading about this the CDC apparently still recommends them, especially if the patient's CD4 is above 500.  I am unclear since they are recommended "every 10 years" if she had them as a child already.  I see some doctors saying you should not repeat them.  Yet she is 21 years old ... so ... ?  There was also mention of putting the patient on ART meds with the vaccine to suppress any temporary viremia that may occur.  Any merit to this?  I definitely dont want to accelerate her HIV by doing something unnecessary.[/u]

Question 2:  Hep A and B are recommended but if she is not going to be sexually active anymore, why bother?   Same for HPV vaccine.

Question 3:  Apparently tuberculosis is a huge issue for people with HIV and also a huge problem in her country, yet the TB vaccine poses some risks to HIV patients and from what I see is only roughly 40% effective.  Should she get it?

That's all I could find for now.  Getting her properly vaccinated i think already gives her a huge headstart in having a long life.  What else do newly diagnosed patients need done?

For those who have expressed "concern" that "John" is being treated unfairly.....

I am not only educated in Social Work - but have been a social worker for nearly 20 years..... one of the first things that we learn is empowerment of the client. Not what we want - but what the client wants - and also base everything that the client wants on various systems that surround the client.

Reading John's post - which I have done several times (in addition to the responses) - is very concerning and is disturbing.

Please note the "God" complex (indicated by the highlighting of the use of "I" in the OPs initial post). The view basically that these people - this girl - is unable to take care of herself - so, "I" (the "I" being John) have to come to the rescue - as only "I" (once again someone other than the girl - or young lady) know best......  "I" am the only one that can save this person; that knows what is right for this person; and "I" am the one that should "plan" everything that occurs in this person's life.

As a social worker, we are taught that the person is given information (if she desires it) and makes decisions based on the information given. It is not about rescuing the person - as that is very demeaning.

While it may make the OP feel better - is that really supposed to be the intent? Is this about empowering the young lady or making the OP feel better and even more in control over someone else's life.

Personally, I remember hearing someone tell me once that they were not prejudice as they were consistently helping those who "could not help themselves." It was always about how "these poor, uneducated people" needed others to do for them because they simply were not capable of doing it. ----- Remember.... prejudice and racism isn't always expressed in hateful words - sometimes, it is expressed by people not thinking that others are capable of managing their own lives. That these "people" can not do on their own - and need others to do for them.

I just keep going back to the OPs first post ---- and while he may have good intentions - I also have to say that these good intentions would best be put to use by providing the young lady with guidance that leads her to professionals who will let her direct her life and course of care ---- or actually trusting her enough to know that she will find her way....... believe me when I say that people (even in "poor, uneducated" villages)  are able to find their way (many times they know the way - they may not have the resources - but they know the way). The OPs post makes it appear that he has determined that even if the resources are provided  - which he is making sure they are - well, the young lady does not have the "where with all" to find her own way once those resources are made available. Only he knows what is best for her and only he can develop the plan for her life (doubt me on any of this?  please see above bold and underlined areas of his post).

The fact that the OP makes it clear that this is a poor, uneducated, young lady with a baby and that he had to undergo PEP due to possible exposure to HIV - makes it seem like he is someone who capitalized on the "vulnerabilities" (low incomes, under-education) of a "village," but doesn't want to deal with the shame, guilt, or reality of that - because he is not like those "other horrible people" that take advantage of these people because he is sticking around to take care of their lives (or at least her life) - as only he knows how....

And that is the reality of it.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline spacebarsux

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Re: Helping a young girl with her HIV
« Reply #25 on: June 04, 2012, 04:37:52 AM »
I debate on even commenting... b/c I don't like to argue...

But I do not understand the hatrad in this thread. It makes me sad.  No where did John mention that this girl was in Thailand. I am not sure why Thailand was brought up. 

I feel there is a mean spirit here from people that I have even respected.  :(  It makes me sad. I am beginning to see it a lot in these threads and it makes people like me not even want to speak up or say anything because I don't want to deal with the repercussions. Sometimes, I think a swift kick in the buttocks is warranted... but I don't understand why the venom here? Am I missing something?

Can't we just all get along?  :(

Forrest, I don't think Em or I were mean-spirited at all. We were being brutally forthright and candid keeping the girl's well-being uppermost in our minds.

If one simply looks at the OP's previous posts in Am I Infected, you'd see that the girl in discussion is a sex-worker in Thailand. One good that came of the OP's sexual encounter no doubt, was that she learnt of her HIV status.

However, the OP, for whatever reason, chose to go a step further and meddle with her personal affairs in social surroundings that he does not understand, nor can he appreciate the fallout of some of his ill thought-out and hasty decisions: e.g. mailing her documents and such.

I live in a big city in India and I know for a fact that people in remote parts of Asian countries such as India, Sri Lanka, Thailand, Vietnam etc tend to be traditional and full of prejudices. I do not pretend to know what it is like to be a girl in a remote Thai village because I am not one. Ergo, if one is not confronted with her reality, it would be conceited, perhaps dangerously so, for one to take unilateral decisions on her behalf, especially when it is so blindingly obvious that certain actions are likely to exacerbate, rather than assuage the girlís predicament.

Like others have already stated, the OP is a HIV negative man living in the West, not a Thai girl in a remote village.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline ratcat

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Re: Helping a young girl with her HIV
« Reply #26 on: June 04, 2012, 01:16:21 PM »
Maybe he infected her!  Sounds like Thailand to me.  She can get free meds and checkups there according to the current "30 baht scheme".  I hope that this girl is brave enough to face up to her own reality and get the care she needs and not just wait until she gets sick like most do here in Thailand.  Go easy on the snail mail dude...you don't want to "out" her and have her be ostracized by her entire village. 

 


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