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Author Topic: Help on mentally preparing myself to start taking meds  (Read 12484 times)

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Offline forrest

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  • Posts: 162
Re: Help on mentally preparing myself to start taking meds
« Reply #50 on: February 27, 2012, 08:33:52 PM »
Well... ahem... Got my labs back today... and they look pretty good.  So, now I am conflicted more on whether or not to start.   :-\  I haven't done much research on the... is it called "Start Study" - do they know when that is supposed to be done?  I see my doc on March 6th, but I know he's going to say start.  Although, folks have posted that there is no research that shows starting when you VL is above 500 is beneficial. I have updated my profile to reflect the latest. 

I know my body is taking a toll to keep those numbers I would assume... and my dad died of metabolic syndrome (high cholesterol, high triglycerides, diabetic, hypertension, etc. etc. etc.)  With all that said, I have always taken MUCH better care of my body.  I have been watching closely what I eat since basically 1994, I don't smoke, I rarely drink, etc. etc. BUT, I do have that in the family and my high chol & TG are hereditary.  With that said, the thought of my heart being inflamed due to the HIV is worrisome and going on meds would be helpful for that. However, I can't get out of my head that there is no proof that going on when above 500 is beneficial - correct?  Also, by not starting meds, it gives me freedom with my job - in that fact that I am not tied to it and should I need to leave, it makes it easier not having the whole med thing on my shoulder (when finding new job and moving). 

Anyway.... while the numbers are good news, I am a bit perplexed. I WAS totally leaning at starting on April 6th, but now that I up in the air.

I am going to post in another forum topic to understand the numbers.  Didn't feel that was appropriate to this thread.

Thanks again!
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 mecch

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Re: Help on mentally preparing myself to start taking meds
« Reply #51 on: February 27, 2012, 08:42:20 PM »
Untreated HIV causes an inflamed heart?

I dont think people start HAART in relation to other health factors and certainly not risks. Do you have any of this now:
(high cholesterol, high triglycerides, diabetic, hypertension, etc. etc. etc.)

If not, why is this in related to starting or not.

Ask you DOCTOR his/her rationale for starting now.  You seem to think you have heard no PROOF of benefit, and so why start?  So ask him that question.

There is no proof of a lot of things because there isn't aways a system and money and time and measurement to get the proof.  Doesn't mean its a bad idea.

I think you are smart, however, to think about job and insurance considerations.   


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

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #52 on: February 27, 2012, 09:03:13 PM »
Thanks Mecch. My doc explained to me that HIV causes inflammation throughout your body.  Thus, would cause inflammation to heart.. and anything else in the body.  I know from day 1, he suggested that I take baby aspirin to help with inflammation. 

I do have high cholesterol (take meds) and also high TG (take a lot of fish oil and also watch fat/carb intake).  Cholesterol is in check due to meds, however, TG vary and sometimes are in check and other times are not.  I do not have diabetes, hypertension, high blood pressure or anything (thankfully). 

I do feel very fatigued and have while I have always complained of fatigue throughout my life, I certainly can tell I am more fatigued over the past year or two. I am pretty sure I was infected in April 2010.  So, I went one year until being confirmed that I was HIV+ and now it's been almost another year since finding out.  Thus, it's been 2 years (almost) now.  I think my doc feels that I would feel better overall (I am very sensitive to changes in my body...always have been) by going on meds - especially with the fatigue. However, he doesn't know that for sure. 

I'm not actually seeing the one that has spent so much time with me on March 6th. I am seeing a fellow instead (I have met him before, I didn't wait to see my reg doc because this one is just to go over labs).  I know that this one I am seeing said that if he were infected, he would go on meds immediately regardless of numbers.  He has recommended me to go on them in the past so would expect him to feel that way when I see him on the 6th as well.
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 leatherman

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Re: Help on mentally preparing myself to start taking meds
« Reply #53 on: February 27, 2012, 09:05:34 PM »
I see my doc on March 6th, but I know he's going to say start.
Quote
2011-MAR-26:  Tested Positive
2011-APR-06:  VL: 48,653 | CD4: 603 | 32.0%
2011-MAY-23:  VL: 64,324 | CD4: 577 | 36.0%
2011-AUG-02:  VL: 18,319 | CD4: 574 | 36.3%
2011-DEC-06:  VL: 10,375 | CD4: 480 | 30.1%
2012-FEB-23:  VL:   9,674 | CD4: 570 | 33.6%
with numbers like that your doctor won't be saying that it's time to start meds. He might, however, suggest that you think about an early start; but you have not reached the recommended guidelines yet for "needing" to start meds.

Also, by not starting meds, it gives me freedom with my job - in that fact that I am not tied to it and should I need to leave, it makes it easier not having the whole med thing on my shoulder (when finding new job and moving). 
most people, these days, after a short period (2ish weeks) of adjusting to their meds (lowering the viral load and getting adjusted to these chemicals) just continue on with their jobs and continue on with their "normal" lives. Unless you need to leave your job to have insurance coverage or something like that, meds shouldn't affect your employment.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #54 on: February 27, 2012, 09:48:27 PM »
Thanks Leatherman!  Yeah, in regards to job... What i meant is, if I were on meds right now, I would certainly be "tied" to my current employment and if something were to happen (leave) I would have to find means in which to pay for meds. But, by not being on meds yet, it takes a certain weight off my shoulder since work is a bit turbulent right now.  That's what I meant.  Yeah, when I start, I planned on starting on Friday night and then going to work on Monday.

I have been looking for info on START and have found it.  There is a site even for it.  Here is a link to the START study FAQ page should anyone be interested in it:  http://www.thestartstudy.org/faqs.html

Right now, I am putting April 6th as my start date on hold.
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 mecch

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Re: Help on mentally preparing myself to start taking meds
« Reply #55 on: February 27, 2012, 10:57:36 PM »
You are repeating the same material. 
You might like to ask that doctor who you think recommends meds right away why, seeing as there is no "proof". 
But you already HEARD the answer and seem to pretend that its good medical insight.
1) Might help your fatigue.
2) There are immediate benefits and maybe long term benefits to not having an actif HIV infection, such as less inflammation.

I get that you want proof that staring early gives an advantage but as said, sorry, there is not proof for you.  There is the medical opinion of your doctor about what might be the advantages to you, personally. 
Take the advice or leave it.   Sounds like there might be very tangible and immediate benefits in your daily life - more engery. 

I got your point about wanting to make sure you could afford the treatment once you start.  That seems to me a tangible reason not to, if you dont want to be tied to a job to get the insurance you need to be on HAART.   Thats for today and tomorrow.  Good reason.   But remember, eventually, you will need the HAART and will have to figure out the way its going to be provided for the long term.  But then, maybe health care will be in a different and better place in the USA.  Hope so.

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

Offline leatherman

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Re: Help on mentally preparing myself to start taking meds
« Reply #56 on: February 27, 2012, 11:35:07 PM »
eventually, you will need the HAART and will have to figure out the way its going to be provided for the long term.  But then, maybe health care will be in a different and better place in the USA.
hmm ;D, interesting reasoning ;) for holding off meds (unless immediately neccesary) right now for those who don't fit the current guidelines yet. Rather than waiting to see what the START study says about starting early (since we know those who start "later" often do well - so says the guy on meds for 20 yrs LOL - so it's not like waiting till later is all "that bad"), but instead waiting until the health care situation settles down to make sure your medication funding is in place.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline forrest

  • Member
  • Posts: 162
Re: Help on mentally preparing myself to start taking meds
« Reply #57 on: February 28, 2012, 10:00:36 PM »
You are repeating the same material.

