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
Guest bianca79779
Posted
Hi. I have had a lot of similar symptoms. Like you the first 5 months were horrible. I spent 3 bedridden. I didn't train but did exercise. I have a large family and making sure my home was taken care of was hard. Since the 5 month mark I have had good weeks.....ones where I think "Oh ok, I am finally coming out of this" just to be knocked down. I have had 4 relapses that range from 4 days to two weeks. The last two I have had were because of a secondary illness (colds) that caused me to relapse. I have had a lot of digestive issues. I had IBS before mono with a bit of GERD and now both are pretty severe. When I'm not relapsing there is still some issue but it's not as bad. I have an internal tremor that never seems to go away now. Some days I only wake up with it. Some days it is all day. My doctor and the neurologist both think it is stress and anxiety related. It was something I didn't have prior to this.
It is funny you posted this today. I was talking with my husband last night that I need to seriously change my expectations.....at least for right now. I get extremely discouraged when I can't do what I was doing prior to getting this but it could be much worse. I can manage small things and that has to be enough for now while my body recovers (I am 9 months in) As long as I can do the small things outside of my house and all the normal stuff inside the house....for now that has to be OK and be the goal. I need to stop looking at what I did BEFORE this. I will get there someday but now is not that day.
I have monolaurin but haven't been taking it because my relapses have been "mild". By mild I mean I am not bedridden and feeling like death. Do you think I should still take it even if I am not relapsing? Also I am concerned with taking vitamin C since my GERD is so bad. Any suggestions would be appreciated. Thanks!
bianca79779 Guest
Posted
HI Wendi!
From what i was told by my naturalpath doc you should stay on it for months. Thats what I plan on doing. It can't hurt you to take it as it is only going to attack viruses and improve or maintain your immune system. So for me I will take it for the next few months at least. She also recommended MagSRT and Oceans Alive - raw phytoplanktons. Additionally she recommended the Co-enzyme Q10 which Craig mentioned and Vitamin Code - healthy blood. I haven't started these others yet but will today.
As far as your stomach goes I would examine your diet. Not knowing what you eat I'll just give you an idea of mine. I suffered from IBS before I was diagnosed with Hashimotos thyroiditis (low thyroid). After I began treatment for that my IBS greatly improved but I had many trigger foods that made me feel awful. 10 years ago I switched to a vegetarian diet and only ate whole foods - nothing from a box or package. while having mono I too had some stomach issues and since have gone gluten free which has helped immensely. But also due to the disease I needed better protein than beans and veg options so I have added fish into my diet and that has helped. So now I am and gluten free pescatarian and feel no stomach pain unless I ingest something I shouldnt. I know it's not an ideal diet for many peiple but I look at food as nutrition not that every meal has to be what I desire. I track my macros (carbs, proteins and fats) so I know what I'm truly taking in. That has been key to understanding what MY body needs. If you have stomach issues you have to know what you're taking in before you can identify the source(s) of your problem. I use the app myfitness pal to track.
Lastly Vitamin C is super powerful and is vital to our immune system. I would give the liposomal a shot and see how you react.
hope this helps:)
josh46287 bianca79779
Posted
I also have digestive issues even before my so called crash but they also started about the time i started feeling weak. I gave my regular doctor a stool test but have not heard back since i did. I am wondering if i need to ask them to refer me to a gastrologists or something just to see if i do have some sort of dairy or gluten intolerance. Also if i need to go to a nuerologists to see about my little tremors and brain fog. Most of you guys say you have the same symptoms so i wonder if it would be a waste of time or not to go forward with that.
