New Dad NATURALLY! I want to stop taking my meds and here's why. Your thoughts?

[GuySmiley]

So,
In 2006 i was diagnosed and had a CD4 count of 130 and a VL of 400.
The doctors always thought it was a little strange that i had such a low VL count.
I had never had any health issues prior and have never had any symptoms or sickness or anything.
Not even colds. I never got sick. The only reason i found out i had it was through a blood test for something unrelated to HIV.
 I was shocked and scared and My new ID doc at that time said i need to get on Meds right away and so i did just that.
Well, My VL went undetectable almost immediately however my CD4 count has been slow to rise.
I also have hep c which may contribute to the slow rise. I will be joining a study in the next 3-4 months to try and eliminate my hep c.

Anyhow, Fast forward to today, 5 years and change later, My VL remains undetectable and my CD4 count is now at around 250. Now keep in mind, still never sick, never had problems, never had a fucking thing wrong with me. Well, that's not entirely true. It seems as though when i started taking my regimen of LEXIVA/TRUVADA/NORVIR, i started getting a little sluggish, somewhat unmotivated, my back started hurting a lot, my memory is noticeably forgetful at times and i just don't have the outgoingness i had before i started taking meds. I'm not depressed. I dealt with my diagnosis and trudged forward. I quit drinking almost 8 years ago, same with drugs, i quit smoking 5 years ago and by all accounts I'm mentally good.
I just feel like the meds are sucking the life out of me. Even though they never made me sick ever, its just this overall feeling i feel like its tearing the fabric of my internal body chemistry apart.

About a year and a half ago my wife and i decided to try a sperm washing procedure in hopes of having a child. When all was said and done we spend about $4,000.00 and flew from Los Angeles to Boston to have this pretty simple procedure done but in the end it was a total wast of money and it didn't work.

After my wife and i had done extensive research(not to go into all the long details) we decided we were going to try and conceive naturally. Of course i was not spear heading this. It was my loving and caring wife who was opening my eyes to the possibility and with our knowledge, my undetectable viral load and with the close guidance from my ID doctor we gave it a go. My wife took Anti Virals for extra protection 2 weeks before we tried conceiving and on the first month nothing, on the second month.....BAM....She was Pregnant.

We now have a beautiful baby boy who is 8 months old today, HIV negative, as well as my wife who remains HIV negative.

Things are going great and yet i still feel like the meds are slowly wreaking havoc on me. Like, turning me into a brittle man. Do your meds ever make you feel like that? It was a slow build up so its really hard to tell how profound the meds can be on us ya know?

So, here i am. I'm 38 years old. My CD4 is 250 VL undetectable, Ive been on the same meds since i started in 2006 and i think at this point i want off the medication merry go round.

I was never sick at 130 CD4 and in the back of my mind i have always regretted starting meds right away. Maybe i just have a naturally low CD4? That's totally possible id say.

I'm thinking i want to stop taking meds but keep seeing my id doc every 3 months for labs, and just not worry about this virus unless it has something to tell me which it never has.

Id really love to hear your thoughts on this. Anything you say that i can pull from would be so appreciated.

BTW, i have not posted on here in soooo long and my old Screen Name was erased but i was on here as Morton Salt awhile back.

Thank you for taking the time to read this. I was trying to deal with these thoughts on my own but i felt the need to blurt it out to you all who know exactly what I'm talking about and know exactly what I'm feeling.

Best to you all,
~Guy[/size][/size]
 

[skeebo1969]

   

Thank you for taking the time to read this. I was trying to deal with these thoughts on my own but i felt the need to blurt it out to you all who know exactly what I'm talking about and know exactly what I'm feeling.

  It's nice that you have that confidence in us I suppose, but the truth is without the meds you will die.  I don't care how good you felt before, or how much your back hurts now.  Your newborn will grow up without a father, point blank.

 

[Matty the Damned]

BTW, i have not posted on here in soooo long and my old Screen Name was erased but i was on here as Morton Salt awhile back.

Nope, your account still exists: http://forums.poz.com/index.php?action=profile;u=347

Ann is gonna whup yo' ass boy.

Long time no see, Morty.

MtD

[mecch]

I just feel like the meds are sucking the life out of me. Even though they never made me sick ever, its just this overall feeling i feel like its tearing the fabric of my internal body chemistry apart.

What do you mean by internal body chemistry??
Here are explanations for feeling less vigor:  Age? Stress? Physical fitness? Fighting Hep C?

I get this feeling that there is an emotional motivation to selecting out HAART as the thing that is bringing you down.  

Anyway, logically, and since you are not a denialist – if you quit HAART, eventually HIV will make you feel much much worse than you do now. And then you’ll be dead, too.

Congratulations on fatherhood!

[bocker3]

Congrats on becoming a father.

Now, of course, fatherhood comes with all sorts of responsibilities.  One of those is to insure that you do right by your son.  Killing yourself would not be doing right by him.  So.....  if you don't want to take your meds for yourself -- take them for HIM.  Help keep the odds up that you will be there for all of his "firsts" -- step, word, date, broken heart, etc, etc.

