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Author Topic: Im so confused,,,about starting treatment!  (Read 6033 times)

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Offline batttyy

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Im so confused,,,about starting treatment!
« on: April 20, 2011, 09:39:21 AM »
I feel so confused and mentally disturbed at the moment. I was diagnosed in 2007 and been having regular checks with my doctor and he advised me not to start treatment. Last weel I went to see him and got updated blood test result. My viral load is now 71,000 and cd4 is 137. My doctor advised me to start medication which im so scared of due to the side effects.

I have been feeling healthy, no serious health issues/symptoms at all. Since my last visit to the doctor, I started having severe headache ; which i thought it is stress related.
My doctor has given me time to think about treatment and have to return to him on 16/05/2011- and decide if i wanna start treatment.

I am just so confiused! Im not sure if taking tretment will make me sick? If I dont start treatment will I die? But I have no symptoms and been living healthy lifestyle( eating healthy, exercising 4 times a week).

Please advice

Offline woodshere

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  • ain't no shame in my game
Re: Im so confused,,,about starting treatment!
« Reply #1 on: April 20, 2011, 10:22:36 AM »
If I dont start treatment will I die?

YES!

HIV medications affect each of us differently.  I have been on the same meds for 5+ years and have no significant side effects.  Many of those who have experienced them do so only for a short while until their bodies adjust.  There are several drugs available talk with your dr about the various options available to you and go with the one that best fits you.  The longer you wait the more difficult it will be and longer it will take to get your cd4 count up.  You are playing a very dangerous game.  Start treatment now, it's a no brainer!

"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline skeebo1969

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Re: Im so confused,,,about starting treatment!
« Reply #2 on: April 20, 2011, 10:58:27 AM »
I am just so confiused! Im not sure if taking tretment will make me sick? If I dont start treatment will I die? But I have no symptoms and been living healthy lifestyle( eating healthy, exercising 4 times a week).

Please advice

IF you do experience side effects from the meds, with the options available today, your doctor and you will be able to choose one that most likely will be free of any physical side effects.  It's ok to be scared, just don't let that fear kill you by keeping you from taking medications important to keep you alive.  Btw, has your doctor put you on anything like Bactrim since your numbers are below 200?  It's usually prescribed when Cd4's go below 200 to keep potential opportunistic infections at bay.
I despise the song Love is in the Air, you should too.

Offline drewm

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Re: Im so confused,,,about starting treatment!
« Reply #3 on: April 20, 2011, 11:09:53 AM »
Having no symptoms and working out will not keep this virus at bay. If you don't start treatment this virus will kill you, it's that simple. Stop being afraid of the potential side effects of the medication, they are NOTHING compared to having AIDS and I know, I was diagnosed with AIDS (full blown) last spring and went on Atripla. There was about a three week period of some nausea, dizziness and insomnia (which was probably caused from worrying about the disease) but in a fairly short amount of time, my CD4 count went from 008 (eight) to 323 and my VL from a half million (500,000) to 30. The drugs WORK, they are the ONLY THING THAT WORK so wringing your hands over the side effects is insane at this point.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline batttyy

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Re: Im so confused,,,about starting treatment!
« Reply #4 on: April 20, 2011, 11:21:41 AM »
Thanks a lot drewm! I really appreciate your honest advice.  I think its been hard for me because none of my family know about my status and i cant talk to anyone except my doctor.

I  would not want this virus to kill me and just have to be strong

Offline batttyy

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Re: Im so confused,,,about starting treatment!
« Reply #5 on: April 20, 2011, 11:34:52 AM »
Thanks Skeebo and woodshere

I really appreciate your advise!

My GP has not started me on any medication yet. He offered me during my last appointment but I was so stressed out after hearing about my viral load and cd4 dropping; therefore I was reluctant to start. Im seeing my gp again on the 16th and will take it from there.

Its just that i 've been worried because i now have this constant headache. Not sure if its leading to fully blown Aids as my cd4 has dropped so much.

Thanks a lot guyz for your support,,,,,,its feels like you are my family now don't know how i would deal with this on my own!

Offline Ann

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Re: Im so confused,,,about starting treatment!
« Reply #6 on: April 20, 2011, 12:05:23 PM »
Hi Batty, welcome to the forums.

