Jul 25, 2010
Hello Dr. Bob:
This is more a comment than a question.
Late last year, I was advised that my ex-boyfriend had died of AIDS. Of course, this caused great panic because I had always refused to test thinking that not knowing was best.
Two weeks later, I visited an HIV Specialist after having blood drawn for testing that I had requested anonymously. This was nine months post exposure.
Two days later, the HIV Specialist called to say he had the results and that I needed to see him in another six months. He had already advised that his office did not give negative nor positive results over the telephone. But the information was based on discussions in his office.
I spent the next eight months believing myself to be negative one day, then positive the next. I was just too afraid to call and ask for my results.
Finally one week ago, I decided after reading all the information here at thebody.com and especially here at this forum, to call and request a copy of my results.
Today, I know that I am HIV Negative. Not only knowing this, but not thinking that I had to test every six months out to ten years as I had previously heard.
Because of the education I received over the past eight months, I have made sure that I speak about HIV/AIDS to at least two persons per day.
I am amazed at the ignorance surrounding this disease, even on my behalf.
This is just to encourage you to continue the work that you are doing because you are not only educating persons who visit the website, but those who chose to use the information to educate others!
My friends living with HIV/AIDS, are now coming here for encouragement and education.
Once again, thank you!
Response from Dr. Frascino
Thank you for taking the time to write in and share your newfound insights! Thanks also for joining the battle against HIV/AIDS by helping to dispel myths and misinformation. If we all just did our part, we could stop HIV cold in its tracks!
I'll reprint below some information that will hopefully help to debunk the notion that "not knowing is best!" It certainly is not, no matter what the test result reveals.
Be well. Stay well. Welcome to the fight!
HELP - very scared (concerning oral sex risk) (WHAT YOU DONT KNOW CAN KILL YOU, 2010) ( IS IT BETTER TO GET HIV TESTED OR NOT TO KNOW, 2010) Jun 16, 2010
Hi Doctor, Thankyou for your help.
If I were exposed, it would have been about 2 1/2 years ago, November/December of 2007. I am a heterosexual female and lost my virginity to someone with a very iffy past. We only had sex once, it was protected - however, the condom broke and we realized it right away. He wanted to continue without it, but I refused, and he did put another one on. But this is not the exposure that I am worried about. On many occassions, maybe 7-8, I performed oral sex on him with ejaculation. Now I know that I should not have done this, and my fear has kept me from having sex since or possibly exposing anyone else to it. I later found out that he had 80+ sexual partners (disgusting, I know). He claimed to be HIV- but also revealed that he hadn't been tested in awhile.
I know that the risk for oral sex is very low, but I have had many frightening symptoms. Several lymph nodes in my neck are swollen, and will sometimes become painful. I have also had reccurring bouts of alternating diarrhea and constipation. There hasn't been any weight loss though. I have actually gained weight due to my paranoia and thinking that if I don't lose weight, I don't have the disease. Sometimes I do get a white tongue, but I am also taking asthma medicine which may cause that. Since my exposure, my asthma symptoms have become worse and I have had to return to the doctor a few times. Also, January of last year I was diagnosed with mono, which I found to be strange. The doctor said I had many abnormal lymphocytes (sp?) in my blood work, but I had none of the symptoms of mono. I have literally become obsessed with finding out if I have HIV without actually being tested. I am young and fear the results. This is constantly on my mind, and I have no doubt that it makes my symptoms worse than they really are.
My questions are: 1) How high would my risk be, based on my exposure/symptoms? 2) DO these sound like symptoms? 3) Could HIV cause a false positive on a monospot test? 4) Do you think I should get tested?
I am so scared and do not know what to do! Please reply - I will be very grateful & make a donation. Finding out everything about my exposure and symptoms has literally become my life. I am also worried that if I do not have HIV, and have something else that is causing my glands to swell, it could be dangerous to my health since I have waited so long.
Thankyou so much.