But you already HEARD the answer and seem to pretend that its good medical insight....


I don't want to get in an argument or offend... not my intention.  However, I do have to say, Mecch, that this didn't settle well with me.  I am SORRY that I am repeating the same material.  If, that is what you think. It certainly is not intentional!  This has been a really shitty ride for the past year and I am trying to come to terms with everything and trying to make (to me) is one of the largest decisions of my life right now.  It took me damn near a year to reach out for help on here and have appreciated the responses.  I was all set on starting on April 6th as a result of this thread and people's responses - however, things have changed with the last test results last week.  I now do not think I will be starting.  Sorry, if that is going in circles with you, but it's going in circles in my own head.  I'm trying to come to terms with a lot of things and this is one of them. I am processing through all of this right in the open where complete strangers can see along with my family and close friend. 

Maybe you did not intend to be what appeared to me - a rather sharp comment at me.  There is no pretending. I am being very real and frank.  I would imagine others have felt (or currently feel) exactly as I am and have these battles inside of them going on. 

This is very real and raw for me.  For some who have replied, you've been on meds for a long time or were forced on them, unfortunately.  I am fortunate (and very thankful) that I have a decision and I'm trying my damnedest to think through this. You are not the same sort of thinker as me - we are all different. Please be respectful to MY processing and I obviously process differently. 

Again, I'm not looking to start a fight or anything - I am NOT a debater! I don't know you, you don't know me.  Maybe I read you wrong. Maybe you are a great guy and didn't intend anything, if so, I apologize for speaking up.  But it bothered me and I needed to.

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 mecch

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  • red pill? or blue pill?
Re: Help on mentally preparing myself to start taking meds
« Reply #58 on: February 29, 2012, 09:59:08 AM »
You are repeating the same material. 
You might like to ask that doctor who you think recommends meds right away why, seeing as there is no "proof". 
But you already HEARD the answer and seem to pretend that its good medical insight.

1) Might help your fatigue.
2) There are immediate benefits and maybe long term benefits to not having an actif HIV infection, such as less inflammation.

I get that you want proof that staring early gives an advantage but as said, sorry, there is not proof for you.  There is the medical opinion of your doctor about what might be the advantages to you, personally. 
Take the advice or leave it.   Sounds like there might be very tangible and immediate benefits in your daily life - more engery. 


Hello, I'm sorry. I did not mean to be sharp.  Also I'm sorry my sentence above isn't very clear! 

I meant to say, I was reading your comments up to your latest labs.

Now you are guessing, anticipating, about what you think a doctor is going to say - start soon. 

So I am suggesting that you ask this doctor what is his rationale for starting soon.

You are right that there isn't necessarily a proved benefit.

But this was so a month ago, a year ago, a few years ago.  The proof won't be easy to come up with.

So if some doctors are recommending early treatment, such as yours, it is a good question to ask them - why?  So if your doctor is recommending that to you, he can give you a rationalization.

His rationale may not even care that you don't have the needed CD4 drop to start. The recommendation to start may be made independent of that.   

My guess is that you aren't emotionally or psychologically ready to start. So this CD4 news can allow you to postpone.

If you aren't ready to start, and your CD4 doesn't say you need to start, then don't start.   

If you want to go with the wisdom of the doctor, who says start, then it means a leap of faith for you. Because yes, there is no "proof of benefit" for the population.

The benefit to you personally might be less fatigue. 

I think maybe you read me wrong.  I was saying, I read your post, and yes, you are going in circles.

But i do understand its a big decision.  Do what you think is best. 

An outside view, mine, is that you might be over-thinking it because that might be the kind of thinker you are.  And in that case, you might realize that sometimes we never get 100% surety about something, in order to make a decision, but we have to decide anyway.

Best to you.



« Last Edit: February 29, 2012, 10:01:59 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline forrest

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  • Posts: 162
Re: Help on mentally preparing myself to start taking meds
« Reply #59 on: February 29, 2012, 09:27:00 PM »
Thanks a lot for your response Mecch. I appreciate you clarifying and letting me know that you didn't mean to be sharp.  I've been told by a bird that you are a good guy on these forums  :) so that helps me to understand where you come from as well  :)  I'm glad I actually spoke up because otherwise, I would have had unwarranted animosity towards you possibly.   :-\  But I am glad that you also replied in the manner in which you did. 

It really has been difficult (probably more than I let on) in coming to terms with all of this.  Then, couple that with also having a really shitty work experience right now along with some other things and it all builds up.  I do a lot of research in just buying a tv, a stereo, a phone, etc.  So, making a decision such as this is way more important than a tv, phone, etc. 

I can't remember if I mentioned this already, but I also have really been struggling with memory over the past year or so.  I mean... really bad.  I can read something and don't remember what I just read.  Or, if someone is talking to me, I don't process.  I am not sure if it's hiv related or not - or it could just be all the things going on in my mind... but that doesn't help in the matter. 

I am very glad for this forum because now I can go into my appointment prepared and I can question him if he feels that I should still go on meds.  Not that I couldn't before... but help from you and others on here remind me of that.  Like you said, if he recommends it, I want to know his entire rational for his recommendation - not just a simple answer.  He needs to explain it so I can understand it and I am sure that I will come back here and post what he says.  He may (just as Leatherman said) just say that no, not time to start. Let's monitor.  Who knows - I won't until I actually see him. 

Thanks for your patience!
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 buginme2

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Re: Help on mentally preparing myself to start taking meds
« Reply #60 on: February 29, 2012, 11:40:22 PM »
Did the memory issues begin post HIV infection?  If so, mention it to your DR.  HIV can have an effect on memory.  The virus can (and does) cross the blood brain barrier.  Medication can offer some help with this (some medication crosses over the blood brain barrier more than others so its important to mention this to your doctor). 

At least this is all theorized. 

Also, you may be freaked out about starting meds now.  Im sure we could go back and forth for days about this but once you start meds (especially if you need to because of illness ) youll get used to it very quickly.
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline mecch

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Re: Help on mentally preparing myself to start taking meds
« Reply #61 on: March 01, 2012, 06:02:25 AM »

It really has been difficult (probably more than I let on) in coming to terms with all of this.  Then, couple that with also having a really shitty work experience right now along with some other things and it all builds up.  I do a lot of research in just buying a tv, a stereo, a phone, etc.  So, making a decision such as this is way more important than a tv, phone, etc. 


I read the title of your post "Help on mentally preparing myself to start taking meds" so it is for this reason I tried to look at what you are presenting and think about the "mental" side of things.

Nobody here is a doctor and I don't know if anyone in this forum is a psychologist or shrink, so its layman advice here, right?

I thought about his rather sloppy analogy, the point of which helped me mentally a few times in life.

Shopping, salesmanship,and buying.  And selecting services..

I hear what you are saying about doing extravagant research before buying a product that is important to you.  My brother is that type.  Let's say its a TV.  Well you can do the consumer research and get the general feeling of things, so you don't get ripped off, and end up buying something that pleases you.  Or you can really get lost in the research, things you can't really understand, cause you aren't a TV technician or media engineer. 

Or maybe there are too many models, and the one you decide on, you can't find in the store, or in your country, etc. etc. How may times has this happened to me! ANd you learn, there is a limit about this research, a little bit is good, too much may turn out to be wasted time, counterproductive.   

But you can do a reasonable survey in advance and if you are lucky, you might actually get a good salesman. Then you know a few things he the salesman knows a lot.

