Posted , 27 users are following.
Anyone here have CMV Mono as an adult? Was diagnosed and trying to figure this all out. If you have a current CMV or have had CMV as an adult, can you tell me your experience please? Than you.
0 likes, 184 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Sam1900 Je_n
Posted
Lab Status update...
Cmv IgG - positive
CMV IgM - positive
CMV PCR - negative (negative!)
Yep my PCR is negative, which means I don’t have any detectable virus in my blood. Sounds like great news, but I’m still having chills, skin feeling hot, and nauseous! It’s been six months, no virus and still having symptoms. This virus is evil. Is anyone else in my boat 🚣????
deep1983 Je_n
Posted
Goodluck everyone
msclieb85 Je_n
Posted
Hello,
I am glad to have found this forum. I have been feeling like I'm basically dying for a few months now. All symptom's like CMG ebv and lymes. All standard tests come back normal but when i was tested for CMv, parvo and ebv it showed I have had them all in the past except lymes was negative. All with extremely high numbers but not active right now. My cmv was 8.3! Normal is 0.6 anyone experienced this like the virus doesn't show active but may be reoccurring without showing?
Sam1900 Je_n
Posted
Je_n Sam1900
Posted
Hi Sam, sorry I didn't see this message. How are you feeling? Still dealing with the CMV. Tested positive again recently. Been juicing, same as you. My immune system is pretty low, had a Sinus Infection for many months that took 5 rounds of antibiotics to knock out and almost was hospitalized. I have an underlying condition...I am nervous about flu season... Been taking Elderberry to boos immunity, as well as many vitamins. It's all we can do..
amanda35138 Je_n
Posted
HI jen, have you researched LDN? I have recently started taking it.
craig07920 Je_n
Posted
Hi Jen,
Oh I do hope so much that you can have a much more stable and settled period ahead, it sounds like it's been a terrible few months for you. Just a wee message to say am thinking about you and please don't give up Jen because this won't last forever. You have been through the mill by the sounds of it and remember it's okay to take a step back from the stresses of life, be that work, pressures, worries, any responsibilities that really don't need to be attended to right now - and just rest and give yourself time and space to allow your body that space to recover. I know finding that is much easier said than done.
Hang in there Jen - give the siberian ginseng and echinacea a good too if not already done so. Hoping and praying for a better spell ahead and remember you will get there - this won't win in the long term Jen and you will get back to full health again I truly believe it - thinking of you.
Craig
craig07920 amanda35138
Posted
Good luck with the LDN Amanda, it's not something I've heard of before had to look it up there to see what it was. Just hope it can be helpful and that the doctor is giving the right advice / help with this, always wise to get that of course.
Craig
amanda35138 Je_n
Posted
well, I’m into my 10th month now and still not back to normal
BUT, I am so much better than earlier in the year. Around the 6 month mark, something changed, not sure how to articulate it, but the “intense” pain and stiffness lifted and although I still ache/hurt quite a bit it’s not the same. It was such a strange virus, the pain seemed to start in my knees and backside and back of flanks and the progressed to the groin/hips and as they eased up to initially my right shoulder and top of arm and for the last few months the left shoulder and top of arm with a swollen (at times) left hand. With the pain came stiffness. I ended up losing 13kg altogether from this beast. My doctor suspected that I might have Polymyalgia Rheumatica as my sed rate and CSP rates were high along with the other symptoms. I declined the steroid treatment as I feel that’s just going to lead to other problems down the track from side effects and I wasn’t convinced that was it and as I said I do seem to be improving. The only thing that changed at the 6 month mark was that I started taking Monolaurin and Celebrex (prescribed) at that time along with the other supplements. I find the fatigue still overwhelming and heat/cold sensitivity a bit of a hassle and have to really watch that I don’t overdo things when I am feeling better as that really sets me back. I’m so happy I’m not walking like a penguin anymore. When I’ve gone back to eating carbs and sugar I get palpitations, so that’s a no no it seems. Lots of tests were done and nothing sinister showed up which is sometimes the reason both viruses reactivate, so that was a relief!
i think patience and just accepting this is going to be a long haul and asking for help along with the supplements and cutting out foods/drinks that didn’t agree with me has been the way forward. I’m looking forward to the day when I’m buzzing around again full of energy
Sweebee amanda35138
Posted
craig07920 amanda35138
Posted
Oh Amanda what a time you've been through, such a long haul I know I do remember the horrible and worst 10 months of mono myself. Absolutely you've hit the nail patience and just accepting that it takes time, but that it WILL get better, is definitely the way to go - it's much easier said than done though I know that for sure!
