Avatar universal

At my wits end someone please help me!

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.
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Avatar universal
I also forgot to mention that I have only recently began experiencing pain below my left ribcage (spleen) and inside my right rib cage (liver) indicating some viral/immune system issue.
Helpful - 0
Avatar universal
I’ve had a lot of similar concerns. I’ve also tested for everything with EBV DNA the only thing that was detected though with titres too low to quantify. No doctor wants to see me anymore. It’s very frustrating but I’ve tested for everything else many times over.
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Me too, I’ve had all blood tests ran multiple times. It is very frustrating, worrying and stressful. I am in constant pain. My body no longer functions like it used to. I do not know what else to do. Doctors also refuse to listen to me.
My story is similar and it’s interesting that your lymphocyte count was low as was your wbc. Mine was too though it’s back in normal range but again on the low low side of normal. I’ve had a tongue coating every morning for over a year now and it’s scalloped in appearance at times. I am worried I am a risk to others yet I’ve seen experts in ID, STI’s etc and all has been fine. The most detailed tests for every marker have been checked and are all negative for over a year post exposure.

As per Foxhollowmonte below, I too have started following up on the medical mediums books on EBV. I am 15 months post exposure and have less symptoms now than at your current stage but I was almost the same as you a year ago.

I have been most concerned about HBV but it’s not shown in any test. But EBV may be the real cause though I am no expert.

But one thing I’ve learned is that most doctors aren’t experts either. They rely on blood tests but I know what I’ve been feeling.
Hi, the lymphocyte count is what really got me. 2 CBC ran a week apart shown a reduction in the absolute value. From my understanding, acute EBV usually shows an increase in the total lymphocyte value, which is why I feel uneasy about the whole HIV situation.

It’s reassuring to know I’m not alone though. The white tongue is also an issue. Some days it can be entirely white and hairy, other days the whiteness is confined to the back of the tongue with englarge pappillae, I’ve even had migrating bald patches or geographic tongue. Really bizarre. I’m so worried right now.

I guess all I can do is wait and be persistent and hope things improve. But the anxiety is a killer. I’ve started a regimen of vitamins and supplements, I can’t say for sure if they’re helping though. Perhaps it’s too early to say. Thanks for your insight and keep in touch.
Avatar universal
Hi. Yes I feel for you. I know what you’re going through. I’ve been sick since November with reactivated ebv. I’ve been on medical leave from work. It’s so debilitating. Yes I had the same problem with doctors. I have seen a neurologist an infectious disease dr a rheumatologist and a regular dr. Took so many tests and mri. I would say the neurologist has helped the most.  Very few drs know about this virus.
I’m slowly improving.  But it’s been terrible.
I too have so many symptoms that yes come and go.
Pains and aches
Severe stomach pains
Severe fatigue
My legs and arms feel numbness and weakness
I have trouble walking
Pains in head
I’ve been taking supplements that may help. Lysine, monolaurin, and reichi mushrooms. I also have been taking iv vitamin infusions at my neurologist office. And I’m eating very well.
Look up the medical medium on the Internet. He knows a lot about this virus. His information has helped me immensely.
Please let me know how you are doing.
Helpful - 0
I forgot to mention I have shakiness and twitching which is supposedly caused by the virus affecting the nerves. My pt says my nerves can heal eventually
Can I ask what may have reactivated your EBV Foxhollowmonte?
Hi, sorry to learn you too are suffering also Foxhollowmonte. I’ve lost count of the number of doctors I’ve visisted. None so far believe that a reactivation of the virus exists. I have also been refused any further testing so I have no way of supporting this through obtaining specific titre values.

Currently I’m experiencing lots of neurological symptoms which are quite scary and anxiety provoking: muscles twitches, vibrating (almost like an electric current type feeling in arms, pelvis, legs), burning pains in my spine, sharp stabbing pains. Of course doctors think I am mad when I try describe these.

You have my sympathy also this is by far the worst health experience I have ever endured. My doctor is not willing to refer to me a neurologist so I am now trying to use my medical insurance to find a specialist who can assist, albeit with great difficulty.

Once again, stay in touch. As a community we can share experiences and advice through these torturous times in the hope that it will eventually pass.
Hi yes I have the vibrating shakiness also and it is all so debilitating as I said. I literally spent about 3 weeks in bed. My main symptoms that are left are the aches and pains all over, twitching , shakiness, fatigue, and general weakness. My right leg is especially weak.
I know the doctors I’ve seen don’t seem to know that reactivated ebv will cause symptoms. Much less such severe symptoms. They do not know about this virus whatsoever. As I said you must read Anthony Williams the medical medium about ebv. He is very informative. Thank goodness.
I believe from what I read it gets reactivated the same way chicken pox can turn into shingles. It can reactivate due to times of high stress, hormonal changes such as pregnancy and menopause and a lowered immune symptoms. I’ve definetely been under a great deal of stress so that had to be a great cause.
Have you been prescribed any medication?
Sounds awfully debilitating for you. I hope you recover eventually. I will most definitely look into that. I have only been prescribed anti depressants and  anxiety medication, namely mirtazapine and propranolol as my doctor refuse to believe the symptoms I am experiencing are real. I also take B complex, vitamin D, fish oil, vitamin c. What medications if any, have you found most effective?
Well I’m definetely improving. So much better than I was a month ago. They said the virus has to run its course. I was prescribed gabapentin and vitamin iv infusions 2x a week and go to physical therapy. As I said the neurologist helped the most.
I also take monolaurin lysine and reichi mushrooms which are supposed to help with mono/ebv
The neurologist also told me to take fish oil and turmeric.
I’m glad you’re improving. Unfortunately my doctor will not refer me. I have taken your advice and ordered the medical medium book in the hope it will help.
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