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I Have Had Mono Three Times. This Isn't Right!

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I have been tested and diagnosed with mono three times in my life: twice in my teen years, and once more last summer. These were all confirmed by doctors. I am 22 years old.
It lasted for months last year, and during that time was tested for other things such as anxiety and epilepsy. I had an eeg scan, a holter monitor, and an ecg, but everything turned out normal.
It is yet again summer and I am feeling the exact same symptoms as I had last summer. On top of the mono symptoms (extreme tiredness, apetite loss and gain, sore glands, fever, hot/cold sweats) I also have dizzyness, sore joints, sore muscles, harsh headaches, anxiety, and I often daze out and have "episodes" very much like those with mild epilepsy.

First of all, I heard that you're not supposed have mono more than once, and it is very rare to have it twice.
Secondly, if all my tests come out fine....Why am I having so many symptoms? And symptoms of what?
Does anyone have a clue what this might mean?
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replied July 13th, 2005
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I was diagnosed with mono in feb. 05 and i'm still having symptoms. I know that was only a few months ago but my doctor said (back in feb.) that the symptoms should subside in 4-8 weeks but I still have symptoms. My glands are constantly swollen, and my body is always sore and if I over do it I get sick real easy. I've heard that mono stays in your body, just lays dormat, even when you get better. And it can reflare. But a friend told me this I haven't asked my doctor.
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replied July 13th, 2005
When I had it it only lasted for two weeks, and yes it does stay in your body and it can reappear when you have a lot of stress in your life, or you are sick a lot and don't rest. ~as told by my doctor
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replied August 7th, 2005
My co worker whom I believe I may have got mono from. But not from kissing. Anyway she had mono for a whole year ten years ago and now she has it again. But her husband hasnt gotten symptoms. Anyway she has an immune deficiency disease. So if you have mono agaimn maybe thats whats wrong.
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replied August 20th, 2005
...
I am currently sixteen years of age, and was first diagnosed with mononucleosis at the age of fifteen. Over a year ago.
I was first infected by the illness during the summer of 2004, when I was out with a few friends. I suppose I made a mistake by sharing a cup, glass, lipstick or something of the sort with a person that night, and I became sick, instantly, the following morning.

I can't say that the one night did not change my life, because it has. Since that summer, I have been diagnosed eight other times with mono. My most recent was, infact, three nights ago. My tonsils are completely swollen/infected, and remain the same even when I am not fully feeling the symptoms. I am constantly drowsy, and cannot seem to easily pry myself out of bed unless I get a minimum of 10-12 hours of sleep every night. If I don't, I start to feel my tonsils beginning to become irritated, and so I pop back a few advil to numb the pain, and hope to god it will pass.

This time I wasn't as lucky. But I have an appointment to get my tonsils removed in september, and I am praying that it will stop this on-going trauma in my life. I am still in my teenage years, but my body feels as though it has aged drastically. I feel helpless some nights. I feel useless, and unloved. I don't think it's fair that any of us have to go through this sort of pain.. And I only hope that i, and the rest of you, get past this illness. It has been tearing holes in my heart, and I can barely live a normal life without worrying that what I am doing will affect my health, and perhaps bring the mono back. It has also come to the point that my friends, family and teachers are beginning to doubt me, and believe it an excuse I use to get out of certain situations. Which it is not. I don't understand how some people can be so incredibly ignorant and not care to look past what others believe to be true, appose to what is the truth.

I pray for my life back, and I pray for those who are in the same position as myself.

God bless you all.

-sainne
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replied August 23rd, 2005
Damn Mono!
Hi! I am currently 18 years old. I was diagnosed with mono when I was 17, back in december. I haven't been sick since I had mono until now. I'm been sleepy, have swollen glands, and my left side is sore....All symptoms of mono. I really hope I do not have mono because I am starting college next week!
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replied November 11th, 2005
Extremely eHealthy
You Can Have Mono More Than Once
The first time I had it I just thought it was a never ending flu and I had never heard of it until a dr told me I had it, I was about 16 at the time and I was out of it for three months. The second time was when I was 19 I went to the hospital I was in alot of pain (spleen was enlarged) omg it hurt all that was said is not to overdo myself that lasted 2 months.

