Over 2 years anyone?

Ears, nose and throat
1

Hi everyone, its been over two years from me and im in about week 6 of a bad relapse. Its getting quite worrying now that i can still be so sick after this amount of time. Has anyone else had similar experiences?

2

It’s been 2 yrs and 7 months for me and I’m still seriously restricted.

3

thanks Sarah, its nice to know you are not alone sometimes. It makes you panic doesnt it

4

Hi Ashley,

I hope so much that this relapse settles down for you very soon, you’ve been through so much and I can imagine it must be frightening to be going through a relapse and to bring back all the memories of earlier days in your battle against this horrible virus.

I remember having a relapse at just before the 2 year mark in which my blood test showed positive for mono again, for the very first time since the very first blood test I had. It scared me so much thinking I would have to go through all this again. Thanks to God only I didn’t, things did settle down within a few weeks, I think it can just be different for everyone Ashley, it might just be taking a little longer for your relapse to settle down but truly it will settle again - your body is two years down the road of equipping itself to fight this thing and in no way will it go back to where you were earlier on again.

Let us know how you are doing and message any time Ashley - just want to see you feeling much better and I still believe that you are going to and much better times are ahead - thinking about you.

Craig

5

hey Ashley – it’ll be two years next month for me. I still am not back to normal and have to super manage my diet and exertion. It’s very frustrating. I have taken some supplements that work to kill viruses and they have helped some. They also think that I have Lyme disease on top of everything else so I’m treating that as well. I still can’t exercise but I can manage a 10 minute walk every day most days. hang in there you are definitely not alone.

6

Hi - I’m at 16 months and I have experienced relapses throughout. It is very frustrating. But I have also learned to listen to my body and rest. I go back to my Immunologist soon to hopefully try a new regime to try to get the mono to go dormant. Best wishes to you on your recovery.

Stacie

7

Hi Ashley,

My daughter has been sick over two years, she can do more than last year, she really has to watch getting over tired. I had it for over a year myself and whenever I have a virus it seems harder to get over. Every year seems to get better though.

8

Hi, In Oct. 2000 I was told I might have Mono and prescribed a couple of rounds of different antibiotics. They didn’t work, ruined my last year of university. I did not recover until May 2001. Here’s the thing, my Mono test was negative. Since then I have had a recurring wide range of illnesses with no diagnosis. Now my doctor thinks I am crazy. As a last resort I have done some research. Mono usually lasts 2-4 weeks. Lupus can mimic mono. When I get these attacks I get ulcerated sores on the roof of my mouth. Almost like burns but they do not blister. I think I was misdiagnosed with Mono in my thirties. I have not had it confirmed yet because Lupus is hard to diagnose. I looked at images of the Lupus mouth ulcers online and they are a perfect match for the ones from my last attack. And yes men also get Lupus. I hope this helps someone get answers. Sincerely: John

9

hi Ashley
sorry to hear youre in the middle of a flare up. I am also pretty much on the two year mark and have had a flare up the past few weeks involving a slump in energy from 9-11am, severe nausea and just less energy in general. what have your main symptoms been? before this relapse were you able to live relatively normally again?
hoping you recover quickly from this latest relapse

10

Hi KS,

So sorry to hear that you’re going through a flare up in the past few weeks. Just want to reassure you that this kind of thing can happen with this virus, I remember at almost the two year mark too having a flare up, my blood test even showed positive for mono again for the first time since the very start.

It frightened me so much, thinking I may have to go through all that again, because it felt so intense just like the early days. But it did settle down very quickly KS, within a few weeks things improved and I felt much better again - so just want to encourage you and let you know that these setbacks do pass and in no way can the virus after two years cause the same harm or destruction as it did in the early days for the same length of time, it might feel just as intense at times but you will get over it much more quickly and remember your body is much better equipped to deal with fighting this virus now.

Thanking you too for your continued kind words and support for me, I’ve had a tough few weeks with back pain too and getting scan and results today so just hoping and praying that the Lord can pull me through that safely and without any upset.

Thinking about you and hoping the coming week can be a much better one for you - you will get back on track despite this flare up, hang in there, keeping you in my prayers.

Craig

11

hi, my main symptom has been stomach or right upper constant pain. no one can tell me what it is. i too get the crash in energy for a short period most days. i also have a lot of eye floaters, digestive problems, dizziness, and a general feeling of being unwell.
i started to get slightly better before this relapse but nowhere near a return to normal. im still not confident enough to drive or return to work.

12

thanks mono, i hope your daughter feels better soon! at the moment it feels just like it did 2 years ago. i just feel like im dying everyday to be honest

13

thanks Stacie, out of all the doctors i have seen i think one had heard of ebv and im sure he googled what it was after i insisted on the test for it lol

14

hi lisa, what supplements are you taking? ive started on high doses of vit c but im a bit causious of taking a lot of things as my stomach is so painful

15

thanks craig, hope you are ok

16

thanks john, interesting, ill look into lupus!

17

Thanks Ashley, been having a bit of a tough time lately with back pain but God has been helping me. Grateful for that. Hang in there and hoping you are okay.

Craig

18

I totally understand that. I had gastritis in the beginning and had to have an endoscopy because they thought I had ulcers. Ever since I’ve been taking DGL and that has kept that feeling away. Although I do suffer monthly bouts of IBS. The main supplement that I’ve been taking since November is monolauren. The only improvement I’ve really noticed is that my relapses are shorter. I kind of have a base level of functioning which isn’t anywhere near where I used to be but it’s manageable. Then when I overexert myself or get any kind of stress I relapse for 2 to 3 days.

19

Hi Ashley,

I know how you feel, the worst feeling ever. I started drinking green tea and my daughter drinks nettle tea, it really helps with the inflammation. I also found that vitamin D helped also.

20

Thanks for the advice about green tea Mono too, it’s something I could think about for my back too perhaps.

Hoping that you are well and that your daughter and granddaughter are doing as well as possible at this time.

Craig