POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: VariGam on September 22, 2011, 09:22:55 pm
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Hi,
First of all I wanted to say that I've been reading these forums quite a bit over the past few weeks. They have given me a great deal of information and are an invaluable resource. I guess I should start with my story:
I was infected approximately 5.5 weeks ago after a night of heavy drinking. I am not sure what happened as I blacked out. I called a Female Sex Worker to my hotel room, but wasn't aware of what took place. In the morning I woke up and there was a condom wrapper on the dresser. I was aware of PeP, but for some reason I didn't take it. (I guess because there was a condom wrapper) I thought about it, but for some idiotic reason decided against it.
The fact that I was too lazy, stupid, and ignorant to get PeP will haunt me for the rest of my life. I don't know if it would have 100% been effective, but the published rates of success are very high. Not only did I make the terrible mistake of being irresponsible with drinking and with sex, but I had a chance to reverse everything and I failed. I can only blame myself for all of these horrible mistakes. To say the least the PeP banner on this site is haunting me : (
So about a week later I start worrying because of flu like symptoms, mouth sores etc. A few weeks go by and I take a Home Access Test and test positive. I went to my Dr. and now finally have the results of a confirmed Western Blot test. I had a bunch of lab work done yesterday, and should have my Cd4 count by tomorrow (says the lab). I'm HIV+ and its all my fault. I hate myself.
It only takes once. I was in a very long-term relationship (10 years) and before that was in college and always practiced safe sex. I've only been with 5 women in my life, and this is the first time I had called a sex worker. IT DOESNT MATTER THOUGH. I WAS AN IDIOT. Its my fault for being a drunk stupid moron, I just won't be able to get over the fact that I could have prevented all this.
Waking up is the hardest. This is all I think about over the course of the day, and Im having trouble sleeping. I have an appointment with a Psychiatrist next week and I've spoken with a few counselors. I already had depression issues BEFORE this, and now I'm a complete mess. I've always been VERY hard on my self and super competitive. When I make mistakes I beat myself up lots. This is just a living nightmare for me and its final. There is no coming back. I feel like a prisoner in my own mind. I am not ignorant to the virus and am trying to inform myself as best as possible. I am well aware that this isn't an immediate death sentence. Mentally I am having difficulty coming to grips with self-loathing and hatred and I feel like I'm going insane. I am not going to kill myself but I do fantasize about it many times daily.
To top everything off, I have no insurance. I am self-employed and have done well financially. However, after my breakup I was getting on new insurance so there was a 2-3 month lapse period where I did not have any. Of course during this lapse I was infected! What a complete nightmare. I have been to ASO in the area but I don't qualify for any government/state funding because of my income level. I will have to pay for everything out of pocket for at least 6-7 months. I can get on a federal high-risk pool insurance but you have to wait until you are uninsured at least 6 months, and then the process takes a while. Everything is so expensive.
I saw my ID Doc for the first time a few days ago. He was the first one I could get into, so I was taking a flyer with no references. I just wanted to speak with someone. To say the least I was not happy. He did not seem very knowledgeable and I felt like he was just reading text that he read in a book/online. Suffice to say I won't be going back.
I've always had a weak immune system. My entire life Ive been sick often. Pneumonia as a kid, many other issues. A couple years ago I was feeling very fatigued so I had a battery of tests done. I remember seeing my Cd4 count was around 620 when I was negative...To my knowledge this is on the low end and I'm very scared of what this virus is going to do to me.
I had thrush in my mouth so my ID Dr/ prescribed me Fluconazole. Ok, no big deal. Then he tells me I'm going to also have to take Bactrim! WTF, I've been infected for 5.5 weeks and I'm already taking bactrim?!! He said he wasn't sure if the thrush was due to actue or chronic infection yet. But he took a listen to my chest and decided I was at risk for PCP so he gave me bactrim. How the hell is this possible so soon? Is my immune system that weak? He said if he had to guess my CD4 count would be 400 or under...not sure how he can just spout that, I guess its based on my symptoms.
Also, he didn't believe I had been infected so recently. I had a physical and a full STD panel with HIV test in late Sept/Early August of this year. Negative for everything. I will bring that to him the next time I show up.
The hits keep coming. I am anxious to see my CD4 count tomorrow. Not very optimistic and to be honest its hard to think positive about the situation I'm in. I feel like the virus impacts everyone different, and most likely I will have to instantly start meds. Ok, I can handle that as they will prolong my life. But the worst part is that its ALL MY FAULT. I am having trouble dealing with this.
There are also many issues regarding my job that I will address in a later post. I feel like most people are more resiliant than I am, and they can fight through something like this easier. I have OCD and depression and I will never ever forgive myself for these mistakes.
I know this is a super long and ranty post but I need to vent. For anyone who actually read it all, thanks for listening.
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Hi Varigam,
My first thoughts to tell you are breathe, breathe and step back for a moment. I tested positive 4 months ago and had ALL the same feelings as you. My mind was racing like a runaway train full of catastrophic what if's, mornings were full of panic and the guilt and shame were totally consuming. I was not expecting it ( diagnosis of poz) and it felt like getting trampled by a herd of horses. People on this forum assured me and one line repeated over and over was "hang in there, it gets better" . One of the community Klouny said "just give it one month and you'll see, it gets better..." I was in such a state I didn't believe them. I can tell you I was wrong. The mind has a remarkable capacity to sort, rationalize and cope - four months later I am MUCH better. Hang in there my new friend, please.
