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Looking for answers, completely stumped

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.


35 Responses
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1415174 tn?1453243103
COMMUNITY LEADER
See above plus it sounds neurological . Maybe get a second opinion.
mkh9
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1415174 tn?1453243103
COMMUNITY LEADER
Hi and sorry you are going through this. All I can think of is Epstein Barr. Did you do a complete blood count? Blood chemistries? It may not be related to the encounter
mkh9
Helpful - 0
1 Comments
I’ve had CBC done many times. It regularly came back with an elevated WBC count and elevated neutrophils. I made them refer me to infectious disease. Basically they told me there was nothing they could offer as far as an answer.

Elevated neutrophils apparently points towards a bacterial infection. But there’s no way to know what it was, my body likely killed it. But now I’m left with what seems like 250 different problems. Don’t know how I go on from here. If I can’t have my old life back , what’s the point in continuing this new one?

Epstein Barr, I guess could be possible, but no treatment for that as far as I know.

I contracted this disease when I was 28. In peak physical condition. How can my body be so damaged. It’s so unbelievably sad.
Avatar universal
This month marks year 7 of his completely life changing event. I’ve never been physically or mentally the same since this happened to me. I contemplate taking my own life regularly. No one can find an answer to my health problems. My body is weak and tired all the time, my brain is sick and depressed.

The doctors say that i had a bacterial infection that my body killed, and now there’s no way to know what it was. It’s so sad, I have no clue what happened after a one night thing of protected sex. I had on and off fevers for over 2-3 years. Still no answers.  The world is so much more terrifying than I thought.

Negative for all STDs, HTLV, HIV, TB, HEP C. I pray that one day I will understand why I’ve had to endure such torture and punishment. I pray that no one would ever have to experience this.
Helpful - 0
Avatar universal
Update: tested for HTLV and it was negative. I am very much out of ideas at this point.

Going to try to get tested for infectious causes for low testosterone and peripheral neuropathy.

I have no other guesses. Other suggestions would be helpful.  Thanks
Helpful - 0
Avatar universal
Do yourself a favor and research sski it's what will help you most. Sorry your going through this. Battled this many years.pottasium iodine will be your best friend. Also shampoo with T-gel. Helps alot. Rubbing yogurt on helps alot too.
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Avatar universal
Well it’s been 5 years since this awful thing happened to me. I’m now struggling with mostly still the testosterone symptoms and now I’m having neurological problems. Wavey lines in my left eye and prickling, tingling in my extremities. Seeing a neurologist in two weeks and afraid of what’s going to happen. I had an MRI of my brain and it was negative for MS or tumors. Also B12 was normal.  I’m convinced this is also related to the encounter I had 5 years ago. I now have a beautiful 1 year old daughter, but I’m terrified I’m going to give something to her or my wife. This whole process has been nothing short of an absolute nightmare for me. I hope there is a diagnosis and treatment plan soon. I know others are struggling as well. Any advice is appreciated.
Helpful - 0
8 Comments
I'm the community leader in the STDs and Herpes communities.

Nothing you describe here could be related to your encounter 5 years ago.

First, you've tested negative for everything. Your window periods are all good. (You know this already.)

You've had a daughter. This means your wife has given birth. During that process, she was tested for STDs, and was negative.

The only thing I can think of that may have not been thoroughly checked is your thyroid. You may have had a couple of tests done, but you need expanded testing for a full picture - TSH, Free T4, Free T3 and Total T3, Thyroid Antibodies, Thyroglobulin. If you have more questions about that, you can visit our Thyroid Disorders forum.

Thank you for your reply. My thyroid has been tested and was normal. I’m afraid that some unknown disease that I have acquired through this encounter. Tingling in extremities can be a sign of infection, just not a traditional STD.

What are your thoughts on HTLV? I’ve asked me to tested for this many times and no one will and they say it isn’t necessary. :(
You had protected sex. You wouldn't be at risk for it.

In any case, your risk would depend on where you live. It's extremely rare in the US, and more common in areas in Japan, the Caribbean, parts of Africa, the Middle East and South Africa.

Did you have all those thyroid tests done? If you didn't, your thyroid may not be functioning normally, and most doctors only do the TSH. You should check.

There is no such thing as a "non-traditional STD".

I absolutely believe something is happening with you. I don't think it's related to your encounter, or that it's an STD. I hope you hang in there and keep looking for a cause. Don't limit yourself to STDs - you'll do yourself a disservice and might miss the cause.
I live in the US. And I understand that it’s very unlikely, but I have no explanation for what has happened here. I feel that all the likely things have been ruled out...

My physical and mental health all fell apart after this. No doctor could find any cause. Just a series of elevated WBC count.  Total Hail Mary but could this be Lyme? If HTLV is not the culprit then I have no other guesses. I’ve seen probably 8-10 different docs including a infectious disease specialist. Still so lost.
Have you tested for Lyme?

At this point, I don't think you should rule anything out that you haven't tested for. If you haven't tested, get tested for it.

Have you tested for food allergies? Mold in your house? Are you exposed to any chemicals? Anything?
I have requested testing for Lyme and the doctors say that I don’t fit the profile for it.  Maybe this neurologist will be willing to test for it on Wednesday.

