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Author Topic: Stressful Times  (Read 3462 times)

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Offline pozpete

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Stressful Times
« on: June 22, 2011, 02:23:27 PM »
8 months ago I started medication (Truvada, Reyataz & Novir) and it's been a nightmare.

Aged 26, I looked about 20, nobody would believe my real age when I told them. After taking the tablets my face has become disfigured.

I was told by my doctor none of the tablets I was on caused lipodystrophy and I was imagining it. A few months later, I presented them with before and after photos and a document I'd printed off the internet that clearly stated one of the tablets I was taking caused lipodystrophy.

They quickly backtracked and said they would apply for funding for facial fillers. However, after 2 months of chasing it up with my doctors, they finally told me the funding had been denied and had gone in for appeal.

I'm not 'out' with my HIV to people and the look on some of my friends that I haven't seen in awhile faces when they see what I look like now is heartbreaking.

Also, where I'm not 'out', I can't go to my local help centre for people with HIV, so I have no one to talk to and hardly leave the house because of my face.

I don't know what to do.

Offline Jeff G

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Re: Stressful Times
« Reply #1 on: June 22, 2011, 02:29:03 PM »
I would listen to what your doctor told you , being on HIV meds for 8 months isn't going to give you lipo . Maybe some counseling could help you to deal with your HIV status .  

How long have you been HIV positive if you don't mind me asking ?

Offline pozpete

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Re: Stressful Times
« Reply #2 on: June 22, 2011, 02:31:15 PM »
No. It HAS given me lypo and the doctors are now in agreement that it has.

Offline Jeff G

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Re: Stressful Times
« Reply #3 on: June 22, 2011, 02:33:13 PM »
No. It HAS given me lypo and the doctors are now in agreement that it has.

How long have you been living with HIV ? You say here you are 26 but your profile reads that you are 16 ... ?
« Last Edit: June 22, 2011, 02:42:48 PM by jg1962 »

Offline Joe K

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Re: Stressful Times
« Reply #4 on: June 22, 2011, 02:41:17 PM »
Have you had any types of medical issues lately, or do you smoke, or maybe you have lost some weight?  All of these can affect how you look, so it may have nothing to do with any medication.  As jq said, you don't get lipo after 8 months on ARVs.

Offline pozpete

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Re: Stressful Times
« Reply #5 on: June 22, 2011, 02:53:06 PM »
The first 3 years is when it takes effect and my doctors have agreed.

It has also distributed fat on my 'love handles', another clear sign of lypo.

I don't smoke, neither have I lost weight.

Offline pozpete

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Re: Stressful Times
« Reply #6 on: June 22, 2011, 03:07:10 PM »
I honestly thought I'd find some help on this forum.

I never in a million years thought I'd encounter rude people that think they know more about my life than I do!

Offline phildinftlaudy

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Re: Stressful Times
« Reply #7 on: June 22, 2011, 03:15:32 PM »
I honestly thought I'd find some help on this forum.

I never in a million years thought I'd encounter rude people that think they know more about my life than I do!
a) you never stated what type of "help" you are looking for
b) I don't believe in reading through the responses that anyone has been rude to you
c) No one knows more about your life than you - that is why those responding were asking for additional information

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 mecch

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Re: Stressful Times
« Reply #8 on: June 22, 2011, 03:20:10 PM »
Listen, the first responses weren't really considerate.  I apologize for that.

The reason people react with skepticism is that yours is a very very unusual result.  Very.

But, if your doctors agree you have had rapid lipo, than we have to take you at your word.

It would be nice to give us some more information:  

1) What are your numbers?  

2) Why haven't you SWITCHED combos?  

3)  What are your doctors going to do about stopping the lipo?  Facial fillers will NOT stop the lipo, so tell us what the doctors told you about the actions they advise now.

4)  Please confirm that you realize that every single HAART medicine has somewhere, in the LONG list of possible effects, lipo.   Also confirm you understand the difference between lipoatrophy and lipodystrophy.

__________________

You seem quite isolated so I hope you stick around this forum and start communicating on any topics you care to.  Its one thing to come here with a specific problem, thats pretty normal. But please stay and become part of this community so you don't feel so alone.  

Tell us more about youself, if you care too.

Also, for the nonvirtual real world, I think its time for you to find someone you can trust to talk about your new reality.  It must be awful to have friends and/or family and/or colleagues noticing a change and wondering why, and you can't say anything.  

The immediate response to feeling bad about your image is to stay locked away, but its not going to work for the long haul.  