I am still really struggling with the guilt of "getting it". My therapist is really good at pointing out a few things:
1. None of us intended to get the virus. Many, many others have done the same as us and luck was on their side; this one time it was not one ours. It is random and a fluke. The "punishment" is completely disproportionate to the "crime"
2. I found that I am much easier on other persons mistakes/frailties than my own...how about some self-compassion?
3. We got a lemon...how do we make it a lemonade?
Lots of people have been this road before us and are doing just fine; some say even improved! I am sure others will chime in, but in the meantime, keep talking to us and breathe...the sun will continue to set and rise just as the cosmos unfolds...
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Hey there Vari,
Welcome and hugs...
Dont beat yourself up reliving that night or how you didn't seek PEP, etc... at this point it is counterproductive and will not help anything. You need to try to forgive yourself so that you can move on with your life. Afterall just because you have HIV does not mean you cannot live a normal long life ;) You are not a bad or diminished person so don't even go there. Stop with the self loathing, you are a wonderful person just as you were before, the only thing that changed is you caught a virus, that is all. You will live a normal healthy life (yes healthy, even with HIV). It is somewhat normal to be having these thoughts at first, but please don't let it consume you. I can tell you firsthand that everything gets better, I can promise you that.
I already don't like your doc, he shouldn't be saying that you are in need of Bactrim without first knowing your CD4 count, also I don't think you need Bactrim unless your CD4 is below 200. I don't know, something just sounds "off" with what he is saying. Perhaps you just find another doc. No doctor can tell by looking at you OR listening to your chest what your CD4 count is , and he shouldn't be guessing on it either. If you did already have Thrush and your CD4's were below 200 is it possible that you could have been infected earlier than 5 weeks? Anyways, this is all really conjecture until we get your counts back tomorrow, right?
Try to get a good nights sleep and try not to freak out. You know it is entirely possible that your doctor is wrong, and that your CD4's are OK and your VL is manageable and you may not have to go on meds for quite sometime. We wont know till we get those labs.
-Will
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Hi Vari,
I’m sorry to hear about your diagnosis but I’m glad you’ve found your way here.
Welcome. :)
Firstly, let me start by saying that you’re going through a perfectly ‘normal’ reaction to the news. It is something I went through, something nearly everyone on these forums went through, something practically everyone living with HIV has experienced. So you’re definitely not alone.
Also know that these overwhelming emotions are just that, once the storm passes and the dust settles, once clarity returns, you will realise that you really ARE and always will be the same person you’ve always been and nothing really has changed (and nor is there reason for anything to) except for the fact that you now have a chronic medical condition which will require some (very manageable) lifestyle adjustments.
I can totally understand and relate to your feeling of having let yourself down and the self-loathing you’re putting yourself through. Such thoughts can start to make rational sense in your mind, particularly, if you had high expectations of yourself and view your diagnosis as a failure of sorts- at least that was the case with me. However, I can assure you today, more than 7 months since that day, that such thoughts/feelings and the accompanying suicidal ideation that I experienced were most irrational and inward looking and induced by trauma and nothing else.
The diagnosis is a shock, it is, and I empathise- but it’s not the end of the world. Many many others have gone through it and so will you. The truth is that no one on this planet willingly got infected, but at the end of the day we’re all human and we all do make mistakes. It’s just that some of us are stuck with mistakes that have bigger consequences. Once you forgive yourself for being human and accept that some things in life are beyond our total control- I can guarantee you that you’ll be in a much better place.
And every cloud has a silver lining. Around 6 months ago when my mental state was worse than what yours appears to be today, I spoke to a Long Termer with HIV and he told me this (not exact words): “Although no one chooses to get infected, the diagnosis will give you insights into your life that you wouldn’t have had otherwise. That can be quite empowering if you look at it that way. The sooner you realise that you have a treatable infection and not much else has changed, the easier it will be for you to get on with your life. Today there is no reason for you to alter any of your plans or dreams because of this. You’re likely to live just as long as any one else as long as you box ‘clever’- which for the most part means having a positive outlook.”
Hugs and hope to get to know you better on the forums. :)
PS- I found therapy with a mental health professional extremely beneficial in making sense of things.
PPS-I agree with what Will said about your doctor.
PPPS- What Cojo said is true as well. Give it a month you'll be in a much different place, give it 3 more months and things will be vastly improved. And 6 months from today you'll have your old self back. Serious. Hang in there buddy :)
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Hi Vari,
Sorry to hear about your situation.
I am going through ALL of the same emotions. It is a little over three weeks since my diagnosis. I too have been beating myself up about how i have got myself into this situation.
All I can say is that you have come to the right place for practical advice and awsome support. I totally understand the suicidal thoughts you had. I actually went out and bought off the shelf pain killers and wine to 'end it'. But then decided that my family would be worse off without me.
What has definately helped me has been making plans and planning ahead. At first i couldn't even think about what i would be doing in a months time and was reluctant to agree to social events and such. Now i realise that having things to look forward to at the weekend or in a months time has helped me.
And doing normal things such as going to the gym or swimming has helped too.
It does get easier with time.
So take all of the wise advise from forum members and hang in there...
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Hi Vari. I´m so sorry to know you are infected and feel wrong but as other told you, you Will find a great help here...
