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Author Topic: Got the Bad News This Week  (Read 4521 times)

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Offline cicero

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Got the Bad News This Week
« on: August 09, 2013, 10:10:17 PM »
A week ago today on Friday, around this time in fact, I started feeling sickish, a little feverish and nasty.  I was at a friend's house and didn't think much of it, figured it was a bug and would go away.  By Sunday I had a high fever and could not shake it and Tylenol/Ibuprofen etc wasn't doing much to help. Fever was my only symptom. Since it was Sunday and I wanted to get a jump on it before the work week I went to an Urgent Care (waited forever) where they did some tests, and I, confident it was not HIV but just covering all bases, suggested an HIV test to boot.

By Wednesday I was still sick. I got a call from the doctor at the Urgent Care.  He stammered around and revealed that my test had been "inconclusive" and was sent for confirmation, and then in so many words said this pretty certainly means I am HIV positive.  Since the fever was continuing he wanted to check me into the emergency room for blood cultures and all kinds of other tests, but I told him first I wanted to see my primary doctor and have everything from this point under his purview. 

I went there on Wednesday and they did another test to confirm, results not back yet, but everyone's acting like it's a formality.  He prescribed me Atripla.  I am right now swallowing my very first dose and I'm petrified of the laundry list of side effects though some posts here give me a little comfort about what to expect (different for everybody I know). On Thursday I was feeling better, no fever, and today, fine except for a little weak and depressed from the situation.  So we'll see what happens after this first pill.  I was amazed how much it cost with my insurance -- and shocked at what it would cost without.  How do people afford this disease?  I feel fortunate to be insured.

Anyway, I'm really feeling alone and scared.  No one has really counselled me on this; just got the medication and waiting on the first round of bloodwork the doctor did, after which I hope he explains how often I do all that and how often I visit him etc (I love my doctor, I have no doubt he will). 

I have one great friend who was a mutual friend of my cousin who was HIV positive (no deceased from something else).  He has been very comforting though he lives in another state.  I can never tell my parents about this.  I am worried about all the questions people ask about where I was at work for those three days.  I'm worried about mental health as I saw in my cousin it take a toll between the drugs and his inability to handle it psychologically.

I'm mostly just kind of in shock and surprisingly calm.  Trying to find a way to tell my close female friend here, who I love very much and her daughter.  I worry about how people will react to me if they know.  My other gay male friend here in town is not open minded. Everything is swirling in my mind.

Sorry this is long but I had to get a lot off my chest.  I'm thankful for the internet and sites like this.  I don't want to come here sounding all woe is me among people who are so helpful as I've seen in other posts, but have years of this under their belts, many who did years without the magic of the internet or even the amount of knowledge that is out there today.

Thanks for reading if you got this far. 

"How could this happen to lovely me?" -Jacqueline Susann

Offline Jeff G

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Re: Got the Bad News This Week
« Reply #1 on: August 09, 2013, 10:30:45 PM »
Hi cicero . Welcome to the forums .

I cant believe your doc has started you on ARV's without a confirmatory test and labs . There are many people who are HIV positive and do not need meds for a long long time , some never . I'm not doubting your story but ARV's before a confirmatory test is premature medicine .

Is there anything more you can add about why your doc was so quick with the meds ?

I'm wishing you all the best . You may have had a false positive and you may not need meds even if you are HIV positive .     

Offline cicero

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Re: Got the Bad News This Week
« Reply #2 on: August 09, 2013, 10:54:53 PM »
Hi Jeff,

Thanks for the welcome.  My friend who is the only person I have talked to so far had the same question as you.

My doctor said there is a line of thought that starting medication right away can help on down the line.  I guess he's going with that philosophy.

I am holding out against hope, though no getting my hopes up, that on Monday I'll get a call saying "this has all been a big mistake".  But both doctors act like the confirmation is a formality at this point.  I feel so stupid after being so safe for so many years to have let me guard down a couple times knowing exactly how to protect myself at 37 years old.  That is really bothering me most I think.
"How could this happen to lovely me?" -Jacqueline Susann

Offline Jeff G

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Re: Got the Bad News This Week
« Reply #3 on: August 09, 2013, 11:05:20 PM »
If it were me I would hold off and see what my labs looked like before starting meds , its simply sound medicine to do so .

