Avatar universal

I'm at the end of my rope with this

I really don't know how this or anyone can help, but I figured I'd give it a shot.  February 1st I made a really crappy decision to have sex with an African Sex Worker.  I regretted that decision immediately afterward.  I wore a condom.  I woke up the next morning and saw a red abrasion near the base of my shaft.  I remembered I didn't have it before I went to this crappy establishment.  I was married at the time.  My stress and anxiety after seeing that abrasion skyrocketed through the roof.

I googled how I could have gotten it.  I thought maybe it was herpes at first.  But after around 7 days the abrasion went away.  Then that's when I started feeling so many symptoms.  I started having cold chills, I began noticing a hot (inflamed) appearance on my toes and legs and it moved up my body to my forearms and hands that consistently burned and it looked like a sun burn, I tried to eat but the food made me nauseated and sick, my poops became small and soft, I began to feel dizzy and lightheaded and my stomach was irritated, and my tongue was really dry and pale.  I woke up in the middle of the night to the back of my head sweating pretty profusely onto my pillow.  I also had inflammation around my bicep and elbow crease.  It took me 2 days to go out and buy a thermometer to take my temperature.  The highest it got was 99.1 but who knows what my temperature was before that point?  Even with a normal temperature I was still having cold chills, and night sweats.  How is that possible?  After around 20 days the cold chills and the burning in my forearms and hands finally went away.

I started to have a quick little seizure/twitch like feeling in my neck on both sides.  When I put my hands on the area I noticed my lymph nodes.  I had been feeling for my lymph nodes this whole time, but could never feel them until then.  I noticed them in my groin, and my armpits too.  I also started noticing a loud ringing in my right ear too.  I thought if I confronted my anxiety/stress and told my wife that it would help with all my symptoms.  So I told her what I did.  It didn't help.  She and I are now in the middle of a divorce with children.  After telling her, I sought the help of a psychologist.  He couldn't help me either.  I tested for HIV 3 times by this point.  11 days after (3rd Gen), 17 days after (4th Gen), and 26 days after (3rd Gen) all negative.  By this point I started having twitches all over my body, I started having numbness in my forearms and hands and my feet, my gut started to rumble and vibrate and gurgle constantly 24/7, I started noticing more joint pain, and my fatigue and tiredness were getting worse.  I took a 31 day (4th Gen) test negative.  British doc said it was highly likely to exclude HIV.  I went back at the 6 week, the 8 week, and the 12th week and all were negative.  I tried another clinic at the 97 day mark- Negative.  I had another test administered by U.S doctors at 134 days (3rd Gen) and it was negative.  

I have tested for many other things too.  Negative for celiac disease, negative for crohn's disease, I've had stool samples given, and a plethora of other evaluations by my doctor to rule out anything else and nothing else is coming up.  I had a CBC initially done a few weeks after the incident, and my lymphocytes went down pretty drastically and my neutrophils were pretty high.  I just had another CBC done a couple weeks ago which showed my lymphocytes were higher than the last CBC, but not by much.  My US doc is firmly convinced I need to test out to 6 months.  He also believes that a lot of my ailments could be due to stress.  I just got sick recently 3 days ago with a fever, a headache, and a cough which produced some green phlegm.  I'm still dealing with everything else listed before.  I have seen White plaque on the sides of my tongue which looked just like Hairy leukoplakia, and today when I ate buffalo wings my entire mouth to include my tongue and inner cheeks turned completely white.

I don't even know why I wrote all this.  It's not like there's anything on here anyone can say to help anyway.
41 Responses
480448 tn?1426948538
I'm sorry you've been through so much.  You can most definitely cross HIV off the list.  For one, you actually were never at risk in the first place, even if the partner you were with was infected, and even with the abrasion.  Condoms work, and HIV cannot be transmitted during sexual contact through cuts, abrasions, etc.  

Now that you've tested, MULTIPLE times, with very sensitive tests, you can take that to the bank, even if you had your doubts.  You do NOT have HIV.