In my case, I´ve for only one exposition and the most ironic is that I used condom (as always...) but in a wrong way, and I got infected, something I was not able to understand and that costs me believe today, but no way, it is and won´t change... This has happened around 6 months ago...
And well, it is not life end as you might imagine right now, of course it is a terrible new that will change your life, but maybe not in the way you are thinking now... It is not the end of all, but just the beginning of another great moments... You won´t die and you´ll see that very soon you´ll be good. It depends of you as Spacebar said... Your animic state and the way you manage your body (food, sleeping...) takes now much more emphasis.... but at the end it nothing different that living like anyone (with or without HIV) should do it to keep healthily.
It is good to be behind a medical supervision, and you know that. Don´t be scare for your first CD4 and VL results, if your infection is recent, number can be very high but will decrease soon. Your doc will explain you this very well, don´t hesitate to ask him everything you need to know, it is his function to answer you. If you don´t have a good relation or feel confortable, then it is better to change soon...
And if you need medics, you see here people that used them for years and years, that are very healthily that work, travel, make sport and have a completely normal life.
Of course, for now you should be responsible and use condom in all your sexual relations, but you know that...
Another important advise I can give you is to avoid disclosing to everybody. At the beginning, in my case, I wanted to tell it to everybody... But unfortunately you´ll find people that don´t understand well what is HIV and can have a strange reaction, not because they are bad people but because they don´t know what is HIV... You don´t need to deal with this now. It is important tell it to people you entirely trust, and don´t forget that when you tell it, there is no way to go back... It can help a lot to disclose to a few important people for you. In my case I only have 3 friends that know, and my wife, of course...
Try to occupy your mind, do things, it avoid thinking and make feel good... I send you my best wishes and hope you will be better soon... Take care of you...
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Hi VG,
Welcome. Because of a project I'm working on today, my note will be brief.
" I have OCD and depression and I will never ever forgive myself for these mistakes."
I picked up on this part of your post and want to encourage you to try to envision changing it, over time, to something like this
"Yep, I have OCD, but I'm dealing with it. Sometimes, I get depressed, but I'm learning to deal with it and it's happening less and less. And the best thing I've learned how to do is to forgive myself for any mistakes I've made. I think that's had a powerful effect on how I feel and helped back down the depression. "
Sorry you're here, but glad you found your way here quickly. You're going to be fine -- just try to focus -- I know the OCD makes that a beast of a challenge, but if you have to, once those thoughts get cranked up out of control shout the word STOP out loud and loudly. Then, go take a walk, or do the dishes, or clean up the sidewalk. Break the cycle - - become an expert at breaking the cycle. Your mind will do more of a number on your than any virus.
Em
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Dwelling in the past is not good. It will fuck up your present and future. Stop worrying about what you could have done. It will get better. You're t he same person you were before. Don't let this virus change who you are. Sorry that you will have to deal with this forever, but you're not alone with this.
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Dang you went through it all incredibly fast, your head must be spinning. Welcome to the forums.
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Thank you everyone for your responses and support. Finally got some test results today. Poor #s as expected with my weak immune system. Keep in mind I've been infected for just under 7 weeks.
Absolute CD4 430
Percent CD4 32%
Absolute CD8 497
Percent CD8 37%
CD4/CD8 Ratio .86
I will want to start treatment immediately with these numbers. Unfortunately for me I don't have insurance. I also don't qualify for any state or government assistance. Ok, I'll just order Atripla generic from Canada or India. Oh thats right...I can't take Atripla because the Sustiva will make me insane. I am in a very very very bad state of mind and was already depressed before infection. I don't want to make things worse with Sustiva.
So, paying a couple grand per month for meds seems like my only option. (unless there are other generic options available online that I'm not aware of) That or drive myself clinically insane/kill myself. Sure seems like I can live a "normal" life like everyone is telling me.
Personally, its impossible to not dwell on the past. The OCD literally makes it impossible. I blacked out and didn't know what took place in my incident. There was a risk, I knew this because I planned on getting tested. I KNEW about PEP and could have easily saved myself from this terrible miserable deadly incurable virus. Instead I was too lazy to go to the clinic and take a pill for a month. I ONLY HAVE MYSELF TO BLAME. That is what hurts most. ITS ALL MY FAULT AND I COULD HAVE PREVENTED IT.
As someone said, my mind is going to be my worst enemy. That is what I'm most scared about. I'm resigned to the fact that I will never be completely "healthy" physically. But having to be a prisoner in my own head mentally is literally driving me insane. I don't want to live with this torture that I'm putting myself through. I can't stop. This is a permanent problem and there is no solution
I'm seeing a therapist and taking anti-depressants and anti-anxiety meds. TBH, there isn't much relief. I will never be able to forgive myself for this mistake.
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...from this terrible miserable deadly incurable virus.
Now, bear in mind one thing. Is it cool to have HIV? No, it's not. But it will be only terrible, miserable and deadly if you want to. There's treatment, and you can live a long, healthy and happy life, don't doubt it. You're right about the "incurable" part, but hey, for now. Research is going strong and you never know. Don't you want to be alive when the cure comes? Don't you want to be able to say you won against this virus? I sure do.
As someone said, my mind is going to be my worst enemy. That is what I'm most scared about. I'm resigned to the fact that I will never be completely "healthy" physically. But having to be a prisoner in my own head mentally is literally driving me insane. I don't want to live with this torture that I'm putting myself through. I can't stop. This is a permanent problem and there is no solution
I'm seeing a therapist and taking anti-depressants and anti-anxiety meds. TBH, there isn't much relief. I will never be able to forgive myself for this mistake.