Starting meds early can also mean starting them with a cd4 count above 500 instead rushing the pharmacy as soon as your diagnosed . Its particularly troubling your doc didn't wait for a conformation before meds .

I urge you to at least get a second opinion from a doctor who has experience treating HIV before jumping on the med bandwagon .

Please take my tone as concern , because I am concerned .

Offline cicero

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Re: Got the Bad News This Week
« Reply #4 on: August 09, 2013, 11:15:37 PM »
I appreciate the concern and the advice.  Thank you.

This doctor has been my doctor forever, and in his website bio "HIV care" is a "special interest".  I know that doesn't mean he's an expert or even experienced, but I do believe he is experienced with HIV positive patients.

I'm not sure what happened in that appointment it's still a blur.  But I do now realize I don't even know what cd4 etc is....which will be important. 

I think he may have prescribed because the fever wasn't going away on its own or even with fever reducers (although it did the next day, finally).

I am one pill in.  Literally took the first pill 1 hour and 15 minutes ago.  If I stop for the rest of the weekend until I hear back on Monday, will I thereby be making myself resistant to this pill?
"How could this happen to lovely me?" -Jacqueline Susann

Offline Jeff G

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Re: Got the Bad News This Week
« Reply #5 on: August 09, 2013, 11:36:50 PM »
As long as you take as prescribed and don't miss doses you most likely wont run into resistance issues . I was on atripla  and had to stop taking it 2 times . I quit and went back on without harm . As long as you take your dose of meds with 95% adherence its generally safe to do so . I certainly don't blame you for being skeptical of some guy over the internet doubting the doctor you have used for years but once you are educated about HIV you will understand my position better .

Many people who test poz have time to consider and digest a diagnosis before meds and I cant help but feel you are being cheated out of that . That being said you most likely will not suffer harm from starting meds now and hopefully you wont need them when your labs all come back and then can make a decision based on the facts .

Im going to check out that website now .

Offline cicero

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Re: Got the Bad News This Week
« Reply #6 on: August 09, 2013, 11:45:05 PM »
No, I appreciate your input - I really do - and on Monday I am going to better line everything up.  I do feel like this whole experience has moved too quickly so far.  Thanks again and good night!
"How could this happen to lovely me?" -Jacqueline Susann

Offline xasxas

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Re: Got the Bad News This Week
« Reply #7 on: August 10, 2013, 12:25:53 AM »
I think taking meds straight away isn't a bad idea -- I think the guidelines in the US were changed recently so that poz people started upon diagnosis instead of below a certain (500) CD4 count.  If your second tests come back negative, then you can stop straight away.

Also, I started on Atripla straight away in what was in retrospect likely my acute infection phase and it helped me recover my CD4 ~270 to ~900 in a matter of months.   

Offline Jeff G

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Re: Got the Bad News This Week
« Reply #8 on: August 10, 2013, 03:14:37 AM »
My concern is not starting meds early , I have no problem with that , its starting meds without a diagnosis and no labs to read that I find odd .

 

Offline mecch

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Re: Got the Bad News This Week
« Reply #9 on: August 10, 2013, 11:08:23 AM »
Maybe something is being lost in communication?

cicero - the red flags here are that:

1) you should get a western blot confirmation and the doctor telling you, "you are HIV+"

2) the standard practice is that blood is drawn to check the immune system and analyze the virus. 
2a) Not every virus "strain" can take any HIV medicine.  I dont say this to add extra anxiety, I'm sure you'll be fine.  Rather to explain the context of Jeff G's comments.  2b) one might not need medicine for some time. 
However 2c) - some docs are moving to treating at diagnosis no matter if meds are "needed" or not. 
2d) "treatment at diagnosis" usually implies at diagnosis AFTER the first blood draws and analysis.


