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Does anyone else suffer from severe HIV OCD?
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Does anyone else suffer from severe HIV OCD?

hello all,
for a while now I have suffered from severe HIV OCD. I have "contracted" hiv a million different times, a million different ways. From accidentally drinking my friends drink, getting "poked" when pumping gas, getting "poked" when opening a door to a store, shaking hands, stepping on a needle, etc. I know in my mind that it is completely ridiculous but i can not seem to shake the fact that it is basically impossible to get in these ways (just after saying that, i had to knock on wood). I had about 4 HIV tests in the span of 7 months (which is completely ridiculous, i know). I often have bad thoughts about people with HIV, which i DO NOT mean. they pop into my head, and i feel so bad after they happen. I often check my body for new things, and when i do find something new, i think i was poked by an infected needle. I am sexually active -- i even made my newest partner get tested before we had sex.

I am so sorry for rambling, but I have no one else to talk to. My friends dont understand and when i do try to talk to them, they dont understand. I am so grateful that I have found this website -- it is such a relief to have complete strangers who are willing to help.

So, after my long ramble.. my question is, does anyone out there suffer from HIV OCD/anxiety? how do you deal with it?

Thank you so much and God Bless.
Tags: OCD
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1699033_tn?1405352675
Did you ever feel better, even in the beginning?  I'm on clonazepam myself but only for sleep.  My OCD medication, Wellbutrin, works for me during the day without help of clonazepam.  To some point I think we are all addicted even if it is just mentally in some cases.  I probably wouldn't be able to sleep without clonazepam but I don't know if that is a mental or physical addiction.  What I don't understand is why the medication isn't working for you, your OCD medication that is.  Not every medication works for every person.  I'm wondering if you should try a different one.  Have you discussed this with your doctors?  
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31 Comments Post a Comment
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Avatar_m_tn
yes yes i do ever since my scare im scared to do anything with a guy even mutual masturbation even tho im being told by many experts that its not a risk and i dont need testing nor do i pose a risk to my partner dont fret i know its hard to believe what we r being told but they must be right they r the ones that no bout it so we need to put a lil faith in then n take that leap of faith i no ocd way to well so chin up we will make it thru it together
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1699033_tn?1405352675
What you are going through is very, very common.  I'm sure there isn't a ranking of irrational thoughts but just from being on MedHelp I can say in my opinion people with OCD have this HIV irrational thought the most and that includes myself a long time ago.  

Your question of "how do you deal with it?"  There are a couple of different ways.  The first way is learning CBT or cognitive behavioral therapy.  Usually this is taught by a psychologist.  In your case it may be writing down in a journal the irrational thought and then writing down the "true" answer.  As an example. "I just drank out of my friend's drink, what if I get HIV?" you would counter that with "This is my friend, I know they don't have HIV, and I know I cannot get it from this method of transmission anyway."   It sounds like a lot of work but it can help you.

Secondly, you can go the medication route.  A lot of people do both the CBT and the medication.  There are plenty of medications call SSRIs out there that people take to combat OCD.  I take medication myself.  It is not an SSRI but it does work for me.  I have been on SSRIs in the past and they have also worked.  Why the switch you might ask.  Well, I took an SSRI many years ago and went medication free for quite a while.  I just happened to have an OCD flare up and needed to go back on meds and Wellbutrin was prescribed.  

This is not to say that every symptom will go away but with the help of CBT and medication you can let these things go.  The thought may show up but you will be able to say "whatever" and move on.

There really is no need in today's world to suffer with these types of irrational thoughts or any OCD symptoms or anxiety symptoms for that matter.  Please try to get some outside help.  I know it works because it works for me and countless other people on these forums.  

Best of luck and keep us posted on your progress.  Remember you need to be proactive to get better!  :)
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Avatar_m_tn
im battling bad hiv ocd to point its interfering in my work etc i wear an elastic band around my wrist.and every time i have the thought i snap.it to associate pain with that specific thought can you please tell me that i am being a lil irrational i dont know if you read any of my posts. ocd is hard to deal with im.on meds n.see my family doc n counselor and psyciatrist so ive been trying to get help since my actual scare may of 2010 ive had 14 tests dont when u only have to test for 12 weeks on canada after a.possible exposure all negative and i still have trouble.accepting the results. hope you respond.
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1699033_tn?1405352675
You didn't mention that you were seeing someone and that you are on medication,.  I never saw any of your other posts either...sorry.  I have OCD so I understand where you are coming from.  