It's not a permanent problem. Give it some time. Things WILL get better. Try to do things you like, so you think less about it. And about not forgiving yourself... look, you're just human. And as a human, like the other 6, 7 billion around, you screw up. We all do. The problem is that sometimes we pay the price for some mistakes.
Some people drink and drive, crash their car, and if they survive the accident, maybe they can never walk again. Some people smoke or drink heavily all their lives and then have to fight cancer for years and years. Some people don't look at both sides before crossing the road and then a bus runs over them.
Stupid mistakes? Sure. Your mistake was having unprotected sex. Oh really? Who hasn't done that some time in their lives? Everyone does, it feels better. But unlike most people, you got HIV in return. So have we. And none of us deserve it. But that's life, and we gotta deal with the cards we get on our hands. Sometimes we get shitty cards, but we never know what may come later. And life always surprises us.
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I will never be able to forgive myself for this mistake.
That's the core of the issue. You are going to have to make that a priority. You have to forgive yourself before you can seriously, and with real commitment, fight this for the rest of your life.
We all make mistakes. We all do stupid shit in the name of love, lust, boredom, booze, despair, whatever.
You are no worse or better than anyone else. And you are worthy of forgiveness - even from yourself.
Please make that a priority.
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Thank you everyone for your responses and support. Finally got some test results today. Poor #s as expected with my weak immune system. Keep in mind I've been infected for just under 7 weeks.
Absolute CD4 430
Percent CD4 32%
Absolute CD8 497
Percent CD8 37%
CD4/CD8 Ratio .86
I will want to start treatment immediately with these numbers. Unfortunately for me I don't have insurance. I also don't qualify for any state or government assistance. Ok, I'll just order Atripla generic from Canada or India. Oh thats right...I can't take Atripla because the Sustiva will make me insane. I am in a very very very bad state of mind and was already depressed before infection. I don't want to make things worse with Sustiva.
So, paying a couple grand per month for meds seems like my only option. (unless there are other generic options available online that I'm not aware of) That or drive myself clinically insane/kill myself. Sure seems like I can live a "normal" life like everyone is telling me.
Personally, its impossible to not dwell on the past. The OCD literally makes it impossible. I blacked out and didn't know what took place in my incident. There was a risk, I knew this because I planned on getting tested. I KNEW about PEP and could have easily saved myself from this terrible miserable deadly incurable virus. Instead I was too lazy to go to the clinic and take a pill for a month. I ONLY HAVE MYSELF TO BLAME. That is what hurts most. ITS ALL MY FAULT AND I COULD HAVE PREVENTED IT.
As someone said, my mind is going to be my worst enemy. That is what I'm most scared about. I'm resigned to the fact that I will never be completely "healthy" physically. But having to be a prisoner in my own head mentally is literally driving me insane. I don't want to live with this torture that I'm putting myself through. I can't stop. This is a permanent problem and there is no solution
I'm seeing a therapist and taking anti-depressants and anti-anxiety meds. TBH, there isn't much relief. I will never be able to forgive myself for this mistake.
I'm not in any position to give you advice, because, just like you, I'm still battling with depression issues derived for my auto-blame (I'm too proud to accept my mistake of being infected) along with other issues too (including the fact that I don't want to come out soon, due to the stigma on the gay community), but there is something I can tell you:
Every morning you wake up, don't see it as another with an incurable disease, just see it as another opportunity to do something for you, or your beloved ones. You (and me) MUST fight this thing, both in your mind and your body.
Try to contact some ASOs on your area (I assume you are in the US) and keep asking about programs or ways to get your meds, there is a list of ASOs here on AidsMeds wich may help you
Stupid mistakes? Sure. Your mistake was having unprotected sex. Oh really? Who hasn't done that some time in their lives? Everyone does, it feels better. But unlike most people, you got HIV in return. So have we. And none of us deserve it. But that's life, and we gotta deal with the cards we get on our hands. Sometimes we get shitty cards, but we never know what may come later. And life always surprises us.
This is true, You never know about the future. For example, someone very close to me was diagnosed recently, if I decided to give up, or have success on my suicide try after my Dx 3 years ago, I won't be helping him now, and helping my family to deal with this for second time, and I'm glad to still be here.
Time maybe will give us some answers, and that's what you need now: give yourself time. Hang on buddy, we will be here to support you.
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Vari, those aren't "poor" numbers at all. In fact, your CD4% is fantastic. Do you know what your viral load is yet?
You're putting the cart before the horse in assuming you need treatment right away. With your good CD4 counts, you may be able to go for some time yet without treatment. Numbers typically improve within six months or so following initial infection, without treatment.
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Hey Vari,
You are being far to harsh on yourself. All of us are human and human beings make mistakes. You must forgive yourself for being human.
Right now the biggest block appears to be the one in your mind. I promise you things will get SIGNIFICANTLY better once that clears- if and when you let it. It can be a winded road getting there but I have faith you will.
Cheers.
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Hi VG,
Please check your PMs -- I think you're at the level where you can now receive them.
Em
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I will want to start treatment immediately with these numbers. Unfortunately for me I don't have insurance. I also don't qualify for any state or government assistance. Ok, I'll just order Atripla generic from Canada or India. Oh thats right...I can't take Atripla because the Sustiva will make me insane. I am in a very very very bad state of mind and was already depressed before infection. I don't want to make things worse with Sustiva.