3) if you haven't had clear communication with your doctor, or weren't knowledgeable or calm enough to process information, and you are on HAART directly in a state of confusion, its arguably a poor doctor-patient setup. 

3a) HIV+ people generally have a good choice of combinations and the person should have some input into which combo seems most suitable
3b) HAART is a long term commitment and the ideal situation is that a person should be basically knowledgeable about the whys and hows, and basically ready to commit. (if there is no URGENT reason to start, such as having AIDS at diagnosis....etc.)


I would suggest, if these points speak to you, you discuss them with your doc. He/she might have good answers for you!

To start learning - click TREATMENT above on the menu, then Lessons.

I had a meningitis like seroconversion.  Quite violent.  If your headache was a sign of your seroconversion, you identified the infection right away. There are some advantages to this  ;D :D, so that's a little blessing at this time of getting shocking and bad news  :-[ :-\

Most people recover from seroconversion and take some weeks, months, or years to prepare for and/or need medicine. 

(I didn't do well with HIV on my own.  I declined steadily over a few months, and my viral loads never fell satisfactorily.  So I was on HAART within months.  In hindsight, it would have been correct for me to be on HAART "at diagnosis".....but after analysis...) 

Doesn't matter now - because HAART stopped HIV and my immune system is repaired. 

That's the final message I wanted to communicate - you will be OK!

As for the price of HAART, if you are in the USA - the companies that make HAART often have co-pay assistance to cover some out of pocket expenses.  (I'll let people in the US explain how that is done.  We don't have that in my country.)
« Last Edit: August 10, 2013, 11:26:28 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline cicero

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Re: Got the Bad News This Week
« Reply #10 on: August 10, 2013, 11:58:00 AM »
Well thanks mecch and everyone. 

In the moment of getting the phone call from one doctor and then visiting the other doctor, the fear and urgency was powerful.  I don't know why my doctor prescribed Atripla before the western blot is back. Now I feel confused and stranded over the weekend without being able to call him.  Like I said I took the first pill last night and it knocked me for a loop, though I'm feeling relatively ok here at 12 noon EST. 

On Monday I should get blood results and I plan to make an appointment to discuss all this bloodwork and starting the medication.  In the meantime after taking one pill I don't know if I should stop until everything is back and discussed further.

Thanks again for your thoughts.
"How could this happen to lovely me?" -Jacqueline Susann

Offline Jeff G

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Re: Got the Bad News This Week
« Reply #11 on: August 10, 2013, 12:17:57 PM »
I feel a little responsible for your confusion and anxiety and I'm sorry I added to an already stressful time in your life . 

I can tell you this . You are going to be OK one way or another , there are many of us here that have lived with HIV 30 years or more so you have a long life ahead of you .
When you see your doctor again you will have to opportunity to discuss and clear up the confusion .

Offline cicero

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Re: Got the Bad News This Week
« Reply #12 on: August 10, 2013, 12:34:19 PM »
Don't feel responsible. I value the input. I have more to go on than I did before.
"How could this happen to lovely me?" -Jacqueline Susann

Offline mecch

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Re: Got the Bad News This Week
« Reply #13 on: August 10, 2013, 01:27:57 PM »
In the meantime after taking one pill I don't know if I should stop until everything is back and discussed further.

Thanks again for your thoughts.

Sure, take the pills in the meantime.  It will be just another day or a few until everything is clearer.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline cicero

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Re: Got the Bad News This Week
« Reply #14 on: August 12, 2013, 08:40:44 AM »
Got the call from my doctor this morning.  Indeed, the test is positive.  My t-cells are 4 hundred something, but my viral load is in the millions.  I will go in a month for more tests and in the meantime keep taking this Atripla.  I'm so sad and disappointed in myself.  Today's my first day of work after starting the meds; wish me luck I guess.
"How could this happen to lovely me?" -Jacqueline Susann

Offline mecch

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Re: Got the Bad News This Week
« Reply #15 on: August 12, 2013, 10:06:16 AM »
OK. Well good luck on everything going forward.
Its not obvious to you how its possible to do so, but I'll remind you not to worry too much about the millions of virons....   Most people have astronomic viral loads in seroconversion. 

