Briefly, my situation is that I became ill 3 weeks following an unprotected sexual encounter late September 18 (yes silly silly me). Due to the severe onset of symptoms which hit me like a ton of bricks, I experienced (sore throat, painful lymph glands, oral & vaginal thrush, extreme sore muscles and joint pain, fever/chills, mouth ulcers the list goes on) I became absolutely convinced I had contracted HIV (my previous post goes into more detail). However, to my surprise I have repeatedly tested for HIV 13 times (Yes you read that correctly!) in the space of 4 months ALL NEGATIVE. Naturally the thought that I may be a 'rare' case such as a seronegative patient or even late seroconverter has crossed my mind many times despite the fact that I have tested using both 3rd and 4th generation tests to eliminate such possibility. I have not had a PCR due to the fact that they are expensive and against recommendations of my healthcare provider (I am now considering paying privately to rule this out indefinitely).
My problem is that I am still plagued with symptoms which are persisting and bothersome. These currently include:
- recurring sore throat with cobblestone appearance (sometimes feels like it is closing and my neck aches)
- ear ringing/spaced out feeling
- occasional sharp pains in lymph gland areas
- vaginal thrush (sorry for the TMI but this still recurs despite 4 pessaries and god knows however many anti-fungal pills)
- mild oral thrush (most prominent at the back of my tongue with swollen papillae)
- completely white (sometimes dry/cracked) sore tongue
- unusual neurological sensations running throughout body which I can only describe to the best of my ability as burning, internal fuzzing (am I going mad?) particular in arms, legs and within pelvis/abdominal area
- I have a small area on my right ankle which is sore to touch (I'm assuming some sort of nerve damage) it even hurts to put socks on and when the bed sheets brush against it
- widespread body pain locations differ each day
- muscle twitching (my eye has not stopped today)
Other symptoms experienced include: vertigo, nausea, headaches/migraine, pelvic pain, irregular menstrual cycle (only started following the onset of this illness although I do suffer from PCOS so maybe the timing was just poor), petechiae, tingling/numbness in various body parts but mostly legs/arms/feet.
I have came to the conclusion that most of my symptoms coincide with those of CFS, however I have never ever endured such illness previously. Oddly, some days I can feel completely normal then for the next umpteen many days I am in constant pain and discomfort all over my body with little/no relief from OTC pain killers/NSAIDs (fibro?). All of this started with an acute onset of illness in which my CBC showed low lymphocyte count (you can see why I was initially worried about HIV). Doctors refuse to repeat CBC so I have no way of knowing if this has rebounded into normal range. WBC was within normal range, although slightly on the lower end of the scale (4.9). The only thing I have tested positive for throughout a battery load of tests (including Hep A,B,C, syphilis, coeliac disease, CMV, ANA) is EBV. Also shown vitamin D deficiently, B12 was within range (apparently although I have been refused copies of my previous blood tests - shocking I know but I will not whinge on about my apparent lack of enthusiasm in the healthcare system and its affiliates regarding my situation). Doctors these days seem to wait until you are on your last legs and about to croak it before even attempting to help you (argh!)
I have read a lot about the effects EBV has had on individuals, and it is frequently referred to as the monster of all viruses (aside HIV). I recently visited an ID doctor who basically said I was depressed, anxious and my physical ailments were manifestations of my poor psychological functioning!! However, he acknowledged that EBV could be causing my symptoms but did not sound convincing as he went on the proceed that the presence EBNA antibodies indicates a past infection unlikely to cause symptoms (I am also aware that most of the population will test positive for this too). He refused to run a full EBV panel so that I could obtain various titre values so I am now in the process of paying privately for these, with little success thus far.
I really am at my wits end with the healthcare professional as they are unwilling to help me get to the bottom of this, yet have no problem prescribing anti-anxiety medication and antidepressants. My response to which was that I did not feel depressed nor anxious until I became severely ill with whatever this illness may be! Can anyone shed light on my situation or offer any guidance/support as I really do not know where to turn. My life has came to a complete stand still, I am only 24 years old and feel as though I am 80 with all my current ailments! It is having a significant negative impact on my daily life.
Could HIV still be a possibility? Or is that really irrational? I have now developed a deep health anxiety surrounding this for which I am seeing a therapist for, which I acknowledge is through no fault of my own due to my apparent negligent sexual behaviour which I vow never to do again. Do many of my symptoms align with those of EBV or infact CAEBV? I need answers and nobody appears willing to give me any! Especially those in the medical field. Apologies for the long winded approach, but I really wanted to clearly get across my situation. All comments welcomed. I would feel greatly reassured that there are others in similar situations as I feel completely alone and isolated dealing with all of this.