Mike

[woodshere]

its really hard to tell how profound the meds can be

YEP.  But it appears you are far better off now than when you were first diagnosed.  Is it worth sacrificing those gains and going back to where you were or possibly worse?  Are you willing to take that chance and the result of not being able to be actively involved in the raising of your son?  If it were me the answer is an obvious no!

And congratulations!

[wolfter]

All my friends who died felt great before they got sick.  Being a new dad, I'd think you'd want to continue taking meds to witness your son's achievements through the years.  And now,I'll quit because I don't understand the hesitance to continue taking a few pills a day. 

[HowYouDoin]

i think you should do as your doctor tells u. You are fighting two battles, hep c and hiv.

[GSOgymrat]

First, congratulations on your child!

I just feel like the meds are sucking the life out of me. Even though they never made me sick ever, its just this overall feeling i feel like its tearing the fabric of my internal body chemistry apart...

Things are going great and yet i still feel like the meds are slowly wreaking havoc on me. Like, turning me into a brittle man. Do your meds ever make you feel like that? It was a slow build up so its really hard to tell how profound the meds can be on us ya know?

I don't relate to that. If you are not having side effects what is the source of these feelings that the medications are wreaking havok and turning you into a brittle man?

[GuySmiley]

Thanks for the responses. and i hope Ann doesn't kick my ass for having another one. She can cancel the first one i had.
So I'll clarify a little bit.
By a brittle man i mean this: Before i started taking meds i had no problems at all. As soon as i hopped on a regimen it seemed like i started having back problems, severe spinal stenosis, degenerative disk disease, 3 bulging disks, I'm always tired, I'm always forgetting shit, and it just seems like i was way better off before starting my regimen. And again, before i started my regimen in 2006 i had no symptoms or sickness of any kind.

It could all just be coincidence i guess. I just feel like i needed to get all i said off my chest.
Another reason, and I'm sure this is a pretty big one is i got this e mail from my brother last night and it said this:

TO GUY SMILEY

"fyi
 
For what it's worth
 
We hung out with Christina (the girl we know that was born with HIV) in San Francisco recently.
 
She takes NO HIV meds AT ALL.  She feels the best she's ever felt in her life and she's totally healthy
 
When she was on the meds,  she was sick as a dog and was in and out of the hospital
 
Her mother is taking the HIV meds and she's depressed and sick all the time and looks WAY old these days
 
Christina looks awesome
 
DO more research
 
Word in the community is that it's the HIV drugs that is turning HIV into AIDS and killing people
 
If it was me,  I wouldn't put 1 more HIV drug into my mouth or body
 
That's just me
 
my 2 cents
 
FROM YOUR BROTHER"

My first thought was...What a prick for planting doubt in my head. I feel like I'm doing the right thing and all of a sudden he comes up with some fucking bullshit like that. I believe the meds work. I'm not a denialist but when i hear shit like that i start second guessing my decisions.
And who the hell is he? He doesn't have HIV so how the hell would he know if he would take meds or not?

That's why i couldn't sleep last night and wrote what i wrote. I couldn't sleep with what he said swirling in my head.  What do you think of his e mail he sent to me? What am i supposed to make of that? How am i supposed to respond to that?  Arrgghh!!!!

Well, i hope that sheds a little clarity on where my mind was last night.

Truth be told, Ive never had side effects on meds, my CD4's are higher to the point where i can get started on HCV treatment, I'm doing pretty well aside from some aches and pains here and there which I'm sure are from wear and tear on myself over the years. I just thought for a moment that maybe i didn't need my regimen right now or that i ever needed it yet. I think I'm reeled back in now. All that's left is the wreckage...lol   

[newt]

Getting off meds is an understandable motivation

However, changing to sommat less fatiguing will make you feel better and keep you alive. I never liked Lexiva, I do like Prezista and a bunch of other drugs. Lexiva is often reported as taxing. It's not meds or no meds. Some meds are better (much better) than others.

I really appreciate the fact of life being ruled by meds. Because mine is. I really appreciate the improvement you can get by switching. Cos I have and things improved. I really appreciate  the fast downhill slope of stopping meds, because it's happening to the one man I really care about. Your CD4 count returns to a pre-treatment level pronto, like 3-9 months, You lose weight, feel tired, get ill, dangerously ill. What's all that gonna do to you being a great dad?

In 5-10 years treatment will be different, probably radically different. How old will your wonderful child be then?

If it's a bone problems get off the tenofovir.

It's possible to die from HIV with no/relatively few symptoms.

 - matt

[David_CA]

Is your brother HIV+?  If not, it's easy to say that he wouldn't "wouldn't put 1 more HIV drug into my mouth or body."  Believe me, I felt great too... until I quit felling great.  I was sick.  I was in the hospital for 8 days one step up from the ICU.  If I hadn't gone to the hospital when I finally did, who knows how much longer I would have lived; my Dr. didn't think it would be long, though. 

Can your Hep C be causing some of your problems?  I wonder about other health issues that you may not know about.  Like Matt said, here are other regimens that may treat you better.  Still, I doubt you or your family would be happy with how untreated HIV and AIDS will turn out.  I hope you and your Dr. can come up with a more satisfactory regimen.

