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.

[mkh9]

Hi and sorry you have gone through all this.

Well you are definitely clear of HIV. So you can relax. You had the best test out there at the best time possible (5 weeks) that checks both antigen and antibody. The other STD's are clear. So since your symptoms have gone away except for the testosterone, dizziness and chest pain. You may have had some type of virus that is gone now and you need to focus on your current symptoms. I would get a EKG, and 24 hour monitor of your heart to check for an arrhythmia. Also, an echocardiogram. If these are normal you may want to see a endocrinologist to check on the hormonal in balance. It is really not good to take too much testosterone hormone. Better to work out at the gym and raise it naturally. They may have given you way too much or you just didn't need the supplemented dose. I can't say. Checking your blood pressure and blood sugar if you haven't would be good as they can cause dizziness as well if too high or low. Also, checking the inner ear with an ENT doctor. Do you have any pain in the ear or feel pressure on the ear? An ear infection would cause dizziness too. Do you get migraines? Migraines can cause dizziness, also dehydration and  electrolyte in balance. Some things to think about.
mkh9
mkh9

[Confused7765]

Thank you for your reply, in regards to a viral infection that is now gone. It seems to go through a state of remission-reemergence: when I get really tired, like I'll work late sometimes or work over 40 hours. I will develop the same symptoms that were originally there: low grade fever, night sweats and anal itching. The first time it happened it freaked me out so bad. It happened to me last week, but all of these symptoms were short lived. I feel like it has to be either viral or fungal?

No ear pain or ear fullness. I am sensitive to sounds like if someone hits a steel pan with a spoon, the high pitch will bother me.

The chest pain is relieved by exercise, and I have no problem playing 1-2 hours of soccer. Do you still believe it is cardiac chest pain? The doctor has diagnosed this as  Costochondritis. I understand there is something called fungal costochondritis, worried about fungal infection.

Thanks for your input

[mkh9]

Ok, the costochondritis can cause chest pain and it isn't anything to worry about. So, I was just checking. If it is an arrhythmia that is benign like mine it would relieved by exercise because lowering stress helps. Also, cutting out sugar and cafiene. No I don't think it is a systemic (body wide) fungal infection. Fungal and bacterial types are usually caused by IV drug use.  I think when you get run down you may get a virus like a cold and you could get something like jock itch. It sounds like over working and lowering your immunity.
mkh9

[mkh9]

Do you have a cough all the time ? fatigue? Or just the night sweats all the time and fever all the time? You could test your self for TB just to check. It is not that usual because you would be worse not playing soccer. But you could rule it out by getting a quantiferon gold TB test. Also, does the low grade fever just go up at night? Generally if it is 99 generally the body temp does go up in the evening. So if it is that low it is possible that it is normal. If you had a cough or other symptoms it might be something else. Have you been hiking? Get bit by a tick?
mkh9

[Confused7765]

never really had a cough. Fatigue is tricky because I'm so active. This doesn't really prevent me from doing any activities (soccer, weightlifting, running). I would say that after I do these activities I feel more tired than I did 1 year ago.

Fever and nightsweats, only when the infection goes into re-emergence like when I've stayed up really late etc. same with the anal itching.

I have also had a tuberculin skin test test every year for the past 5 years because I am a healthcare professional. All have been negative.

Never found a tick bite. I do spend a lot of time outdoors, not sure if it very prominent in Colorado. I heard that the test for Lyme disease isn't very conclusive?

Are you basing no systemic infection on the normal CBC values? I feel like there has to be another test to diagnose infection. I really can't get past the encounter 1 year ago, and that this is all somehow tied together.

Thanks again

[mkh9]

Sounds like you don't have exposure to TB. I am basing the no system fungi because you would be in the hospital if you had fungi in your blood. It is very serious situation. You wouldn't be playing soccer or working. The lyme test at IgeneX is a PCR based test and is very accurate. If you can get that one done you would be sure it is accurate. You can check out the test at www.igenex.com

The fatigue could be to over training if you are doing that much. Do you take in any extra protein? I take in Vega protein because it gives me extra vegatable protein and also has all the essential amino acids. I only take 20g of protein a day. I still get tired after the gym but it helps.
mkh9

[mkh9]

Coccidiodes is an exception to a fungal infection that is systemic but isn't that serious but causes dry cough, night sweats and fatigue. But you don't live in an area where it is. It is usually in dry valley areas like Arizona and Southern California valleys. In 2001 in Dinosaur National Monument in Colorado 8 people got valley fever. But it is unusual. If you did have it it will pass. They generally don't treat you for it.
mkh9

[Confused7765]

Is there any type of parasite that would cause something to this degree? My skin hurts above my penis, like in the pubic region, there are small little red dots there. Hsv-2 was negative however...

I'm hoping that this will pass, but starting to lose that optimism since this has been going on a year. But not ready to accept that there is no remedy.

Any reason to believe it could b bacterial? I find it hard to believe that it is a virus that no one can identify

[mkh9]

Could you have been exposed to anything at work?
mkh9

[mkh9]

Hi, do you have the anal itching mostly at night? If so

Symptoms of pinworm infection may include:

    Itching of the anal or vaginal area
    Insomnia, irritability and restlessness
    Intermittent abdominal pain and nausea

Pinworms often cause no symptoms.

You haven't traveled outside the country right? Or have your travelled to the southern U.S.? If you go barefoot in the dirt or sand there you can get some parasites. Do you have any animals?

You don't have diarrhea so that rules out a lot of parasites. But the anal itching could be pin worm you may have acquired from this person. Usually, you have it all the time but it does have cycles of where the pinworm produces more eggs etc. about once a week. So this may increase the worm burden. But usually you would be very itchy I think all the time. But you never know.