There used to be TV salespeople, that was their job and they did it for years.  I head an interview with a french one interviewed on the radio the other day.  A good TV salesperson is going to sell you the model that best fits your needs.  Ok, thats ideal, (if he's not a shark or untrustworthy salesperson.)  The salesperson does KNOW things you can't really. MIght even have wisdom and experience in serving just about your own needs, cause he has been doing it so long.  Might understand your needs better than you. (You are convinced you need this or that technology, and he knows its useless, or won't fit your imagined needs.)

This is professional expertise.

There are a lot of places in life where we rely on other's professional expertise.  We try to find the person who we trust, we trust them to look out for our interests, our goal, and we trust they have an expertise that we can never have.  Because we have our lives, our jobs, our families the things that we know really well. 

So we do that for services. Car mechanic.  The dry cleaner.  A cop.  A teacher.  A massage therapist.

Now when it comes to learning to live and deal with being HIV+, people decide to learn different amounts about HIV, about the medicine, etc etc.

Back in the 80s and 90s (when I was HIV- by the way, and a young man) some of my HIV+ friends because EXTREMELY knowledgeable about whatever could be known about HIV.  Part of the reason was there weren't so many expert doctors around, and there wasn't so much medical knowledge, and it was a fatal illness and the medicine was crap and yet one thought there could be medicine, and well, many other reasons as well.

Nowadays, you can decide exactly how much you want to learn about HIV but unless you are a doctor or scientist, or, unless you have an awful lot of spare time, you can't know all that much.  Because the knowledge in the field is VAST. You can't know everything.  So, the decision to start HAART, when and which one, is done in a much broader field of possible knowledge.  Yes, not at all like buying a TV. 

My personal view is that its my doctor's job to be up to speed about the latest treatment thinking, drugs, etc.  My doctor's job is to filter ALL the science to date, and all his personal experience of a practice of many many years, and many many HIV patients, through his expertise, and use it to do right by me.  I don't have to learn about "possible side effects" I don't have to learn about "what does science say the future might hold..." I don't have to learn about resistances and this or that or the other.  That works for me, personally. I'd rather be doing something else.

I personally find this mostly a relief. Shifting some power and responsibilities to medical science - through my doctor - doesn't mean I don't "control" living with HIV.  It does mean I don't have to know all the ways and whens and whys.  Its not my field - medicine.  Its my doctor's.

(I was fully convinced I was facing a shitty future when my natural genetics couldn't fight HIV in the least.  But my doc said, oh, no, the thing I told you the first day I met you still stands:  you will have a long life.  And now you need to accept that the HAART WILL work, even for you, yes!  And he was right.)


« Last Edit: March 01, 2012, 06:11:35 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Help on mentally preparing myself to start taking meds
« Reply #62 on: March 06, 2012, 11:50:08 AM »
Hey Forrest, I've been meaning to come back here with an update after my Feb 21st appointment - but I procrastinate. A lot. (sorry)

As I mentioned before, I opted to see one of the doctors I know to be more sympathetic  to my situation than others. I was right and we had a very good discussion.

We talked about how I understand her hands are tied when my CD4s are over 500. She was very interested and allowed me to vent my frustration concerning this - she didn't become defensive (like some doctors I've spoken about this with), but she was happy to know I understood this side of things, despite my frustration.

I told her about the difficult time I had with recurring, persistent norovirus and high fevers in December and early January, and how I'm often tired and also how my skin isn't as healthy as it should be and how my joints are causing me pain again, after a few years reprieve.

We talked about how the length of time one has an untreated hiv infection can impact on health as one ages. She agrees with me that ideally, there should be a proviso in the current guidelines for people with untreated hiv for more than ten years or so, regardless of numbers.

My numbers from my last set of labs in July 2011 were VL 41,000; CD4 471, 24%. She didn't like the percentage too much and neither did I. However, as my last labs are seven months old, we came to a compromise.

I had labs drawn after our meeting. I will have labs drawn again in mid-May, but won't see a doctor on this visit. Instead, I will go back two weeks later when we will have two recent results in front of us and we can go from there. I will request to see her again and she's agreed - if both of my CD4 results are under 500, she will write me a script, most likely for Norvir-boosted Reyataz, plus Truvada.

At last! Well, I hope "at last". It will depend, as usual, on my CD4s. I'm hoping this will go in my favour, but knowing my obstinate body, well, I'm not going to get my hopes up too much. We'll see and I'll keep you all posted. Maybe in early June I'll be posting a thread on how my first few days on meds went.
Condoms are a girl's best friend

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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 leatherman

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Re: Help on mentally preparing myself to start taking meds
« Reply #63 on: March 06, 2012, 09:52:16 PM »
most likely for Norvir-boosted Reyataz, plus Truvada.
yummy! My favorite regimen during 20 yrs. ;D

Good luck! Should I wish that you do have a couple <500 cd4 tests?? It just seems strange and wrong to wish that when I just wish I could get >325. LOL Usually we're hoping people get more not less cd4s but in your case....  ;) Make sure to have the labs in the morning, after exercising and without a good night's sleep - maybe get good and drunk the night before too LOL ;) That ought to help knock you down to the low side of the daily +/-100 change that's possible.

I also think you and the doctor have a valid thought about someone that goes 10 yrs without treatment but >500; especially when they've had any issues (like illnesses, tiredness, skin problems, etc)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #64 on: March 06, 2012, 11:22:38 PM »
It's been a loooong day... :(  but wanted to post.

@Mecch - I just realized that I never said thank you. I'm sorry.  I really did appreciate your well thought out reply. I like analogies actually! I find them very helpful.  I really do appreciate your replies!

@buginme2 - I've struggled with learning all my life.  That (come to find out many years later) is due to ADD (non hyperactive).  However, I have complained of memory issues quite  a bit over the past 2 years actually.  Enough so, that I went in to a clinical psychologist and had 5 hours worth of testing done.  Again, says due to ADD.  However, I really have been struggling with comprehending, remembering, recalling, etc. more so over the past two years I would say.  I believe I was infected in April 2010 and now it's almost 2 years later. I did mention this to the doc today (wasn't the normal one I see) and he said there is a study going on right now with hiv related memory issues. He said that he would send me info on it and then see if I qualify. I said I would very much be interested in that.  I don't know any thing more about it at this time. I don't know anything about the study or anything, so I will share once I know more.

@Ann - thanks a lot for the reply!!! I've honestly been wondering.  I then thought... aw geez.. was I not supposed to PM a moderator... then I thought, well, she probably gets a lot and just can't keep up with PM's as she replies to so many different threads, moving them around, etc. etc.  SO, I understand.  I find it tough to keep up with my own threads that I post on. 

So, no meds yet... :(  THAT is one thing that I would find frustrating about a national health care system.... BUT, not having to pay for it balances things out too... so just a difficult situation.  At least YOU are mentally prepared to start!

I'm glad that you got a doc that you could speak freely and open with.  I feel like the one that I personally saw today doesn't listen to me.  He's young and I just don't feel the vibe or the interest like the director does when he sees me.  It irritates me when a doc doesn't listen.  That's part of their job!!!

When you talked with yours about the length of time it's been and what that could be doing to your body... did she elaborate? 

I only ask... I was going to post this separately... but the doc I saw today STILL feels that I should start meds.  I even brought you up  ;) in my visit today... I said, well Ann, the moderator on Aidsmeds... she's had numbers similar to mine... even higher VL... and yet she hasn't started meds... she's been a slow progressor for like 10-12 years...

So, just wondering how your doc handled the inflammation issue.  Mine has said that hiv inflames everything. All organs are inflamed... and that takes a toll on your body.  It's the number one reason whey he feels that I should start.   I am glad that you can see the same doc again in the future. I am really difficult on docs... meaning, I expect a lot out of them and it's important for me to have a good open relationship with them and for them to listen to me. 