Thinking about you and Sweebee still as I know you have both had such a time of it - hang in there and sending love and hugs from the UK.
Craig
Sam1900 craig07920
Posted
Hope your back is starting to feel better. Thinks and praying for you.
craig07920 Sam1900
Posted
Thanks so much Sam, your prayers and continued support really is a great source of comfort to me.
God has been helping me, last couple of days have been more settled and able to do a bit more. I'm grateful for that for sure, just hoping things can stay more settled and stable and don't hit some of the real lows and pains of the last couple of weeks again as it's been so hard.
How are you doing at the moment Sam? Want you to know I'm thinking about you too and will keep you in my thoughts and prayers. Remember you're going to get through this virus man and get better - I still have absolute faith in that and believe that and God doesn't want you to worry about a thing, I believe He wants me to tell you that today and that He is going to sort this out and get you well again.
Thanks again for all your prayers and support - means everything Sam! Thinking of you too!
Craig
kaymono craig07920
Posted
Hi Craig,
Great to know things are improving for you. Will keep praying. I am back at work this morning after being in NYC last week. Had a lovely trip and besides the usual jet lag, I had no real issues while there. Did quite alot of walking also. Such a bummer I had to go back to work this morning as didn't sleep well last night - must be the going back to work anxieties. So today could be a little bit better. Hopefully during the course of the week once I get back into my routine things will be better.
craig07920 kaymono
Posted
Hi Kay,
That is great to hear you had a good trip to NYC, you deserved that for sure after all the hard times you've been through! Just watch about overdoing it with a long flight holiday etc and going straight back into work, remember get some rest in your daily routine if at all possible too at the moment, I know that can be easier said than done a lot of the time.
Hoping that you feel much more settled when at work and can get back into a normal sleeping pattern again, those flights and time differences can do that for sure - thinking about you still Kay!
Craig
kaymono craig07920
Posted
Thanks very much Craig. I had a better night's sleep lastnight though today still feel abit tired. I think I need a sabbatical :-)
kikisan amanda35138
Posted
Amanda,
I just wanted to reach out...I just read your update and am very inspired by your patience. I also caught both CMV and EBV in mid January 2018 - so I am at the 10 month mark too. I also caught Dengue Fever a month or so later while working in Jamaica. I don't know what combination of the viruses have messed with me but looking back at my symptoms and my decline I think EBV/CMV have been the big players. Like you I have suffered severe joint/muscle pain and weakness in my arms, legs and upper back. I lost 10 pounds but have now gained a couple back. My whole left side has been much worse than my right side. I have come to appreciate the way Chinese medicine looks a the body through meridians. It is as though one of my left meridians from head to toe has been greatly affected. My 24/7 headache is starting to let up a bit, which I must be grateful for. It is a fine balance of leaning into our compromised state with some acceptance while being mindful that we can and will regain strength and vigor. I too much look forward to the day when I can buzz around again with a form of energy I once knew....wishing us both a full recovery in the not too distant future.
Take care,
Kiki x
amanda35138 kikisan
Posted
Hi Kiki, i thought I'd add that i have just started taking LDN (Low Dose Naltrexon) as of 10 days ago. I started on 0.5mg and am now up to 1mg with the intention of increasing dosage every two weeks till i reach my sweet spot. I have read many studies and many anecdotal stories and believe it is definitely worth trying. today is day 10 and i think the pain level has gone down (it could be just a good day) but i am very hopeful. i will keep reporting back my progress/non progress!
craig07920 kikisan
Posted
Don't give up Kiki, every time I read your messages and your story it just hits home to me what a terrible year you've had - to not only be hit with one awful virus but three, I can only imagine the pain, suffering and lows you've been through Kiki.
Don't underestimate how massive an achievement you getting through this year has been - and also the powers of recovery your body has thanks to God! I still believe a new and marvellous chapter in your life is happening Kiki and that somehow this terrible time has been preparing the way for something amazing and wonderful that will blow this hard time completely into the water once and for all.
Hoping for a good day and period ahead and hang in there - believing in your recovery 100% still, I truly do and trusting Jesus always!
Craig