Guest josh46287
Posted
I took antibiotics at the beginning of this because I had two different doctors say I had a sinus infection before I was finally diagnosed with EBV recurrence. My doctor tested my stool for cdiff but nope. I have had issues for the last 9 months. During my bedridden phase I could barely eat. I had to force myself. In these last 9 months I have lost 23 pounds. Total. I haven't lost any in months. I just stay here and fluctuate 3 pounds up and down. My appetite comes and goes. I have good days and bad. As for the neurologist......I went. She didn't find anything wrong with my brain. Chances are the EBV attacked my central nervous system and it needs to heal just like everything else. I have tremors......they are mostly internal. Mostly in the morning. Sometimes they are really strong....sometimes just a light buzzing. I call them vibrations. Everyone I have known with this has had the tremors but go see the specialist if you have insurance just to set your mind at ease.
bianca79779 Guest
Posted
wow Wendi that stinks! Taking antibiotics when you don't need them really kills the good gut bacteria and probably has caused some of your stomach issues.
I'm so sorry to hear about the tremors, but very relieved that its not anything more than the mono. It's truly amazing the vast reach this virus has.
Have you tried any meditation? there are countless studies on the healing powers of meditation, specifically improving brain function. I really want to be an avid meditator but admittedly I struggle. However, when I do meditate I become more relaxed and my anxiety decreases.
just ideas... 😃
lori93950 Guest
Posted
i had terrible shaking and it was very noticeable to others . its calmed down now and i just get it when ive done too much . its all really scary but i know a common side effect of this horrible virus .
craig07920 josh46287
Posted
Hi Josh,
One thing I tried recently for different reasons other than mono (prostate / bladder issue) was a food sensitivity test. It came up with details of some of the food intolerances I had and gave me some pointers of foods to avoid and ones to focus more on taking. Maybe worth thinking about something like that, maybe it could help identify anything in diet that could be contributing to the stomach issues.
Very much hoping for a more settled week ahead for you Josh, thinking about you still and remember mono does get better with time and you will get through this. Hoping you are feeling okay today.
Craig
Guest bianca79779
Posted
I have a hard time clearing my head LOL I just adjust my thinking to more happy things and that has helped. I also take Klonapin on an as needed basis. They (the doctors) all think it is a combination of EBV and anxiety. shrug
craig07920 Guest
Posted
It's not easy to clear your head Wendi and when going through this it can be so hard to think or feel positively, even when you want to or if you are naturally a positive kind of person.
One thing I've been trying lately is attending a Mindfulness Group. I've found it quite relaxing and helpful, it was something I would probably have scoffed at before but just taking small techniques can help you stay present and to cope and manage in the tough moments as well as the good.
Craig
bianca79779 josh46287
Posted
it would be a good idea to take out gluten and dairy for two weeks and see how your body reacts. if it has a positive reaction then you know those foods can't be tolerated right now. im curious to see how it works for you. let me know if you have progress.
Guest craig07920
Posted
Will have to check it out 😃
josh46287 Guest
Posted
I had a stool test and they called and told me all the results were negative have a good day. Well of course i wanted them to be negative but at the same time that doesnt really explain why my stomach has been messed up for two months. I believe that the test were negative but i dont believe that my stomach is acting normal as i am the one trying to sleep with it hurting and that is usually when i try to go to sleep and when i wake up instead of all day now.
Guest josh46287
Posted
That is when mine mostly hurts too. When I go to bed. I think mine is because of the antibiotics and because I barely ate for months. I couldn't. I was so sick at that point. My doctor wants to scope me both ends. I don't like medical procedures so I am kind of fighting it. My appetite isn't at all what it was before mono. As long as my weight doesn't drop anymore I am OK I guess. I also get stomach and colon spasms now. I just keep thinking along with everything else I just have to heal from this. I have a friend that is a couple of years in to this......and she lost 60 pounds when she had it bad. 30 with initial and then another relapse another 30 more. She still struggles with digestive issues and has had the scopes. Do you have the spasms too?
josh46287 Guest
Posted
No spasms just a little pain and my stool is really soft. Feels more like i got hit in the stomach when i lay down. I have been forcing myself to eat so it has stop my weight loss. I would like to be able to eat what i want though and not worrying if it is going to make me feel worse.
lisa29739 Guest
Posted
Hi Wendy- I had the stool tests too (negative) and in the beginning I had such horrendous stomach pain I had an endoscopy. GI doc thought I had an ulcer. Turns out it was gastritis (likely caused from anxiety). I started taking DGL (the licorice chewables that have the bad part removed) and it hasn't returned. I do suffer from ibs though. And I never had that before. I did a month of antibiotics (doxycycline) in November and it actually helped my stomach. I think I did have some kind of bad bacteria in there. I've now been gluten free for a month and on keto for a week and my stomach has been better. Also it could be the monolaurin too- as it kills bacteria and fungus as well as stops viruses from replicating.