You mentioned that you've been monitored regularly and up until now, your doctor said you didn't need meds. What were your previous numbers like in the past year? If this was a sudden drop, it could just be a blip. I've had several over the years. It may be worth it for you to get another blood draw to see if your CD4s have increased. It's not necessarily a good idea to go on one result alone - it's usually trends over time that are the most useful to look at.
Condoms are a girl's best friend

Condom and Lube Info  



"...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 woodshere

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  • ain't no shame in my game
Re: Im so confused,,,about starting treatment!
« Reply #7 on: April 20, 2011, 12:35:10 PM »
Hi Batty, welcome to the forums.

You mentioned that you've been monitored regularly and up until now, your doctor said you didn't need meds. What were your previous numbers like in the past year? If this was a sudden drop, it could just be a blip. I've had several over the years. It may be worth it for you to get another blood draw to see if your CD4s have increased. It's not necessarily a good idea to go on one result alone - it's usually trends over time that are the most useful to look at.

oops, didn't think of that. Definitely a possibility

one of the many reasons you're a moderator and a great one at that!
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline skeebo1969

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Re: Im so confused,,,about starting treatment!
« Reply #8 on: April 20, 2011, 12:40:53 PM »



   Even if it is a blip I would be concerned about the low Cd4 reading, and if he is going to wait his doctor should take a second set of labs immediately in my opinion. 
I despise the song Love is in the Air, you should too.

Offline drewm

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Re: Im so confused,,,about starting treatment!
« Reply #9 on: April 20, 2011, 01:29:53 PM »
Ann and everyone here makes great points and very worthwhile. One lab is usually not enough to jump at. It's important to ask your doctor these questions. Just don't be afraid of the meds that can save your life if, indeed, you need meds.  :)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline newt

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Re: Im so confused,,,about starting treatment!
« Reply #10 on: April 20, 2011, 01:42:29 PM »
Quote
im so scared of due to the side effects

They are generally not that bad at all or even non-existent for most people. If they are horrible you you change combo.

Dying from AIDS is long and painful, and the meds you have to take to deal with pain, infections, cancers etc, are much, much more horrible. Usuallly, HIV meds make you feel and indeed actually become better.

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

Offline buginme2

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Re: Im so confused,,,about starting treatment!
« Reply #11 on: April 20, 2011, 01:53:25 PM »
Why are you concerned about potential side effects when the alternative is certain death?  Your cd4 count is low.  It was time to start medication awhile ago. 
Don't be fancy, just get dancey

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Im so confused,,,about starting treatment!
« Reply #12 on: April 20, 2011, 02:03:30 PM »
It was time to start medication awhile ago. 

We don't know that. He said he's been monitored regularly and up to now, his doctor said he didn't need meds. Until he tells us what his previous few results are like and when they were from, you just can't make that assumption.

I agree that a re-test sooner rather than later is probably in order. And Batty, if you do indeed need the meds and these results are not just a hiccup, don't worry about it. You'll be ok and if the first combo you try isn't a good fit, there are plenty others you can try.

Good luck, hang in there and keep us posted.
Condoms are a girl's best friend

Condom and Lube Info  



"...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 batttyy

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  • Posts: 13
Re: Im so confused,,,about starting treatment!
« Reply #13 on: April 20, 2011, 04:18:43 PM »
Hi All

my pervious test results were as follows:

Sept 2010: cd4- 359; viral 66,000
Dec 2010: cd4- 374; viral  62,000
March 2011- cd4- 137; viral 71,000

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Im so confused,,,about starting treatment!
« Reply #14 on: April 20, 2011, 04:35:36 PM »
Hey Batty, thank you for clarifying your recent lab history.

Yes, it is time you started meds.

I'm getting very, very near that point myself - I've managed fourteen years med-free. I'm not concerned about starting and neither should you be. We'll both be ok. Like I said earlier, if your first combo isn't a good fit, there are others you can try. Rest assured that you'll find something and if most first time accounts are anything to go by, chances are the first combo either of us take will be good.

Hang in there and let us know how it goes when you see your doctor next. And stay in touch in the meantime too, of course!