So you are one of the very few who are cutting this down, instantly at infection, with the HAART.  Replication is stopped dead.  Each fee days your viral load is falling dramatically. It'll quickly be VERY low, and then it may take a bit longer to go from very low to undetectable.  So, among the bad news, there is that silver lining - very early treatment. Which it seems promises certain long term benefits. Not to mention in the short term, that virus will be a no go in your system....
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline cicero

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Re: Got the Bad News This Week
« Reply #16 on: August 12, 2013, 09:00:23 PM »
Thanks mecch.

Right now I feel like I will never not feel gross.  I know that's not the case, but it's hard to shake the feeling.  Work was tough today.  My mind races.

The most disappointing thing is that I've let this happen to myself in 2013 at 37 years old.  I admire those of you, even before this happened to me, who have survived for many years, because things were different then and I know being diagnosed in this day and age is easier than even 10 or 15 years ago.  I can't fathom that some of you are doing well even after being diagnosed in a time when they were still debating what to call it.  The thing is I just knew better. I knew better.  That is the hardest thing to come to terms with because now what's done is done, forever.  I feel embarrassment, depression, and even shame.

Despite saying all that (I just have to get things off my chest, or typing fingers as it were), I am feeling ok.  I've told my three closest friends and cried and I have their support, and I appreciate the support I've already gotten here.  The Atripla does not seem as bad even after three times as it did the very first time.  I've just got to learn to manage, like the rest of you here have done. 
"How could this happen to lovely me?" -Jacqueline Susann

Offline mecch

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Re: Got the Bad News This Week
« Reply #17 on: August 13, 2013, 07:48:56 AM »
Im 50 and got HIV at 45.  Its not that rare. 
After the trauma faded, I was able to accept my own mistakes and also I appreciated and patted myself on the back, for the many years I was HIV negative.
Also, you can think about the difference between an accident and a mistake, if that helps in your situation. 
Also, everyone has accidents and mistakes and bad shit happen in life. Getting HIV may not be the worst one, in yours, but it will take time to feel that way.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline britchick

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Re: Got the Bad News This Week
« Reply #18 on: August 13, 2013, 10:45:47 AM »
cicero,

Im so sorry that you got this news.I did not know my diagnosis for approx 10 years...and had a really lowcd4 count.Im really glad that you have started meds already and  i look forward to hearing about your numbers climbing and viral load going down.

I know its a really difficult time for you but you've taken the first step:meds ...and starting now is a good decision.

All the best

britchickx

Offline vertigo

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Re: Got the Bad News This Week
« Reply #19 on: August 13, 2013, 06:19:13 PM »
Hi cicero,

Sorry for the bad news.  I'm glad you found us here and are able to articulate how you're feeling so clearly.  It speaks well to your resilience and adaptability.

Try not to beat yourself up too badly over the diagnosis.  It's just a virus, not a moral failing.  You didn't drive drunk and run over a child.  You had sex w/o a condom -- something a gazillion people do worldwide daily, and something most hiv-neg guys have done more than once themselves.  I caught the bug last year at age 41, after two decades of gay adult life and (mostly) safer sex.  But fly too close to the sun once too often and you can get burned.  It happens.  Like mecch, I'm thankful for the long run I had as a negatron.

One thing you haven't mentioned is resistance testing.  Is you doc doing a genotype on your virus?  I presume he must be, if he's worth his salt.  A small number of folks catch a strain that is already resistant to one or more drug classes.  This is another reason why starting you on Atripla so quickly seems not fully considered.  But, if you have a resistance issue, there are many other drugs you could be switched to.  Not likely to be an issue, but also not something to be ignorant of.

So, anyway, hang in there.  You will feel better!



Offline cicero

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Re: Got the Bad News This Week
« Reply #20 on: August 14, 2013, 12:18:28 PM »
Thanks britchick and vertigo.

