Mono for 14 months now
Posted , 7 users are following.
HI all. I am new to this forum. I found it after needing a pick me up after relapsing for the umpteenth time! Just wanted to throw out my symptoms and some things that have worked for me. The value of community is pretty vital when you have this virus so its about time I contribute.
symptoms:
All the usual suspects, headaches, fatigue, brain fog, painful neck and joints, never ending swollen glands and sore throat, etc. Some other ones not so common are daily hives, hair loss, bad tachycardia (rapid heart beating at 140+ for hours on end) and new allergies to NSAIDS and dessicated pig thyroid. I have had hashimotos thyroiditis since I was 22 (I'm 36 now). but mono has definitely affected my thyroid.
Prior to mono I trained and exercised A LOT! Which is to say i worked my job 50-60hrs a week and trained 10-15hrs a week - no I dont have kids. I competed at a high level in cross country mountain biking and some endurances races too. It's been devastating to have that all ripped from me bc of this virus. Like all of you my life is a 180 degree turn from what it was. I have experienced longer periods of "remission" during my 14 months but nothing back to normal yet. The first 5 months were awful and a blur. After that, things got better for a few months and I slowly started to resume biking and other activities but nothing at the level of before mono. Now I have relapsed again. I am determined on beating this and not having a year 3. Recently I contacted a naturopath friend of mine who also had EBV and was an athlete. She recommended monolaurin, cranial sacral work and a Chinese doc. i have been on monolaurin for 4 days now, taking 600mg 3x day. It def made me feel awful for the last 3 days but now i seem to be feeling a tad bit better. I also take liposomal Vitamin C. It's significantly more potent than reg Vit C and it def makes a difference. The Chinese doc gave me some herbal tea and pills that knocked my sinus infection out in days. And i see the cranial practitioner on Tuesday. My natriropath friend told me that bodily stress can build up and become a toxin in your body, even childhood stress which is why I'm seeing the cranial person.
Anyway, just wanted to chime in and tell a little about my journey. Overall my positive attitude has been the difference maker , I believe. And I know I will be healthy again, I just have to be patient and change my lifestyle. I may never train like I once did. And accepting that and the other perceived disappointments of this virus are keys to curing myself. After all, my previous habits brought this on... good luck to all and stay positive. You're not alone.
0 likes, 43 replies
craig07920 bianca79779
Posted
Hi Bianca,
Just want to say thanks for sharing your story and that I certainly empathise having went through a similarly hard time with mono several years ago, and to write to offer some reassurance that things will get better and you will get back to full health and training again, with some time.
For me the first year was awful too, and that first 6 months really a terrible time similar to yourself. My symptoms also similar to yours in the awful fatigue, low grade fever, gland pain and different aches and pains all over my body, and just generally feeling 'stunted' and not well. It is so frustrating the longevity of this virus.
Year 2 was much better for me, but I was still fragile and had some periods of setback / relapse too, but I want to reassure you that these become less and less as time goes on, and they don't last anywhere near as long as the initial stages. This can be very common at this stage Bianca and want to reassure you that your full body strength and resilience will return, and that's coming from me as someone who thought it never would at several stages. Things will get much stronger as time goes on and you will reach that stage where your body feels able to cope with stress, activity and much more physical activity as well - but just keep listening to your body and take it easy when you need to, that's still very important at this stage, but also remember you ARE going to get better and back to full health again - truly I believe that Bianca! I know it was only down to God's mercy I was able to get through such a horrible time with it in my life.
In terms of vitamins and herbs, here are some of the things that I found extremely helpful:
Hoping that the monolauren and therapies you have been trying can really help too Bianca. Thinking about you and please do message any time, as I remember only too well how awful it was to live through such a draining and frightening period of this virus.
And most importantly remember you are going to make a FULL recovery - I truly believe that given my own recovery experience after such a hard time and reading recovery stories of many people who it took into the second year before they saw a major breakthrough and went on to make full recoveries
Craig
lisa29739 bianca79779
Posted
Hi Bianca. I have a very similar story to yours – and I am on month 19. The first three months were awful and then I seemed to start to come out of it only to attempt exercising and completely relapse. The last year’s been filled with a good 10 days followed by a two week crash. Although my symptoms are mainly severe fatigue and muscle weakness and pain, low blood pressure, and shakiness and night sweats.