The last and final time was when I 19 but few months down the road it only lasted a month and I could still move was just exhausted I got good and bad news from bloodtest lol, I was pregnant and had mono.

I asked dr why I keep getting it he says its like a light switch and everyone has different triggers that set it off for me its stress, when I just overdo myself mentally and pyscially I burn out and get mono..........Dr told me I have to becarful with futur episodes cause your spleen is really delicate and could rupture with mono.

Jess
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replied November 11th, 2005
Extremely eHealthy
I know me and my kids went thru the same thing. Each child only diagnosed atleast one time, but for over a year it was floating around my house. I wonder if in some cases you dont like "carry" it after the first episode. My son got it and lasted for 3 months, then daughter got it right after him. He kept getting signs (3 different times)for over a year when his brother got it. All confirmed by Dr. Swollen spleen and sore and achey--let me tell you. I was not ever diagnosed with it--they only checked me for strep throat--but I know I got it too. I had never before contracted it. And I had all the same symptoms as them. We never thought it would go away.
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replied June 3rd, 2010
Mono three times!
I have also been diagnosed with mono three seperate times. I am almost 28 years old and was diagnosed at 25, 26 and now 3 months shy of 28. Each time has been worse than the time before. This virus is the most devestating thing I have ever experienced. It has ruined relationships, jobs and my financial stability is completely compromised. Not only are the physical symptoms difficult, but I now have depression again for the first time in 10 years. (somthing I worked long and hard to overcome.) Also, the old wives tale that you can only get mono once is so aggrivating to me I could scream. I'd like to know why almost every medical website says that when it's just NOT TRUE.

Anyway, thank God for you people who posted prior to this. I finally have found others who know what it's like to relapse and I actually feel quite validated.

Thanks again.
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replied November 18th, 2010
Mono 3 times
I have had mono 3 times. First was when I was 15 years of age (shared water with my teammates all the time) this affected my spleen. The second was when I was 25 which I was hospitalized for, ran low grade fever, extreme exhaustion, and that time it affected my liver. Now, 27 and I just got diagnosed again. This time I went to the doctors for laryngitis and extreme exhaustion, walked away with laryngitis and mono, again... I know how you feel, the nurse that helped me said you can't have mono more than once. My wish for the medical field is for more consistency, when I was 25 with mono it took the doctors 3 visits and a hospital stay in which I got poked and prodded everywhere (not fun) to diagnose me with mono. I left with a huge bill and feeling even more tired. I was told then there are two types and I only got tested for one in a previous visit. Now, I'm really confused because I believed that and yet I have it again????