I honestly don't know what he's tested for beyond t-cells and viral load.  He did say he'd make an appointment in a month to see how the Atripla is doing.  I'll mention resistence testing and all my other questions then. I did mention on the phone that I was concerned reading about people having to switch meds and he said the main thing is don't miss any doses, which I kind of knew. I do know he has other hiv+ patients and someone mentioned him elsewhere unprompted so that builds some confidence. We'll see what he says in a month.

Thanks for the support here, this forum is one of the few things I've got as I face the new normal.
"How could this happen to lovely me?" -Jacqueline Susann

Offline cicero

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Re: Got the Bad News This Week
« Reply #21 on: August 14, 2013, 12:20:52 PM »
In the meantime, who has the magic quit smoking solution? ;)
"How could this happen to lovely me?" -Jacqueline Susann

Offline lincoln6echo

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Re: Got the Bad News This Week
« Reply #22 on: August 14, 2013, 03:38:06 PM »
Hey Cicero
It's coming up almost a year since I went through he same thing as you and we are nearly the same age.

Like you I caught my infection early during seroconversion, within two mo's actually.  My VL was almost 10 million, my CD4's in the mid 300's.

I started HAART 1 month later and indeed, the virus drops dramatically. It takes a while longer for you to be undetectable with a high VL like that but it will happen, just stay compliant on taking your meds.

Good luck, you'll be ok.

PS. I'm not a smoker so don't have a magic solution, but kudos to you if you quit. It only means better health in the end.

lincoln.


Offline Ann

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Re: Got the Bad News This Week
« Reply #23 on: August 15, 2013, 06:04:51 AM »
In the meantime, who has the magic quit smoking solution? ;)

If you find out, let me know! :)

I've managed to cut down dramatically by switching to "roll-yer-own", but I've never managed to quit completely. :(
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 friskyguy

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Re: Got the Bad News This Week
« Reply #24 on: August 15, 2013, 07:26:54 AM »
Glad you found this forum.......lots of great advice from some knowledgeable people can be found here.

Indeed you are fortunate to have started meds during the very initial stages of HIV.
You will be one of the very very very few to do so. I am very jealous.

Latest research shows by fighting this nasty chronic disease in the initial stages reduces the seeding of the viral reservoirs in your body tissue and therefore much more likely for your body to bounce back quickly and to be in a very good place to respond positively to a cure when it arrives.

Google the Visconti functionally cured group in France for more info on this.

Take a deep breath and brush up on reading on the many websites there to help before you go see your doctor. Thebody.com and Aidsmeds.com are good starting points.

Take care
Sero converted Sept '10 / Confirmed + Dec '10
Jan '11, VL 9,500 / CD4 482 (32%)
Feb '11, VL 5,800 / CD4 680 (37%)
start Atripla
Mch '11, VL UD / CD4 700 (42%)
Jun  '11, VL UD / CD4 750 (43%)
swap to Kivexa and Efav. due to osteopenia diag. (DEXA) / kidney issues ( decline in eGFR to 77 )
start supplements - Vit D3 / Omega 3 / multivitamin / mini aspirin
Dec '11,  VL UD <20 /  CD4 670 (49%)  / CD4:CD8 = 1.4
all labs now within normal ranges
Mch '12,  VL UD / CD4 600 (51%)
Sep '12,  VL UD / CD4 810 (51%)
Mch '13   VL UD / CD4 965 (56%)
Sep '13   VL UD / CD4 (not taken)
Dec '13   VL UD / CD4 901 (35%) / CD4:CD8 = 1.1  /  eGFR > 100

Offline Jeff G

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Re: Got the Bad News This Week
« Reply #25 on: August 15, 2013, 09:45:12 AM »
In the meantime, who has the magic quit smoking solution? ;)

cancer

Offline le_liseur

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Re: Got the Bad News This Week
« Reply #26 on: August 15, 2013, 10:10:40 AM »
I have no experience at all in smoking, as I don't smoke. My boyfriend smokes. A lot. And tried a few times to stop for good, and managed to stop for a few months each times. I can understand how much of a fight this can be and I saw how so much more things are attached to the act of smoking than just the cigarette itself.
 