I started Mono Lauren a couple weeks ago – she had me on too high of a dose at 2400 mg a day. Made me feel like complete garbage so I backed it down to 1200 mg a day. I plan on staying on it for several months as well – because it’s also an antibacterial and there’s a chance I could have Lyme disease. I also take liposomal vitamin C and have tried cranial sacral work! Sounds like our doctors were on the same page.
I just started on a keto diet and it has completely fixed my blood sugar crashes and I feel a little bit better. Hoping this will be a big part of the puzzle for my healing!
I cant believe you were able to bike! I long for the day I can be physical again. Hope your turning point comes soon!!
bianca79779 lisa29739
Posted
the NP also said many people likely have lyme disease and are unaware.
What did you think of the cranial sacral work?
And I'm glad the keto is working for you. Cutting out sugar is huge! All diseases feed off of it. Good luck and I hope you stay on the high road:)
craig07920 lisa29739
Posted
Hey Lisa,
Just wanted to let you know I was still thinking about you and hoping very much that your turning point comes soon also. I can only imagine what you are going through with mono and the worries over Lyme too, I aim to continue to keep you in my prayers.
I still believe that there is a much brighter future ahead for you Lisa, even though it might not seem that way now, I just sense there is a burden that is going to be lifted soon and there is going to be new liberation / freedom in your life. Very much hoping, praying and believing this is the case in Jesus' name.
Hoping for a better week ahead and remember keep living one day at a time, today's trouble is enough for today so don't look too far ahead and God I believe is looking after the bigger picture for you and your future health. Hang in there.
Craig
lisa29739 craig07920
Posted
Hey Craig. I'm holding onto hope! Trying to find the positive in all this. And will definitely never take my health for granted again. A friend asked what the first thing is that I'll do once healthy. And I want to do a hike that's nearby. He had me print an image of the mountain and I'm using it as inspiration.
So far this week has been gentle. So thankful for that. And for you! Thank you for your uplifting words!
craig07920 lisa29739
Posted
Hi Lisa,
It's so hard to keep a positive mindset when things seem to not be progressing or improving at the rate you would want them to, even when you want to be positive and are generally that kind of person. But hang on Lisa, a change for the better IS going to happen I really truly and honestly believe that.
That is a great thing to have the image of the mountain as something to keep as something positive that you are going to do in the future. And even if it takes a little time to be well enough to do something as big as that, don't panic - because I'm believing you will get there.
Wish it was easier to understand why such trials hit and the reasons behind them all. Just need to trust God that He is a good God and He tells us that He has good plans for us, to give us hope and a future, something to hold onto and remember that these words are the truth even when you are not feeling at all good or it is difficult to see any light at the end of the tunnel. It might just be much closer than you think...
Hoping that things can remain settled this week, my week has been settled too and very grateful for that! Thanks for your kind words too Lisa, do keep in touch and of course message any time.
Craig
lori93950 bianca79779
Posted
i too was working out like a maniac when i got this so i see a correlation here between that athletes and contacting mono .
i do hope we can get back to where we were some day soon .
i also had ebv 12 years ago but with no mono so i worked out the whole time . it was mainly mental that time though.
for me the first 5 months this time werent terrible as i was undiagnosed and kept working out although i was dizzy and tired. once diagnosed i stopped and thats when things became terrible . im now at month 10 and things have very slowly getting better ...but its really slow. i still feel awful most of the time but my walks have become longer and i can stay up later . the mornings until about 2pm are still the worst .
i may go back on the monolaurin as at first i was taking too much .. made me feel awful.
i know how hard this is for people that trained really hard ...its like a massive joy of our life has been taken away. exercise always been part of my life and getting used to not working out has been so so tough.
floradix is a great vitamin tonic too i stopped taking it for a few days and relapsed .