Response from Dr. Frascino
"I have literally become obsessed with finding out if I have HIV without actually being tested." WHAT? As Star Trek's Mr. Spock would say: "Captain, that is just not logical!" If you want to know if your HIV infected, there is only one way to find out: get tested. A simple rapid HIV test can give you an accurate answer in as few as 20 minutes. So what are you waiting (and worrying) for? When it comes to HIV it's what you don't know that can hurt you! (See below.)
Responding briefly to your specific questions:
1. Extremely low.
2. Symptoms are notoriously unreliable in predicting who is and is not HIV infected.
3. Yes, false-positive Monospot tests can be caused by acute HIV infection.
Yes, primarily because you are so freaked out and need peace of mind.
HIV Risk for a Top (WHAT YOU DONT KNOW CAN KILL YOU, 2010) ( IS IT BETTER TO GET HIV TESTED OR NOT TO KNOW, 2010) Apr 22, 2010
I'm a 29 year-old male who was recently in Miami for work conference. I'm a total top (never have bottomed) and had unprotected sex with a guy I met from online. We probably had sex for what seemed like 10 minutes (15 max) and I lost my erection because I was so nervous having unprotected sex. We basically just stopped and I couldn't get hard again. The guy "said" he was HIV negative, but within a week of getting back I started developing a productive cough (yellow plegm), nasal stuffiness and laryngits. Theses symptoms went away for 2-3 weeks and now I have the same exact symptoms again ...the cough is 80-90% non productive, but in the mornings when I wake up I bring up yellow phlegm. I dont have any rashes, lymphadenopathy, or fevers. But i do feel achey in my neck and head regions. I am petrified of getting HIV testing (although I know I just need to) and just wanted to gauge my risk of this representing an ASR? Many thanks Joel
Response from Dr. Frascino
Obviously you understood the potential catastrophic consequences of playing Brokeback Mountain with Mr. Miami McBarebacker and that was enough to scare the happy out of your Mr. Happy. As for the dude claiming to be HIV negative, I would't believe him even if he strapped a lie detector to his throbbing tallywhacker. Remember, one fifth of the over one million HIV-positive Americans have absolutely no idea they are infected with the virus.
OK, so now we've established you had a colossal lapse of good judgement and common sense. Regarding "symptoms," they are notoriously unreliable in predicting who is and is not HIV infected. The only reason to worry or get HIV tested is potential HIV exposure risk.
As for being petrified to take the test, Joel, it's time to grow a set and do what you know must be done! When it comes to HIV, it's what you don't know that can kill you! (See below.)
scared of testing (WHAT YOU DONT KNOW CAN KILL YOU, 2009) ( IS IT BETTER TO GET HIV TESTED OR NOT TO KNOW, 2010) (CONSEQUENCES OF LATE DIAGNOSIS, 2010) Mar 8, 2010
Hey....I am thirty years old..have never done an hiv test.....found someone who is just remarkable....who insist that we have one done before we become intimate......he did his today it was negative.....but I'm scared to death in doing mine......I really need some advice.
Response from Dr. Frascino
While I'll certainly admit getting HIV tested can be anxiety provoking, it's important to note that when it comes to HIV, what you don't know can kill you.
See below, and yes, by all means, take the test before your Mr. Happily-Ever-After become the one who got away.
accepting possibility, need strength to test (WHAT YOU DONT KNOW CAN KILL YOU, 2009) ( IS IT BETTER TO GET HIV TESTED OR NOT TO KNOW, 2010) Feb 17, 2010
Dr, this past summer I had an unprtected encounter. The gay male asked to but i said no. He assured me he was negative of anything and he had just returned from serving and said the armed forces required testing and had since been tested again. i was slipping in and out while we were safely fondelling, (under the influence) but unfortunately remember feeling him penetrate me briefly. I asked him to stop and I was very upst with him and called it a night. i kno technically i was at risk and should be tested but I am so scared, i can't go. I see no evidence pointing in a good outcome. i am contstantly convincing myself he is a bad person who woudl lie about it and every little ailment I have had since, i blame on decreased immune system. i literally have nervous breakdowns everyday and want to throw up when i'm alone. I I think if i believed there was a chance i was okay, i could go. But i am so sure i have forever hurt my family and can't bear the pressure. everyday becomes harder and harder to function. Please tell me to go test and tell me there is still a chance....please.