So, paying a couple grand per month for meds seems like my only option. (unless there are other generic options available online that I'm not aware of) That or drive myself clinically insane/kill myself. Sure seems like I can live a "normal" life like everyone is telling me.
You are dealing with a lot just now.
But perhaps we can help you take some issues off the plate, one at a time.
Your post says you are not eligible for any government assistance because you make too much money and you have been without insurance too long to be able to elect COBRA insurance from your prior employer.
1) You have two months to elect COBRA -- if it hasn't yet been two months you might want to check into that more carefully
2) To be eligible for the federal programs you need to have been uninsured for 6 months. If you have been without insurance for too long to get COBRA, you have less than 4 months to go.
3) Your numbers are by no means awful. Current guidelines suggest that people start if their CD4 count is under 500, but it is by no means dire to wait a month and get another test. Many people have a dip in CD4 count right after seroconversion. Your second test may well show that you can wait a while to go on treatment. And with a tcell count of 430, waiting a month to get new results will not seriously endanger you and will put you a month closer to being able to get insurance.
I will want to start treatment immediately with these numbers. Unfortunately for me I don't have insurance. I also don't qualify for any state or government assistance. Ok, I'll just order Atripla generic from Canada or India. Oh thats right...I can't take Atripla because the Sustiva will make me insane. I am in a very very very bad state of mind and was already depressed before infection. I don't want to make things worse with Sustiva.
4) There are lots of good options to Atripla, which are in many ways easier to take. Most are available in generic forms overseas. When it is time to start tell your doctor that, because of your history of depression, you want to stay away from drugs that contain sustiva (including Atripla).
There are options for you.
Be well (oh, and wel_come too)
Assurbanipal
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You are dealing with a lot just now.
But perhaps we can help you take some issues off the plate, one at a time.
Your post says you are not eligible for any government assistance because you make too much money and you have been without insurance too long to be able to elect COBRA insurance from your prior employer.
1) You have two months to elect COBRA -- if it hasn't yet been two months you might want to check into that more carefully
2) To be eligible for the federal programs you need to have been uninsured for 6 months. If you have been without insurance for too long to get COBRA, you have less than 4 months to go.
3) Your numbers are by no means awful. Current guidelines suggest that people start if their CD4 count is under 500, but it is by no means dire to wait a month and get another test. Many people have a dip in CD4 count right after seroconversion. Your second test may well show that you can wait a while to go on treatment. And with a tcell count of 430, waiting a month to get new results will not seriously endanger you and will put you a month closer to being able to get insurance.
4) There are lots of good options to Atripla, which are in many ways easier to take. Most are available in generic forms overseas. When it is time to start tell your doctor that, because of your history of depression, you want to stay away from drugs that contain sustiva (including Atripla).
There are options for you.
Be well (oh, and wel_come too)
Assurbanipal
I appreciate the post and suggestions. However there arent many options for me :(. Ill address your points:
1) Im self-employed so not eligible for COBRA.
3) I cant afford to get another set of labs. My last set cost me $2300! I tried going to my ASO to see if I could go to the free clinic there. NOPE! Based on my income they wont see me! WTF is going on? So I ask my options and the social worker just stares at me blankly and says "you have to pay out of pocket" I cant afford 5k/month in medical expenses!
4)Yes, I will buy generic online if I can find my prescriptions.
I dont want to whine and complain, but for me personally, I will not be able to.forgive myself. Most people are stronger and able to move on. Im not one of those people. I dont want to deal with being trapped in this prision in my mind. I would like to write some more about why Im so devastated...
As mentioned in an earlier post I have OCD and depression. This OCD had somehow always made me paranoid about contracting HIV, it was actually my worst fear. All this was completely irrational because before this incident I only had intercourse with two people in my entire life. My longtime giirlfriend of 10 years and then another girl I met on vacation 3 years ago. I cheated on the woman I loved most, and it hurt bad.
I used a condom, but I had been drinking, so after the incident my OCD took over. I began developing minor flu-like symptoms and I had absolutely convinced myself I was HIV+. I posted on the Am I forum, did a bunch of reading/obsessing/crying and was 100% convinced I had HIV. I finally went to the Dr and obviously tested negative. The day he called me and told me I was negative was the greatest day of my life. (I was never at risk and its absurd, but my OCD was overwhelming) I always told myself if I was ever at ANY risk I would take PeP, just to calm my OCD.
Well 3 years go by and memories fade I guess. My girlfriend and I breakup and I find myself blackout drunk calling a female sex worker. This was the third woman I have been with in my life. I know that is irrelevant, but it hurts. I wake up in the morning with no clue what happened, but there was a condom wrapper on the dresser. I say to myself that there is no risk, even though I had no fucking clue what happened.
My past experience should have saved me since I knew about PeP. Two days after the incident I got out a piece of paper and wrote down what I could remember from that night. It was such an obvious situation to get PeP in my case, but I was too lazy/stupid/ignorant and in denial! After everything I put myself through before, I now have to deal with my worst nightmare!!!!!
Its my worst nightmare because its all my fault and I am 100% responsible and could have changed everything. I dont believe in fate, I altered the course of my life in a very bad way and it is PERMANENT. This is never going away. I will prematurely (according to US studies with my #s around 20 years earlier than normal) die. My quality of life will decrease significantly. I am well aware people can live happy lives with HIV. Unfortunately with what I put myself through I dont think Im capable.
