Juvenile Chronic Fatigue Syndrome & the Mono Virus

I’m confused. When I was diagnosed with CFIDS,I was first checked for MONO, and didn’t have it. They then checked for Epstein-Barr, and my titers were through the roof. (1993). I didn’t have nor ever have had MONO. My question is how does the EB virus play a role in CFIDS. MY HHV-6 is 280.Can you have one without the other?

I do believe the Herpes virus plays a role in CFIDS.

Thank you for posting this. I’m male but I too had mono just after I turned 16 and never recovered, so it was diagnosed as CFS.

Shirley,

Mono is caused by Epstein-Barr virus, but Epstein-Barr virus doesn’t always cause mono. When you said “I was first checked for mono, and didn’t have it” you may be talking about the monospot test which can be inaccurate. If your Epstein-Barr virus titers revealed an active infection, and you had the sympoms of mono (severe sore throat for the first few weeks, swollen glands, etc.), then you did have it.

As this study shows some people who have mono go on to develop CFS/CFIDS. However, not all cases of CFS or CFIDS can be traced to a mononucleosis trigger, and these patients may or may not have elevated titers to EBV.

My son got mono at age 7 and then at 9 1/2 which is very, very rare. It turned into CFS/ME the second time. There is definitely a link!!

OK this is making much more sense to me now too. Thank you for your explanation CFS98. It’s too bad all the doctors I’ve seen could never explain all that to me.

I had mono. I didn’t test positive for it or negative that I can recall. I thought it was the flu but it was all of the symptoms of mono and it caused me to become bedridden for a year. After that I did get diagnosed with EBV. My CFS became chronic but milder for about a decade. Then I became disabled with severe Fibromyalgia and my CFS got worse. I’ve been bedridden with CFS and FMS for 9 years now.

I have to say one more thing. I started catching case after case of Strep Throat after that first year with Mono. I had no idea that EBV could make us more susceptible to Strep. I’ve learned a lot just now from the Commenters here. Thank you.

I was tested for mono and found it active in my blood. After a bout with it, my fatigue never went away (nor did some sinus problems I was having at the time).

I also hope more research can be done into investigating a connection between Hodgkins lymphomas and some forms of CFS because, while they used to think there was a relation, I’ve read that a more recent study or studies rejected a correlation, though I wonder whether the previous “smoke” reported by others in suggesting this correlation indicated there is indeed a “fire” such as I experienced.

i had a severe case of mono when i was 18/19 years old. . . i ran a low grade fever for several months and could not work , . school was a difficult task. . . .. my father says that i have ‘looked’ tired ever since.. . i am now 57. . . . i have not been diagnosed with cfs however i believe that i have it in conjunction with my diagnosed fibromyalgia for the past 15 years. . . . .i believe that the mono was just the beginning. . .

When I went to the doctor complaining of many symptoms, first things she did was send me in for a MONO spot. It came back positive and the Esptein-Barr showed as a recent infection. I was 31 at that time. I believe that Epstein-barr definitely had something to do with my CFS/Fibro. For that reason, I want to try Ampligen as soon as it is approved.
I have taken natural immuno-modulators and I feel like they do help.

I too believe my ME/CFS/FMS was triggered by Mono which was dignosed in 1988 & from which I have never completely recovered. I also have severe Endometriosis which many ME sufferers also have & nickel allergy which has also been linked with ME in some studies.
I had infentile convulsions as a baby & also had some strange type Flu at 11 yrs old which caused strange stabbing pains between my ribs which didn’t clear up completely for many years after. I read since in Dr McIntyres book on ME that symptoms such as this could be caused by Bornholms disease which could be possibly linked to ME also. Perhaps it is a combination of all these that have led to my ME as I developed muscle fasiculations soon after the Bornholhoms type illness but then that was the year my periods started too & I was in severe pain from my second period though I had to wait another 28 yrs to be dignosed with Endo.