That did feel really good to just vent, very validating!!!
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replied January 2nd, 2011
You can have mono multiple times!
You can in fact have Mono more than once. I had mono when I was thirteen then several years later (about 4) I was given the diagnosis of mono once again. It is said that the second time you have mono it is less painful, however this time around it was much more painful and much more intense. I'm hoping if I see this not so welcome diagnosis again I'll be ready for it. Swollen neck glads, dry throat, fatigue, stomach pains..at the sign of any of these symptoms seek a test from your doctor right away so you can knock it out.
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replied February 9th, 2012
Getting Mono 3 times
I also had mono 3 times! 1st time I was 10years old and was severely ill. It took months to get better. Then I got it again at 24. After it "went away" it left me with chronic muscle pain in my entire back and extreme fatigue and now (7 1/2 years later), I got it again. The doctor said you aren't supposed to get it more than once because your body builds an immunity to it. Once you get it this many times and have ongoing symptoms (muscle pain, extreme fatigue, soar throats, etc.),even after the actual infection has disappeared, it is actually referred to as Chronic Fatigue Syndrome which is caused by the Epstein-Barr Virus. I have had blood tests done each time which confirmed it was the actual live active virus each time, not just the antibodies leftover from being exposed in the past.
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replied March 11th, 2012
mono 3 times
I am on round 3 currently. And this is a confirmed by monospot and dr each time. I am now at age 40 experiencing lymph nodes that are reactive in multiple body aread. Biopsies - now done on lymph nodes 2 separate times both came back benign reactive lymph nodes. The pain is much worse this time and I am about a month into it. Really frustrating also to hear that there is nothing to do but rest.
I was not a found believer of aromatherapy but when they say do not give antibiotics or steroids - gotta have some relief. Research Lavender and if you find anything else that helps with the symptoms please post as well. Thanks.
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replied March 21st, 2012
I had mono at age 17 with the same symptoms as mentioned on this forum, but was hospitalized 4 days because the condition worsened. I got very ill at age 50, and was hospitalized for 9 days with only a 15% chance of living, until I was finally tested for and diagnosed with Epstein Barr then treated with Vancomycin (sp?) which literally saved my life. To think that mono could flare up again at any time is a very scary prospect.
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replied July 31st, 2012
mono more than 3 times help??
I have had mono 3 times and now at 45 think i may have given to my 15 year old daughter> i have not been tested but have been so tired i now require 12 hours of sleep, have completely stopped working out with my trainer and have been trying to get a hold of ADD meds for an extra boost, thought may be normal result of age. i am being tested again tomorrow since my daughter just tested positive, and i would put money on it that is mono< now question, how the hell do i make myself feel better???
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replied March 27th, 2013
Mono multiple times and drs say rest and fluids oh please....
I have had mono 4x maybe more because I didnt have it confirmed. I think each time it has been worse maybe as we age our bodies cant bounce back. I do have an immune deficiency its called IgG deficiency. I get monthly infusions but that hasnt helped with mono. I was diagnosed with that after I continued to have chronic sinus infections that antibiotics and steroids couldnt help. I had my tonsils and adenoids out when I was 31 which was a pain in itself but this mono thing seems to be so much worse than the flu. It feels like strep, the flu, chronic fatigue all in one. Extremely difficult to care for young kids and continue daily life tasks. I have been told it only usually happens once to people but seems more and more people are getting it more than once is what my dr. stated. Most times I have had this it has lasted a month to month and a half this time It started back beginning of Feb and I still have it as of 3/27. Also got bronchitis on top of it. Not fun. They say there is nothing but rest and fluids. Lasts longer than the flu virus their is nothing to help the flu either but possibly shortening it with flu shot. Why isnt there a mono shot? They recently since my son has been born come out with a rotovirus shot that my daughter didnt get and that was almost like a flu so why nothing for mono if it is people are getting over and over. It swells the spleen and can cause rupture. It is a very unnerving situation some of us are in. I was told to just keep checking to see if symptoms worsen and if so go to dr. they dont seems to do anything so why bother. I think I have given it to my 5yr old and 11 yr old and now my husband whom have all had tonsils and adenoids out and usually are healthy. I fear that this time it could last months and months especially if others in the house catch it it will just continue to keep going person to person even if you constantly wipe everything down almost like it has mutated over the years. Anyone know how to shorten this pain would really help alot of people out there. I know Id love some relief. Nothing seems to last as relief for long tylenol, baths, gargles, fluids, rest or compresses.
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replied January 17th, 2014
Chronic mono?