You are only 26 - you have a very very long life ahead of you to live.

I'm sure if you open up some more here, we can help you find a constructive way forward.

Take care!

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Joe K

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Re: Stressful Times
« Reply #9 on: June 22, 2011, 03:26:37 PM »
I honestly thought I'd find some help on this forum.

I never in a million years thought I'd encounter rude people that think they know more about my life than I do!

Maybe, if you were a little less defensive, you could understand why we are cautious of your story.  Nobody said you were lying, we simply expressed doubt that you could develop lipo after 8 months on ARVs.  The reason we do this, is because this forum is based on sound HIV science and we do not want readers to become confused regarding side effects of medications.  Mecch has presented a number of very important questions and if you can answer those, then we can better assist you.

Offline leftalone

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Re: Stressful Times
« Reply #10 on: June 22, 2011, 03:28:39 PM »
I donno what to say  coz even i am dyin day by day.. got test 2 weeks back and in juzz one blink ,life around me got changed.. all my dream put to an end... M srry but i will pray for u n for all who has dis deadly virus.. and i really feel disgusted for those people who has this n still they ruins opposite person's life!!
Cd4 612 , VL-106042 @19% as on 08/28/2012

Offline Joe K

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Re: Stressful Times
« Reply #11 on: June 22, 2011, 03:33:29 PM »
I donno what to say  coz even i am dyin day by day.. got test 2 weeks back and in juzz one blink ,life around me got changed.. all my dream put to an end... M srry but i will pray for u n for all who has dis deadly virus.. and i really feel disgusted for those people who has this n still they ruins opposite person's life!!

Too bad you could not make your first post anything but an insult to the people who populate these forums.  I'm sorry you tested poz, but don't try and take your anger out here.

Offline pozpete

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Re: Stressful Times
« Reply #12 on: June 22, 2011, 03:34:26 PM »
Listen, the first responses weren't really considerate.  I apologize for that.

The reason people react with skepticism is that yours is a very very unusual result.  Very.

But, if your doctors agree you have had rapid lipo, than we have to take you at your word.

It would be nice to give us some more information:  

1) What are your numbers?  

2) Why haven't you SWITCHED combos?  

3)  What are your doctors going to do about stopping the lipo?  Facial fillers will NOT stop the lipo, so tell us what the doctors told you about the actions they advise now.

4)  Please confirm that you realize that every single HAART medicine has somewhere, in the LONG list of possible effects, lipo.   Also confirm you understand the difference between lipoatrophy and lipodystrophy.

__________________

You seem quite isolated so I hope you stick around this forum and start communicating on any topics you care to.  Its one thing to come here with a specific problem, thats pretty normal. But please stay and become part of this community so you don't feel so alone.  

Tell us more about youself, if you care too.

Also, for the nonvirtual real world, I think its time for you to find someone you can trust to talk about your new reality.  It must be awful to have friends and/or family and/or colleagues noticing a change and wondering why, and you can't say anything.  

The immediate response to feeling bad about your image is to stay locked away, but its not going to work for the long haul.  

You are only 26 - you have a very very long life ahead of you to live.

I'm sure if you open up some more here, we can help you find a constructive way forward.

Take care!




No it's o.k honestly, I should have been more forthright in my initial post, it was just months and months of stress and it felt so good writing it that I forgot to mention what I need advice on and it became more of a confessional.

My numbers are now CD4 500/VL 0. They can't switch the particular medication that causes lypo because unfortunately I have hep b too and that one treats both.

My doctors have advised me on nothing in regards to stopping the lypo. Is there something they can do then?

I'm not aware of the difference, I had to Google the spelling so maybe I got lipoatrophy and lipodystrophy mixed up.

I can't come out about my status because I have slept with (protected & safely) mutual friends and I'll be strung up by my balls by the general community. Plus the gay scene is so revolting intolerant.

I work for a very macho, connection based company also and my work life would be ruined.

I don't really want to go on like this and think about killing myself in detail about 4 times a day.



Offline mecch

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Re: Stressful Times
« Reply #13 on: June 22, 2011, 03:35:25 PM »
I donno what to say  coz even i am dyin day by day.. got test 2 weeks back and in juzz one blink ,life around me got changed.. all my dream put to an end... M srry but i will pray for u n for all who has dis deadly virus.. and i really feel disgusted for those people who has this n still they ruins opposite person's life!!

