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Old 06-23-2011, 10:50 AM   #1
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Things I wish I knew back then!

Hello All!

I see SO many postings on here about the questions of STILL feeling so bad; like is it another case of Mono? Is it HIV? What is wrong with me??!!??

I had Mono over 10 years ago, I was 36 at the time. My doc said that somehow I escaped the nasty sickness and it decided to hit me FULL force with 4 children, a demanding career and a busy life. It brought me to my knees.. You know, some people have "the flu" and other people have "THE FLU" and are in the hospital fighting for their lives! Well, I was the latter of the two when it came to my mono. No one EVER explained to me that it was related to the herpes-virus family, and that it would never "just disappear". That it would at some time become "dormant", but never disappear; that over a period of time (LONG TIME for me), that the symptoms would become less and less. (As long as I got plenty of rest, ate a balanced diet, and took great care of myself)! Oh the things I WISH I knew back then! I would of healed SO much quicker, because we ALL know that worrying and stressing REALLY bad over something like this does nothing but makes you feel even worse and hinders your recovery!

I missed 5 1/2 months of work (thank god for sick time and FMLA)! I landed in the hospital twice; swollen spleen to the point of rupturing, jaundice.. and on the final visit; Guillain-Barre syndrome. One other issue that set in during all this madness/sickness was depression. I had never expierenced it before, so I was knee deep in it by the time my docs figured out what was happening. That in itself was horrible. I was afraid of life! This illness came in and stole my life from me and robbed me of any kind of normalcy and control I had in my life! Hence the depression.

My doc ended up sending me to an Infectious Disease Specialist, and from there is where I learned SO much about Mono. One of the MOST important things I learned was; did it come from EBV (Epstein Barr Virus), or was it driven by a CMV infection (Cytomegalovirus). After blood tests out the yang, we found out it was (as the doctor thought) from the Cytomegalovirus. This sickness stole so much from me. I really didn't start to feel like myself until about 5 years after first getting sick! When I started back to work, it was only part-time. It took all I had just to get ready and dressed in the mornings (thank god for our Nanny there to take over on the children part), or I couldn't have done it. Little by little, I got my life back. And when "life" started to get back on a normal keel, and I realized through the help of my doctor; that my recovery would take lots of time (given my age, career, children, etc..) my depression started to lift. My meds for depression were gradually reduced, and I began to "settle in" with life.

I SO wish I had seen a post like this when I was SO full of questions, fear and confusion. It would have meant A LOT to me! I am here for anyone that should have questions! I remember it just like it was yesterday (as the famous quote goes). And even to this day; if I over excert myself, don't get enough rest, get an infection of some sort, I can STILL feel the "old mono sickness"....

I hope I have helped someone with this post!
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Old 07-08-2011, 07:42 AM   #2
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Re: Things I wish I knew back then!

What a great post thank you. I got glandular fever (as mono is called in UK) when I was 37 (3 years ago) and like you it brought me to my knees, had months off work and in all honesty have never fully recovered. Now about to be tested for it all over again, because despite what people say it can come back as flare ups in varying degrees, got a high IgA level no idea if thats related or not. But I feel terrible right now, just like I did back then the first time I got it.

My life has changed complete because of this illness, I'm a very different person with very different needs now.

Lydia x

 
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Old 07-11-2011, 10:08 AM   #3
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Re: Things I wish I knew back then!

Hello...

I feel for you, I really, really do. It will take LOTS of time.. but to be honest with you; I have never felt the same. I feel much better, but I too still have flare ups.. And now they believe that I may have Lupus, which can be brought on by a "chronic illness" such as mono.

My best advice? Rest, eat right and MORE and MORE rest. You have to pay lots attention to nutrition as well.. I began taking a multi-vitamin and garlic supplements (boots the immune system). But you HAVE to make rest and nutrition a priority! High IGA's, yes.. me too. They can look at the titers and tell if it is a current or past infection.. and remember, Mono (whether caused from the EB virus or CMV) is in the herpes family. It never leaves your body. It will lay dormant, and with stress or another illness, or not enought rest, etc..etc.. will errupt again. But with time, it will not be as bad.. and when I say time; I mean just that! It has been a LONG haul for me!

How are you doing now?
Lisa
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Old 07-11-2011, 11:32 AM   #4
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Re: Things I wish I knew back then!

Hi there

to be honest I am getting worse on a weekly basis, the fatigue is really getting bad. I don't have the energy to walk my dog she had to be let out in the garden instead. I am still going to work, but thats just about all I can manage, when I come home I eat and then go to bed about 8 pm and sleep through to 6 or just gone the next morning, longer at the weekends. Last few days Ive noticed a mild tingling/numbness in my fingers and the feeling as if I am losing strength in my extremities if that makes sense. Definite brain fog, very pale with bags and dark circles under my eyes. Got a whole new set of blood tests this week, retest for glandular fever, IMST (whatever that is) and serology serum. Again don't really have a clue what that means. Also a chest xray this week, looking at my mediatinal glands. I thought maybe lupus, but other than a spotty rash in my hair which has almost cleared up now I don't have a rash. Guess I need to put my faith in my doctor and trust that he will get to the bottom of it.

take care xx

 
Old 07-12-2011, 11:51 AM   #5
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Re: Things I wish I knew back then!