I am going to give everything a try. Im a very logical/realistic person. I wont do anything to myself that isnt well thought out. I will try medications, more therapy etc. But if suicide is a better alternative than living as a prisioner in my own head, I guess I will have to do that. I DONT want to die or kill myself. I just hope I can fix myself to the point where its not the best opton for me.
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I will prematurely (according to US studies with my #s around 20 years earlier than normal) die.
sorry, but that's just wrong!
http://www.aidsmeds.com/articles/hiv_life_exectancy_survival_1667_14989.shtml
The average life expectancy for a 20-year-old who remains HIV negative, at least in industrialized nations, is an additional 60 years—with death occurring, on average, at the age of 80.
HIV-positive people who didn't start ARV treatment until their CD4s dropped to 100 were expected to live 10 fewer years than people who started therapy when their CD4s were above 200. The authors also determined that HIV-positive people with a history of injection drug use were expected to live 10 fewer years than those who never used injection drugs.
Personally, I've already lived about 20 yrs longer than I should have and that was with some of those first line meds way back in the 90s. You haven't even hit the 200 AIDS mark yet, nor do you even have "bad" numbers yet, nor have you started on today's improved meds. So please, make your plan appropriately because you'll be living to see 80 or 90 (of course that's all dependent on your family genetics too. ;) )
edited to add: btw, the article I quoted is from 08, so you need to check out what US studies you've been reading. make sure they are fairly current because the science of HIV has been changing a lot over the last 20-30 yrs)
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Hi Vari, Can I suggest you see a therapist and talk about all of this.
I was in a state (just as you seem to be) when i was diagnosed and sessions with a mental health professional helped me a lot.
Take care.
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Spacebar - just an fyi - in reply #9 VG states he's seeing a therapist.
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I'm sorry I missed the part where you stated you were previously self-employed; I thought that was only your current status (I should have read more carefully).
Your experience with the labs is unfortunately not atypical.
One of the reasons to have health insurance is that, in today's totally screwed up US healthcare system, insurance acts as a discount card. Labs are among the most heavily discounted services out there; often people without insurance are charged as much as 5 times what the insurance company pays. And then, patients with insurance are only charged a small fraction of the insurer cost.
Unfortunately, labs, as well as drugs, are an essential part of living a healthy life with HIV. Especially when you are newly infected, labs can be more important than drugs, since they tell you when to start. Once you have started the drugs labs tell you whether the drugs are working and whether they are harming your liver and kidneys.
Insurance is not cheap, it sounds like you have carried it previously, but you are usually looking in the hundreds of dollars per month, rather than the thousands of dollars per month, range.
If Obama doesn't lose the election, and healthcare reform is not repealed, health insurance will become much easier to acquire after 2014. But, in the meantime, the Administration has already set up a website to help you look for insurance under the provisions of the law already in effect. In case you have not yet seen it, there is an insurance selector tool at the healthcare.gov website. http://finder.healthcare.gov/
Finally, yes it is true that there are some studies that show dramatically shorter life expectancies for people with HIV. But those studies include all those who have HIV, including those who have not been diagnosed and will find out when they are already very sick. By getting tested, and resolving to start drugs when needed, you have already taken steps to improve your personal health outcomes.
When you look just at studies of longevity in HIV populations that have access to treatment, and are able to get on treatment that keeps their tcells in the normal range, life expectancies are pretty much those of the general population.
This is a complicated message. Since I know little of OCD, I've also summarized major points in bullet form below in case that would be more helpful:
- For people who are recently infected the primary cost of living with HIV is typically labs and routine medical visits, rather than drugs
- Your numbers are at the level where current US guidelines recommend starting drugs. But they are not at the level where it is considered to be urgent.
- There is considerable random variation in lab work and it is common to get worse readings shortly after infection. Taking several labs over a period of months is common before people start the drugs
- Thus, it could be quite a while before you need to start the drugs
- Getting routine medical care is much more important to you now
- that includes routine lab work and doctor visits
- Hence, the primary issue you should focus on is getting health insurance as soon as you can, assuming you can afford it
- Help in looking for insurance is at http://finder.healthcare.gov/
- If you monitor your health and start the drugs when needed your life chances are about as good as the average member of the population
Hope this is more helpful
Assurbanipal
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Assurb, I wanna respond to your post but I'm in a hurry, I will later. I picked up some more results today and needed some help interpreting:
Here are my viral load #s:
HIV-1 VIRAL COPY <20 Copies/ML
HIV- VIRAL LOG <1.301
Underneath it says: The range of detection is 20-10,000,000 copies/ml. (1.301-7.000 log copies/mL) The expected result is <20 copies/mL (<1.301 log copies/mL)
Is this good or irrelevant that I don't have a detectable VL at the moment? This just means that I have a low amount of HIV in my blood at the time I was tested, right? I was tested for this about 5.5 weeks after infection, would that be the reason no viral load showed up? Or is it most likely a lab error?
I go to my ID Dr. next week to discuss all the results, I just wanted to pick them up first. Thanks guys.
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Assurb, thanks for taking the time out of your day to write that response. It means alot. Unfortunately after spending the last 6 weeks glued to the computer Ive learned a decent amount about our health care : (
I would LOVE to be able to get insurance. I would be willing to pay a massive premium. Anything is better than paying this much for labs/vists and in the near future meds. However this simply is not an option at the moment. I have to wait at least another 4 months before I can apply to the federal high-risk pool insurance. (My state doesnt offer a pool) That is literally my only option.