Leftalone, start a new thread and introduce yourself.  Welcome to the forum.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Joe K

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Re: Stressful Times
« Reply #14 on: June 22, 2011, 03:42:13 PM »

No it's o.k honestly, I should have been more forthright in my initial post, it was just months and months of stress and it felt so good writing it that I forgot to mention what I need advice on and it became more of a confessional.

My numbers are now CD4 500/VL 0. They can't switch the particular medication that causes lypo because unfortunately I have hep b too and that one treats both.

My doctors have advised me on nothing in regards to stopping the lypo. Is there something they can do then?

I'm not aware of the difference, I had to Google the spelling so maybe I got lipoatrophy and lipodystrophy mixed up.

I can't come out about my status because I have slept with (protected & safely) mutual friends and I'll be strung up by my balls by the general community. Plus the gay scene is so revolting intolerant.

I work for a very macho, connection based company also and my work life would be ruined.

I don't really want to go on like this and think about killing myself in detail about 4 times a day.

Pete, thoughts of suicide are very dangerous and I urge you to find someone you can talk to about these issues.  I suffer from depression and right now you are not thinking clearly and you need some help.  What you are feeling and experiencing is perfectly normal, it's really hard to adjust to being poz, especially when you have other medical issues.  I understand how you might feel, but ending your life is not an answer to anything.  Please find someone who can help you.  You are facing life altering events and there is no shame in seeking treatment for how you feel.

Feelings are neither good or bad, they just are.  It's the actions that come after the feelings that can cause concern.  However, no matter how bad you may feel, it will get better with time, but for right now, please find some help.  This really is that important.

Feel free to PM me, I am happy to help you in any way that I can.

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Stressful Times
« Reply #15 on: June 22, 2011, 03:43:14 PM »

No it's o.k honestly, I should have been more forthright in my initial post, it was just months and months of stress and it felt so good writing it that I forgot to mention what I need advice on and it became more of a confessional.

My numbers are now CD4 500/VL 0. They can't switch the particular medication that causes lypo because unfortunately I have hep b too and that one treats both.

My doctors have advised me on nothing in regards to stopping the lypo. Is there something they can do then?

I'm not aware of the difference, I had to Google the spelling so maybe I got lipoatrophy and lipodystrophy mixed up.

I can't come out about my status because I have slept with (protected & safely) mutual friends and I'll be strung up by my balls by the general community. Plus the gay scene is so revolting intolerant.

I work for a very macho, connection based company also and my work life would be ruined.

I don't really want to go on like this and think about killing myself in detail about 4 times a day.



Welcome to the forums pozpete - sorry that you had to find us under these circumstances.  Because I am not on the same type of meds as you and I am not too familiar with the ins and outs of of lipoatrophy or lipodystrophy, I'll leave that for other members who may have more experience and insight to address.

Are there any types of support groups or ASOs (AIDS Service Organizations) where you are?  They can provide a wealth of support and resources.  

Also, if you are experiencing depression and thoughts of harming yourself, it would be a good idea to get some type of therapy to provide additional support as you adjust to living with HIV and other events happening in your life.

Keep sharing, stick around and I'm sure you will get some sound advice from others on here.
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 mecch

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  • red pill? or blue pill?
Re: Stressful Times
« Reply #16 on: June 22, 2011, 03:49:53 PM »
http://www.poz.com/index_focus.shtml   - many lessons/articles

http://www.poz.com/archive/2007_Nov_2126.shtml

http://www.poz.com/articles/fat_facts_2126_13545.shtml

Lipodystrophy
Lipo means fat, and dystrophy means change. This refers to a cluster of symptoms that includes both unusual fat losses and gains and abnormal changes in cholesterol, triglycerides and sugar in the blood.

Lipoatrophy
Atrophy means to shrink or disappear. Lipoatrophy refers to the loss of subcutaneous fat. It is most noticeable in the face, arms, butt and legs.

Lipohypertrophy
Hypertrophy means to grow or accumulate. This condition refers to increases in visceral fat within the abdomen as well as subcutaneous fat between the shoulder blades (“buffalo hump”) and in women’s breasts.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Stressful Times
« Reply #17 on: June 22, 2011, 03:55:32 PM »

1) 

My numbers are now CD4 500/VL 0. They can't switch the particular medication that causes lypo because unfortunately I have hep b too and that one treats both.

My doctors have advised me on nothing in regards to stopping the lypo. Is there something they can do then?
____________

2)
I can't come out about my status because I have slept with (protected & safely) mutual friends and I'll be strung up by my balls by the general community. Plus the gay scene is so revolting intolerant.

I work for a very macho, connection based company also and my work life would be ruined.

