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Mononucleosis positive, EBV negative - still dizzy 6 months later

Hi,

I really need help and advice. I am starting to lose hope. My current symptoms are as follows:
- dizziness (feeling as just come of an elevator or airplane, not spinning around but a 'bouncey' type of feeling, with need to lie down)
- lightheadedness
- tiredness/fatigue (need to lie down), lack of energy
- above three symptoms temporarily resolve/reduce upon taking multivitamin, patient has a VERY good healthy nutrition, is not a vegan or vegetarian.
- periodic (about once every month or two) stomach problems like bloating, diarrhea, etc. This symptom seems to have resolved within the past 2 months for the most part. first two points are main concern, especially the first as this is CHRONIC!

History:
- 27 year old male, CBC comes out 'perfect' according to different, surprised doctors.
- have not had stool test yet, or ever since acquiring disease.
- no known allergies, minor hayfever.

Acquired:

February 2013
- Symptoms first began in 2013 February. Patient (ME!) had sexual relations (no penetration, but oral sex occurred) with young woman. Got Became very sick the SAME night, with lots of sore throat and upper respiratory infection.
- Symptoms did not resolve after two weeks - went to multiple doctors, throat swab came NEGATIVE for mononucleosis
- Mono spot blood test came positive after more probing. CBC was 'perfect.' All STD tests -ve 3 and 6 and 9 and 12 months after. EBV was NOT tested.
- Main distinct symptoms described: dizziness, fatigue, tiredness, phlegm in nasal cavities.
- Patient 'recovered' 100% after 8 months and resumed back to gym thereafter.

THEN.

October 2014
- End of September, had minor sexual relations (no penetration, no forms of sex, kissing). Was under a lot of stress.
- Patient acquired what felt like a cold/flu 2 weeks later. Took 6 days to what felt like full recovery, although noticed some periods of sudden fatigue, similar to when had mononucleosis.
- On the 7th day (october 21st), patient woke up, felt fine - upon standing up felt very lightheaded and dizzy and fatigued.
- Was very drained and tired for 2 weeks thereafter, but slowly recuperated.
- Had periodic bouts over the past 6 months with diarrhea, vomiting on one or two occassions. Stomach symptoms since improved.
- Occasional feeling of tingling/burning in feet and hands, lower back, or brief numbness, not often enough to warrant as complaint.
- Monospot test was Positive, EBV negative. All STD tests are negative. CBC is perfect.
- Balance test came back normal (?!?!!) but another specialist has said the doctor who performed this lacks 'credibility' and may need to be done by a different doctorl.

Since then, these symptoms haven't resolved, nor have they gotten better - although - they are not as bad as that day I woke up. The stomach problems as mentioned, seemed to have subsided.

This is getting difficult because I still have very low energy (6 months later), and this feeling as if I just got off a plane or am on a boat, is very bothersome. I can deal with the fatigue - the dizziness is what gets to me. I don't fall over flat on my face, but I must emphasize it is very difficult to deal with. I have a very healthy diet and have been improving my sleep pattern. My work is very low stress thanks to God.

My feeling is of the following:
- perhaps a parasite? lyme disease I read could be spread sexually. Have not been tested for this. stools have not been tested all this time.
- Perhaps CMV is the cause, not EBV? is there a test for this?

Please help, sometimes I feel like I am in a dream. Thanks.
2 Responses
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Avatar universal
i tested negative for EBV, but not sure what kind of antigen it was tested as.

i did have symptoms of mono initially in 2013, sore throat for a longtime, fatigue, off balance, tiredness, lightheadedness, etc. no swollen lymph node though.

but this second time around, i did have a swollen lymph node on the right side, but EBV was negative, so i am very confused. i am still tired these days, and something my doctor noticed now - my reflexes are too brisk, and i can feel it too, almost like tremors. i am just so exhausted.

i am seeieng the infectious disease doctor tomorrow, and a neurologist soon..will update then.
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
Hi and sorry you have these problems. My suggestions are at this point are:
the monospot means nothing. It is a worthless test.

Get a EBV test that has the Early antigen, the EBV nuclear antigen etc. But this will probably show past infection. 95% of people by adulthood have been exposed to it. But you could check it out to be sure. You don't have the symptoms of mono. This would be extremely sore throat, swollen lymph nodes under the neck, Fever, can have swollen spleen and liver, and extreme fatigue.

You could have lyme. Often the target rash doesn't show up. So you could have that done to also rule it out.

You may have an inner ear infection or problem.

I don't think it was spread sexually unless it is a viral infection.

CMV everyone has by the time you are an adult. I wouldn't worry about that.

Actually, a vegan diet is very healthy if you eat right.

So, I would check these things out and go from there.
mkh9
Helpful - 0
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