I'm trying to think of your symptoms and what would fit into your cyclic type of pattern. Night sweats can be caused by hormonal in balance as well so that is why it is hard to pin point. the arm weak ness is unusual.
That sounds more neurological. I am wondering if there is more than one thing going on. That the anal itching can be a dermatophyte such as jock itch that can get into that area or yeast. And that the other symptoms are not related. It may not be related to the exposure even though it came on at that time. I see this happen a lot on here.  
mkh9

[mkh9]

One of the things that causes weakness in the arms is an injury to the arms. Could it be from soccer? You could have gotten a nerve compressed or also. Did you get any injuries that you remember?
mkh9

[Confused7765]

It's possible that I was exposed to something at work. I work in the operating room. I have been tested through work for hepatitis C, TB, HIV etc.

I travelled to Jamaica last November and went to Belize 2 weeks ago. All the symptoms preceded those trips though.

Pinworms is a possibility I suppose. Would that cause the other symptoms? (Dizziness, chest pain) the anal itching would be constant for the most part. But it would certainly emerge at night at first.

No injuries to the arms that I remember, certainly no nerve damage or anything like that. My arms just feel weak and trembling. I can still lift similar weight than 1 year ago.

[mkh9]

Its possible that it is pin worm since it happens all the time and mostly at night. But that wouldn't explain the other symptoms.  But the chest pain is probably from the costochondritis. But If you want to you can also get the 24 hour monitor and echocardiogram done.  Just because you are athletic doesn't mean you can't have a structural problem or an arrhythmia. That could cause dizziness too. I don't know if that is the problem. But you could rule it out. I don't know if any of these are the right thing. It is just some ideas that you could check. Your symptoms are general so you would have to do more testing to try to figure it out.
mkh9

[Confused7765]

So If I understand this correctly you believe that

1) originally the infection that I had was killed by my immune system (Possibly the flu or something else) and the anal itching was unrelated, likely pinworm or candidal skin infection
2) Lightheadedness / Imbalance, chest pain, low testosterone, weakness, are not related to the incident in July, could be a cardiac or inner ear issue.
3) Re-emergence of fever, anal itching when getting fatigued is not concerning. based on lab results and general activity level.

My plan is to get a physical this year with lab work to see if there is any other infectious markers. It's really hard for me to believe that there is no infection. Continue to see Urologist for Testosterone, look into ENT and EKG for dizziness and chest pain.

Thank you for all the answers you give on here. I want you to know that it really helps me and others out to be able to come here for advice.

[mkh9]

Yes generally That is what I am saying. Regarding #1 the anal itching, could also be a dermatophyte (fungus such as one that causes jock itch).

I think that you should check these things you listed out. If they are all negative and you still have symptoms then perhaps see an infectious disease doctor. But a low grade fever not sure yet what is causing that. So hopefully, you will get some answers. Let know how it goes.

I hope it helps you get organized to focus on certain things. Perhaps this will help the doctor think about how to figure out what is going on. They tend to focus on certain things. If the do a CRP that will only show non specific inflammation. So that wouldn't tell much. I hope they do more than that.

You could try a over the counter anti-fungal spray or cream, for the anal area. Use it topically only (not inside). Get one that has Terbinifine in it not one that has fluconazole or ends in azole as lots of yeast and other fungi are becoming resistant to that. You would have to use it for about a week and a half several times a a day. Follow the package insert.
mkh9

[mkh9]

I said if you don't get a diagnosis with the physical see an infectious disease doctor. But you could just as well try a endocrinologist for testosterone problem. So, this is of course after trying everything else. I'm not really sure you need an infectious disease doctor. Maybe try the endocrinologist first. I'm mixed on this at this point. How about lets just see what happens after the physical, urologist , EKG (will likely be negative) but the 24 hour monitor is more important and the echocardiogram etc. If these are all negative we can regroup if you like.  Let me know if the anti-fungal spray/cream works.
mkh9

[Confused7765]

So it's been about 13 months since the encounter with this woman. I feel close to normal, but really i've never been the athlete that I once was after this.

The chest pain is gone, and the dizziness has been excellent over the past 3 weeks.

I'm not sure if it's just a matter of time to get better? Or if I should be doing something to monitor my health. No doctor has been able to find anything abnormal on any test, and I have done so many. I am not sure if I should continue to pursue a diagnosis? Or just wait until things get better / worse?

[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

[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.

[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]

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.

[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 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]

I am not convinced you have a disease per se. The dizziness may be an inner ear problem. Have you seen an ENT for that? They can test you to see what some causes are. Do you get vertigo when you turn your head or just off balance feeling? The low T should go up with the weight lifting. Are you eating enough protein with your workouts? I am glad to hear you are doing so much better. Try not to stress over the fertility issues. That makes it worse and stress causes problems. So just take it easy and I think with time things will work themselves out. If you do get a semen analysis follow their directions. If it is normal then you won't have to worry about the low T. That varies with many men and is not good to be too high anyway. There are many factors in pregnancy. A low grade fever of 99 is actually normal, especially in the afternoon. I would cut down on the caffiene and sugar. Sugar causes inflammation. Try switching to Stevia. My trainer told me to do that too. Have you had your blood sugar taken (fasting). The combination of that much caffiene and sugar may spike your blood sugar and make you dizzy. Or, the caffiene might be aggravating the costocondritis. So, cut way back on that to maybe 1 cup/day. But cut back slowly if you normally drink like 3 cups or more a day you will have to cut back a cup a week until you get down to 1 cup, or you will get a bad headache and feel bad.  Those are my thoughts right now.
mkh9