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...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 Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Im so confused,,,about starting treatment!
« Reply #15 on: April 20, 2011, 04:39:57 PM »
Batty, I only just now looked up where you're posting from (I can only do that because I'm an admin/mod here) and I see you're somewhere in the UK. So am I, kinda-sorta, I'm in the Isle of Man but I go to Liverpool for my hiv healthcare. I was just there yesterday in fact. (the Royal, if you're from Merseyside)

I bring this up because the first-line treatments in the UK are very good. (I've chosen Reyataz boosted with Norvir, plus Truvada) A doctor in the UK won't tell you that you need to go on meds when you don't really need them. I should have checked your approximate location earlier today.

If you want more information about the various drugs, see the drug pages here at AIDSmeds.
« Last Edit: April 20, 2011, 04:42:15 PM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...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 Sweet_C

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  • Posts: 171
Re: Im so confused,,,about starting treatment!
« Reply #16 on: April 21, 2011, 10:12:43 PM »
Just wanted to jump on the "don't be afraid of side effects" bandwagon.  I started meds over two years ago and have had minimimal side effects.  I was one who chose to start treatment very early--just a few months after seroconverting.  I first started on Isentress and Truvada and had no side effects whatsoever.  None.  Zip.  I have felt more side effects from a Tylenol than from that combo.

I switched to another combo after I got pregnant to one that had a longer track record with respect to birth defects.  I was on Combivir, Reyataz, and Norvir.  I thought I'd have awful side effects  because of the AZT in Combivir, but I was happy to find that my side effects were minimal and weren't caused by the Combivir.  I found that I would have loose stools when I took the Norvir on an empty stomach, but that was easily remedied.

Also, you will probably be able to manage the side effects better because you have a healthy lifestyle and exercise.  I understand that makes a difference as well.


Finally, like other people have said, even if you do experience bad side effects from one combo, doctors can usually find one that that you can tolerate well.  My husband had terrible side effects from Atripla.  He is one that has bad reactions to a lot of drugs, and not just ones for HIV.  EHis doctor was able to find a combo that he can tolerate with no side effects.
Tested positive on September 11, 2008

Offline batttyy

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  • Posts: 13
Re: Im so confused,,,about starting treatment!
« Reply #17 on: May 11, 2011, 09:00:52 AM »
Thanks to you all for your advise. I went to see my doctor today and I am starting the Atripla tonight!

Thanks for the support.

Offline woodshere

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  • ain't no shame in my game
Re: Im so confused,,,about starting treatment!
« Reply #18 on: May 11, 2011, 10:50:57 AM »
Good for you!
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline drewm

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Re: Im so confused,,,about starting treatment!
« Reply #19 on: May 11, 2011, 10:57:12 AM »
Thanks to you all for your advise. I went to see my doctor today and I am starting the Atripla tonight!

Thanks for the support.

YAY!!! Keep us posted!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline batttyy

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  • Posts: 13
Re: Im so confused,,,about starting treatment!
« Reply #20 on: May 13, 2011, 09:41:01 AM »
I  started the Atripla on wednesday (11th/05). No side effects so far. All good

Offline leomoore

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Re: Im so confused,,,about starting treatment!
« Reply #21 on: May 18, 2011, 04:02:57 PM »
I might be overstepping my bounds, but it has been documented for some time now, that delaying treatment is a bad idea.  The earlier treatment starts the better the long term prospects are.  Recently, a study showed that so called "drug holidays" are a bad idea that tends to lead to the virus developing resistance to current drugs faster than they would if treatment is maintained.  This means your doctor does not have a lot of experience treating HIV or is not keeping up with the literature.  It would make me think about looking for a doctor with more experience with HIV or at least demonstrated knowledge of latest research.  Do not put doctors on some sort of pedestal.  They are human and will sometimes make an error.  It is one of a doctor's greatest fears that a mistake will occur, something overlooked, or a bad judgment is made.

I was diagnosed in 1995.  About three years earlier, I had gone to a doctor who is gay with two gay partners in the practise and three straight partners.  Many patients in this practise are also gay.  In a large city such as this one, this meant they would likely have a good deal of experience treating people with HIV.  That has proved to be a key factor for me.  The first drugs other than AZT were just becoming available, but the history was not well known.  Since my time frame of exposure and conversion was known in my case, we knew I was only a year post-infection being diagnosed.  In October of 1993, I was tested and it was negative.  I had broken up with a boyfriend several months earlier and had not had sex since then (I am one of those who withdraws to lick my wounds) so it was a pretty good bet that my negative result was valid.  In December, I had two encounters that carried potential exposure, one involved a torn condom and the other was sheer stupidity and drunkenness on New Years Eve.  In February of 1994, I came down with the most awful case of what I thought was flu I ever experienced, then developed really bad tonsillitis and a strange rash on my chest.  I was out of town and went to a doctor nearby who decided I had scarlet fever, which is ordinarily a childhood disease.