Thanks for the update though!!!!  :D

@ALL - well, I went to the doc today... he still feels that I should start meds.  Even though my VL is 9,674, CD4 is 570 and percent is 33.6%.  I actually had this thread pulled up on my iPhone and had it on Mecch's comments... ;)  (see Mecch... I really do appreciate). I asked the doc, "Can you please rationalize for me why you feel I should still start meds even though my numbers are good." 

I typed it out (I take my laptop with me to appointments as I have all my blood results over many years in a spreadsheet along with other things - I know... very anal   :o

He said per the latest guidelines (Oct 2011 is what he stated), when the VL is above 500, he said 55% of doctors will say to wait and 45% will say start.  He falls in the category of the 45% and should start.  He said mostly due to inflammation going on in the body - that means, heart, liver, everything... it takes a toll on the body he said - thus, the fatigue because your body is constantly fighting the virus and he said it produces billions of virus per day... and likewise, my body is fighting off billions of virus per day...

He also said as we age, our CD4% also decreases yearly and the older you get, the harder it is to regain those (meaning, taking longer... and I have seen this with different posts on here... how long it's taken to get back up above even like.. 200). 

He said my numbers are good... he could see my CD4 getting to like 800-1000 starting now he said.  But really, that was his reasoning.

I asked about why my VL keeps on going down... over the past year, it has consistently gone down - even into a new log per my last test results. While at the same time, my CD4 remains pretty much the same.  My overall percent has gone down 3 percent.  He said he can't explain but looked at the supplements I am taking and said the he is a believer in supplements and that they could very well be helping.  I also watch carefully what I eat... but one thing that I know I need to be doing... and am not... is exercising. I do not exercise at all.

He did say that I can wait.  He was expecting me to get a script though for Complera today.  The whole staff was - I guess they have a staff meeting every morning and discuss the patients that will be coming in that day.  Thus, they all thought for some reason that I would be starting meds today.  But, at this time, I am going to wait. I am going back in in 3 months again and will see what those results say.  That's the game plan.  I don't think I am stupid for waiting, right? 

Thanks again to 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 emeraldize

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Re: Help on mentally preparing myself to start taking meds
« Reply #65 on: March 07, 2012, 08:15:05 AM »
Hey Forrest,

I just read your response to Bug re: your ADD. I just finished a post to a young woman here who also has ADD.

Go forth and try to see if you're near enough (unless run online) and eligible for an HIV study regarding memory. But, here's what I think--ADD is what's worth addressing for you. You'll sort out with your doc when you're going to start meds, but ADD has been with you all your life. And, it's a headbanger, for sure.

If you've not read one of the books by Dr. Hallowell, I recommend taking a look. In my opinion and experience, HIV is an extraordinary layer of stress for a person with ADD. And, when you're grappling with stress and the added chemical burden to the body, are problems with memory or comprehension a surprise? Nope.

Meditation and exercise (if you're not already doing this) might prove helpful for you. Learning about ADD and coping techniques is worthwhile. If you can find a professional with some ADD expertise and/or a support group, you might pick up some insight and techniques to focus your mind in ways you've not yet experienced.

Em

Offline TexasPOZ

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Re: Help on mentally preparing myself to start taking meds
« Reply #66 on: March 12, 2012, 02:10:56 AM »
I went through a similar experience myself. What helped me was finding a doctor who paid attention to me, spent time with me, and gave me the literature on the drugs she was recommending and allowed me to make a choice between 3 different options. Just the fact that she cared was very helpful. The second thing that helped me was joining and HIV+ support group and talking about my feelings in group and privately with the people that I met there. The third thing that helped me was reading sites like POZ and The Body.com and getting as much information as I could. Knowledge is empowerment, and the three things I mentioned made me feel empowered. In fact, I learned to be my own advocate in all things health related. Starting meds is a serious decision, not to be taken lightly, because we know once we start, we cannot stop since adherence is so important. Best of luck to you.

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #67 on: March 13, 2012, 10:06:37 PM »
In my opinion and experience, HIV is an extraordinary layer of stress for a person with ADD.

Hey Em - I just can't get this statement out of my head.  I am actually starting counseling and the counselor has a lot of experience both professionally and personally with ADD.  I will probably comment to him this statement.  Come to think of it... my doc never sent me info on this study... hmmmm... but I digress...

So many things to grapple with right now... coming to terms with HIV, dealing with all the things that are related to HIV (loneliness, loss of self esteem, shame, anger, sadness, not having kids, ends to certain dreams, determining meds, when to start meds, etc.) and then also dealing with other "life events" - can be very overwhelming... yet alone to also add onto it the memory issue but I suspect it's related to all the other stuff going on as well... do you have personal experience with ADD?  I'm not a reader... I have bought many books through the years.. and not one of them read from start to finish - they just don't hold my attention... and then I don't remember anything from reading them... so why bother.  It's frustrating.

You're right TexasPoz... it does help to have a doc that listens to you.  The doc I mention above in forgetting to send me the info is not my regular doc.  My regular one is awesome and has spent a lot of time with me talking through the whole med decision and lots of other questions I've had.  Thanks for your comments!
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 emeraldize

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Re: Help on mentally preparing myself to start taking meds
« Reply #68 on: March 13, 2012, 10:12:03 PM »
Hey Forrest,
I see you're online. I'll PM ya in a moment.
Em

Offline Buckeyerob75

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Re: Help on mentally preparing myself to start taking meds
« Reply #69 on: March 14, 2012, 10:34:03 AM »
Hey Forrest! I'm new here and have been pondering the meds issue for the last couple weeks myself.

Your posting and the responses have been very helpful and even made me realize that MY OWN concerns were made clear.
By considering/taking meds it makes me:
1. Face facts and admit I have HIV
2. Face the fear of the potential side effects
3. Deal with the possible financial impact
4. Be concerned that I'll be responsible enough to adhere to a regimen *ugh* lol

In my mind it also means I should be more responsible with my diet, exercise, reduce alcohol intake, etc which I already do pretty good with. I'm seeing when I look for excuses I find them. lol The more I read on the forums the more I think starting meds sooner than later will be right for me. Your post was part of that decision- see how you've already helped someone else?  :)
6/2011- Tested Negative
1/2012- Tested Positive- CD4 180/VL 105,000
4/2012- CD4- 129/VL 29,000
4/2102- Started Atripla
11/2012- CD4- 157/VL 40

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #70 on: March 15, 2012, 09:31:58 PM »
Your post was part of that decision- see how you've already helped someone else?  :)

 :)  That's cool Buckeyerob!  Thank you!  I am sure I am not alone, but I find it hard right now because it seems like all I do is take, take, take from the very limited support network that I have.  It's tough coming to terms with it all and all that it is involved with a diagnosis.  I don't feel that I add any joy to family or friends in my current state so it's nice to see that even while at the lowest part of my life, I can still make a difference or that this has helped someone.  That's cool and thanks for sharing!  I appreciate that.  :)

I agree with your four points - that is how I would say that I am feeling right now as well, other than your last one. I don't worry about being responsible enough myself... but it's good that you can see that in yourself... but at least your aren't blind to the fact.. it is your life you're talking about so hats off to you for acknowledging.  I still haven't made a decision myself. I go back and forth.  I am fortunate to not have to start meds... but then again, I don't want to lose what I have.  I have some other things going on right now and if it weren't for that, I may be starting meds while numbers are still good. Currently, I am leaning starting earlier than later.  I am going to wait 3 more months and see what the tests say then.  I really fight a lot of fatigue though and that would be a huge reason for starting (as well as the inflammation).  We'll see though.