You have to stop yourself when you think these thoughts.  When you leave them unchecked they have a life of their own.  Do you think the rubber band helps at all?  Please tell me what you are taking, how much and what you think, if anything, the therapists have done for you.  

This is the bottom line about HIV.  I don't know what your actual scare was or whether it was a perceived scare or a true scare but in the end it really doesn't matter, irrational thoughts are going to have a mind of their own anyway.  If you test negative at 3 months post "exposure" then you are negative.  Any worrying after that is considered an irrational thought in my book.  I have been there.  I sat in an AIDS clinic during my lunch hour for a while to combat my fear of HIV and AIDS.  That thought is not an issue for me anymore.  

Post back with what you are taking, etc.  I'm curious.  Don't give up.  I really think there is help for you and that you don't have to live your life this way and of course I will always respond.  My best to you.  

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Avatar_m_tn
it was mutual masturbation with contact of saliva the hiv forum n moderators told me zero risk and so have the experts and educators ive spoke to in person or over the phone....the moderators told me zero risk no testing needed and i dont pose a risk to my partner
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Avatar_m_tn
im taking lithum for the bi polar but i dont no how to spell what i am on for ocd i am on clonazepam for anxiety bern on that for a year n a half im addicted to it they have tried to take me off and then i go thru aweful withdrawls i mean like bad ones like coming off of street drugs thats how bad it is so they keep me on it so i dont go thru withdrawls
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1699033_tn?1405352675
Did you ever feel better, even in the beginning?  I'm on clonazepam myself but only for sleep.  My OCD medication, Wellbutrin, works for me during the day without help of clonazepam.  To some point I think we are all addicted even if it is just mentally in some cases.  I probably wouldn't be able to sleep without clonazepam but I don't know if that is a mental or physical addiction.  What I don't understand is why the medication isn't working for you, your OCD medication that is.  Not every medication works for every person.  I'm wondering if you should try a different one.  Have you discussed this with your doctors?  
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1770029_tn?1325805955
WOW.. i didn't expect this many comments. Thank you so much everyone. It feels wonderful to know that I am not alone in this. I read somewhere that HIV OCD is so common because the symptoms are so broad. Everyday is such a struggle because I am super careful to make sure I don't potentially harm myself. I do not want to be a "rare case" of HIV (had to knock on wood again) where you can get it in a very odd way. I am really trying to steer clear of medications for now, because I want to fight this problem myself.

Do a lot of you have problems with "what if" situations? For example, what if I am the first person to get HIV in this manner?
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1770029_tn?1325805955
I accidently selected best answer -- every single answer was wonderful! :)
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1699033_tn?1405352675
What-if is a classic OCD symptom.  It's what gets us into trouble.  I'm a catastrophizer so I "what-if" until the worst case scenario pops into my head which is what you are doing.  Statistically, you being the first person to get HIV in a manner that is not the regular mode of transmission is pretty much zero.  But our brains don't get that.  Anyway, I understand you want to do it on your own.  Can I suggest a book then.  It is called Self-communication by Joseph Luciani.  I read it and really found it helpful.  Best of luck!  
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Avatar_m_tn
u r not alone i went thru an actual exposure and where im from canada its 12 weeks but that wasnt good enough i tested 14 times from may of 2010 and my last test was last week n it was.negative 14 neg. and then i go and do mutual masturbation where the guy used his saliva to lubricate my penis. ive beeb told.by so many agencies and.experts.and here on medhelp that its zero risk then i seen my doctor today and.she said zero risk no testing needed so believe me i no what ur going thru
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1699033_tn?1405352675
Actually the book is self-coaching...not self-communication...sorry.
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Avatar_m_tn
ya im allergic to welbutrin i was on it for depression it just bout killed me is just howcallergic i was to it. clonazepam worked wonders for me i was one on 3 mg's 1 mg 3 times a day now im at 1mg twice daily my body is highly addicted to it we have tried to tapper me off but i go thru really serious withdrawls i would be throwing up couldnt eat sleep my anxiety was worse i would sweat really bad flu like symptoms etc so now they keep me on it so i dont go thru those benzo withdrawl (withdrawal) syndrome but it just got upped again to see if it will start to calm me down again. the bad thing bout clonazepam is it u take it as much as i did you have to continue to up it to get thecsame effect
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1699033_tn?1405352675
Oh no, I'm sorry to hear that you had such an adverse reaction to Wellbutrin.  I only took the clonazepam during the day in the beginning to help with the immediate OCD/anxiety crisis.  I need something long-term and that is where the Wellbutrin comes in for me.  I do take the 1 mg of Clonazepam at night to sleep otherwise I would be up all night.  I think I will try to taper it down to half and see what happens.  You have me a bit scared about the addiction to it.  