That is how I was able to isolate the period of time I became infected and I knew the ex was negative as well plus he and I always used condoms.  Anyway, I opted to wait for a while on starting treatment.  My CD4 was just over 300 and my viral load was below 20,000.  A year later, things had changed both on the treatment front and on my lab results.  My doctor and I discussed options.  I decided that I really wanted to be aggressive, so that is what we did.  Since then, I have changed cocktails three times because over time everyone will experience drug resistance.  This can happen regardless of how conscientious you are with your meds.  Some people engage in magical thinking and are not consistent with taking their meds such as skipping days or deciding not to take their medications while on holiday, etc.  These are supremely bad practises.  My CD4 count has remained in the normal range, and my viral load is undetectable.  Short of a cure, that is what you want to achieve if it is possible.

Everyone who responded has given you the right information.  Yes, without treatment, you almost certainly die and not easily.  There are a relative handful of people who have specific genetic mutations that appear to make them either immune or able to keep the virus in stalemate.  If you have not read about it, look up the Berlin Patient who is the only known person to have been cured.  It is remarkably hopeful and extraordinary how it came about.  He was an American living in Berlin.  He can thank what some Americans call in a ridiculing manner, socialised medicine.

I wish you well, and offer one last rule to follow.  Do not let fear control your choices.  Fear of medication is harmful.  Fear of people knowing is harmful.  Fear of rejection is overwhelmingly harmful.  As Franklin Roosevelt said, "All we have to fear is fear itself".  Wise words. :-*
« Last Edit: May 18, 2011, 04:08:02 PM by leomoore »

Offline steps

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Re: Im so confused,,,about starting treatment!
« Reply #22 on: May 21, 2011, 07:43:46 PM »
I have been on several meds yes some do by all means have side effects those effect are in some degree relative to your body. however I am presently on Isentress which as so far over the past  5 months cause absolutely on side effects one pill in the morning 12 hours later one fill with truvada.

something you might also consider is adding  other thing which had had a huge better feeling and results in healing other things all of which is available in stores until this has caused a bit of a desire from the clinic i go to about my next more advanced blood work becuase of the increase of t-cell by over 150 points
Only after doing this with a more complete study would it be ethical to say what they are but they are all immune building.
You are too low to not be on meds 137 is too low and meds are needed look over them with your doctor as well as here in research studies on them this will help you in spotting any possible side effects and again not everyone has bad side effect i know over 20 other people taking meds and most do not have overweming side effects bear in mind each person if different.
when doing a med take careful attention to when you take them and how you feel afterwards, side effect next to never happen in the first few days or even weeks.
they are of great help in lowering the hiv.

if you know other people personally that do take them chat with them.

another note the manufacture of isentress with pay your co pay if you have private insurance leaving you no out of pocket cost you can find the coupon for this by going to isentress web site and printing it out this does not mean for you to just jump in and start taking it it is only a reference shoud you end up being on it there maybe other manufactures for other meds that do the same.
good luck

Offline batttyy

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Re: Im so confused,,,about starting treatment!
« Reply #23 on: May 23, 2011, 05:36:11 PM »
Hi everyone

its been a week since I started taking Atripla. I felt unwell for 1-2 days. But I am well now, no side effects.

Thanks to you all for you support . I feel like you are all my  family now as I am free to talk about all my worries .
thanks

Offline hope_for_a_cure

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Re: Im so confused,,,about starting treatment!
« Reply #24 on: May 23, 2011, 05:47:38 PM »
Hi everyone

its been a week since I started taking Atripla. I felt unwell for 1-2 days. But I am well now, no side effects.

Sounds like you are off to a good start on it.  Have you had any wild Atripla dreams yet?

Offline batttyy

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Re: Im so confused,,,about starting treatment!
« Reply #25 on: May 23, 2011, 06:29:24 PM »
Hi Hope for Cure,

I had minor side effects for about 2 days: wild dreams and feeling a bit drunk.

I seem to be feeling better now ; have mor energy and back to my gym routine.

All good

thanks

 


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