I don't really want to go on like this and think about killing myself in detail about 4 times a day.


1)  Be patient for a few days and people with more experience can give you some input on the lipo.

2)  If your friends are your friends, they will support you, not string you up.  Don't confuse casual acquaintances or fuck-buddies or one offs with friends. Please make a list of a few friends you can really really trust.  Or willing to take a risk to trust.  If you don't want to trust your gay friends, what about straight friends who have nothing to do with the "scene".  Do you have any friends in a health profession, for example.

Also, what about a brother or sister, perhaps?

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline pozpete

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Re: Stressful Times
« Reply #18 on: June 22, 2011, 03:56:05 PM »
Oh o.k, I have Lipoatrophy then and I'm not sure they can prevent that.

Offline pozpete

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Re: Stressful Times
« Reply #19 on: June 22, 2011, 04:03:16 PM »
A few friends of mine do know and they're sympathetic.

I'm not confusing anything, I have very close friends that would still tell mutual friends because they're also close them.

Then when those mutual friends are aware, some who hold no loyalty to me whatsoever, they will tell other people and before I know it everyone knows.

I've already had people abusing me, to my face, because they have found out about my status and random people online telling me they'd heard I have HIV.

There's no respite from it.

I can't find a partner because the only people I like are negative and run a mile.

I try to look for others with HIV but the only place I can do that is online and they're all so horrible. They're constantly looking for sex, asking to be fisted, barebacked etc and they are not the kind of people I want to have a relationship with.

Does it always feel so hopeless?

I know if I just had my face taken care of I would feel so much better but because of the state the economy is in, everyone is cutting back on funds and refusing treatment.

I can't afford to get it done privately because all my money from works going on paying the rent/looking after my siblings/food for everyone since my parents died.

Offline mecch

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Re: Stressful Times
« Reply #20 on: June 22, 2011, 04:36:37 PM »
A few friends of mine do know and they're sympathetic.

I'm not confusing anything, I have very close friends that would still tell mutual friends because they're also close them.

Then when those mutual friends are aware, some who hold no loyalty to me whatsoever, they will tell other people and before I know it everyone knows.

I've already had people abusing me, to my face, because they have found out about my status and random people online telling me they'd heard I have HIV.

There's no respite from it.

I can't find a partner because the only people I like are negative and run a mile.

I try to look for others with HIV but the only place I can do that is online and they're all so horrible. They're constantly looking for sex, asking to be fisted, barebacked etc and they are not the kind of people I want to have a relationship with.

Does it always feel so hopeless?

I know if I just had my face taken care of I would feel so much better but because of the state the economy is in, everyone is cutting back on funds and refusing treatment.

I can't afford to get it done privately because all my money from works going on paying the rent/looking after my siblings/food for everyone since my parents died.

You're not thinking clearly.
In fact, you are not secret about your status because as you say above, good friends know, and then it gets around.  Tell the people who are abusing you that you aren't interested in their opinions, if all they have is abuse, avoid them and ignore them.

You have a LONG WAY to go to accepting your own HIV status.  What on earth does it mean for self esteem if you will only consider an HIV- person for a lover?  Consider people for who they are, if you want them to consider you for who you are.

What a horrible thing to say here, online, about "all" HIV people online - though I get what you mean about cruising sites.  But then again, open your mind a bit.  Lots of decent HIV+ guys cruise for sex online and one of them might be open for something more.  You never know.  With your negative attitude, which seems to the the result of depression and gloom, you will not meet someone anywhere.

THis is a lot to take in for us:
"Because all my money from works going on paying the rent/looking after my siblings/food for everyone since my parents died."

You are the provider for how many people? Where is this?  Details, please.  What a load to carry.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Joe K

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Re: Stressful Times
« Reply #21 on: June 22, 2011, 04:57:28 PM »
Does it always feel so hopeless?

No it doesn't, but at times it sure feels like that.  You seem to have a lot of responsibility in your life and maybe you are trying to do too much at one time.  That's why it would be helpful if you had somebody you could talk with, who accepts you for who you are and being poz is not who you are, it is a disease that you have.  You are still adjusting to being poz and it can take a year or more for some folks to accept it and there is nothing wrong with that at all.  What I hope for you, is you can find someone to lean on for a bit, so you can slow down a bit and just take it one day at a time.  Even though you may feel that your life will never get better, that does not make it so.  I urge you to be kind to yourself and that includes your mind, body and spirit.  Do something nice for you, every day, because you matter and there is nothing wrong with you.