Many people use smoking as a coping mechanism for something else, and it must difficult to cease this habit without even taking into account the addiction factor, which is huge too.

For what my advice is worth on this, I feel like one of the way to help you stop smoking would be to get you in a mindset where you "want" to stop, and not just "need" to stop (because of health reasons, family reasons, other's ultimatums, etc.) You shouldn't stop smoking because people tell you it's a bad thing to do; it seems like it's a long-term process that you need to embrace willingly, not as a chore. :S

Beside that, welcome here and hope you find the forum useful and welcoming. :)

Offline PozJimC

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Re: Got the Bad News This Week
« Reply #27 on: August 15, 2013, 10:44:27 AM »
Hi everyone.  I have read most of the messages for this forum.  I was diagnosed in 1993 and did not start medications until 2000.  I did not have any symptoms either.  My viral load started to rise and my CD4 started to drop.  The fact that you were started so early indicates that the doctor was concerned with you having a cold/flu like symptom and nothing was helping.  Still unless there was something your doctor was seeing and was not telling you because it was not confirmed may be the reason he/she took these steps. 
I also wanted to let you know that even though you take all precautions to not receive or transmit the virus the only true way is abstinence.  That said, we being human and have the urges we do to have sex is natural.  I new about the virus back in 1986 when it first started being discovered and I worked as a volunteer at the Stop AIDS Project in Chicago where people were being educated about the virus in an anonymous atmosphere.  I knew all the precautions too, but here I am a long time survivor.  It does take a lot to battle the depression part of being POZ.  It has stayed with me even now. 
Keep in good communication with you doctor and be completely honest with him/her and everything will be fine.  They can not be very helpful unless you give them all the information even if you think it is not.  Good luck.
PozJimC

Offline le_liseur

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Re: Got the Bad News This Week
« Reply #28 on: August 15, 2013, 11:35:18 AM »

I also wanted to let you know that even though you take all precautions to not receive or transmit the virus the only true way is abstinence.  That said, we being human and have the urges we do to have sex is natural. [...] I knew all the precautions too, but here I am a long time survivor. 

This part of your comment makes me uneasy, Jim. The only true way is not abstinence : the only true way is making sure the circumstances permitting infection to occur are not met. And proper safe sex habits will do that. You say you knew all the precautions to take, but still got infected, which sure isn't something jolly. But are you certain you applied them all the time? I also knew all the precautions I was supposed to take, but I didn't apply them all the time. And you're so very right about how we being human have urges, so that's why there's nothing to blame about not applying safe sex practices all the time. Human are not just theoretical models, they are made with flesh and blood and desires, which is why we can make mistakes, and have the right to do so ; as well as not feeling shameful about it.

In other words, I do not believe abstinence is the only way to protect yourself from a HIV infection 100%. :)

Offline mecch

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  • red pill? or blue pill?
Re: Got the Bad News This Week
« Reply #29 on: August 15, 2013, 04:24:36 PM »

I also wanted to let you know that even though you take all precautions to not receive or transmit the virus the only true way is abstinence. 
I guess you don't mean it the way someone listening to you might construe this. 
I don't feel that this statement is constructive.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Peterdenmark

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Re: Got the Bad News This Week
« Reply #30 on: August 18, 2013, 11:02:27 AM »
If you find out, let me know! :)

I've managed to cut down dramatically by switching to "roll-yer-own", but I've never managed to quit completely. :(

Hi Cicero,

Thank you for sharing yr story, I wish you all the best :-)

About smoking, I had success by using both chewingum and bandage with Nicotine at the same time.

Of course I'm now addicted to Nicorette chewingum - but it's still better than smoking.

3 times per year I allow my self to smoke. On my vacations, and New Year's Eve, the reason I do this, Is I AM a smoker, if I tell my selve I can't ever smoke again - I would start.

Doing this might sounds strange for u guys - but works for me - 4 years now :-)

Hugs,

Peter

 


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