Response from Dr. Frascino
Your HIV-acquisition risk is brief unprotected anal receptive sex with a partner of unknown HIV serostatus. I agree you need to be HIV tested; however, your pessimistic fears are way out of proportion to your real risk. The CDC's estimated per-act statistical risk for unprotected receptive anal sex with a partner confirmed to be HIV infected is 5 per 1,000 exposure. Your statistical estimated risk would be significantly less, as we do not know the HIV status of your top gun. Plus, your exposure was brief. Consequently, the odds remain very much in your favor that you did not contract HIV from this sexperience. After a potential or even certain HIV exposure, testing is always the right thing to do. See below.
That you are experiencing "nervous breakdowns every day" and that "every day becomes harder and harder to function" reveals considerable anxiety and depression related to this incident. Yes, of course, you should get tested and there is an excellent chance you are HIV negative. Stop procrastinating; it's only making you more anxious and depressed. I would also suggest you consider seeing a psychologist or psychiatrist for psychotherapy (counseling) and/or medication to help with your anxiety, depression and "nervous breakdowns."
Good luck! Be well!
caring for full blown aids friend Feb 12, 2010
My friend was just diagnosed with full blown aids. The doc says he has probably been infected 8 yrs but had refused to be tested. He had a sudden onset of dementia and stroke like symptoms. I will be taking him into my home to care for him as he dies. He is my best friend of 35 years, is 54 years old, and is a gay male. I am a hetero female who is a nurse but who has never cared for anyone in end stage AIDS. Once someone who has never been treated is at this stage, what is the average prognosis/life expectancy?
Response from Dr. Frascino
Your friend's story -- someone who refused to be tested (perhaps feared to be tested) until a catastrophic event occurred -- is all too common. There is no doubt had he come to medical attention sooner he wouldn't be in this predicament now! Hopefully his story will encourage others too afraid to get tested that the alternative of not getting tested is a very poor option! (see below)
I should mention we no longer use the term "full blown AIDS," because there is no such thing as partially blown AIDS.
Regarding prognosis, unfortunately no one has a crystal ball and clinical courses can vary considerably from person to person with HIV/AIDS. It's worth noting that your friend has not had any treatment to date. With aggressive treatment, his health may improve. People can recover significantly from strokes and even symptoms of dementia can sometimes improve. I would suggest you talk with your friend's HIV specialist. He will be able to provide you with the best information regarding your friend's clinical course, treatment options and prognosis.
Thank you for helping someone in desperate need. Yu are indeed a true friend.
benefits of knowing (pick me) (WHAT YOU DONT KNOW CAN KILL YOU, 2009) ( IS IT BETTER TO GET HIV TESTED OR NOT TO KNOW, 2009) Nov 15, 2009
In short I am afraid of perhaps being hiv positive. I was in a relationship for two years with someone and kind of left condoms out of the equation without testing. He didn't seem to be high risk having had a previous hiv test and 5 sexual partners with condoms as he has told me. The fucktard that I am now two years in to the relationship I'm very anxious of dying and having put myself in a bad situation. It seems like all men who have sex with men end up with hiv somehow. I don't know what to do I pray for god to help me, anyway I was sort of thinking to wait it out until one of us got sick before testing. I don't really want to know but part of me does because I want to obviously live longer and get treatment before aids. Is this fear normal or am I a special case I was so happy in my life before my hiv anxiety started to act up again. My last test was 2006 and all my sex had been protected no condom breaks I test the condom after with water. I do not give fellatio so the oral risk would be negligible for me as well as the anal since I was safer sex. As for the relationship I'm still not oral with my bf but I have topped him for two years essentially rubber free. Should I start using condoms now and not bother testing as the prospect of testing positive is frightening to me in my current mental state or shall we eventually test together.