Thanks again for your post - really appreciate that!
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 forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #71 on: March 30, 2012, 09:00:39 PM »
Mecch  :)

I understand there is a large variety of different kinds of CD4.  When HIV results in a CD4 wipe out, and the HAART is begun, immunity is rebuilt but there were SOME varieties of CD4 that were wiped out, and can never be rebuilt.  One HIV+ person's 750CD4 may contain a large variety of cells. Another person's CD4 of 750 can be a small variety of cells.  Its the same total number of cells, but not the same variety of cells.  Maybe this means something.

Your comment in this other thread really was informative and wanted to include it in this one b/c it is helpful (I think). I did not know this. This certainly makes me think that maybe I SHOULD start sooner than later - why take the chance?  Do you remember where you learned about this?  Is there a site that talks in more detail about it? 

Thanks!
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 mecch

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Re: Help on mentally preparing myself to start taking meds
« Reply #72 on: March 31, 2012, 05:00:07 AM »
Good question but I regret I don't remember where I read that.  Maybe someone who reads a lot of the science can pipe in.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Hellraiser

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Re: Help on mentally preparing myself to start taking meds
« Reply #73 on: March 31, 2012, 09:40:21 AM »
Good question but I regret I don't remember where I read that.  Maybe someone who reads a lot of the science can pipe in.

I've heard it before too.  If my coloring box of CD4s follows that rule I probably only have like magenta now.  Magenta CD4 cells for everyone! :)

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #74 on: April 04, 2012, 09:55:10 PM »
I think I found something that supports what you are talking about Mecch & Hellraiser.  Was it something like this? 

"There are millions of different families of CD4 cells. Each family is designed to fight a specific type of germ. When HIV reduces the number of CD4 cells, some of these families can be wiped out. You can lose the ability to fight off the particular germs those families were designed for."

I found that on thebody.com  (http://www.thebody.com/content/art6110.html)

I may have read that before and it just went over my head  :( 

THAT comment though... sure has stuck in my head... and that one idea or comment has me thinking more and more of starting versus waiting.  I've even been taking the meds I typically take at bedtime at dinner time to get used to it.

Interesting though about the different families of CD4.  Maybe that is why 50% of doctors support starting even above 500? Dunno.  Just thinking/typing outloud.  Too bad the START study isn't further along. 

Anyway, wanted to post that and see if that is what you were thinking of.  Thanks guys!
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 forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #75 on: May 17, 2012, 11:06:28 PM »
I got my latest labs back... I still appear to be doing okay unmedicated.  What do you guys think? 

It's still interesting that my viral load continues to go down.  And, I'm in a new log now.  My CD4 remains consistent, but my CD4% appears borderline?

On the labs, it says my CD8 is high? And my CD8% is high - I've noticed those pretty much continually increase. Not sure what that means. I have never understood CD8. Anyone want to really dumb it up for me and put it in a very simplistic way? I've read websites.. just doesn't seem to click. I can really struggle with processing things I read  :( 

I'm feeling ready now to start meds.  I really do fear what it's doing to my body as it fights 24/7 and just the constant fatigue.  Logistically, I am torn due to wanting to move to a different state, which also means new job - new insurance... etc. etc. etc. If it weren't for that, I think I am ready.  It's weird how time has helped me to accept or be more ready to take. 

Thanks 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 newt

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Re: Help on mentally preparing myself to start taking meds
« Reply #76 on: May 18, 2012, 01:29:22 PM »
There's nothing really too wrong with your CD4 count or % and your viral load is medium-low.

So is there a rush to start? No

Do you have reasons to/want to? Your answer is.....

- matt
"The object is to be a well patient, not a good patient"

Offline eric48

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Re: Help on mentally preparing myself to start taking meds
« Reply #77 on: May 18, 2012, 06:08:51 PM »
When I was confronted with the choice, I had somewhat similar numbers (although not as 'good' as yours) where there was no rush /reason to start.

Discusion with doc went like this:
- Any reason to start ?
- Doc: no obvious one, although your age should be considered
- Any reason not to start ?
- Doc : none

End of discussion, started 2 weeks later.

The more I read (learn ?) about it, the more I think the bug is a nasty fellow.

Hope this helps

Eric

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #78 on: June 01, 2012, 10:51:12 PM »
Thanks guys! Sorry for the delay.

Newt - the answer is yes  :)

I saw my ID doc this week.  He spent yet another 1hr 20min with me.  I am so fortunate to have a doc that cares!! It's probably partially due to that fact I am in a smaller town as well. I dunno.

He said that he doesn't mind spending time with me.  He said I ask good questions and knows that I am a bright guy.  Said that I analyze a bit too much, but he accepts that.  On that note, I wish it were as easy for me as you Eric, but it's not :(  I don't try to be difficult, it's just how I am wired. I drive myself nuts at times. However, my analytical skills have also done well for me in life so it's a double edged sword. Anyhoo. He said that he realizes that I need to get this settled in my head and that he can tell me that he feels i should be on them, but he said I have to be ready and he's gonna do what he needs to do to help me get to that point.

Isn't that an awesome doc?

He explained the whole CD4 "family" thing to me. He put it into terms that made sense to me. I told him that I would relay what he told me  :)

He likened it to a bag of M&M's. In a bag of M&M's there are what... about 7 colors?  If you just sit there blindly and eat the M&M's, the amount of the colors will vary.  When you get near the end of the bag, most likely, you are only left with a couple colors.  The rest are gone.

When you go on meds, it's like the M&M fairy replenishes your bag of M&M's... but it can only replenish your M&M's with the colors that are there - can't bring back any of the colors that are gone.  So, if you are left with Blue and Red, that's all you're gonna have when the bag gets full again. The greens, browns, blacks, yellow - gone forever.

He went into a bit more detail on Naive, Directed, and Memory CD4's - but I won't go there. I just wanted to share that analogy he gave me as it works for me.  :)

I have been soooooo stinking fatigued lately. I have always had fatigue in my life, but lately it's been really bad. Since I've had HIV it's been bad, but lately - really bad.  He suggested I see a sleep doc again (I've seen in the past and have had 4 sleep studies, but never really worked with a sleep doc closely).  Fortunately, his wife is a well known one in town, which is cool.

For the fatigue alone, I am thinking about going on meds and due to the M&M's I am.  ;)  The fatigue affects how I process things when people talk to me, when I read, etc. - and that has been really bad too. I can't remember crap.

If I DO get a new job and move to another state (which I want to do), I just make sure that I pay for Cobra for that slight gap. He also said that he will help me with making sure I don't have a gap in meds too.  He said the clinic has funds and supplies for emergencies and certain situations.

Anyway - am I making sense? I feel like I am making progress to coming to terms with taking them.  I'm fortunate to be so lucky as to have time to process - I don't take that for granted. 

Anyway, always thankful for replies  :D

Peace.
« Last Edit: June 02, 2012, 05:02:38 PM by forrest »
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 forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #79 on: June 01, 2012, 10:52:14 PM »
OMG... that was a long post   :-[ ???

Looks so long once it's posted... sigh.  My fingers just got a blazin'  :-\
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 forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #80 on: June 01, 2012, 10:55:03 PM »
Oh - and Ann - did you have new labs done?  How did they go?  :)

... I will have labs drawn again in mid-May, but won't see a doctor on this visit. Instead, I will go back two weeks later when we will have two recent results in front of us and we can go from there.