I had Mononucleosis 3 times before I finally had CFIDS(1985) and then Fibromyalgia, which I later contracted after catching the flu from my husband in 1986. I never recovered from that flu,hence the onset of the Fibromyalgia along with CFIDS.
I do believe that having Mono, the first time at age 12,the second at age 19 and the third at age 24,definitely played a role in my immune system breaking down.I was also born with anemia, which also may have contributed to my condition.But that’s just speculation on my part. Everyone says that’s interesting but no one really knows if that had anything to do with it or not.
I was always weaker than others, and could never keep up in gym class, even at age 8, with the other kids. My stamina just wasn’t nearly as good. I could never run with my classmates without serious consequences, and because no one ever thought anything was wrong with me, they pushed me until I finally fell apart.
As an adult I noticed little bouts of mono-like flare ups whenever I was concentrating on a task(e.g., completing a project at work or writing a term paper).I would always get dazed, parched and feel muscle pain. It took 7 hours of continuous cognitive work, which felt very physical to me then, to get that way, and I could recover from it within a few hours of rest. Now it takes only a few minutes to get that way and worse, and I can’t recover. That’s a huge difference, and if I had only known then what I know now, I would have approached life in a way to prevent the disease from robbing me of my life and identity.
EBV is different than the Mono most people know.With EBV your spleen is not usually enlarged, and your throat usually does hurt. You have trouble sleeping,whereas with Mono you just sleep away and don’t even realize it. I can say that when I caught the flu and was already fighting to get better with CFIDS,I also developed Fibromyalgia, although I didn’t know it at the time. I was bedridden for 3 years by the time I was 25 years old and had to go on LTD from my employer and then SSD. I lost everything I loved and worked so hard for in life,and I was so ill I couldn’t even move. People who I thought were my friends disappeared. The muscle pain, fevers, sore throats,dizziness etc. were unbearable, and I finally found an excellent immunologist who helped me immensely with antivirals, a neurologist who helped me with dizziness(yes, it can be treated!!), and an internist who helped me get my SSD benefits. It would still take over 10 years before I could even read a few pages of a book, talk for a few minutes or sit up for 10 minutes straight.
The best thing to do is to keep a positive outlook and even if it hurts physically(breathing hurt me physically for years),find some silly show that makes you laugh, and watch it every day. Surround yourself with people who are upbeat but realistic, and who accept your limitations and the new you you were forced to become.Try really hard NOT to compare yourself to your former self, because chances are you won’t ever be that person again. This is a grief you’ll have to process, so don’t run away from it or you’ll never be able to accept the new you. Get rid of the stress(advice my doctor gave me 18 years ago) and just know that with complete rest,medicine, emotional support and a positive attitude, your boundaries will become smaller and smaller. You may not ever get better,unfortunately, but you will learn how to manage yourself so you can do some things. Stay positive, and don’t listen to negativity. I learned how to meditate when I was bedridden all those years and couldn’t move. It helped me to survive through the worst of it, and it will help you too. Find doctors who will actually try to treat you, and don’t accept anything less.

I had severe mono in High School and looking back I was never the same. It took me years to get properly diagnosed with fibromyalgia but I can trace my sypmtoms back to then. Constant fatigue, brain fog, muscle pain, etc. I am very curious to see more research come out regarding epstein barr.

I had chronic EBV when I was 18 years old. In my twenties I improved to a stage of feeling generally well and strong into my thirties. But I still always had to be careful of my health and not overdo things. Then in my mid 30’s, I got CFS. I could tell I was getting sick and I tried to head it off at the pass, but it came on fully. I was then expecting to be unwell for a few months! Ten years later I am still recovering. I am certain that EBV had a huge impact on my health for my whole adult life and influenced my getting CFS later.

Mono was my trigger for sure! I caught both the CMV (Cytomeglovirus) and the EB (Epstein Barr) strain of Mono. I was told it would take a couple months to recover but 8 months later I began to see specialists. I was first diagnoised with CFS by 3 Dr. and then FM was added by another. I have had some improvement over the last 7 years but I have had to change my life, career and pace myself daily. Does it evey go away? I doubt it!

I had a severe case of mono at age 18/19. I was sick for months and for years after I ran a low grade fever when tired. I am now 65 and diagnosed with fibromyalgia. I have felt like I never really recovered from the mono. The fatigue has been really severe all my life. I have always felt there was a conection

Can I ask a question?