[Hellraiser]

"fyi
 
For what it's worth
 
We hung out with Christina (the girl we know that was born with HIV) in San Francisco recently.
 
She takes NO HIV meds AT ALL.  She feels the best she's ever felt in her life and she's totally healthy
 
When she was on the meds,  she was sick as a dog and was in and out of the hospital
 
Her mother is taking the HIV meds and she's depressed and sick all the time and looks WAY old these days
 
Christina looks awesome
 
DO more research
 
Word in the community is that it's the HIV drugs that is turning HIV into AIDS and killing people
 
If it was me,  I wouldn't put 1 more HIV drug into my mouth or body
 
That's just me
 
my 2 cents
 
FROM YOUR BROTHER"

My first thought was...What a prick for planting doubt in my head. I feel like I'm doing the right thing and all of a sudden he comes up with some fucking bullshit like that. I believe the meds work. I'm not a denialist but when i hear shit like that i start second guessing my decisions.
And who the hell is he? He doesn't have HIV so how the hell would he know if he would take meds or not?

I'm going to say this and it may sound harsh, but it's true.  Your brother is ignorant.  He doesn't know the facts and he's trying to relay his second hand experience of someone else's battle with this virus.  The meds are not the root of all evil, but they do have side effects.  Matt brings up a good point that before you decide to forego meds you should try another set of meds with a different/better side effect profile.  More to the point untreated HIV is lethal.  Shall I repeat that for emphasis?  If you do not take meds for your disease in the end it will cause you to die.  I can also guarantee that at some point being off of meds will make you feel much much worse than being on meds ever did.  For me the anemia was the worst part, although I wasn't really able to eat either, but being unable to do anything but lay down and even that made me feel completely exerted.  For months I just laid and waited to die, but slowly and surely the meds propped my immune system up and now I retain a sense of normalcy in my life.

http://www.youtube.com/watch?v=l16YH6xCN4c

^ Meds did this

[mecch]

oh dear what a depressing thread.

[Ann]

Thanks for the responses. and i hope Ann doesn't kick my ass for having another one. She can cancel the first one i had.

No, you need to return to your original account. That's just how it works around here. If you've forgotten your password, go to the main login page (as opposed to using the quick login in the top left corner of any forum page) and click on the "forgot password" link. You'll be sent an email to the account listed in your profile so you can get back in. If the email address in your account is no longer one you use, PM me and I'll get you sorted out.

I agree with the others who say you should try a different combo rather than stop meds.

A forum member died earlier this year - he had something around 90 CD4s, refused to take meds and kept saying how good and healthy he felt. Then he got KS, still refused meds and was dead within a couple months. Don't listen to denialists, even if the denialist happens to be your brother. He may have meant well, but his (misinformed) advice will kill you.

Much of what you're complaining about can be attributed to hep C. Hep C will really do a number on your body - I know, I had it too. I did the interferon/ribaviron therapy for a year and I've been hep C free since 2002. I'm glad to hear you're going to try treatment. Is the trial one of the ones that adds in a new drug in addition to the interferon and ribaviron? The treatment is tough, but if you manage to clear the virus you'll feel much better in the long run.

Congratulations on your baby boy! I'm really happy for you and your wife.

But I still need you to go back to your original account.

[LabRat]

I agree with Ann. The Hep C might be the cause of your symptoms. I too had Hep C and spent all of last year on interferon/ribaviron. I also cleared the virus.  I've since gained weight (always had a problem keeping my weight up) and had an increase in my t-cell count.

I hope that you will be taking one of the new meds for treatment. The success rate is higher and the treatment time is cut in half.  You may experience some bad side effects, but don't give up. It is worth getting rid of Hep C for good.

[BigDaneDogs]

Monty --- all I can provide you is my experience.  I'm 18 years into this "event" in my life.  About 5 years in, like yourself, I was GREAT.  Never sick and really didn't feel sick.  I was undectable, had been for about 4 years and my t-cells were 1050.  Since I had friends whose bodies seemed to manage the HIV without meds, I decided I was going to see if mine would since I was doing so damn good.  End result, my t-cells crashed to 100 and my vl went WELL into the millions.  Like yourself I have AIDS and HCV.  I also have many of the symptoms you describe, so much so I am having to go on SSD.  Over my span of experience with AIDS, I've never known ANYONE who has successfully gone off of meds and stayed ok.  They all ended up in worse shape for having gone off of them.  I ended up resistant to the entire class of NNRTIs even though I had only ever been on one. 

In the end you have to ask yourself, if it doesn't go your way off of meds, does your son deserve to grow up with no daddy?  YOU have control over that point.  I would do as others have suggested and have a serious conversation with your doctor about the effects you are having and try to address them WITHOUT going off of meds.  Best of luck to you and CONGRATS ON YOUR SON!!!!!!

[LabRat]

I forgot to add in my last post two websites that have been very helpful for me. You may already be aware of them:

http://www.hivandhepatitis.com This website offers the latest treatment info for both HIV and Hepatitis. You can sign up for regular email updates.

http://www.medhelp.org There is a hepatitis C forum on the site with a lot of info and knowledgeable members.