Quite honestly, I would steer towards more of a psychosomatic illness, considering all of the medical work ups you've had, all with negative or unconcerning results.  I know it's HARD to imagine that stress and anxiety would cause so many real physical symptoms, but it absolutely does.  Your course pretty much follows along with most of the typical cases of HIV related anxiety.  You immediately regretted your sexual encounter, and began associating everything you experienced "symptom"-wise thereafter to somehow being related to that encounter.  

A LOT of the symptoms you describe are typically seen with anxiety, and some of the things you've assessed may indeed not really have been an abnormal finding (like your oral symptoms)...but after reading about HIV, you've now begun associating them to HIV (ie the OHL).  The mind is a very powerful thing....it's very possible to turn "nothing" into "something" after ruminating and worrying about long enough.  

My advice to you would be to stop testing for HIV for starters, you do not need anymore tests.  You definitely do NOT have HIV.  Continue working with your doctor if you continue having symptoms, but also, get involved in an intense therapy program.  You need to start learning how to dismiss some of your anxious thoughts, which isn't easy to do once you're on that roller coaster.

My personal opinion is that you are perfectly healthy, with the main issue being anxiety and stress, which are causing most of your symptoms.  I wish you the best of luck moving forward and finding some closure.  Let us know how you're doing.
Avatar universal
If I am infected with HIV then why in the world am I still testing negative?  I felt healthy up until all of this has happened.  I'm not a drug user, I hardly ever got sick before this, I exercised religiously, I eat very well, so what is going on?  
Avatar universal
Perhaps you have something but after so many HIV tests you would think its NOT HIV, it seems you might have something or it really could be stress and negative thinking, do you have symptoms of OCD as well?
Avatar universal
I appreciate your response.  OCD?  I've never been obsessive about anything in my life, but now, I'd say I'm definitely obsessive over it.  If my doctor could say: "Dunkel, we found what's been ailing you" I wouldn't be so obsessive.  Every individual knows their own body and when it just doesn't feel right.  I've dealt with stress many times before this.  Some anxiety I could control, and some I couldn't.  I know what my body does when it's stressed.  What I have experienced in my body for the past 145 days hasn't just been stress.  In fact now, I'm not nearly as stressed as I once was.  I've taken a few more tests recently testing for Rheumatoid Arthritis, and some other autoimmune diseases.  I also had an ultrasound of my liver and gallbladder since my stools have been yellow and coffee ground looking and I've also had elevated bilirubin in the CBC.  So the Doc was thinking maybe it was something to do with my liver or gallbladder...  I haven't heard anything from those results yet.  My body is bruising so easily, and the bruises are taking a while to heal.  

I have a really hard time believing this could be an autoimmune disease.  I have a really hard time accepting that my body is getting punked out like this.  If this was HIV, I thought I'd be asymptomatic at this point??  I'm really confused!  Do I need to build up the antibodies before I get to feeling better?  If it's not HIV, then there's literally 1 disease I have researched that's out there that can have such a systemic affect on a persons body and that's lymes disease.  But I have never had a Tick bite me.  I have not tried testing RNA or PCR for HIV.  I have thought about a few times, but it really is quite expensive, and mainly, all the doctors on here, and the ones I've spoken to have told me not to test with it.  

I just want this flippin nightmare to end.
Avatar universal
I ate some boneless buffalo wings yesterday and they completely turned my tongue and mouth white afterward.  A couple of hours later my inner cheeks had leukoplakia around them, and another round of white looking striations on the side of my tongue.  It looked identical to Hairy Leukoplakia.  It's gone away mostly today, but I can still see it a little bit.  I tried to get another appointment with my sexual health clinic but they didn't have any appointments until tuesday.  Because I have tested after their 12 week mark I know they're just going to dismiss what I am telling them again.  Is there anything else besides Hairy Leukoplakia that could be causing that?  How has the 4th Generation test I took so many darn times have missed this??
Avatar universal
I took another 4th Generation test at 151 days and it was negative again.  I'm still having a constant rumble/gurgle in my gut, still having mild twitching throughout my body, my right hand still feels lightly numb, my tongue still doesn't look normal, still getting cold sore and I've gotten yet another mouth ulcer, and I generally feel like I have a head cold with a irritating headache.  I am so relieved and happy that I am HIV antibody and p24 negative again but these damn symptoms won't go away!  I was perfectly 100% normal and healthy before all this.  

