Looking for answers, completely stumped

[Confused7765]

Hello everyone. in July 2014, I had a protected anal sexual encounter with a woman. The condom did not break / fall off, etc. after the encounter I developed a huge range of symptoms which to a degree all continue today, 1 year later.

Weeks 1-3: immediately after
anal and itching under scrotum
Persistent low grade fever
Night sweats
Fatigue
Weakness especially in arms
Extreme anxiety (panic attacks)

Weeks 5-12:
Imbalance / dizziness (bumping into walls)
Tremor in hands
Chest pain under sternum (alleviated by exercise)
Sensitivity to sounds

Weeks 12 and on:
Low testosterone

The most prominent things today are low testosterone, dizziness, chest pain.

Here are the things I've done so far.

Negative for all STDs at 5 month mark (gon,
Syphilis, clym, hep, a, b,c, hsv 2)
Negative for HIV at 5,10 weeks (4th generation test) 12 weeks, 6 months (rapid fingerstick)
PCP ran urine culture, cbc (normal)
Chest x-Ray (normal)
Neurologist referral: tested for vitamin deficiency thyroid, and heavy metals (normal)
Internal medicine doctor: 2nd CBC, testosterone serum, thyroid (normal except for testosterone which came back at 435)
Urologist referral for low testosterone, tested again. Came back at 470 and 190.
Was put on a very small dose of clomid, testosterone increased to 1305.

What else can I do to get an answer? I am worried because this has gone on so long. I am able to live my day to day life, but I'm so distracted by my body that it is difficult to enjoy almost anything. Advice is appreciated. Thank you.

[Confused7765]

Thanks for your reply mkh9,

To answer your question, I have come a long way in terms of health goes. Before the incident on a scale of 1-10 health wise I was at a 10 no question. Immediately after i declined to about a 2. Nowadays I'm at about an 8. I can't really seem to get past that point though.

I still see the doctor regularly for the most prominent symptoms that I experience each day, which are dizziness, chest pain, low testosterone.

Interestingly, he told me to take an over the counter medication for heartburn 2x per day. Since I've been on this it seems my chest pain has been noticeably better. Could be just some kind of placebo effect, but who knows.

The dizziness seems to come and go with no particular pattern. I got very dizzy today after drinking a large coffee with lots of sugar in it. I'm not sure what that was about.

The low testosterone is what bothers me the most. My wife and I are trying to get pregnant and we have been for 7 months now. I'm concerned that whatever has happened to my body will effect my fertility, it is very hard for me to deal with. I work out about 4x per week lifting weights and playing soccer / running. I am planning to get my testosterone checked again and a semen analysis.

My problem is that I can address each symptom that I have, but I'm concerned that the underlying condition will always be there if they don't look for something. I fear that the longer this is in my body the more permenant damage it will have on me. This marks about 1 year 7 months living with this unknown disease. I try to fight hard everyday, but Its very hard to do.

[mkh9]

Please add any new information here. Well before we talked about you not having a systemic fungal infection. That you would have to have a high fever etc. The only thing you can do is if you  do get a high fever ask for a blood culture and fungal blood culture.  I thought you were doing a lot better?
thanks.
mkh9

[Confused7765]

Thanks for the reply,

As far as anyone around me showing symptoms that is a definitive 'no'. The only people I share bodily fluids with however is my wife, and she shows none of the same symptoms that I do. Even when I was very sick, the first 6 months she did not show any of the same symptoms, we would kiss all the time but we were using protection to avoid anything unknown from happening.

My symptoms now have been the best that they have been now, and it has been about 1.5 years. I am debating seeing an Infectious disease specialist to make sure that I have truly done everything to try to help myself.

[bhb89w]

Hey man, wanted to let you know I've had the same thing going on two and a half years. Got it the same way. I can tell you without a doubt it is not HIV or anything related. I tested again at 2 years to be safe and it was negative. I have only 2 symptoms left. Ibs (which is getting better) and minor sexual dysfunction in the mornings. Prostate vitamins and omega usually helps pretty well. Doctors still don't have a clue what it has been. I had most of the same early symptoms you did but most of those went away by a year and a half. I take an antidepressant at nights to help with sleep and stomach problems. I also take a medication that to one care of nerve pain. Main question I have is do you feel like anyone your around frequently has showed symptoms too? After having it for over 2 years and disscussing with other that seem to have the same thing, a lot of us believe it's it's spread through saliva or body fluids of any kind.

[Confused7765]

So just a quick update here, in the last few months my condition continues to improve. There are a few things that are still here to a degree

Dizziness (Better)
Chest pain (Better)
Shortness of breath (still annoying but better)
Anal / tailbone area itching (Better)
Low Testosterone (Better either from stress reduction or working out?)

All of these have gotton much better. I went to the doctor and he did a lot of tests to rule out Pericarditis. These were:

Basic CBC (White count elevated at 17) I felt feverish this day temperature was 99.1
EKG
Chest X-ray
a lot of other blood tests for cardiac injury, all negative
follow-up CBC white count returned to normal after 3 weeks.

the symptoms no longer really complicate my daily life, but they bother me mentally and I still have the occasional anxiety attack where I think it is HIV or an STI.  I no longer go and get tested because I was negative for everything post 5-6 months after the incident.  I'm hoping that thing will continue to improve and that I will be close to where I was before.

[mkh9]

Glad to hear you are doing so well. I guess if you are getting better it is a wait and see situation. If you have no symptoms then whatever was causing your symptoms may have been fought off by your immune system or you stabilized the hormonal problem or something. You could still get the palpitations checked whenever. They can come and go depending on how much stress, caffeine, sugar you have etc. But at least you are are the right track. Otherwise, try not to worry about it.
mkh9