10 Months Update
Posted , 9 users are following.
Hey all. Wanted to give an update at what it's like 10 months in with Mono.
So much has happened this last month. I had an inconclusive Lyme test. First test was positive but the Western Blot was negative. So I went to another specialist- an ND who specializes in auto immune and chronic illness. She ruled my Lyme test negative but was sure I was suffering from an auto immune disease which was making the mono linger. So a ton of tests later and NOPE! I fooled another doc. But I do really like her and we just did a salivary cortisol test to see if Mono screwed up my adrenals. Still waiting on that. And in the meantime she put me on a new supplement called Berberine. It does a lot of wonderful things for the body and we are using it to kill all the bad bacteria in my gut and then will build back up with probiotics. This will hopefully make my immune system run great and stop all this stupid inflammation.
So- the last few months have been ok. I've had good days and medium days. Mostly medium days where I'm either mildl-moderatley fatigued or wired and anxious and have brain fog. It's bizarre. There are a few good days with barely any symptoms which is great. But I usually end up fatigued with muscle weakness a few days later. No idea why.
I can't help thinking that I do have Lyme and how it's going to be this HUGE uphill battle to get rid of it because we caught it so late. Going down the rabbit hole of what a nightmare Lyme is is so awful.
However- I'm no where near as sick as I was the first 4 months. I'm not bed ridden anymore and I can walk around, run errands, take one flight of stairs, etc without much trouble. Still cannot exercise which is driving me nuts. And I have to get a good 9 hours of sleep at night. And I can't seem to tolerate caffeine yet. But- it is nothing compared to the nightmare at the beginning. Now it's just more being frustrated and irritated and blue that it's not gone completely. So people in the throws of it- know that it does get better. It's slow and frustrating but I think once you give in to it and accept that you have a mini battle to fight- and know you will be so much stronger on the other end- it'll help a lot.
Sending all my healing juju and good thoughts to you all. This forum has been the single most important part of my healing journey.
Lisa
1 like, 35 replies
Sweebee lisa29739
Posted
Hi all. Wishing everyone a speedy recovery. Im currently 9 months in, but still to have a positive Epstein-Barr blood test. Ive heard that it can take alot of blood tests for the markers to show up. Ive been to 7 docts and a specialist who is certain that based on my symptoms that dam Epstein-Barr virus has been and gone, leaving behind a train wreck. Just wondering how many blood tests it took for you to get a positive diagnosis. 🙏
lisa29739 Sweebee
Posted
Hey Sweebee! I was sick and I diagnosed for 5 weeks. Then I went back to the ER and the doc ran a mono spit test and it was positive. Then in December I had the Epstein Barr titers checked and two of them were super elevated.
Is anything positive on your tests? (Usually they check 4 different EBV levels).
craig07920 Sweebee
Posted
Hey Sweebee,
So sorry you have went through this frustration of not only being unwell but not having diagnosis confirmed with blood test. For me, the EBV test only showed up positive at the start within the first few weeks of feeling unwell, it took me about 10 months to start to see a real turning point and I had many more blood tests done during that time and they showed normal even though I was still feeling so unwell.
Really hoping that this is just the final stages of the mono virus for you now, just want to reassure that it is normal to go through this and go on to make a full complete recovery - I was so down and thought I never would but God helped me so much and my experience with mono is that the period you have been through is by far the worst and that the second year is soo much easier to deal with - just really hoping for a turning point and breakthrough in your situation really soon - hang in there it's so tough I know and thinking of you.
Craig
Sweebee craig07920
Posted
craig07920 Sweebee
Posted
Hi Sweebee,
Thanks so much for your lovely words, I really do appreciate it. Even though it was a long time ago I went through mono, I have been going through a tough time last year with other issues to do with my back and a few other health issues so I know what it's like to go through such hard times, and I do remember how hard it was to go through mono too and really want you to know that there is hope and recovery from this horrible virus!
I truly believe that you won't have to go through anything like what you have this last 9 months again, my experience was that the second year was a walk in the park compared to the first one - much more liberating and felt like health was returning - I really hope and believe that will happen for you too Sweebee. Just want to reassure what you are going through is normal and in no way does it mean you are stuck like this forever, things DO get better and recovery does come with this - it's just so frustrating it takes so long and when going through it it's so hard to see recovery when it goes on and on - but your body does get over this Sweebee and absolutely trusting in God that He is going to pull you through like He did for me - really I believe that!! Hang in there and thinking about you, just take things slowly one day at a time is all you can do when going through it, getting through each day is an achievement when dealing with the horrible symptoms of the virus it really is, but you will get there!
Craig