It's been 5 months.  Surely if I was positive for HIV I would know by now?!
Avatar universal
I am still trying to figure out what's wrong with me but I had some similar symptoms like you.  My story is that I had unprotected oral sex from a prostitute and then protected sex and I fingered her. .. the very next day my spleen was hurting,  then I started with fatigue a few weeks later,  then itchy anus and armpits.  Then a lot of ear pain,  drainage and ringing of ears.. swallen lymphn nodes that went away pretty quick a day or two.. I also had some fungus on my feet. The symptom that hasn't gone away is that I started having spams / twitching all over my body and after 10 months they are still here. . I have tested 3 times ELISA antibodies and 1 Hiv Rna test at 9MONTHS and still negative. .. I also continue to have mouth sores.. I DONT KNOW WHAT IS GOING ON
Avatar universal
I also had a CBC after 2 months of exposure and they were way different then normal. My CD4 count was always between 310 or 320 this last 5 years but on that date they dropped to 280 and my neutrophil were higher than normal and my monocyte dropped as well. .. now my CD4 count is back up to 307 but my monocyte is higher than ever before.  My doctor keeps telling me im okay at 9months exposure but I know my body and I ain't okay.. I have even had a colonoscopy to check for parasites or infection
Avatar universal
Dude-- You know you're good.  I don't even know how or why you're getting your CD4 counts?  CD4 counts are not given with a CBC.  Itchy Anus/armpits, lymph node swelling (that goes away) and mostly all of your symptoms have no implication toward HIV.  I have never once seen anything that said an itchy anus/armpits are a symptom or sign for HIV.  If all of your symptoms have gone away except your muscle twitches then you've really got to stop thinking it's HIV.  And I don't see anything about you having gut issues or anything else related to your stomach?  You didn't talk about having loose stools or diarrhea, so I guess I'm unsure why you would have thought parasites?  Anemia is something that causes muscle twitching/spasms and fatigue.  There's also Benign Fasciculation Syndrome.  Which causes fatigue, and twitching.  It's thought to be caused or come on by stress.  
480448 tn?1426948538
Oh, and another thing, definitely STOP searching the internet for any information about symptoms, illnesses, etc.  That's not going to help you and will only serve to fuel your anxiety something terrible.  Leave the doctoring to the doctors.
Avatar universal
Aside from the doctors on this forum I highly regard your input the most.  I appreciate you responding to my anxiety driven post.  It is very hard for me to accept that all of this could be from stress.  My lymph nodes did enlarge in the cervical chain on my neck, the right armpit, and in my groin.  I was very "body aware" after the incident and googled HIV and was relieved my lymph nodes had not enlarged until around the 3rd week when I was searching around for them and finally I felt them.  The doctor I have confirmed they had enlarged.  They haven't gone down since then.  I was informed that if I had OHL it wouldn't go away on its own.  I'm hoping the sexual health doctor who told me that was right.  That relieved me.  Everything else aside from my lymph nodes-- Sure, I would chalk up to immense stress.  

I just don't get it!
Avatar universal
Mouth Sores is anxiety and low Iron or some other nutrient.
Your body is not absorbing nutrient due to the stress, simple as that.

Are you also suffering from Loose Stools ?
Is your skin, mouth dry ?
Avatar universal
I am currently going through the same thing, I have tested negative well beyond the 90 day mark and will test again tomorrow with an Elissa test at the 8 month mark. I too had sex with a sex worker and it was HIGH RISK, unlike your situation, however even though the anxiety was killing me I never told my wife, I told my Bro instead who was very helpful. Moral of the Story - never tell your wife !!!

You need to get on Anti Anxiety meds and start seeing a therapist once every week. No matter how positive your mindset is you cannot alleviate the anxiety on your own, trust me I tried....and my colleagues tell me Im the toughest salesman they know.

The Therapy and positive thinking will help you to some degree but anxiety causes chemical changes in your body and that's why you need the meds.