I lost a ton of weight in the beginning but now am back to my normal weight. Just soooooo out of shape. I played in the snow in my yard yesterday for 10 minutes and I"m waiting for the relapse. But it was so worth it.
Guest lisa29739
Posted
Lisa.....I have had IBS since I was a child. This is so much worse LOL I am glad your scope came back fine. I have had multiple tests done.....GIs and had a nuclear scan of my abdomen plus I recently had a ultrasound of my abdomen....all my organs as my liver was enlarged for a couple of months because of the mono and all was fine. I might relent to scopes if this doesn't let up at some point. I also have gastroparesis.....but have had that for years. I am sure it is just what I have with the EBV combo.
As for physical exertion.....I am almost where I was pre-mono without the working out. I can clean for hours. I can finally make a meal. Well at least a few times a week. There were months where I couldn't cook at all. By that time of the day I was spent. I have Fibromyalgia too so before this I would have issues after physical exertion. It is like the mono took every issue I had before....and amplified it to the extreme.
My husband keeps pointing out my progress but this has messed me up so bad that I don't see it. I am scared to go places because I am afraid of a flare up. It has been limiting. I hate that being able to go out and eat is a huge accomplishment. But staying positive......because it helps. And because I know I am making progress even on days I feel like I am dying.
Guest josh46287
Posted
Josh.....I have the same problem. I have food anxiety so bad now. Always afraid of what it is going to do to me. I too want to be able to eat what I want and like I did before this. Even tho I had IBS prior I still managed to eat what I want even if I knew I was going to have intestinal distress from it. I can't do that now. Plus I can't eat as much as I used to either. 😦
craig07920 josh46287
Posted
Hi Josh / Wendi,
I definitely empathise with that in that it is good and a relief when tests show clear and negative, but at the same time it can also be discouraging because it still doesn't give any explanation for the strange and not nice symptoms you are going through. Definitely try and take the positives though that the stool test was clear and just hoping that these stomach symptoms can settle and of course don't hesitate to keep going back to the doctor for further help / advice - I know it's hard and wearying though when you feel like they're not doing much, I do sympathise with that for sure.
I hope very much that you are both able to find a balanced, stable and healthy weight, it's such a horrible and frightening thing when you lose weight due to ill health. Maybe trying to find vitamins and herbs that can help maintain a healthy weight is something to try if struggling with appetite right now.
Taking probiotics / eating yoghurts also definitely worth a try for stomach, as these can help give good bacteria and maybe settle things down. Also I think they say peppermint is a good herbs for the stomach too.
Hoping today can be a good and settled day for you both, thinking about you.
Craig
craig07920 Guest
Posted
It's so hard and humbling when you can't do the things you enjoy and it takes all your energy and strength to do things that before would have been routine Wendi. I really do empathise with that, and just grateful for all the help God has given me and gave me in recovering from this horrible virus, because I know there's no way I could have got over that on my own strength or wisdom.
Just really hoping and praying for turning point for you soon Wendi, I still believe that better times are ahead for you and that you are going to get back to a much better level of health again - Fibromyalgia must be such a tough tough thing to cope with too, and the mono on top of that I can only imagine how hard things must have been. But you are showing courage and remember these things when you are able to get out and do things ARE big achievements, and don't down-play how much strength and courage you have shown to keep trying and doing things in the most difficult of circumstances and when not feeling at all great.
And I'm believing God is looking after the bigger picture for your future health Wendi, you're not in this alone and just cope with each day for now and take things easy when you need to, and I believe you are going to find new strength and hope and health again and it's closer than you think. Hang in there.
Craig