Posted , 5 users are following.
HELLO-
CAN SOMEONE ON THIS FORUM PLEASE TELL ME IF THEY HAVE HAD A MONO-LIKE VIRUS WITHOUT A FIRM DIAGNOSIS OF MONO? I FEEL ABSOLUTELY HORRIBLE AND CANT GET A DIAGNOSIS? KEEP LOSING WEIGHT FROM HORRENDOUS nausea and feeling of the flu - general unwellness every day. IM VERY DOWN AND JUST WANT TO FEEL BETTER. PLEASE TELL ME IF YOU HAVE EXPERIENCED This? I AM DESPERATE FOR HELP.
0 likes, 11 replies
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ashley44325 Guest
Posted
hi lisa, yes im at about 18 months and ive not had a doctor say for sure mono is the cause. ive lost about 3 stone in weight and im constantly in pain and all the other symptoms. they found ebv as a past infection twice with different numbers so they said it could be that! all other scans and tests have been ok. ive given up on a firm diagnosis now.
hang in there it will get better eventually
lori93950 ashley44325
Posted
have you felt terrible for 18 months ??!!!
im at month 9 and so ready for this nightmare to be over . most ebv tests show past infection mine was pretty high just had another blood test a month ago and it still showed as high. disappointing as i thought at least if it was lower would give me some hope .
ashley44325 lori93950
Posted
yes ive felt like im dying for 18 months! i started to improve at about a year then had more blood tests which showed a higher number past infection than the first time so i was told i must have had it again or it came back. no real diagnosis though, just a maybe. i have the feeling of being unwell every single day. my brother is going through exactly the same but at one stage his mono test came back positive. again tho on his next antibody test he showed very high numbers as a past infection.
like lori says, make sure you rest loads, and avoiding stress has helped me as well
Guest ashley44325
Posted
what were your symptoms though?
lori93950 ashley44325
Posted
gosh ashley you poor thing 18 months is so long to have to suffer... can i ask your age?
ashley44325 lori93950
Posted
yes its not been pleasant , im 36 m
lori93950 Guest
Posted
i know how desperate you are as i feel the same way. please know its not in your mind and this virus EBV can make you feel so so
ill.
i had the ebv test but not a mono test. i just assume i had a co infection of mono as i had ebv once before 11 years ago but without the fatigue .
both times horrible all the same . please try to get a full blood panel including ebv mono lyme then at least you know what youre dealing with .
so sorry you are feeling this way its absolutely horrific and takes a while to go dormant .i went undiagmosed for 5 months many blood tests all normal until i demanded an ebv test .
hang in there it will pass with time you just have to learn to live with it and accept it for now . im at month 9 now and you never get used to ferling awful. Get yourself immune boosting supplements and eat well try celery juice too and loads of rest .
Guest lori93950
Posted
lori - do you have horrible nausea as well? and a general feeling of unwellness?
lori93950 Guest
Posted
yes and i have absolutely no appetite i have to literally force food down ... never get hungry . yes i tell people its like having the flu jetlag a hangover and your time of the month all at the same time . ive sobbed in bed most days and the pain and anguish so unbearable.
private message me and i can perhaps be some support for you.
craig07920 Guest
Posted
Hi Lisa,
Have read a number of people on the site talk about their stories of going through a mono-type illness for an extended period without a firm diagnosis, I can only imagine how awful and frustrating and frightening this must be. Thinking about you Lisa, hoping and praying for your recovery - I do think it is possible it can be mono or something similar but if you don't get the blood test done in the first few weeks sometimes it doesn't show up, or just shows up as a past infection. It's something worth asking doctor about trying to get some more information on.
Lisa, I want to reassure you that if it is mono or a similar type virus to mono, it does get better and it can be very normal for it to go on for some time and feel so intense and awful, but then to make a full and complete recovery - it is often the way this horrible thing goes, it just takes time unfortunately but there is hope and there is recovery from it.
I for one have faith that you are going to make a full recovery, and whether this is mono or something else similar, I believe that God is going to bring recovery and healing over this situation in your life Lisa and that even if it takes a little while to reach full recovery, don't panic because you ARE going to get through this and get better. Again for me taking vitamins and herbs really helped, think might have mentioned some of the ones that helped me in another thread to you but if I didn't or want me to note them again just let me know and will do that.
Thinking of you Lisa - just look after yourself, get plenty of rest, try to stay calm and remember that things will get better and pray to God for help - He is the great healer. Hoping you can manage to get through Christmas okay and message any time, just hang in there Lisa things are going to pick up if won't always be this way.
Craig
craig07920 Guest
Posted
And of course Lisa do keep checking with the doctor, keep on at them and let them know everything that has been going on, ask them to keep monitoring things with blood tests or in any way they can - hoping so much they can be understanding, helpful and compassionate and offer some good advice and reassurance. Sometimes I find just going along with a close friend or family member can be helpful when feeling so low as it's hard to get everything across.
Craig