I am happy to liaise with you personally if it is required, trust me talking to people with similar symptoms helps. My list of symtoms are:

HI everyone,

Thank you in advance for reading my thread.
I have posted several times on this website under multiple boards i.e. HIV, Adrenal Fatigue etc. and am essentially looking for someone with similar symptoms to mine.
In November 2013 I had a high risk exposure to a female. I eventually spiralled into extreme anxiety thinking I was HIV positive, in fact I was sure of it. I was tested 7 1/2 weeks after exposure with a PCR and Elissa test and it came back negative. I tested again with Elissa at 4 and a half months and it was negative, I have been reassured many times by Doctors, Healthboard members and some other hotlines that I am conclusively HIV negative if I test negative after the 3 month mark, however new symptoms arising always put be back into the anxiety. For the last 8 months the following are my symptoms:
Hi Everyone,

I thank you in taking the time to read my post.

I am desperately seeking answers and any advice would be greatly appreciated.

Hi Everyone,

In November I started an extremely anxious phase where I thought I had HIV, got tested with a PCR and Elissa test at 7 1/2 weeks post exposure and was negative, got tested again at 4 1/2 months and was negative. I have put my anxiety aside now but I do have major digestive issues as my body is not absorbing nutrients. Blood tests showed low iron and Vitamin D, I feel fatigue most of the time.

Symptoms Include:

1) Extreme Fatigue and sleepiness - This is recently being relieved after I started sleeping in the afternoons, sleeping has really helped my energy levels.

2)dry skin, dry mouth - Patchy skin, some scaling (could be psoriasis not sure). Dry mouth started after a few months, I was still very anxious.

3)hair falling - This is getting better as I have greatly increased with Vit D intake

4) Chronic Diahhrea and Malabsorption - food is coming out as it is and the Diahhrea has caused Haemerroids.

5) Night sweats if I have a high carb meal.

6) Left Toe is numb.

7) excessive DANDRUFF - I am able to clear it for a few days with betadine, this is some kind of Iodine thing which acts against fungus.

8) After I work out I have a delayed Post Exertion Malaise which starts on the second day of working out, I have heard this is a sign of Chronic Fatigue.

9)I have a stiff back when I get up every morning if I am not on Digestive enzymes.

I have had 3 CBC's and 3 stool tests, no sign of Candida or bacteria.

TSH, T3, T4 and Cortisol 4m all normal. No Celiac disease, ESR levels are normal.

Avatar universal
Can I ask when you say high risk what do you mean eg unprotected, condom break, was it sec worker?
Avatar universal
To nursegiel6572 - I suffered headache from 4 days exposure to day 12 or so. It was tension headache and though I was eating I had stomach ache. My headache worries me because I had a genuine exposure. However I also have been in constant fear and anxiety I believe can cause physical symptoms though I have trouble believing as my head hurt for a week. One dr and other people say it's not likely ARS and also too early. I struggle to believe any of this and am convinced I'm ill. I'm not a hypochondriac either rather a fairly level headed person. I had small tear in condom which let semen out. It was with an Asian sex worker. Dr said even if I wasn't protected the change of female to male we're sub 1%. Again I don't rely in this. Can anxiety cause a one week headache? My wife is a nurse and I told her. She feels that my body is in fight or flight mode and initial defence is the headache, but it can't sustain forever so subsides. It is gone but I get a little but the last few days as I further stress over this encounter.
480448 tn?1426948538
Please start your own thread.
480448 tn?1426948538
I see you already have.  
Avatar universal
I'm still lost and helpless.  I've figured out it's Peripheral Neuropathy I'm suffering from, and potentially autonomic neuropathy as well.  No doctor has diagnosed me, but I have the signs for it.  My numbness in my hands and forearms, and feet have not gone away.  And it feels like they're on fire at night.  Plus the myriad of all my other symptoms are still persisting.  Due to having taken so many 4th Generation tests I really feel like if it was HIV-1 doing this then the Antigen portion of that test would have picked it up.  I just don't see how after me taking so many of those tests how it could miss it?  So I am going tomorrow to have a PCR RNA HIV-2 test conducted.  I hear HIV-2 has a lesser viral load, but if my symptoms are due to HIV-2 then my viral load has to be out of control because my body has been getting punked out for nearly 6 months.  I'm tired of feeling like this.  I need relief, I need this non-sense to stop.  I feel like if it's negative or undetectable it will blow my mind, but it's going to bring me closer for peace of mind if it is negative or undetectable.  And if it's positive or that it shows some copies, well then finally I'll know.  I'll post results when I get them.
Avatar universal
If those symptoms where due to hiv you would have been positive long ago after 6 moths. Hiv does not cause so many problems in just 6 months after infection. Do not get in this situation when you start diagnosing your self with terrible things. Anxiety leads to even more axniety and more axniety leads to more psychosomatic symptoms.If doctors can't diagnose a disease it propably means that you are suffering from anxiety and prolonged fear. Don't do this to your self.Try to talk to a psychologist and you will see that maby all those symptoms will go away the moment you will let all this pain and agony of those months get out of your system by talking to someone who knows how to listen.Try it and you will see.
480448 tn?1426948538
You're continuing to self diagnose.