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 forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #81 on: July 05, 2012, 10:38:41 PM »
Hey guys

Please be gentle with me... I am still struggling with this... I go back and forth, back and forth... My counselor wanted me to list out negatives and positives of going on meds to try and figure out what I am struggling with this.  I was hoping that others may be able to provide help in regards to positives and negatives - please be honest... :) 

Right now, I am thinking that I will see what my labs are in August (3 month mark from my last) and then make a decision.  I am currently postponing moving... some things have changed... so may be here for one more year.... thus, that is pretty much not a factor any longer. 

I appreciate your genuineness and patience.  Thank you.
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 Hellraiser

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Re: Help on mentally preparing myself to start taking meds
« Reply #82 on: July 05, 2012, 10:55:19 PM »
Hey guys

Please be gentle with me... I am still struggling with this... I go back and forth, back and forth... My counselor wanted me to list out negatives and positives of going on meds to try and figure out what I am struggling with this.  I was hoping that others may be able to provide help in regards to positives and negatives - please be honest... :) 

Right now, I am thinking that I will see what my labs are in August (3 month mark from my last) and then make a decision.  I am currently postponing moving... some things have changed... so may be here for one more year.... thus, that is pretty much not a factor any longer. 

I appreciate your genuineness and patience.  Thank you.


Pros:
1) You will actively be fighting the virus instead of letting it run amok in your system.
2) You will not feel as if you are helpless against HIV ravaging your body
3) You will feel better/have more energy
4) You will no longer be heading toward a lower CD4 Nadir which means your CD4 will remain higher in the long run
5) With an undetectable viral load you will be less likely to transmit the virus to someone else

Cons:
1) You will have to take a pill for the foreseeable future
2) You will have to maintain health insurance to be able to afford your medicine
3) You will potentially be contributing to organ toxicity with unknown side effects in the extreme long run

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #83 on: July 07, 2012, 08:02:58 PM »
Thanks Hellraiser! I appreciate you taking the time out to give me a reply.  I think others have given up on me  :(  Or maybe people don't really care.  I dunno.  Anyway, I appreciate it - it's helpful to see it this way, which is why I think my counselor wanted it done as positive and negative. 
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 AgilityAddict

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Re: Help on mentally preparing myself to start taking meds
« Reply #84 on: July 08, 2012, 01:22:44 PM »
Hello Forrest!
Wow, I have read through all the posts since the initial one - no wonder you are fatigued young man!

I am going to give you a different, but hopefully fresh perspective, and hot off the press from very current and real experience. I'm going through it as we speak.

First a little about myself: like Ann, I am a long term slow progressor, so my counts are still ok. CD 4 in Dec 11 was 560 and VL 14000. Now in May 2012, my CD4 count was 483 and VL 16000, so essentially all still ok, especially considering it's been 17 years! (I serocoverted in 1995)

I lived  just across the water from the island Ann describes for many years, I'm sorry I didn't get to know her then, she sounds like a wise and strong woman!

Starting treatment was a big decision for me, and I could relate to all your concerns in your early posts. Yes, many people take pills for various reasons and illnesses life long so it might seem to others not to be a big deal. But there is a difference here, it's an important difference, and please take this seriously. You must be ready because once you start, you MUST do it 100 % and give it your full commitment. Please don't listen to comments such as Eric48 who suggests its ok to miss one occasionally. It's not ok, and all the recent scientific evidence backs this up. Taking it everyday at the same time makes all the difference in keeping healthy long term. As with anything in life: always load the odds in your favour. It is a privilege to have a treatment that works available; this has not always been the case, so take it seriously.

PREPARE yourself well from a practical point of view to achieve the above, for example:
1) get a watch with a few alarms, so you get a warning just before you are due to take it. This has really helped.
2) decide on a time of day to take it that works best for you and fits with potential side effects: e.g. I take Atripla at night and therefore sleep through mostnofnthe side effects.
3) get a weekly dosset box with the pills clearly placed in marked daily compartments. When one is anxious or busy it is VERY easy to forget within in a few minutes whether you "automatically" took your tablet or not. This will be crucial for you as you are already anxious and battle with your memory. (anxiety causes and contributes hugely to memory problems) It is then very easy to physically see you have taken it. Without this system, especially in the earlier days, it is easy to make an oversight, and the implications are serious.
4) choose a "captain for your ship". I agree with some earlier posts: you can't known everything about HIV and treatment, it is too vast and too specialised. It sounds as if you have a good rapport with your specialist. It's fine tonhaventhe counsellor for support but the HIV specialist should be the captain of your ship when it comes to medication, not the councillor. The councillor can then help manage your stress etc.

BUT I have to share a very important thing. Anxiety is crippling,maand the longer you let this anxiety go on for, the more confused and unwell you will feel. People underestimate on how many levels anxiety can affect one.
FROM my own and very real and current experience, prepare yourself, and then bite the bullet and do it: start. YOUR ANXIETY will come down a whole lot of notches when you get underway! It's hard but you have to be tough now and those around you will support you.

If you can't do it right now, kick the whole idea into touch and don't revisit it for another 12 months if your counts stay ok. Either way, you must decide because you are going to make yourself very I'll otherwise! It felt like it was a huge responsibility for me, making the decision really hard, as I have dependant relatives to look after and a stressful, full time job. I didn't want to muck it up for any of those reasons!

If I made a judgement error in any way, it was possibly that I did not take a good two weeks off work to negotiate the new treatment. I have experienced pretty bad side effects but I've been a bit unlucky with that, and many don't get them. But if you do, you have that cushion and a bit of grace to put your feet up when not feeling 100% and with a bit of patience and medical support, one copes and gets over side effects!

The very best of luck and positive thoughts to you. I am also new to the forum and find it very helpful! Hang in there!

Offline AgilityAddict

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Re: Help on mentally preparing myself to start taking meds
« Reply #85 on: July 08, 2012, 01:32:07 PM »
Apologies for the spelling and typing errors in my above post!
Also, just for clarity, I started Atripla two weeks ago. I have never before been on treatment.

Offline emeraldize

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Re: Help on mentally preparing myself to start taking meds
« Reply #86 on: July 08, 2012, 04:27:49 PM »
You must be ready because once you start, you MUST do it 100 % and give it your full commitment. Please don't listen to comments such as Eric48 who suggests its ok to miss one occasionally. It's not ok, and all the recent scientific evidence backs this up. Taking it everyday at the same time makes all the difference in keeping healthy long term. As with anything in life: always load the odds in your favour. It is a privilege to have a treatment that works available; this has not always been the case, so take it seriously.

Hi Agility Addict,

Welcome to the forums.

All due respect, but having just started your regimen, as you were blessed as a LTNP since 1995, I don't think it's wise for you to advise Forrest to not take Eric48's comments into consideration. Further, you are quoting the optimal setting vs. what happens in real life.

After your first two years of meds, tell us you've had a perfect run, taken it with the precision of space shuttle launch team---- and I'll guess you're a hermit with little else to do. It rarely goes this way for most people that they never, ever miss.

I've seen you advising Johnnyl similarly as if you've been dosing for some extended period of time, you haven't. In fact, you stated you thought he was doing well when he's just recently had his first dose and I inquired how he was doing and you post right after me as if he's recently replied---he hasn't!

So, I'll serve your advice back to you -- you take your dosing seriously and leave the advising to those who've got some experience. (I don't count myself among them at a mere 1-3/4 years in on meds following a seven-year run of no meds required.) You're a self-reported old-timer in the viral world, but in the regimen world, you're a newbie.

Em
« Last Edit: July 08, 2012, 04:31:29 PM by emeraldize »

Offline jkinatl2

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Re: Help on mentally preparing myself to start taking meds
« Reply #87 on: July 08, 2012, 05:23:29 PM »
Hi Agility Addict,

Welcome to the forums.