Please Help Me although you must get tired of helping everyone being virally enhanced yourself with no one going out of their way to help you with your worries and fears. Maybe I have a fear of dying over all? because I'm 26 and relatively healthy I just wish I could bury my mum and live to middle age at least and be happy but life is full of awful things.
Why is HIV so prevalent in the gay community in developed countries? Is it every gay mans destiny to be positive it seems cruel as no one chooses to be gay. I want a cure for this already. Why don't they give us dead hiv vaccines like the flu shot? wont we be immune to that strain of hiv then?
sorry for my rant....please answer some of the important issues of the written diarrhea
Response from Dr. Frascino
In essence you're wondering about the "benefits of knowing." See below. I've addressed this issue recently.
Regarding a cure for HIV, we have an entire chapter devoted to that topic in the archives of this forum. I have nothing new to add since I last addressed that topic. Check it out!
Regarding your question "Should I start using condoms now and not bother testing as the prospect of testing positive is frightening to me in my current mental state or shall we eventually test together?", this is not an "either or" question! You absolutely should start using condoms immediately. (You knew that already didn't you? Of course you did!.) Also you should both get HIV tested without further delay. (Deep down you knew that as well, right?) Remember what you don't know can kill you! (See below.)
Fear and Shame..affraid to get tested (WHAT YOU DONT KNOW CAN KILL YOU, 2009) ( IS IT BETTER TO GET HIV TESTED OR NOT TO KNOW, 2009) Oct 22, 2009
I'm a hetero guy who is very ashamed as I made a big mistake. In a drunken state I let another guy perform unprotected oral on me. I don't know what I was thinking.It lasted all of a few seconds until I realized what was going on and I stopped it. I know this guy was Bi but I don't know his status. I've had some really strange symptoms since the incident that occurred back in August such as loose movements, occassional chills, persistent painful swollen glands in my neck and occassional night sweats but no fever. I'm sure I've got HIV. I'm affraid to get tested because it will be a confirmation of what I fear most. Then, I'll have to tell my girlfriend what I did and my family will find out. I will be stigmatized for the rest of my life. I have read alot about oral exposure being a low risk...but it is a real risk. I'm sure I am that one in 10,000 that contracted HIV throught oral contact. How else could you explain the symptoms? I was completely healthy before the encounter. Dr Bob. do you have any suggestions? This is really tearing me up.
Response from Dr. Frascino
Do I have any suggestions? Sure! Your HIV-acquisition risk is extremely low. I'd put it in the negligible category. Your statistics are off. The estimated per-act statistical risk for acquiring HIV from unprotected insertive oral sex with a partner confirmed to be HIV infected is 0.5 per 10,000 exposures. Your estimated statistical risk would be much less, as we do not know the HIV status of your bi-buddy and your exposure was incredibly brief. Your fears about being blown are themselves blown way out of proportion compared to the degree of real risk involved. This is due to the "fear and shame" component of your predicament. Symptoms are notoriously unreliable in predicting who is and is not HIV infected. Your symptoms are not worrisome for HIV acute retroviral syndrome (ARS). I'm very confident you did not contract HIV from this event. At this point your problem is primarily irrational fear and anxiety. I'd suggest you seek treatment for that very real problem (anxiety/irrational fear). Counseling and/or anti-anxiety medication can help. Once you get a handle on that, you should get a single HIV-antibody test three months or longer from the date of potential exposure. As I stated, I'm very confident the result will be negative. In fact, I'd be willing to wager a bet on it!
Get the help you need to face your fears and then get tested. You'll be glad you did. Your WOO-HOO is waiting for you.
I'll repost below some information from the archives discussing why you should man up and get tested.
