Hoping to get guidance on my situation here and see what my next steps should be, as my doctor does not seem to want to cooperate and I’ve cried wolf too many times for anyone to believe my issues.
On November 9th , 2011 I had what started as protected sex with someone of unknown STD status, only to learn at the end that the condom has broken. I also thought I saw a small trace of blood, but cannot be sure for a fact as it was a bit dark. I assumed it was mine because my period was about to start (it did start the next day). I worried myself sick for the next 2 days, went to a clinic which administered an anti-HIV PEP treatment which I stayed on for only about a week due to intolerance of the side-effects. In the meantime I got this person to test for HIV and he turned out negative, which made me even more comfortable with stopping PEP early. The doctor who administered PEP has OK’d me stopping as well. Then my worries were gone for the next week or so.
On about November 26, 2011 I came down with typical case of flu-like symptoms. I never get flu or feel really sick for more than a couple days and this felt different, so I knew I had a reason to be alarmed. It started with a vague pain in my liver area, with some light nausea, which I initially attributed to overeating at Thanskgiving dinner. Over the next few days I came down with a fever, drenching sweats, a cough, runny nose, and severe fatigue. I cleared most of the cold related symptoms within a week but my fatigue and liver sensitivity has stayed. I was also really pale and achy and could barely function at work all this time. Some of my symptoms that started around the time of this flu-like syndrome were changes in taste, red, swollen tongue, mouth sores, tremors, irritability, general malaise, severe neck pains, and loss of appetite, huge, sweating, swollen lymph nodes in neck. RUQ pain still persisted. I also got a very painful UTI with blood in my urine, which I never had before. I was treated with 3 day Cipro after which my bladder is still feeling strange. The most crucial part is when I met this guy I slept with a month after the encounter, in December, he looked severely jaundiced and unwell. This is what confirmed my initial fear of Hepatitis.
Since that time I went to a number of doctors, including my internist, ENT, infectious disease specialist. Was tested for all STDs, which were negative at 5 weeks (included tests for HIV & HEP A, B, C). Liver enzymes were normal the few times that they repeated that test, last time at 12 weeks post exposure, despite feeling sick and having RUQ pain for the past 2.5 months. Blood counts have been normal on all occasions (probably got tested 5 times in the last 2.5 mths). Got tested for EBV, CMV, auto-immune disorders, HIV, Toxoplasma, Hensellae, Lyme, Sarcoidosis, all negative. Chest x-ray was negative. Abd ultrasound was unremarkable. Infectionist visit was my last doctor visit which I hoped would resolve my problem, 12 weeks post exposure. I explained to her my fear of Hepatitis. She seemed to think Hepatitis was not my issue, but did the test anyway, only for Hep A and C, claiming that I already had immunity for B (I had shots done in the past). She refused to test me for HCV PCR saying that by now I would develop the anti-bodies. Then she tested me for a whole slew of things, LFT, kidney function, diseases like Rickettsia, food allergies, EBV, CMV, other infectious diseases that I’ve never heard of, did a blood culture checking for bacteria, all negative again. Its now over 3 months post exposure and I am still suffering the day to day debilitating symptoms which seem to be subsiding but very, very slowly, almost waxing and waning.
My suspicion still is Hepatitis, probably C. I know it doesn’t get transmitted often through sex, but gotta consider two factors against me here– a) the fact that my partner probably had it in acute stage when we had sex, and its easier passed during that stage; b) I did see some blood, which may or may not have been mine, not sure.
Here are my questions.
1) Where do I go from here, with my already impressive work-up I feel like all I am missing is the HCV PCR, which my doctors want to hear nothing of. Does it make sense to do it at this point, currently Im at 14 weeks post exposure. Or should I wait till the anti-HCV has more time to develop, if that is indeed what I have?
2) With the current presentation of my symptoms and all the tests done so far, how likely am I to have Hep C? I know antibodies take from 3-6 months to develop, but I read that people who start having symptoms earlier generally develop antibodies soon after. I’ve been having symptoms the last 2.5 months, and am not immune-compromised, yet no antibodies.
3) What else if not Hep C can this possibly be?
4) Where do I go from here? If I go back to my doctor he will put me on Xanax for sure, and will send me home saying that it’s all in my head. Should I find a different doctor? Should I keep monitoring my liver function, my anti-HCV, anything else?
Please advise, desperate for answers here.
it seems you have been worried about contracting some kind of STD for a while now, your posts go back to April of 2011 with different concerns...at some point you will have trust the doctors that you don't have HCV and move on to trying to figure out what you really do have, if anything at all...
You're right in that respect. I do worry about STD's and hence generally do not sleep around but in the last year I made two wrong decisions to sleep with people I barely knew. You would think the first one would have taught me a lesson, and for some time it did, but I guess I got off too easy. I am just worried because I never felt this sick in my life, and it's been going on for the last almost 3 months with no answers. I know I should relax and not worry and give it more time to either go away or develop into whatever doctors can identify. I just want to know what kind of monitoring I need.
And my ENT who did a CT scan of my neck which found multiple enlarged lymph nodes did confirm I have some sort of a viral process going. But since I was ruled out for a majority of other things that could be causing my symptoms, like mono, HIV, auto-immune, etc, and I do have persistent liver pain, then what else is there to consider?
they will only do the HCV PCR of you test positive for the HCV antibody...if you don't test positve for the antibody, there is no need to test how much virus isn't there...there are many organs by your liver, maybe start looking there?
Right upper quadrant pain can be due to gallstones, intestinal pain, pancreatitis, or other abdominal disorders. There are other area's to investigate instead of focusing on HCV which your doc already said you don't have. Good luck...
The liver generally has no pain nerve in it to feel pain. Aquiring HCV via sex is almost impossible. You have been tested for it repeatedly and all tests have come up negative. You have been seen by infectious disease doctors even for other disorders.
Without meaning to sound harsh in any respect, I think it's time you look more to a good psychiatrist to find out why you are so obsessed with STDs / infectious diseasese yet follow up with the same negative behavior and expect different results.
Perhaps they can help you with this negative obsession. You do not have hepatitis C. That's just the truth of it all.
I was tested twice - once 5 weeks post exposure, which I realize is too early, and second time at 12 weeks. I do plan to retest again, specifically at a 6 month mark just to be safe, but in the meantime there is no explanation to my symptoms. They did an abdominal ultrasound which was clear of any gallbladder issues like stones or blockages.
And what worries me the most is the guy I was with is showing signs of hep also, with jaundice and weight loss. Wouldn't that alone almost limit it to hepatitis?
And he is very promiscuous, as I later found out. I don't see him a whole lot these days, and this relationship will obviously not go anywhere so asking him to get tested would be very difficult. He is hard to get through as is.
Will, I was tested for a good half of these.
Possibly get tested then for the other half .....if not one of those follow the link...sooner or later you may get a positive test..
And Will, I do acknowledge a psychological component to my behavior and problems but my "OCD" can't explain swollen lymph nodes and feeling like you've been suddenly hit by a bus when a couple of weeks prior you were a totally healthy individual.
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