I do hope you feel better soon.  I know how hard this is.  I feel like it encompasses my entire life and I am so completely desperate when I am in crisis.  I hope I never have to go there again.   I went a long time without meds so I'm hoping I can do that again at some point.

I hope the incresae in klonopin does help you.  I think we need to do whatever is necessary to feel better because living the other way is just not living.
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1820327_tn?1317166523
You said:

"I am sexually active -- i even made my newest partner get tested before we had sex"

Actually, I think that's pretty smart. I did the same in my last relationship as well. That's not to say that everything will be detected in that instance, as some viruses (such as HIV) have a "window period" where a person may be infected but the immune system has not yet produced enough antibodies to determine an infection.
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1807579_tn?1317177297
hey everyone, hey jgf25 it's me again.
im having a crisis now, i just think that im not going to have a cure, i think that im weaker now more and more...im really desesperated because i have a weird sense of contamination around me, i cant not travel by public transport without checking everywhere i go and i find many stains!! i dont know what they are but these freak me out!! im very sad, im angry with this disorder i just wanto to take this disorder off my mind, but i cant!!! it *****, ****...im want my life back....i know that you dont know me but i can understand you, too
look...today i had a cut on my finger by a door, it was a little dot (i dont know how to explain)i didnt have blood or anything, any fluid, nothing but that event freaked me out anyway...do you think it's possible to get infected with hiv in that way?
second event: i had three stains on my jeans, i dont know what those were but i touched those, then i had the thoughts that they could  be semen or breast milk but anyway those stains were dry. however, i started to cry because i thought that i could get inffected with hiv by that way. HEY WHAT DO YOU THINK??? I DONT KNOW HOW TO  OVERCOME THIS, I THINK IT'S NOT POSSIBLE TO DO...
my problem is that sometimes i think that many ways are possible of getting hiv, i dont know, sometimes i think they are irrational thoughts but sometimes i think they are possible!! what can i do??? how do i know they are impossible??? please help me!!! what do you think??
thank u so much, really...thank u and sorry for my english, im not a native speaker
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1770029_tn?1325805955
thank you! i will look into it!
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Avatar_f_tn
Im 21 and I think I may of OCD over hiv, the last month has been a wreck for me. I can sleep and if I do get to sleep I cry myself to sleep. I havent been in a sexual relationship and I dont do any kinds of drugs. It all started when I got strep throat and I could afford to go to the doctors and I looked up remedies and used salt and vinger to cure it. The I go on the internet and all these systoms of hiv came up and freaked me out cause now im sooo worried it wasnt strep and on top of that I brushed my tongue with salt and vinger really really hard now my taste buds are swollenm but now im thinking what if they already were swollen and now I have a sore throath and I dont know why(I do smoke) but I went to the hospital cause I thought I got aids for a nail that was in my room but he said there is no way I could of, So if I didnt get it that way maybe if I walked outside and didnt wear shoes blood got into the my cut with the nail. I really need help here nobody will talk to me about this and my parents cant stand me waking them up all hours of the night but I cant help it im sooo scared. :( I could go on and on but I know that it wont help but even if im ignored I have to let some of this out anyways ive been look for doctor chats online because I dont know how I got strep from just sitting in my house:(
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Avatar_m_tn
hey, you're not alone in this.
I'm sitting at home awaiting my 7th HIV test results in two years and realizing to myself that even if its negative AGAIN i might still be worried.
I've always had mild anxiety & OCD but nothing overly debilitating, but then I had a huge scare about a year ago and since then i haven't been myself. It's interfered with every aspect of my life as I can't seem to get past the 'what if's?' in my head.
And now, after this test I just had, I'm worrying that maybe the last time I went they forgot to use a new needle, since I didn't see them open a new package. The doctor assured me this was impossible, and even showed me how they always throw out the syringe after, but I still can't help it.
If anyone else told me they were worried about getting HIV from a HIV test I would think they were an idiot.
So yeah.
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Avatar_m_tn
I think that most people that suffer OCD have some type of fear of HIV because the way in which the media has potrayed the disease,if you google AIDS images it's shocking what you see when really that is not a reflection of how people with the virus look today.
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Avatar_m_tn
I have had OCD for 5 years, it started because I was sexually attacked by my ex, I fear hiv so much, then a few weeks ago my worst fear happened, I had sex with my bf and the condom broke, he told me after that he had unprotected sex with some girl he took on a date, it was a one night stand. I went to see the dr the next day, took him too, she refused top test me as it was too soon. I had the test done yesterday and need to wait till monday for the results.
its hell!! feel like im going out of my mind with worry, my bf swears he is not infected in any way, and so many health professionals say the chances are soooooooo small, but Im still scared.
any advice on how I can survive the next 2 days?
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Avatar_f_tn
I have had ocd over hiv for abt 4 yrs now n each time an episode starts itcripples me so much tt i cant function properly inwld be fine fr a few mnths then start another bout of obsessive thoughts. It is so tiring bt i fid comfort in this forum
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1041472_tn?1357233514
I am also suffering from hiv ocd in a real bad way. My exposure was September 27th 2012. To date I have done 60 hiv tests after 168 days ! I simply just cannot get the re-assurance and peace of mind that I am hov negative from my last exposure in September 2012. I am presently seeing a therapist and have been olaced of effexor 150mg. It has helped me alot but the strong urge to test week after week is just not going away as I continue to give in to my stupid irrational thoughts and keep testing ! My best freind tells me that I am addicted to testing and calls me "Test Junkie". Has anyone ever gotten over this frantic testing addiction ?
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Avatar_m_tn
hey there,