My daughter was first diagnosed with mono at the age of 16. She is now 32 years old and has been diagnosed again. After the first diagnosis, she never seemed to recover completely and has been chronically tired, achey and experiencing headaches ever since. She was diagnosed again recently, as her symptoms exacerbated to the point she was crying every day she was so tired. My heart aches for her and had hoped to find some help reading the above comments. Alas, there seems to be just more people suffering the same things my daughter is. I hope and pray that you all will find relief soon, as well as my daughter. Just knowing though that she is not alone is a relief.
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replied December 21st, 2014
Hi I just got diagnosed with mono, for the third time. Except, this is my third time in the last year and a half so you can imagine my frustration.
As I'm sure you all know mono is caused by the EBV virus, and it can be reactivated at any point in time because once you get it you'll always have it, it just becomes dormant. That is the reason we can get it more than once. With majority of sicknesses, antibodies are built up that fight against it happening again but it's not the same for EBV.
If your immune system gets weak enough, and you attract any sickness, then it is possible for it to reactivate. So our only hope is to take really good care of ourselves. I'm only 18 years old so that isn't necessarily on the top of my priority list. I want to be normal too and not have to worry about always getting sick, but that's life!
Good luck to everyone
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replied December 28th, 2014
I am 29 and this is my second round with mono, I had it last winter as well. This time seems worse than the first time as I am sleeping 12-15 hours a day most days, I have HUGE tonsils and glands. As a description: The local hospital brought down nurses from other floors to look at my tonsils because they've never seen any that large. Anyway, there for a while they put a IV port in my arm (out now) and had to rotate them every couple days but I was getting pain meds (toradol), anti-inflammatories, steroids, and at that time they didn't know I had EBV mono so I was also getting massive doses of antibiotics. My question is, if I get my tonsils out will I still have bouts of mono? I mean, how can they swell massively if they're not there? I about forgot to mention, I also have trigeminal neuralgia a.k.a. "The Suicide Disease", well with my swelling and pain from mono it's making my Trigem 200x's worse and all the pain meds they have me on aren't working! Mad
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replied January 25th, 2015
I am pretty sure that trigeminal neuralgia and other neurological symptoms have been connected with Epstein-Barr virus. I thought a course of antibiotics actually made my illness worse because I had a serious reaction to it. Probably too much more of a hit on your immune system. And antibiotics do nothing for viruses anyway. I am glad you finally got diagnosed correctly. Hang in there! Let us know how you are doing.
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replied January 25th, 2015
Natural things can definitely help mono
You can definitely get mono more than one time. You can have relapses that seem like mono again, or you can have chronic fatigue syndrome (and some researchers believe fibromyalgia is actually the same thing). The key is to take really good care of yourself and strengthen your immune system as much as you possibly can. Clean up your diet: avoid anything that causes allergic symptoms, eat a LOT of veggies and fruit and healthy proteins (organic as much as possible), work on a gradually increasing exercise program that does not make you more weak/fatigued, drink pure water, get fresh air, and all the rest that we all know we should be doing anyway!!! After I had diagnosed mono in my early 20's, I was diagnosed with fibromyalgia (after years of searching for help). I really worked on doing all of the above things to strengthen my immune system, including taking herbs and Vitamin C. I was doing well for over 20 years, then was under a huge amount of stress at work, really went off my healthy diet with lots of candy and ice cream etc, stopped exercising, let myself get negative and stressed and worried. I was forced to work closely with a new coworker with chronic Epstein Barr infection (she was the most difficult and toxic person I have ever dealt with, which I now believe led to my lowered resistance and lowered self-esteem, then not taking good care of myself), and within a month I had full-blown mono symptoms again. After almost a month of suffering and still total laryngitis, terrible coughing, sweats, disabling weakness and fatigue, the only thing that helped was olive leaf extract, an herbal remedy called Fenu-Thyme, lots of raw garlic and onions, and an herb called Goldenseal. And a really healthy diet. Bingo!. I was massively better within about three days although I did have some initially increased fatigue (some doctors think this is from "dieoff" or a "Herxheimer reaction" caused by toxins from the dying viruses). Within about 9-10 days, I was thinking about going back to work, my voice came back, and the terrible coughing stopped. You can also use oil of oregano. I am planning to alternate the olive leaf with oregano oil every few weeks, probably at a low dose, forever. Here is the bottom line though. I also did a whole lot of work on stress control techniques. And prayed. No job or relationship with any person, personal or professional, is worth jeopardizing or damaging your health!!! If you are in a toxic or abusive situation, you need to get out or you are at risk of constantly depleting your immune system and getting sick again. Research new modalities like EFT, BSFF, and ZPoint to deal with stress and negative emotions. Sorry this is so long, but I just don't want other people to suffer like I did. I am extremely hopeful that I will never have to deal with mono again.
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