Has any research been done as far as how many strains of EBV there are?

My 2nd question: If you get a subsequent or third or fourth case of mono, isn’t it considered a reactivation of the virus? Also, isn’t reactivation relevant to the IgG titers of EBV? I believe once you have the first/active infection of EBV (IgM), the test does not mean the same thing during a 2nd, 3rd or more case of it?

I have received so much conflicting information regarding the 2nd question from interests, PCP’s, neurologists and infectious disease specialists!!

Wow! This is so interesting!

I was dxd with CFS in 2007, though I believe I have had boughts of CFS/mono for 20-25 years prior to that.

I was very sick at age 10 and remember being tested for all kinds of things. I think it turned out to be a severe case of strep, but I remember the Dr.’s and everyone around me worried. Was EBV tested for 30 years ago?

I am sure I had mono or something like it in my teens and periodically for the next 20 years. It was exactly how I am feeling now, except I believe my youth and being in shape helped some.

At the same time I was dxd by a real Doctor with CFS, I also tested very high for EBV >1280. I became pregnant at the same time as testing. One year later, after pregnancy, my Titer was nearly zero (either 1:10 or 1:60…can’t remember). We thought my pregnancy had somehow cleared my body of the virus. Now, my titers are back up 1:1280 (I think IgG) for EBV. My CFS Dr. suspected it was back by my symptoms. I sure feel like it is an active infection!

To answer the question, I do wonder if the mono/EBV started my symptoms. Unfortunately, I do not know what made me sick when I was younger.

The second question Adrienne asked. I just started a 6 month course of Famvir. The odd thing I have noticed is that the back of my throat is less swollen! My tonsils and tips of my adenoids (I think) are equal in size now and much, much smaller. I still have some redness. This is disgusting, but one side was always more swollen and I would frequently get tonsoliths on that side. Also, out of the 2 weeks on Famvir, I missed a few days. My throat/tonsils/adenoids returned to swollen, especially on the one side. I returned home, took 2 doses of the Famvir and my throat has shrunk down again.

I personally think that the antivirals will help with other stuff, but will take time. I also do not think it is a one-stop treatment, but possibly a critical role in treatment.

I am unsure what exactly started my CFS. I do think the EBV/mono is a very strong possibility. I would have to say the antivirals are helping and definitely worth a shot!!!

I had severe mono when I was 15. I feel like I have never been the same since. I have constant fatigue, frequent illness, the works. I was diagnosed with CFS 15 years ago, but none of my drs have ever attempted to treat it. I am very interested in the new drug Ampligen to see if it might boost my immune system, that is if I can get my dr to prescribe it.

Thank you! Thank you! I’ve only been saying, for the last 30 years that Mono caused my Fibro. At last, someone is listening. I’m not crazy after all. I had Mono when I was 31 with no respiratory symptoms. In fact the only symptom I had was fatigue. Since I’m bi-polar and it was August(my usual down time), I simply thought I was depressed. About six weeks later, I developed petechiae all over my body and my platelet count dropped to less than 5,000. Normal is 150,00+. My spleen was enlarged and I didn’t have a single normal white blood cell on my blood smear. My doctor was going nuts. He thought I had acute lymphacitic luekemia. He was talking bone marrow test, and I was talking “You’ll have to catch me first”. I was a registered nurse working in the ER. On a whim, he decided to do a mono spot test even though I hadn’t had typical symptoms. It was positive. My platelet count problem was a severe complication of the Mono. It cleared up by itself in about a week, but it was about 6 months later that I started with pain, stiffness and chronic fatigue. Being a nurse I researched the Epstein-Barr virus on my own, and I’ve always known there was a connection. I finally feel vindicated. HOORAY.
By the way, in the last 3 months, I’ve started taking Neurontin for my Fibro. One doctor(my orthopedist) finally paid attention and decided to try treating it. I’m getting good relief with it. I’d say at least a 50% decrease in pain, burning, and stiffness, and I can finally tell the difference between what is arthritis pain and what is Fibro pain.