I hope you will use these forums to make some new friends, because we do understand what you are going through.  Each of us must find our own path to accepting our infection and we will help you in any way that we can.

Offline pozpete

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Re: Stressful Times
« Reply #22 on: June 22, 2011, 05:21:51 PM »
I didn't mean to be horrible, I was simply saying all the men with HIV I have spoken to online are sordid and I don't want to have a relationship with them. That wasn't me saying "all men with HIV and access to a computor are rancid".

And it's easy for you to say that to only look for positive partners is sad but I can't trust anyone negative enough to tell them outright before sleeping with them.

I have two little brothers.

Thanks for the advice guys, I appreciate it.

Offline LM

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Re: Stressful Times
« Reply #23 on: June 22, 2011, 10:53:35 PM »
pozpete, does the law where you live require you to disclose your status before sexual contact? If not, as long as you use a condom, I think you could wait before disclosing.  At least, in my opinion.

Offline BJS2011

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Re: Stressful Times
« Reply #24 on: June 23, 2011, 06:29:13 AM »
8 months ago I started medication (Truvada, Reyataz & Novir) and it's been a nightmare.

Aged 26, I looked about 20, nobody would believe my real age when I told them. After taking the tablets my face has become disfigured.

I was told by my doctor none of the tablets I was on caused lipodystrophy and I was imagining it. A few months later, I presented them with before and after photos and a document I'd printed off the internet that clearly stated one of the tablets I was taking caused lipodystrophy.

They quickly backtracked and said they would apply for funding for facial fillers. However, after 2 months of chasing it up with my doctors, they finally told me the funding had been denied and had gone in for appeal.

I'm not 'out' with my HIV to people and the look on some of my friends that I haven't seen in awhile faces when they see what I look like now is heartbreaking.

Also, where I'm not 'out', I can't go to my local help centre for people with HIV, so I have no one to talk to and hardly leave the house because of my face.

I don't know what to do.I have been on the same meds for 8 yrs and NO changes to my face or body. These meds DO NOT cause lipo.

Offline BJS2011

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Re: Stressful Times
« Reply #25 on: June 23, 2011, 06:32:55 AM »
I honestly thought I'd find some help on this forum.

I never in a million years thought I'd encounter rude people that think they know more about my life than I do!
I haven't read ONE comment that has been rude to you. I am wondering if maybe what you see in the mirror is all in your head just like the rude comments that don't exist. If you are determined your having wasting then you should save your money and get the cosmetic surgery. Good luck!!

Offline pozpete

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Re: Stressful Times
« Reply #26 on: June 23, 2011, 07:32:12 AM »
I haven't read ONE comment that has been rude to you. I am wondering if maybe what you see in the mirror is all in your head just like the rude comments that don't exist. If you are determined your having wasting then you should save your money and get the cosmetic surgery. Good luck!!

Honestly, I couldn't care any less about your opinion.

Offline David Evans

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Re: Stressful Times
« Reply #27 on: June 23, 2011, 11:47:30 AM »
BJS,

This is the second time this week you've jumped into someone else's thread with a judgmental, offensive and and unhelplful post. We try not be overzealous in how we moderate these forums, but one of the things we don't tolerate is flame bating - where people make inflammatory comments that seem more designed to provoke an angry and defensive response than to add to the conversation in a meaningful way.

Perhaps you aren't aware that your comments have been problematic. Please try to be more conscious for how your remarks can be interpreted. I've got to give you a warning at this point that if this kind of behavior continues we'll have to give you a time out.

David
Moderator

Offline txasnguy

  • Member
  • Posts: 17
  • "never judge a book by its cover"
Re: Stressful Times
« Reply #28 on: June 23, 2011, 01:21:33 PM »
oh wow,  i was on that same combination for just a lil less than that amount of time.  the few good things that me and my doctor have noticed is that my cd 4 counts was gradually improving.  on the last lab results he found out that my kidneys was dropping.  so he thinks that perhaps truvada was one of the factors for it.   now i am on the same regimen except for the truvada which he change with a couple of meds.  the next lab results would determine if it is helping or not.   
 
on the other note:  i think that being human is stressful enough and having to deal with hiv + meds + the side effects + and all the people around us that does not understand what we have to go through + dealing with our daily lives.  Just with those things alone are enough to make one a lil nuts sometimes   but do not give up.  listen to your doctor ,  never miss any meds ,  and asking god for help as well as coming to sites like this even to just unburden yourself .   i think these things can help people like us. 
mr.dj 
 True Love Can Move Mountains

 


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