So anxious please help?? posted once before (WHAT YOU DONT KNOW CAN KILL YOU, 2009) ( IS IT BETTER TO GET HIV TESTED OR NOT TO KNOW, 2009) Oct 10, 2009
Hi Doctor. I can see you are really the person to ask about hiv you seem to know everything. Im very concerned as I was promiscuous at university. I gave several men blow jobs without knowing status. I did not allow any to ejaculate in mouth. I didnt notice any ulcers in my mouth but was often drunk. Does using deep throat increase risk to as I sometimes did. Anyway 2 years on now and im having horrible weight loss of 7 pounds and look very thin on my arms and face. Also extreme fatigue certain days as well as some burning tingles occasionally. Please help me? Im so scared that im positive and i don't know how to cope as I have a phobia of hiv anyway. the doctors have done cbc and many other test which have all been negative so im scared about hiv. what is your take? thank you so much for response
Response from Dr. Frascino
Oral sex carries only a very low risk for HIV transmission. Deep throating or playing tonsil hockey with a stiff stiffy would increase risk if such acts traumatized the mucosa or tonsils.
"Symptoms" are notoriously unreliable in predicting who is and is not HIV infected. The only way to determine whether someone has acquired the virus after a potential exposure is to get an HIV-specific test. That said, your symptoms, two years out, are not consistent with or suggestive of HIV infection.
I agree you "have a phobia about HIV . . . ."
I suggest you man-up and do what needs to be done: get tested. You'll be glad you did. What you don't know about HIV can kill you. (See below.) The odds are astronomically in your favor that you did not contract HIV from your university sexperience. However, the only way to be certain is to get tested! I would also suggest you get counseling (psychotherapy) to help you confront and conquer your HIV phobia. These irrational fears can ruin not only your future sex life, but also general physical and psychological well-being.
Get tested. I'm confident your WOO-HOO is waiting for you.
Is it better not to know? ( IS IT BETTER TO GET HIV TESTED OR NOT TO KNOW, 2009) Sep 16, 2009 The mind is powerful. When people think they are experiencing ARS a lot ot times it is attributed to their psyche. Would a person who is HIV positive but thinks he is negatve be better off not knowing since the stress of knowing could cause a host of illnesses by itself. I have tested 3 times. non reactive antibody at 32 days, non reactive antibody at 16 weeks 6 days and less than 50 copies RNA by PCR at 37 days post. Do I need further testing?
Response from Dr. Frascino
"Is it better not to know" you are HIV positive???? No, absolutely not. In fact what you don't know in that situation could kill you. Delayed HIV diagnosis is still the number one cause of HIV morbidity and premature HIV-related mortality. Knowledge is power! If you test and find out you are indeed "virally enhanced," you and your HIV specialist can better plan early treatment and intervention, improving your chances of slowing down the progress of HIV disease while protecting your immune system from begin silently decimated by the virus. If, on the other hand, you test negative, you will feel less anxious and be able to yell WOO-HOO! Also, by knowing your HIV status, you will better understand your risk of possibly infecting others. And clinical studies have shown those who know their HIV status are more likely to use precautions to protect their negative status or to prevent infecting others. Regardless of the HIV test results, testing tends to increase one's commitment to overall good health habits. Also, if someone is considering starting a family, knowing one's HIV status allows her to take advantage of treatments to dramatically decrease the risk of mother-to-child HIV transmission.
Now, let's have a practical example of what I discussed above, OK? You have tested HIV-antibody negative out to nearly 17 weeks and have an undetectable HIV plasma viral load by PCR RNA quantitative analysis (less than 50 copies) at day 37. Your test results are definitive and conclusive. You are HIV negative. Now are you glad you know your HIV status or not???? Sir, sir, could you please stop doing cartwheels and yelling WOO-de-frickin'-HOO long enough to answer my question? Sir, sir, thanks for the hug and kiss, but could you just put me down and answer the question??? Oh, never mind, I rest my case!