I would also love to be able to get some help from my local ASO. As mentioned I went yesterday and they didn't give me any help at all. Basically turned me away because I made too much $. I felt very dejected when leaving, they couldn't even give me a referral to a psychiatrist with expertise in HIV. (I'm currently seeing one but not happy with him so far)
So for the next 4-5 months I'm stuck paying for this out of pocket. It will be extremely expensive but I guess I have no choice..
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Vari -
As Ann said in an earlier post, your CD4s are not bad at all --- they aren't great - but they are not bad - also, CD4s can fluctuate 100 or more "points" a day. Mine have ranged from a little over 500 up to mid 700s -- all within a period of months.
As for your viral load - it is basically showing undetectable - which is a great thing ---- your body is doing its job. You might not see any significant change in your CD4 or any radically elevation in viral load for some time.
There are many people who go years without needing meds. Also, most people get labs done every three months and see their doc a week or so after getting labs --- so, with your numbers, you may be able to hold off on your next labs and dr. visit until the three-four months has passed and you are eligible to get into the high-risk insurance pool.
Also, many communities have charity care hospitals --- I am not sure what state/city you are in.... here in Miami, we have Jackson Health System (SFAN - South Florida AIDS Network) - so, while Ryan White may not cover you ---- if a hospital in your location has charity care, you would pay based on a sliding fee scale according to your income --- their scales are usually fairly generous, so out of pocket isn't as much.
Also, many states have variances to their Medicaid programs - so, even if you aren't elligible for regular Medicaid due to income - you may fit into another state-specific Medicaid program -- here in Florida there is the "Medicaly Needy" program - which adjusts your monthly out of pocket according to your income... for example, if you have a $1,200 share of cost according to income - the minute you hit that amount, all the rest of your medical expenses - including labs and meds, dr. visits, etc. are covered 100%. When I used to work that program for the state - I used to advise clients to incur their big medical expenses (that will meet their share of cost) at the beginning of the month - that way they wouldn't have to pay anything the rest of the month -- the amount resets monthly.
There are usually options --- and once again, as Ann said - right now, your lab numbers are not bad. Keep in mind, that treatment guidelines used to not recommend meds at all until cd4s consistently fell below 300 (consistent being over two - three blood draws, over a period of 3-9 months)....
Things will work out for you. Also, I used to suffer from OCD --- I went on Luvox and worked with a therapist to do some behavioral changes --- I have been off the meds for 12 years - and with the behavioral changes I implemented I was able to get past the OCD and have been free and clear from any severe symptoms of it for about 10 years.
Glad you are here and that you are sharing -- you will find support and also find out that others have went through rough spots, where they didn't know if it was going to get better - but it does, and it did.
Welcome again -
Phil
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Here are my viral load #s:
HIV-1 VIRAL COPY <20 Copies/ML
HIV- VIRAL LOG <1.301
Underneath it says: The range of detection is 20-10,000,000 copies/ml. (1.301-7.000 log copies/mL) The expected result is <20 copies/mL (<1.301 log copies/mL)
It is typical for the viral load to spike and is usually very high in the first few months after infection. The fact that your VL is below 20 copies is an exceedingly good sign.
It most definitely means that you do not need meds at the moment and could also mean that you have advantageous genes that may assist in keeping viral multiplication in check, however that statement is very premature as only a trend of lab numbers over many months etc will tell you how your body is responding to the infection.
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An undetectable viral load is always good news.
The only reason to start HIV meds is to control the virus. So if your virus is already undetectable, it is unlikely you would see a large benefit from the drugs.
But, it is also a bit puzzling.
Just going back and reading (carefully this time) your posts, the timing of your tests (a home access test 3 or 4 weeks after the possible infection and the results of a Western Blot back within 5.5 weeks), the fact that you saw a condom wrapper, have no detectable viral load, a cd4 % in the normal range and your description of your doctor's rather cavalier approach to putting you on Bactrim...
perhaps you should gather copies of all your tests and results and get a second opinion from a leading HIV doctor nearby on whether you are actually infected. Your ASO can perhaps give you a referral.
In either event, a low viral load is a good thing, though.
Best
A
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Honestly, Im completely baffled by the viral load results. I would imagine they have to be a lab error? The girl who draws my blood is always bitching about them having to retest so its probably just a mistake?
I would love to have even a sliver of false hope, but Im 100% HIV+. I have multiple tests that are extremely accurate stating Im positive. I also went through an obvious seroconversion (many flu like symptoms ,bruises all over, nasty nasty thrush etc.) My absolute CD4 #s are well below the normal range for someone negative. The % could be within a "normal" range, but the cd4/8 ratio is too low also. I wish I was wrong but I have to deal with this and not be in denial.
This could be an ignorant question but how relevant is the VL #? Ive read that having ud vl doesnt necessarily correlate with high cd4 counts or being healthy? Lets say my VL # is correct, and my CD4 kept dropping....I would still have to get on meds right?
Assurb, I agree with you wrt to my Doctor. I am definitely going to a new one now that I have most (still waiting on phenosense gt) of the test results. The problem is I have to wait until the 10th to see anyone. I would like to do another VL test while waiting, maybe I could ask my Dr.?
Again, this is all irrelevant as its most likely the VL results were just a lab error.