All due respect, but having just started your regimen, as you were blessed as a LTNP since 1995, I don't think it's wise for you to advise Forrest to not take Eric48's comments into consideration. Further, you are quoting the optimal setting vs. what happens in real life.

After your first two years of meds, tell us you've had a perfect run, taken it with the precision of space shuttle launch team---- and I'll guess you're a hermit with little else to do. It rarely goes this way for most people that they never, ever miss.

I've seen you advising Johnnyl similarly as if you've been dosing for some extended period of time, you haven't. In fact, you stated you thought he was doing well when he's just recently had his first dose and I inquired how he was doing and you post right after me as if he's recently replied---he hasn't!

So, I'll serve your advice back to you -- you take your dosing seriously and leave the advising to those who've got some experience. (I don't count myself among them at a mere 1-3/4 years in on meds following a seven-year run of no meds required.) You're a self-reported old-timer in the viral world, but in the regimen world, you're a newbie.

Em


This. Seriously, this.

I've given myself a lot of leeway and a lot of slack. If I miss a dose or so a week, I don't sweat it. I just mentally smack myself and try to be more vigilant.

Been on and of meds of all sorts for HIV since 1994. I'm running about 80 - 90 percent adherence nowadays. Undetectable viral load for almost a year now, and little if any resistance to anything.

I am on twice daily dosing of Prezista, Isentress, Norvir and Truvada (Truvada is only once a day.) Sure, life and it's assortment of emergencies ad drama gets in the way on occasion, but I've been pretty stable insofar as remembering to bring and take my meds.

It's absolutely necessary to cut yourself some slack as regards medication. I know this might run contrary to what some medical specialists shriek, but setting yourself up for an all-or-nothing scenario historically tends to end up with, well, nothing.

We are human beings, trying to be as good to ourselves and the world around us as we can. Sometimes we will miss a dose, or sleep through a dose, or put it in our pocket and get distracted. The trick is to make those moments the exception rather than the rule.

I've gotten fairly good at that, if I might day so myself. My long term friends on this forum can attest to the (largely self-imposed) difficulties I have had in that regard along the way, and the consequences thereof. It's a journey, this virus. This life.

"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 Hellraiser

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Re: Help on mentally preparing myself to start taking meds
« Reply #88 on: July 08, 2012, 05:34:07 PM »
I missed one dose weekly for 8 months or so and I remained undetectable.  I've also recently missed 4 days in a row and the doctor seems to think no harm done.  So while this may not be optimal it's not an end of the world situation to miss a pill here and there.

Offline AgilityAddict

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Re: Help on mentally preparing myself to start taking meds
« Reply #89 on: July 08, 2012, 06:09:35 PM »
Fair enough, as Em said you guys have the experience. Can only comment on the specialist advice and also from a number of friends taking it for years who have developed resistance on some regimes where they became more complacent. There is also more scientific evidence around to show that this is an important issue. Off course being human means we will all make mistakes and inevitably miss pills. Still think its worth loading the odds in one's favour, but I'll be first to put my hand up when I mess up! However, how you take it is up to every individual. This is just my humble opinion, please ignore it if it offends anyone!

Offline forrest

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Re: Help on mentally preparing myself to start taking meds
« Reply #90 on: July 08, 2012, 06:19:37 PM »
Welcome AgilityAddict! Thanks for your reply.

I definitely appreciate the thoughts and communication from everyone.  However, I was wondering if I could reel it back in back to what I had last posted about - positives and negatives.  (or Pro's and Con's).  Leatherman sent me a PM and he said that folks at his ASO actually have a class (my local doesn't) that lists not only the pro's and con's of taking meds... but also the pro's and con's of not taking them.  But just really looking for the negatives and the positives of taking meds. 

I am at a point where I think it would be beneficial to take them. I am just struggling with getting over the hump for whatever reason.

My positives of going on meds:
1) Less fatigue (hopefully)
2) More energy and motivation (related to above)
3) It's an acknowledgement and a step forward - getting over a major hurdle
4) I'll preserve all my "M&M's" (immune system) versus letting it gets holes in it that I'll never get back
5) Less inflammation
6) Hopefully my memory comes back?
7) I'm assuming my body will thank me (but that is a double edges sword - as my liver/kidneys may not thank me?)

Negatives:
1) I have a dependency
2) Always need to be mindful of insurance, job, etc. to make sure I have money to pay for meds on a daily basis - it's not like my simvistatin that I can safely miss on occasion and it won't harm me
3) Side effects (albeit, seems like they will be minimal) - Complera
4) Toxicity of them

I think I have determined that I will take it at lunch daily... I eat lunch every day... almost at the same time... All I need to to is boost my caloric intake by maybe 100 calories and I will be fine.  AND, I think this will work because then I can take my Zegerid at bedtime because it's well past 4 hours of taking the Complera. That has been a fear as well... because nothing has worked GI wise like Zegerid for me. Nothing.  So that is important. That is a major logistic that I think will work out for me.

Anyway... I'm hoping for positives and negatives like Hellraiser did - that is actually helpful to me.  :)

Thanks for not giving up on me. Please don't.   :-[
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 emeraldize

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Re: Help on mentally preparing myself to start taking meds
« Reply #91 on: July 08, 2012, 09:49:39 PM »
Fair enough, as Em said you guys have the experience. Can only comment on the specialist advice and also from a number of friends taking it for years who have developed resistance on some regimes where they became more complacent. There is also more scientific evidence around to show that this is an important issue. Off course being human means we will all make mistakes and inevitably miss pills. Still think its worth loading the odds in one's favour, but I'll be first to put my hand up when I mess up! However, how you take it is up to every individual. This is just my humble opinion, please ignore it if it offends anyone!

Hey AA,
We all do appreciate that there's an optimal way to do dosing---no doubt about it! And as JK and Eric48 and even I hope to point out--things don't always go optimally. That mental smacking JK reports doing--yep, I do that. I sometimes think the post-dose error internal flogging is worse than the error. Anyhoo. Stick with us. Yes, it's an individualized journey hence my caution about your caution re: Eric's advice when we're all sharing med war stories. Some of us pull the pin and toss it well, some of us don't. So, momentarily, I'll post again to reply to Forrest's focusing request.
Em
« Last Edit: July 08, 2012, 10:07:23 PM by emeraldize »

Offline emeraldize

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Re: Help on mentally preparing myself to start taking meds
« Reply #92 on: July 08, 2012, 10:00:58 PM »
Strictly from a numbers perspective the positive outweigh the negative. That's how I typically use a pros/cons listing exercise. However, you seem to need more. I'm adding some comments in CAPS.

My positives of going on meds:
1) Less fatigue (hopefully) I THINK 1. is NEARLY THE SAME AS 2 so YOU'RE DOWN TO 6

2) More energy and motivation (related to above)
3) It's an acknowledgement and a step forward - getting over a major hurdle
4) I'll preserve all my "M&M's" (immune system) versus letting it gets holes in it that I'll never get back MAYBE NOT ALL THE M&Ms BUT MORE M&MS
5) Less inflammation
6) Hopefully my memory comes back? YOUR MEMORY MAY BE SKETCHY DUE TO TOO MUCH STRESS
7) I'm assuming my body will thank me (but that is a double edges sword - as my liver/kidneys may not thank me?) WHAT IF SOMETHING ELSE POPS UP? SOMETHING NON-HIV?