I too had mono when i was a kid. I had it for several months or even 6 months. I do believe there is a connection with mono and fibromyalgia. I also believe that there is a connection with it being neurological. I was involved in a bad car accident in 1989 and have never felt the same since. There is a connection with the nervous system i am almost sure of it. Any thoughts?!?!

i had mono at 23 and never recovered. i am now 38 and have been on antivirals (valtrex for EBV and valcyte for HHV 6) for 2 1/2 years. there is soome improvement.

the longer you go untreated, the longer it takes on the antivirals. i hope and pray i will get better in the coming years because my quality of life is zero.

you also have to check for other infections (mycoplasma, lyme, etc.) to see if you need antibiotics.

please see research by dr. a. martin lerner.

sue

New study 07/09 linking mono to CFS.

http://news.yahoo.com/s/nm/20090715/hl_nm/us_mono_chronic_fatigue_teens

I HAVE GOOD NEWS FOR EVERYONE!!!!

First at age 15/16 I must have got mono. I slept about 20 hours a day for almost a year. Since then I sleep 12 hours a day, I ‘force’ myself to wake up, still tired, have to take a nap, and very hard to work and function. My house is always a huge mess and I never do dishes or laundry until I’m forced. ( I may have fatigue and a mental disorder )

I just started taking amphetamines. With my psychiatrist testing between Dextraamphetamine and adderall. I take a pill 1 hour prior to having to wake up. Long story short, I am up and have plenty of energy ALL DAY, NO NAPS either. Once the medicine kicks in (20 mins to an hour), I feel I rested and very alert. It’s only prescribed for attention deficit and narcolepsy, but I am thinking it may be life changing for the better for a lot of you. Try to get your doctor to try you out on it.

My wife has had CFS for a number of years (at least 12). She’s 28 now, so she’s been affected since her teens. A year ago I told her the only thing I’d ever heard of that sounded like CFS was mononucleosis, which I remember had struck a few of my high-school contemporaries in the ’80s. As I recall, they basically were prescribed plenty of bed rest, and after a month or two were back on their feet, normal again. Fully-cured!

Well, my wife had not heard of this, and had no recollection of ever being diagnosed with mono. Any linkage was pure speculation on my part. BUT … wouldn’t you know it, a few months later her family doctor, when doing a blood analysis, identified something which told her that my wife did in fact, at one point, have Mono! She had just never been diagnosed properly. But, where most people get over the mono (I guess the virus makes its way through the system and out), my wife was one of a small minority in whom the virus morphs into something else, i.e., a long-term, if not permanent, condition.

Now, I was actually thrilled to hear this, because it means there’s a link between some cases of CFS and a condition that is at least recognized by the medical establishment. The more CFS sufferers who KNOW they’ve previously had mono speak up, the better!!!

I’m only the husband here, I don’t suffer from CFS, but I’m frustrated, and want this thing cured or managed — almost as much as my wife does. If there is a link between CFS and mono, let’s work together to get it fully exposed in the mainstream.

I had Mono at 22 after being in Europe and I have not felt the same since (32 now). My main problems are attentional, with fatigue and post extertional malaise, and just not feeling like myself. I have done tons of research on this. Check out the CDC study by Andrew Lloyd. There is definantly a link between mono and CFS and this has been proven.

The mechanism is probably a brain injury during the acute phase, which takes a while to heal. Probably an injury to glia cells and not the neurons. Also, I think B cells of the immune system are forever modified by Epstein Barr, causing an non-optimal immune balance, and increasing the risk for MS, etc.

These two things, at different levels in different people, cause post mono CFS I believe in most people. A third cause could be chronic infection, and this causes a more severe CFS and is rarer.

Wow, it is amazing to see all the people on here discussing MY LIFE! I have had so many of the symptoms of CFS after a bout with EBV and mono as a junior in high school. One thing I want to throw in—it is my understanding that once you have EBV/mono, you always have it. Those who are thinking they are re-contracting it, I don’t think that’s the case. It lies dormant in your blood until you have some sort of stressful situation that makes it recurr. I could be wrong, but this was my understanding.