Thanks everyone.
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I would imagine your doctor will have you do at least one more round of testing (CD4, CD4%, Viral Load) prior to starting you on medicine. This will be important to gain a "baseline" for you. However, your viral load test might have been a fluke, or maybe not! If you look at my previous tests, I had an undetectable viral load the first test and a very low VL in the 300s immediately after seroconversion. It wasn't until several months later that my viral load went kinda crazy (perhaps it was due to finally getting acute HIV symptoms? Or maybe my body was so busy fighting the CMV mono that the HIV had a chance to sneak out into the open?). If you are indeed undetectable, then that is pretty awesome as your body may inherently be able to control the virus on its own. But you won't know this for sure for awhile after several more rounds of testing.
In regards to how relevant the Viral Load number is, higher amounts of virus in the body generally result in a faster decline in the amount of CD4 cells in your body. Lower viral loads generally correlate to a slower decrease in CD4 cells. You are right that if your CD4 count drops (at this point, after only having one test, you don't know this for sure) you will need to eventually begin medication. I personally started medication once the Viral Load spiked up even though my CD4 cells were high (my count at the time of starting medication was 1155). When to start medication is a deeply personal decision that you will need to make with your doctor. I decided to start as I had said from the beginning I didn't want to give the virus any chance of getting a stronghold over my immune system. I wanted to "hit it early and hit it hard". But some would rather wait, and I can also understand why you might want to do that.
Cheers!
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???
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VariGam
Just want to reconfirm your sexual past. In your first post you state that you only had sex with (5) women in the past, then in another post you state that you only had sex with (3) woman in the past. Thanks
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Not sure why thats relevant to anything.... Wasnt exactly in the best state of mind when I made my first post, so my wording could have been off. Ive only been intimate with 5 women (and had actual intercourse with 3) Sorry for confusion on this extremely relevant point. Either contribute something of value or dont post.
Edit: nm, this guy is a troll who isnt allowed to post here anyway. Shouldnt have even responded.
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Explorer3235
Please read the rules before posting.
■With the exception of the “Am I Infected?” and “Off Topic” Forums, the AIDSmeds.com Forums are intended for people who have been diagnosed with HIV (or their loved ones/caregivers). If you are questioning or unaware of your HIV status, please refrain from posting messages or questions in the Forums intended for HIV-positive people.
Jan
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What is so atypical of my numbers and what would warrant further investigation other than my Viral Load? My absolute CD4, %, CD4/CD8 ratio would all be completely "standard" for someone who has HIV. Also well below the range for someone negative (with slight exception of %).
I've been tested multiple times as I mentioned earlier in this thread, including a western blot. Every test has been positive. I will ask my Dr if he thinks this is necessary, not quite sure why it would be though.
I also have to pay for everything out of pocket. Restesting of everything is going to cost me around a thousand dollars or more...
As 'vaguesblues' mentioned, his VL was UD on his first test as well. It was probably just a mistake in the lab or some random blip. Or maybe it was due to the timing of my test (about 5.5 weeks after infection). Who knows....I'll have more info with my 2nd round of testing in a few months I suppose.
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Dang you went through it all incredibly fast, your head must be spinning. Welcome to the forums.
Slowly the cookie crumbles, eh?
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Hey Vari, your Viral Load is atypical for a newly infected person and thus does warrant re-testing, I think. Maybe Ann or someone who knows more about this can chime in but it does strike me as out of the ordinary.
Also, here is a useful link from the i-base website explaining the link between CD4 and viral load. http://i-base.info/ttfa/section-2/214-how-cd4-and-viral-load-are-related
Best
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Hi there Vari,
welcome to the forums....
as a 'newbie' myself I understand what you are going through.
I tested positive just over 2 weeks ago and my doctor and I suspect that I was probably infected approximately 6 weeks ago....
I know I have chimed in late in regards to your original post, since i have just realised the flurry of activity following from your post re: T cell count, viral load etc. However I just wanted to let you know that you'll be ok. People on this forum will support you through this crazy ass time. But you need to be nice to yourself as well.
I understand, like everyone else on the forum, the blame game that is going on and on in your head. But ask yourself this question - what will it amount too? You will get nothing out of blaming yourself friend, except more heartache and pain. And you dont want to do that. You need to get on top of this and not let it consume you, because it doesnt have to be the central thing in your life. Its sounds like you have things going for you with a job etc. Focus on the positives for now, and time, time will make it easier.
Like a fellow forum poster said, none of us want to contract HIV (I wouldnt wish it upon my enemies!) - so let go of your self blame... We're here for you
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I cannot be totally sure, but this guy who started this thread is a fraud. Check the links below:
http://www.thebody.com/Forums/AIDS/SafeSex/Q217607.html
http://www.medhelp.org/posts/HIV-Prevention/Tested-Positive-Strange-Follow-up-labs/show/1605907
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We seem to have been getting more than our share of these lately. Luckily those of us who've been here awhile figure that out, sooner than later.
*modified to add: My sympathy for people with extreme anxiety and HIV phobia is mitigated by the fact that frauds who claim to test positive over no-risk situations (dirty testing needles, protected sex) only make newly infected people more anxious, more fearful than they already are.
I do not tolerate them gladly.
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VariGam is now banned. We do not tolerate people who lie about testing hiv positive. What a waste of time.
VariGam, I hope you seek the psychological help you so obviously need. You do NOT have hiv!
Ann