Strange symptoms..Severe mouth, gums and palate pain on top of feeling so weak and flu like..very sc

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I've been very ill since October 2017. Was diagnosed with active ebv in Dec. I'm 52 and had mono as a teenager. I just wondered if anyone else had a sore painful mouth. My whole mouth aches and my gums, teeth ridge and palate hurt and feel raw especially at night and face pain and sore throat. I am so weak i cannot function in daily life. I also suffer from brain fog and emotional numbness, will have extreme rigorous chills for NO apparent reason, extreme scalp pain, digestion problems & stomach pain. Experience numbness & swelling in my feet..I have little appetite, no sense of smell or taste. I am feeling helpless & hopeless that this is gonna last forever or kill me..has anyone experienced the mouth issues? I've been to dentist and no problem that he could find..I apologize for the "downer" mentality as i know many on here suffering also..I wrote this on my cell so may be hard to read..best wishes to all for returning to good health! Thankyou for any response..

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  • Posted

    HI Lesaco,

    So sorry to hear you're having such a tough time at the moment, I wish I had all the answers all I just want to say is remember there is hope and you will get through this, I truly believe that. It's totally understandable that you would be on a downer, it was about 10 years ago I had mono and it brought me so low at times it was awful. Oregano is a really good herb for mouth and throat issues I believe, even getting some oregano tablets might be worthwhile as well as multi-vitamin, B complex and any other immune boosting herbs. Vitamin C also of course.

    Thinking of you and hang in there - this tough time won't last forever.

    Craig

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    • Posted

      Hi Craig, thankyou so much for your response! I will definately try the oregano..I am at the point I have had no luck with all the drs ive been to (have a endoscopy/colonoscopy next week) I am willing to try just about anything! I appreciate words of encouragement you offered. I am trying hard to keep a positive outlook for future healing! Take care!
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    • Posted

      Hi Lesaco,

      Good luck with the oregano, yes worth a try for sure. I totally know what it's like when you feel like you're trying everything and just not getting anywhere. It's so frustrating and disheartening, time seems to be a great healer with this virus - just wish could accelerate things and praying that you can see progress soon to give you heart and hope.

      I do believe recovery will come Lesaco, hang in there and remember God knows better than us all and works for our good if we keep trying to do our best (and at times that involves just resting and allowing time for recovery).

      Craig

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  • Posted

    Hi, you are not alone. I’m in my 30s have almost all the synptoms for a over a year. Waitibg for my EBV blood test results which my doctor finally decided to do after a year of sufferings.  I hve so much problems with throat and moth. I have never had gum problems but now my gums have receded and I have to see a periodontist too. I feel like I’m 90 year old woman.  But what bothers me is that doctors cannot give me answers. 
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    • Posted

      Hi Christine..thxu for your reply..hate to hear your suffering for so long! Awful young for this crap! Will be interesting to find what your ebv results are..have you tried any medications or treatment of any kind? I am considering taking a short cycle of prednisone altho the dr doesnt think it will help he said he would precribe..also thinking of trying high dose vitamin c therapy for awhile with zinc..idk? Im at my wits end..have you had your vitamin b12 levels checked as i have read low levels can cause many of these issues (altho not my case)..hopefully we can find a solution or shake this **** off soon! Feel better vibes!
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    • Posted

      I have only taken antibitoics for 10 days and that was just a month ago.  My thoat was almost closed, my lingual tonsils were very swollen. The antibitics helped a lot but then gradually they start to swell again. So I don’t knwo if it’s the ebv virus that makes my throat swell or some other hidden thing.

      B12 low leves can cause all these symptoms. My b12 levels are ok.

      I have heard about high vit C doses. I tried to eat fruits high in vit C and got lots of bruises on my legs, I guess as a result of allergy.

      Feel better soon. I’ll post in here if I find anything

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  • Posted

    Hi i feel your pain im into week 13 and have had a wide variety of symptoms from body pains all over my body, swollen spleen, weakness,anxiety and at the moment are struggling with a stinging sore throat at the back left of my mouth, sore jaw, sore neck, sore ear and swollen glands it actually feels neverending however my body pains have lessend and my spleen seems to have shrunk back down to almost normal size. I just kept telling myself we cnt possibly feel any worse and that each day is a day to closer to recovery i totally understand about you wanting answers as my bloods showed for past infection so doctors are assuming it ls GF i dont think doctors no enough about this virus which is scary, ive seen a number of doctors who have told me a number of different things and i dont think unless they have had it themselves they know how unconfirtable it makes you feel it actually starts to take over your life but just keep thinking about all the people that have been through it and overcome it i have a ENT app next week so hoping they can help me abit more. I would deffo recommend a good multi vitamin along with herbal remedies doctors cant give any medication so anything is worth a try. 

    Wishing you a speedy recovery.

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    • Posted

      Thank you for reply. I am with you on all the different drs and the statement "it just has to run its course"..grrr! I am considering trying prednisone for a short time to see if may help my mouth and throat at all...I am glad to hear some of your symptoms have improved and would be interested what the ENT comes up for you..I have endoscopy/colonoscopy next week and then ENT next..Wishing you well

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    • Posted

      I also have had throat issues since day 1 went to ent and he scoped my throat and pretty much laughed me out of his office!! These Drs I think really have no idea about the length of time it can last and the bizarre symptoms that have come along with it!! I finally saw an internal medicine dr and I felt listened to me and did a full exam and more blood work to find out wh my face and head are numb all the time! The tests revealed I have extremely low b12 so I’m on a supplement  and go back in 3 months to retest and hopefully will take care of this numbness that has by far been the worst symptom!! After she looked at all my test results comforting me that I am suffering from ebv/mono!!’

      After multiple Drs appts and them thinking I was crazy, I finally have found a dr that listened to me and did not make me feel like I was crazy!! Listen to your body and find a dr that will listen to you!! At first I questioned myself if I was nutz!!🤦🏼???🤦🏼???

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    • Posted

      Ive heard about steroids too its worth ago please let me know how you get on? I will keep you updated about the ENT the dreaded words you dont want to heat when your in pain ‘have to let it run its course’ thanks for your reply.
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    • Posted

      Hi Jennifer the docs deffo make you feel like that so frustrating!! Please youve managed to get somewhere hopefully the B12’s will help 😊 next on my list is trying oregano/garlic for my sore throat.

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    • Posted

      Hey guys,

      Reading through the posts and empathising with everyone's views about finding it hard to find a doctor who understands and realises that this can take a longer time to recover from than their medical book might tell you!

      Christine really hoping you can get somewhere with the EBV tests and your mind can be put at rest and feel like there is progress. Poppy you are definitely not going crazy believe me, you're so right in saying each day is a day towards recovery - I know it sometimes doesn't feel that way but it's true and every lapse or bad day is actually your body getting to grips with it and the more time goes on the less these lapses become until you get to a point you feel like your old self again.

      Hang in there Jennifer and Lesaco too, just want you to know that there is hope and there is recovery from this awful virus. I went on for months and months without much progress, had a bad relapse after about 9 months where I was getting terrible joint and muscle pain, felt at the end of my wits but after 10 months it was like a switch went off and a big chunk of recovery happened in a very short space of time. So even if you've been struggling for a long time, remember there is hope and quite a sudden and amazing step forward can take place in a short space of time, even after feeling like that has been no or little progress for so long.

      Believing in God for the recovery of everyone on the site - without any doubt! Hang in there.

      Craig

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    • Posted

      Hi Jennifer, how are you doing? Are you taking b12 shots? Helping? Sry if i missed this in another post but the brain fog and headaches sometimes makes it hard for me to keep up..wishing you well. Lecasco
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