Not exposed to any chemicals. And I’ve never had any allergies that I know of. Mold in my house I guess is a possibility. I may have to just go to a functional medicine doctor. Every western medicine doctor I’ve seen is totally clueless about whatever this is.
You can buy a mold detection tool for pretty cheap at Lowes or Home Depot. I'd start there before calling in an expert and paying a lot of money. At Lowes, for example, they start at about $10 and go up to $90ish.  https://www.lowes.com/pl/Mold-test-kits-Cleaning-supplies/4294518335

They also sell them on Amazon, etc.

Allergies can develop at any age. A good friend just developed nut allergies in her 40s.

I'd also suggest therapy. I don't think you are imagining this at all, but having chronic health issues/pain, especially when it goes undiagnosed, changes you. I lived this.
I understand that HTLV is extremely rare in the US and that I had protected sex. But I have all these problems and the thing that baffles me is that it’s not on any testing panel anywhere.

So when I think I’m totally in the clear and these symptoms aren’t sexually transmitted, they really haven’t tested for everything. It just makes me mad. I am now married with a 1 year old daughter and I’m literally TERRIFIED of giving them something .

It just seems bizarre to me. All I know is that I’ve done everything possible to protect them. This is the life I live currently. Plagued by terrifying symptoms thinking it’s because of this encounter, and further paying for it through infecting my family. I’m currently in therapy and on lots of drugs. Who would have thought that a protected  one night thing would change me so dramatically.
Avatar universal
So just a quick update here:

I have been going back to my doctor for all the symptoms that I have listened above.

The pcp took a good look at the chest pain and determined that it was not pericarditis. He prescribed me a topical pain killer to help with this.

The PCP physically has inspected my ears and does not think that I need to see and ENT Doctor. Granted that my balance and dizziness has gotten much better in 2 years.

I asked about EBV or CMV, he did not think this was necessary because I do not have AIDS and I am not on any immunosuppressant drugs.

The symptoms I experience come and go, the testosterone almost seems like it's cyclical, some days it will feel good, others I will feel completely abnormal. I am taking clomid medication for this.

I feel like there must be a way to figure this out. I seem to be managing my symptoms and I am glad I have gotten better, but to be honest if I would not have, I probably wouldn't be alive right now. Still continually searching for answers, which is hard considering that no doctor seems to really have even a theory as to what has happened here. Any continuing advice is appreciated
Helpful - 0
Avatar universal
Hi.I read your comment. i also have same symptom after sex about 3 months ago.
I think your symptom is (Epstein-Barr virus; EBV)  or (Cytomegalovirus, CMV).
Because i had a convesation with many patient having same symptoms.
So I heard if these virus infect through penis, it casuse itchy, mild fever, rash, muscular pain, the scrotum burning sensation. I recommend you have a test for EBV, CMV.
Here is south korea. I looked for a treatment in here but couldn't find one.
I wonder what treatment is available in the United States.
So After testing for CMV and EBV, Please contact me. Let's exchange information.
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Avatar universal
Hi. I just read your worries.
I think your symptom is CMV(Cytomegalo virus).
Have you ever tested for CMV?  
Helpful - 0
1 Comments
thanks for your reply, I will look into it more. I am not currently thinking CMV or EBV due to my current symptoms and that I am not immunocompromised. Thanks again.
1415174 tn?1453243103
COMMUNITY LEADER
I have severe vertigo that is caused by a migraine not an infection. So I know dizziness and vertigo can be caused by inner ear problems (most common), a tumor behind the ear, certain drugs, low blood pressure,  and so forth. So that part of your problem may be caused by one of these things. Also, hormonal imbalances may cause some of this. You could also talk to an endocrinologist. I am sorry you are depressed by this. I understand and it is frustrating. I hope that it can be diagnosed soon.
Regards,
mkh9
Helpful - 0
1 Comments
Mkh6,

I had a small epiphany this morning. I am wondering if there is anyway that I could have Chlamydia or Gonorrhea, that wouldn't be detectable through urine analysis. I wore a condom, so maybe the bacteria was mainly on my skin and around my butt? And maybe the urinanalysis did not detect it because it wasn't present in the urinary tract? I know this is a stretch, but is it worth it go get a blood test for these bacteria?
Avatar universal
mkh9

I have not seen an ENT for dizziness, this is something that is long overdue. Unfortunately everything is so slow in the medical field. I am currently working on going to a fertility specialist.  The dizziness does bother me, but right now the low T and fertility are my main focus.

I eat a ton of protein, and I work out with more intensity that I ever have before, but I've recently gained about 10lbs, and really have changed nothing in diet, and if anything my workouts are more strenuous.

I've cut caffiene completely out of my diet and am trying to stay away from refined sugars.

The main thing that I just can't get over is that how someone can get so sick, have a very detailed story of what happened, and no doctor is able to diagnose or figure out what is happening here. It's something very hard for me to accept. I feel like the costrochondritis, dizziness and Low T are all from infection, but then there is the non-elevated white count. I feel extremely depressed about all of this, this has been going on for almost 2 years and I am starting to doubt that I will ever truly be back at 100%.
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
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
Helpful - 0
Avatar universal
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.
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
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
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
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
Helpful - 0
Avatar universal
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?
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
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
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
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
Helpful - 0
Avatar universal
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.
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
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
Helpful - 0
Avatar universal
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.
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