Avatar universal

Fear of HIV is taking over my life

Hello my name is Meg and I just wanted to type this thread because I am alone and anxious inside. I have people around me and loving family and friends but my OCD has made me trapped in my body. I have such a HUGE fear of contracting HIV and when I see blood I get weak and woozy and obssessive. Today I was in a restroom and I never sit on the toilets and I noticed that there was a small speck of possible red on the seat and I freaked. I had to look really close to see it and I even took a really long piece of TP and wiped it. The second time I tried it came off. My mind started spinning and I broke out in a rash. I have small cuts from biting my cuticles because my nerves are really bad. I had bandages on the ones that I thought needed them. I am so afraid that somehow the speck touched on of my cuticles. My mind wont stop racing. I call the cdc and the illinois HIV and STD hotline all the time and they said no to worry. I have been tested 17 times in the last 1 1/2 and I am no longer sexually active and I do not use drugs and I have never had a blood transfusion and I am loosing my mind. I have been working with a counselor on some CBT and I am on 120 mg of Prozac the highest my psychiatrist put me on and I take clonazepam and zanex. I have quit drinking and smoking pot and I am trying to work out every day. I used to be so much fun and full of joy and not worry. Now my life is always worry worry HIV this and HIV that. Im losing control of my life. If there is anyone out there who can help me or relate in any way PLEASE RESPOND!
15 Responses
Avatar universal
I know exactly what your talking about! I have spent the last 3 years avoiding what I consider to be the worst disease that exists, not AIDS, but something that most people wouldnt think is the worst disease, except I do. Ive gone to great lengths to avoid ever coming in contact with it, yet, no matter how much I try to avoid, I still worry so much! It has completely taken over my life. Ive lost friends and made big life decisions based around avoiding anything that makes me think I could come in contact with the disease.  I know how you feel. Its horrifying and only people like us who really understand know how scary it is.I have recently decided to look for a psychologist. Im gonna go soon for the 1st time. Ive talked to many people in forums that say it helps so much. I was thinking maybe somone who specializes in ocd could be much help! R u seeing a pysch or a basic coucelor? Maybe somone who speciealizes in ocd could really help alot more. Im sure these fears do not have to control the rest of our lives. I wasnt always like this, and I m sure you werent born fearing AIDS, so I just keep telling myself that something along the way put these intense fears in us and there has to be a way back to reality.
Avatar universal
Do you understand that as soon as blood hits oxygen the virus dies. It would be imossible for you to get it from a toilet seat. I don't know if you knew that. Anyway have you heard of the amenclinic.com it is great check it out you probably have some genetic overactive parts of your brain.

The best of luck
Avatar universal
yeah i been in exact same position as u, down to every last detail. the worst part was when i got my boyfriend to have 2 hiv tests, which really upset him. anyway, I am over all that now, so there is hope for you. ur ocd is caused by a fault in ur thinking patterns. u know ur being irrational, but u cant help urself. CBT helps u change ur thought patterns, and there are really good self-help books.
Avatar universal
I also have fear of body fluid outside body too and had almost 20 hiv test within 2 years.

It's also not easy for me to let go but try thinking this way:you don't have sex,you don't do drug=  no hiv

Good luck!
Avatar universal
I know what your going through. I started to think that maybe I got HIV from a boxing class I took where a guy bleed a little on my shirt. I got tested and it was negative. I waited 6 months and got tested and it was negative. Then I thought I got HIV from the place giving me the test. So I chased that for 6 months. Then I went to a party with a childhood friend I know who has HIV from being a hemopheliac and I shook his hand and worried i got it from him. The chase can go on forever if we let it. In the end the problem is that we have OCD and the specific kind we have is hypochondriasis. The only thing that works is trying to not allow yourself to go there and stopping yourself when you catch youself going there CBT. I also started doing phone meetings of OCD annonymous. The meetings are Thursday at 6:30PM western time Sunday 5:45pm and Tuesday 6:30pm western 712-432-1690 then use code 752820. take care -ari
Avatar universal
Wow, you have described a lot of the same fears as me.... i get woozy too etc... and have  the so many of the same similar fears. I know you wrote this over a year ago so I'm wondering, have things gotten better? I just joined this thing so I don't really know how to send messages and stuff but if you know how send me a message and I'll write back.

Avatar universal
i know exactly what you are going thru, ive been living with these fears and anxiety for 7 months. just two weeks ago i finally was brave enough to get my test. and now waiting for the results is making me scared(which i will find out tomorrow). how did u guys handle receiving the test? i had diarrhea after i took it  and now, only in the mornings tho. did u guys get that too(i guess from anxiety)? pray for me as i get my results tomorrow pls.
anyway, you dont have hiv trust me, here is a link to nursegirls journal. it explains how you do and dont get hiv. http://www.medhelp.org/user_journals/show/88524
Avatar universal
i have this extreme fear of hiv too.and it's good to find ppl like myself here.cuz most ppl cant understand this and i dont dare to tell this to them cuz i'm afraid they think i'm a freak.
mine began about a year ago when i went to a dentist,the fear stroke me so badly and i was living with that for 3 months,i checked and it was negative.after that i've had that for various reasons like shaking hands with a drug addict ,walking in a pathway which i saw a used syringe on the ground and ..
god dam it cant even go to barbershop!
now i think how am i supposed to live in future if i'm going to need surgery someday or if i want to go for dental care or ...thousands of more reasons.i can't live with it.
Avatar universal
Hi I was raped three weeks later I got a sore throat body aches and a canker sore. Two months later I stopped mensturating. I have had 106 HIV test all negative but I'm convinced this is what I have I can't do anything anymore quit both jobs have no friends anymore tried committing suicide why are all theses test wrong
1699033 tn?1514113133
I remember your first post, it was in late August and it is below:

"I was raped sixteen months ago. By somone who told me they had HIV I stopes mensturating and had the ars symptoms. I've been tested for a year and a half and it's been negative but yet I'm so scared I won't even leave my house."

My comment back to you was:

"I am so incredibly sorry to hear you were raped.  You mentioned that you have been tested for a year and a half and it has always been negative, that is great.  However, have you ever sought treatment for the psychological trauma that you have been living with?  If not, then I suggest you seek therapy either individually or in a group.  You have made a prison for yourself by staying home.  You deserve so much more out of life.  Please think about getting help so that you can move on with your life without fear.  You are in my prayers. "

It is abundantly clear that you are not HIV positive.  I'm surprised a doctor will even test you anymore that is how NEGATIVE you are.  So knowing that, what you have done to address the psychological trauma you have been living with that is probably also fueling your HIV anxiety, your inability to keep a job, friends, etc.  The tests are not wrong, I promise you that.  Also, committing suicide is not the answer.  I urge you to seek professional help ASAP.  You are in a dark place and you need to and can get out of it so please take care of youself by getting therapy and the rest of your life will fall into place.  Remember, all I can give you are words.  YOU have to take your life back by being proactive and getting help.  

Avatar universal
But what if I don't make antibodys or I have that strain from the camaroons of Africa that they don't test for. What if I stop testing and I get reall sick what if I can't have kids?
1699033 tn?1514113133
Your statement above clearly shows that you are suffering from OCD.  You have written "what-if" three times.  That is the thing with OCD, we second guess everything to death with our what-if irrational thinking.  

You really need to seek professional help.  You are stuck in this cycle of obsessive irrational thinking that you have spent the last year and a half of your life in.  There is no reason to live your life this way.  

"What-if you don't make antibodies?"  Our immune system works by making antibodies towards any infection we get.  That is why vaccines work.  They give us the measles vaccine, we make antibodies to it, so when our bodies encounter the disease, our antibodies stop it in its tracks.  This is the same for HIV as far as making the antibodies goes.  You WOULD make antibodies if you were infected.  After 3 months, if you are testing negative then you are most definitely negative.  

"What-if you have that strain from the camaroons of Africa that they don't test for?"  This is a very rare subtype so your chances are really zero.  

"What-if I stop testing and I get real sick and what-if I cannot have kids?"  You have had what, 106 tests, and all of them were negative.  You DO NOT have HIV, therefore, the only thing stopping you from having kids would be some sort of infertility.  We can make ourselves sick with worry and that is what you are doing.  We become more aware of everything that goes on with our bodies and attribute it to that irrational thought which in your case is HIV.  

You need to see a psychologist or psychiatrist ASAP.  I could sit here and talk until I am blue in the face, but unless you go and seek professional help, you are going to be stuck on this rollercoaster ride that is OCD.  So please, take my advice and pick up the phone and make an appointment TODAY.  
Avatar universal
I have a therapist. But it doesn't make me feel heathy I read that women can stop mensturating when they have HIV and I always had periods before this. There was one reported caseof the subtype from the camaroons of Africa I do make antibodies to vaccines so why not to HIV or am I just taking longer
1699033 tn?1514113133
Nobody takes a year and a half to produce antibodies to the HIV virus.  You don't have antibodies to HIV because you don't have HIV.  As far as the non menstruating, you need to take that up with your gynecologist.  Extreme anxiety could also cause you to stop menstruating.  

See below what I found on the web:

Factors that can disrupt normal menstruation and cause secondary ammenorrhea include:
•Drastic weight loss
•Eating disorders
•Stress and anxiety
•Drastic weight reduction
•Significant weight gain or obesity
•Hormonal imbalance (such as with polycystic ovarian syndrome)
•Endocrine disorders such as thyroid disease or pituitary disease/tumor
•Intrauterine device (IUD)
•Too much exercise
•Premature ovarian failure
•Menopause (normal for women over age 45)
•Use of birth control pills and other contraceptives
•Uterine scarring, usually from procedures such as dilation and curettage (D and C)

You have stress and anxiety so this is most likely the reason for having ammenorrhea but again you really should see a gynecologist.  

On another note, have you considered medication to combat the OCD/anxiety?  There are some very good medications out there that help tremendously with OCD/anxiety.  Just a thought.  
Avatar universal
you need to get this book it changed my life its called -
you cant be positive with 106 tests but you def - have to go there with your thinking and experience it in all its fear - to desensitize your mind into constantly revisiting the thought -
Its like dealing with a problem - just mentally check out CBT  
I WISH YOU THE BEST and am so sorry you were raped
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