Hi There...

Yes, I expierenced ALL of what you mentioned. The tingling really freaked me out. That ended up being the Guillain-Barre Syndrome. (Read up on this)! It can be so bad that you can't function, or where it will interfere with every day activity.. I really do feel for you. I know how scary this is, and it seems that you will never get better. And unless if someone has had it as bad as you, they don't understand! How long before the other tests come in? Please let me know what you find out...

Take heart, it WILL get better. It is a LONG haul.. especially if you aren't real young (this is NOT meant for grownups)! Our immunity is not as strong as the young, but you will come back from this.

Lots of rest,lots of fluids, eat good food!
Lisa
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Old 07-12-2011, 12:09 PM   #6
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Re: Things I wish I knew back then!

Thanks Lisa, means a lot to be able to talk to someone who knows exactly what I am going through, agree about the age thing, I'm 40 and this is knocking me about quite badly. Won't get the blood results until next week and it takes 2 weeks for the xray test results in the UK.

Bizarrely, I have been vegetarian for 28 years, but around the same time ad my first high IgA test result, I started getting real bad meat cravings, so 10 days ago I gave in, so now eating meat and fish alongside loads of vrg and fruit and got some supplements as well, I'm trying anything and everything to help make myself feel better. Just hope they find out whats wrong really soon. I will have to look up the GB sydrome, as I am never heard of it.

Lisa thank you, take care x

 
Old 07-18-2011, 07:54 AM   #7
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Re: Things I wish I knew back then!

Update:

Chest xray come back normal. Negative retest for glandular fever. Although the doctor wants to speak to me about a couple of the other tests. Got appointment tomorrow. Am rather shocked that mono test is negative as other than a few addtional systems feels exactly like it did when I had mono the first time. So that means the LDH and IMST tests were negative so it much be something showing up on the serology test. Am convinced its something to do with my immune system as I only have to be in the presence of someone with a cold for a short while and I end up with that cold (2 in the last 2 weeks)

 
Old 07-18-2011, 09:55 PM   #8
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Re: Things I wish I knew back then!

I have had the similar symptoms, tingling in hands, muscle aches, joint pai, rapid heart beat, fatigue. Been sick with mono for almost 2 months, which I tested positive for about a month and half ago, but was also sick about 8 months ago from mono which was confirmed by blood test and was only sick about a month then...but I had (cmv) cytomegalo virus 7 years ago and was sick for about 9 months with that. Missed 6 months of work...at least I had insurance back then..now no insurance and it seems the doctor I go to doesn't really care about what's going on with me because its a clinic and I pay on a sliding scale...I have told her about the cmv and I feel like she isn't connecting what I'm saying..I ask her is this cmv and she just says she will do blood work and just tells me its mono when I get results and tells me to rest..I've been resting and sleeping for 2 months. This is not as bad as when I had the cmv but its bad, I hate to think I have to deal with this forever since it obviously reoccurs..even though the doctors say it doesn't, but I beg to differ...after reading all the posts I am convinced that its all from the mono, I've been woorying that's something else was wrong with me. Went to er 3x becuase of rapid heart beat which I still have 2 months into it..ekg's all cam out fine..very expensive with no insurance, about 6000 dollars which ill be making payments on forever. I just wonder why the doctors say no those symptoms are not associated with mono, but I read about all these people with mono or cmv and they have the same symptoms...I really hope I can feel normal again soon and hope I can work in 5 days when I have to go back, because can't pay bills with no income...have even thought about trying for disability until I'm better but not sure if I can get that for this illness...anyways all your posts have been reassuring that I don't have something else wrong that its cmv or mono...thank you and bless you all.

 
Old 07-19-2011, 01:00 AM   #9
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Re: Things I wish I knew back then!

Seems the receptionist got it wrong, x ray clear, serology negative, retest for mono positive. Seeing him tomorrow. Think we are getting somewhere now. Although I still don't know if mono causes a high IgA level or not, but I intend to ask him that when I see him.

i think the main thing to keep in mind is that mono can be debilitating, its truly an awful disease to have in my opinion !! Keep strong.

 
Old 09-06-2011, 12:34 PM   #10
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Re: Things I wish I knew back then!

I'm very unsure about this "Mono" virus. I didn't find out about its existance until yesterday when a girl that I had a thing with, ended up symptoms similar to HIV but ended up with mono. I don't know where I got it. But prior to this day, I, & my previous partners haven't had any of its symptoms. I'm still a bit uneasy, though at rest, knwoing its mono. & not an STI. I'm almost 100% sure I'm HIV free, I don't have HSV, or HPV but something about me still tells me I may have HIV. After 4 partners, a blood donation that turned out okay back in may of 2011 & no exposure to the virus. Why do I still feel uneasy?
My girlfriend, kissed me, & had sex with me before I found out it was mono, she's been fine. My chest is a little painful. But I'm still unsure. Since you've been through this please help, I'm only 16 y/o..

Last edited by RMR54; 09-06-2011 at 12:36 PM.

 
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