Negatives:
1) I have a dependency ON MEDS? YOU ALSO HAVE A DEPENDENCY ON FOOD, AIR, TRANSPORTATION, SHOES
2) Always need to be mindful of insurance, job, etc. to make sure I have money to pay for meds on a daily basis - it's not like my simvistatin that I can safely miss on occasion and it won't harm me FOR THE 3 of the 4 ITEMS LISTED IN 1. YOU NEED A JOB IN ORDER TO PAY FOR THEM
3) Side effects (albeit, seems like they will be minimal) - Complera IF THEY'RE MINIMAL CAN YOU COUNT IT AS A NEGATIVE? YOU CAN COUNT IT AS A POSITIVE ESPECIALLY IF YOU ULTIMATELY ADJUST AND THE EFFECTS SIMPLY FADE
4) Toxicity of them  RISK OF TOXICITY ENDS UP ON EITHER SIDE OF THE EQUATION ULTIMATELY - EITHER DUE TO USE OF MEDS OR NON-USE IN WHICH CASE THE VIRUS BECOMES ESSENTIALLY EVER MORE TOXIC

« Last Edit: July 08, 2012, 10:06:10 PM by emeraldize »

Offline buginme2

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Re: Help on mentally preparing myself to start taking meds
« Reply #93 on: July 09, 2012, 09:06:07 AM »
Re-reading your post, you tested positive in April 2011 and have been struggling with starting meds since then?

Its been over a year and your still struggling with this?  Do you really think making a list of pros or cons is going to change that?

I read a book once written by a psychologist and the moral of the story was ...  sometimes you just have to do things that are uncomfortable to move forward. 

Its time to just do it. You may hate it.  So what, do it anyway.
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline AgilityAddict

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Re: Help on mentally preparing myself to start taking meds
« Reply #94 on: July 09, 2012, 12:31:01 PM »
I think that's a very valid point "buginme2". It's in some ways what I was trying to say in a diplomatic way (unsuccessfully).
Pro's and con's lists are not terribly effective in this instance if you do notnhavenone very powerful overriding argument for either side. Not very helpful to count 5 against 7 etc. In any case, one pro, for instance better quality of life and improved functioning can outway numerous numbers of cons.

People are very rarely "100%" about anything. But whereas one may have mixed FEELINGS about something, the behaviour (in this case whether you take the pill or not) has to be all or none.

Also, if you work with lists of Pro's and Con's, try to end with the list of Pro's. At least it ends up steering you in the direction of making a positive decision.

That's also why I tried to steer away from this Approach and encourage using the expert you trust to be the leader (whilst you still make an informed decision) and then get on with it. It sounded from what you reported, Forrest, that you have a specialist who is interested and very supportive. That is a huge bonus!

I also tried to include some practical advice on adherence. I don't want to raise any arguments, but perhaps refer Forrest to the information leaflets on this, your very own site that point to the same thing I was trying to say. No one can be perfect all the time, but if one doesn't know what an optimal regime is in the first instance, or have help in trying to achieve it, you have much less chance of getting even close to it! That certainly doesn't mean you have to mentally punish yourself if you make a mistake. Knowledge is power, and if we try to ignore the sometimes uncomfortable truths about difficult issues, it unfortunately don't make them any less true.

Anyway, all the best for the future and your decision. I will shut up now and not interfere again!

PS: just for reassurance: Em mentioned perhaps you can only achieve optimal adherence if you're part of a space shuttle mission team. I'm not in that line and live a busy life, working full time, doing lots of other things to provide a good work life balance , :P

Offline Common_ground

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Re: Help on mentally preparing myself to start taking meds
« Reply #95 on: July 09, 2012, 12:51:58 PM »
One thing that helped me when going on meds was to think that you will take your meds, day by day,week by week or month by month.

I believe its wrong to say " Youre going to be on meds for the rest of your life." This statement imposes that you will pop pills for 20+ years. Dont fall into that trap!

Take a look at the history of this disease and how the treatment has changed. No one knows what the future will look like treatment wise, but what we can do is to look at the history and see how things has changed through the years. From no treatment, to life sustaining treatment and to better and less toxic regimens allowing us not only to survive but to even switch around and make individual choices. The research and knowledge today surrounding this disease is vast and it will, just as the meds/treatment, continue to improve. To think otherwise would be ludacris.

Im not saying we will not still need some help in controlling the virus but with the history as the ONLY fact we can certainly rely on today, things will look different in 5 - 10 years, unless all research comes to a halt, which is why its important to support local and international organizations working for our cause.  :)

   
« Last Edit: July 09, 2012, 03:26:50 PM by Common_ground »
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline leatherman

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Re: Help on mentally preparing myself to start taking meds
« Reply #96 on: July 09, 2012, 05:27:46 PM »
I believe its wrong to say " Youre going to be on meds for the rest of your life." This statement imposes that you will pop pills for 20+ years. Dont fall into that trap!
personally I've never understood the big deal about taking meds "for the rest of my life". I don't know a person over 35-40 who isn't taking some kind of daily medication. ;) And I sure don't know anybody that would freak out over taking tylenol every day.

I'm just thankful as hell that I never had to do an injectible medication (came close to Fuzeon once) like needing insulin several times a day. There ARE worse/more tedious things that popping a couple of pills a day. ;)

mikie
who HAS been popping HIV pills for 20 yrs and hopes to be doing it for another 20++.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Rockin

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Re: Help on mentally preparing myself to start taking meds
« Reply #97 on: July 09, 2012, 06:44:45 PM »
Im a noob on this but I don't mind taking my meds at all. I feel much better knowing that Im under treatment and undetectable and that Im giving my immune system time to heal itself after my PCP last year.

A few weeks ago everyone in my house got sick...everyone had fever, coughing and my mother, especially, got so sick we thought she might have developed PCP as well. Turns out it was synus but it was a really nasty one.

All I had was a mild throat infection that lasted 2 days with no fever. And for that I thank my meds.


Offline emeraldize

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Re: Help on mentally preparing myself to start taking meds
« Reply #98 on: July 09, 2012, 10:48:43 PM »
PS: just for reassurance: Em mentioned perhaps you can only achieve optimal adherence if you're part of a space shuttle mission team. I'm not in that line and live a busy life, working full time, doing lots of other things to provide a good work life balance , :P

Hey AA: That's not what I wrote -- you took it slightly out of context -- I was challenging you to report back in after two years of adherence along the lines you were proposing to Forrest and tell us you were able to do it "with the precision of" a space shuttle launch team. That's different than what you're noting here.

But more importantly, the OP asked for input on his list -- he wasn't inviting opinion on lists working/not working -- he even included a reference to a PM with Leatherman about an ASO using listmaking as a tool. So, can we put his thread back on track?

He's ramping up to taking meds and anyone who's had the luxury to have time to think about it and not have it be a life/death decision usually goes through a decision making process---it's different for everyone.
« Last Edit: July 09, 2012, 11:07:48 PM by emeraldize »

Offline AgilityAddict

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Re: Help on mentally preparing myself to start taking meds
« Reply #99 on: July 10, 2012, 04:45:03 AM »
I'm aware of his request for more Pro's and Con's. I have been in the same position, agonising over the decision for many months and having " the luxury to have time to think about it". So I only speak from geniune current experience, "newbe" or not. I have used many Pro's and Con's lists and will continue to do so especially since my decision has not worked out that well. And off course different things work for different people. I think quite a few readers of this thread have noticed that the Pro's and Con's list does not seem to be helping him make a decision. I'm merely suggesting he perhaps adds an additional strategy as he has strength in his medical team. The expression "flogging a dead horse" comes to mind. But anyhow, if the list is the ONLY thing he wishes to use and that is helpful to him, off course he should absolutely persevere with it and again I wish him all the best!

 


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