Guest lori93950
Posted
When mine hit I had been working out like crazy.....and had a VERY stressful event. Hmmmmmm.
Guest lori93950
Posted
I tell everyone that recovering this is like smaller baby steps......teeny tiny baby steps LOL
bianca79779 Guest
Posted
lol! I may liken it more to teeny tiny crawling 😃 No one gets it unless they've had it.
I miss working out so much! Just pushing your body to the limit and the feeling of accomplishment and good fatigue. some day we will have it back. Until then I'll do my best to accept where I am now.
good luck!
lori93950 bianca79779
Posted
we must get it back ! obviously start off slowly once we're feeling better. i see 80 year olds running ... so disheartening when all i can do now is walk
bianca79779 lori93950
Posted
lol! Yes I'm shooting for the national championship in mtn biking, age category 70+!!
When we're all elderly we are gonna dominate sports!
lori93950 bianca79779
Posted
i hope to be better sooner than 70 ! you mentioned staying positive how do you do that ?
i am going into month 11 soon and although for many months now ive just said to myself hunker down ...rest watch tv youll be better soon ..im now getting really down . ive seen almost everything on tv and just so fed up of feeling incredibly ill .
bianca79779 lori93950
Posted
yes we will be better before 70! I am still able to work and I truly love what I do so that helps immensely. other than work, i take walks outside and in the woods. Being in nature makes me happy. On days I don't have the energy for that sometimes I just sit outside. I also read and cook a lot. Those two things relax me and make me happy. I often bake and just give away what I make since I clearly don't need those calories with my sedentary life. And I have dogs which always help to heal the soul. But I'm with ya, my first 5 months were lonely and depressing. I gained weight and couldn't do anything about it which added to my anxiety. Overall, you just have to accept where you are at the current minute, hour, day, week and know that your body is working hard to heal itself. give it positive thoughts and love in the way of healthy food that will enable it to heal. Think of your body as your bff and you will do anything to make it feel better. Getting upset and mad at it does no good. Lastly I researched a lot and tried to educate myself on all I could do to get well. That gave me a little feeling of control which I think is something we all lose to this virus.
Take care or yourself and hunker in for a long journey of self discovering.
lori93950 bianca79779
Posted
oh ok so youre actually doing quite well then ? if you can work cook bake ...i can barely do anything and im not in that place yet of loving my body right now.
im at the place of completely f*** ing fed up feel ill feel tired and ready for this to be over.
craig07920 Guest
Posted
I totally agree Wendi, recovering from this most definitely has to be taken very slowly and in baby steps! Just reading all of the symptoms and experiences you have been going through really hits home how horrid this virus is and what an awful time you've been through.
I'm very much hoping and believing that a turning point is not too far away Wendi, hang in there and remember you ARE going to recovery, even if it is in small steps at first, it will come and sooner than you think you will be taking big steps forward I hope and pray.
I too was very fit and active when I took this virus, it's amazing the number of people it seems to hit who are sporty / active people. You will get back to the things you enjoy doing again with time, you really will, I was able to and I didn't think that I would.
Craig
craig07920 lori93950
Posted
It's so frustrating when you can't do the sports / physical activity you love doing and want to do, I do empathise Lori and Bianca. I also was a runner but various injuries and circumstances the last many years means I haven't really been able to go back to that and I do miss it, but just grateful for walking as that has been a big help to me and means a lot.
Hoping very much God can help us to get back to the right form of exercise at the right time in our lives - praying for that in Jesus' name.
Craig
bianca79779 lori93950
Posted
yes I am out of the first 5 months of hell. During that time I was hospitalized and was at the doctor's office every week for some other weird symptom. So I definitely get it and feel ya on just wanting it to be over. But getting frustrated, angry and anxious about your recovery will only feed the virus. Your mental state contributes to your body's recovery, at least that's what I believe.
But here is a good place to vent and let the frustration out. We all know what you're going through and it F*!king sucks!
Hang in, it gets better with time and lots of self care.
Guest lori93950
Posted
SO much yes. I feel you!