The things you're diagnosing yourself with and associating with HIV are things you cannot self diagnose by reading the internet.  Plus, like Pink Floyd said above, the conditions you're worried about, when they're related to HIV, occur very late in infection, and usually when a person has transitioned to an AIDS diagnosis.  You wouldn't have all of a sudden developed HIV complications months after becoming infected.  

The neuro like symptoms you're attributing to PN are often seen in chronic severe anxiety.  You really have to STOP searching the web, stop testing for HIV (you don't have it), and start getting some intensive therapy.  Otherwise, you're going to stay trapped in this nightmare.  We see it every day, all day in the HIV forum.
Avatar universal
I went and saw Dr. Sean Cummings today and I gave in, and requested a HIV-2 DNA viral load test.  He believes it's not any HIV.  For my mind to be clear of HIV I needed to take that test.  I understand antibody tests are more sensitive these days than they were even 2-3 years ago, and I'm grateful for that, but it's always unnerving when you have symptoms, and what you believe to be a high risk situation.  And when you believe those things, combined with multiple websites, including probably the most reputable website (CDC) stating that it "may take persons 6 months to develop antibodies" I couldn't believe my results.  And there's really not been much reported about HIV-2 and how long it takes for ones body to react to it.  So I had all these 4th Generation tests which went looking for the HIV-1 virus and repeatedly came back negative, I was happy to believe that no way this can be HIV-1!  But I realized the 4th Generation test doesn't actively look for the HIV-2 virus, just your bodies antibodies to the virus.  I needed to take this DNA test for HIV-2 today in order to bring me the peace I need.  

I will get those results within 10 days from today.  If they come back undetectable or negative, then I am done testing.  And I'm going to breathe a little easier.  And if they are negative/undetectable I'm going to stop the worry and the fear of HIV.  And instead focus on relieving my stress and investigating solely through a doctor what else could be causing me so much physical grief.  Hopefully it will remain good news.  I will post the results no matter the outcome.  If it is negative I make a promise to do absolutely no internet searches or any perseveration on the matter again.  Instead only work with my doctor and believe the results of my tests.  I feel happier today, because finally I feel like I've done all I can do at this point.
Avatar universal
Good luck on your resaults man. We are all hoping that you willl get through this.I am sure your resault will be negative! Don't give up :)
Avatar universal
I appreciate that man.  I appreciate everyone's words and candor.  This website has been a Godsend.
Avatar universal
Still haven't gotten the viral load results yet.  I had a CD4 count done.  Doctor told me EVERY result was perfect, and resembled a normal healthy immune system.  But it's only been 6 months, and I'm not sure what HIV does to those type of cells after 6 months.  What I do know is that I am still suffering from everything I have already mentioned still.  My fatigue and my skin in the back of my hands and forearms, and the heels of my feet are on fire every night.  It's getting very concerning.  Because I'm wondering if it's Peripheral Neuropathy.  It doesn't come and go, its been constant.  I am seeing a lot of my symptoms correlated with Fibromyalgia/Chronic Fatigue Syndrome.  But I don't know if they're the cause, or if there's another underlying cause to those symptoms, plus the neuropathy.  I'm seeing an internal medicine doctor on the 11th.

I really hope the viral load is negative, and I took my 6 month antibody test for HIV-1/ and HIV-2 a few days ago as well just to be extra sure...  If all is negative I hope I can focus on other causes for all this crazy stuff that is happening to me.  I'm tired of feeling like this.
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