i'm definitely in this boat. i've been tested 14 times in 2 years, but i have to say; 60, now that is impressive :p
but yeah, i agree. i feel like i can't function a lot unless i know for a fact that i don't have it, but i also never feel like i ever know for sure. there is definitely always that 'what if?' in my head. for instance, after my last test i went out and got drunk and i cut my finger or something during the night. the next day my ocd kicks in and i start thinking about how someone's hiv positive blood or semen could maybe have gotten into my cut and now i don't know if i'm hiv negative or positive anymore.
sometimes i think i would live a better life if i just injected myself with hiv, to get over this ocd fear of it, as crazy as that sounds.
this whole thing is frustrating and seems so bizarre to me. i drove a motrobike for years, ive gone skydiving, i'm not afraid of anything except all of a sudden hiv
i've tried just dealing with this on my own, but i'm going to try reading 'brain lock' -a book recommended to me.
any other recommendations? i'm not sure if i want to go on meds, i've heard concerning things about ssri's..
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1699033_tn?1405352675
Let me ask you this....I don't know how old you are but have you had a relationship in the last 2 years?  If not, then your life is really complicated by this HIV anxiety and yes reading Brain Lock may help you but a psychologist who teaches CBT would be better.  And what may be even better is CBT AND medication.   I have been on meds, off meds and then back on meds.  The first thing you have to know is that they do work.  Yes, there are side effects and you may have to try a couple of them before you find one that works for you but personally after having battled OCD without meds for quite a number of years...I am happy to take them.  I think the only side effect I have from my medication (Wellbutrin) is a little weight gain and that is it.  So ask yourself....are you really living?  If so, then great.  If not, then what is stopping you from seeking out professional help?  
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