"What you dont know can kill you" and a further donation (WHAT YOU DONT KNOW CAN KILL YOU) Jul 18, 2009 Hi Dr Bob I wrote you last week to say that after over a year of feeling really ill following some risky sexual behaviour - Shingles,chronic fatigue, joint aches, gum disease, rash etc etc, and being 100% convinced I had HIV I still couldn`t bring myself to get tested due to being in total fear of being positive until discovering your site and hearing your words "What you don`t know can kill you" over and over again in my head, which finally gave me the kick up the ass to get myself tested(twice)for HIV, which were thankfully both negative. However my story doesnt end there. After I received the negative tests and could discount HIV I, this week saw a specialist for a full physical and blood work. Yesterday he called me back in to do some strange blood tests and gave me an injection of some sort. Today I saw him again and have been diagnosed with something called Addisons Disease, a quite rare auto immune disease which thankfully can be treated. Whilst I`m not suggesting that worried people who think they hav HIV symptoms will also have it or anything similar, in my case it was only once I had taken the test and received a negative result that I felt able to get professional help for my real symptoms(not the imaginary ones brought on by the stress of thinking I had HIV). I just started thinking how many people are out there convinced they have HIV when they havn`t, and are not getting the peace of mind a negative result brings or who are not receiving treatment for other(real)illnesses. The specialist doc told me that undiagnosed, Addisons can be fatal but treatable now diagnosed. So Dr Bob in my case without your site and in particular your powerfull phrase "what you dont know can kill you" convincing me to get tested it could so easy have come much quicker than I thought and not because of HIV! I cant honestly thank you enough or tell you what a great job you all do and how powerful the advice given is. I will be making a further donation to express my sincere gratitude and hope that you convince many many more that if theres any risk or doubt, getting tested is really the ONLY course of action.
Response from Dr. Frascino
Thank you for your kind comments, for taking the time to write back and for sharing your experience with the readers of this forum. Hopefully your true-life testimonial of "what you don't know about HIV can kill you" will give many others a swift kick in the ass so they too will get tested.
The three primary reasons to get tested are:
1. If you are HIV infected you need monitoring and treatment. Otherwise HIV will kill you. Plus you may unknowingly transmit the illness to others.
2. If you are HIV negative, you'll be able to put your fears and anxieties to rest.
3. If you have another illness (Addison's, psychosomatic disease, Lyme's disease, etc.), you'll be able to get the treatment you need.
Thank you for your donations to the Robert James Frascino AIDS Foundation (www.concertedeffort.org). They are urgently needed and warmly appreciated. Your one gift will touch many lives.
Is abstience the answer? Feb 28, 2010 Dr Bob- My partner recented contracted pneumonia (pcp). He was unaware of his HIV status until this 1st oportunistic infection. His T Cell count is 125 and viral load about 500,000. He began Atripla last week.
As a result of this situaiton, I resteseted as well. I am HIV negative. I have been reading the forum on magnetic couples to learn more about this new situation.
My question: Is abstinence the way to go until his viral load is down? We primarily engage in oral sex. I was less fearful of transmission when I understood him to be HIV+ (condoms, etc) but now that I realize he has clincal AIDS, I am much more fearful. Is it safest to wait until his lab work looks better?
Response from Dr. Frascino
Situations like your partner's are tragic, preventable, and all too common! Being diagnosed at the time of a significant opportunistic infection and profound immune deficiency means that your partner most likely has been infected for the past 7 to 10 years, perhaps longer. Had his infection been recognized sooner, appropriate intervention with combination antiretrovirals could have preserved his immune system function and prevented this opportunistic infection. Your partner's story should serve as a sober warning to others who don't know their HIV status or are too afraid to test.
As for preventing HIV transmission, certainly not having sex is one option, but not one most of us would find desirable or acceptable. An AIDS diagnosis itself does not increase the risk of HIV transmission. Certainly an elevated HIV plasma viral load (whether "HIV positive" or "AIDS") does increase the risk. Proper condom use is essential for all penetrative sex, no matter what the viral load or stage of illness. Continue to peruse the information in the chapter on magnetic couples, and you'll read testimonials of how other serodiscordant couples have handled this problem.
Regarding your recent HIV test, you'll need to be retested at three and six months from the date of your last exposure to confirm your HIV-negative status.
Good luck to you both.
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