The Infectious Mononucleosis / Glandular Fever Poll for ME/CFS and Fibromyalgia

[Cort]

Having infectious mononucleosis/glandular fever increases one's risk of coming down with ME/CFS immediately and multiple sclerosis later in life. IM is usually caused by a herpesvirus called Epstein-Barr virus. A recent study suggests that herpesviruses can vastly alter immune functioning. Could a bout of IM/glandular fever set you up for a fall? Let us know if you were ever diagnosed with IM/glandular fever and how it turned out in the poll below.

 

[Merry]

I was never diagnosed with Infectious Mononucleosis, but it seems unlikely that I never had it. So perhaps I had a mild case as a young child.

 

[diane]

I have never had Infectious Mononucleosis that I know of. The Australian doctor who first diagnosed me thought that it may have started when I had Hepatitis A at age 7. Certainly I can recall feelings of exhaustion (but no words to know what to name it until I was diagnosed in my 40s) in my high school years, and my family considered me to be lazy, so it's likely I had it in primary school.

 

[Angie]

I didn't vote, I don't fit in any of the boxes, or at least I don't know if I do. I was diagnosed with a brutal case of mono with mono induced hepatitis when I was 37, about 2 years into the CFS - 6 months after CFS diagnosis. It is the only time a blood test ever showed anything not normal. I don't know what triggered my CFS but I can say without a doubt that they way I felt on the morning I woke up sick, the way the area around my eyes looked, was very much like my confirmed case of mono. I feel similarly, including the odd subtle change around my eyes, every time I have a significant relapse.

 

[kizmit]

My son (now 10 years old) and I contracted EBV from my niece (a sophomore in high school) when we shared a berry cobbler (in 2010). We both have CFS/Fibro. My aunt contracted EBV from her 5 year old son 43 years ago. She was diagnosed CFS, then fibro, pre-lupus and now severe lupus. Her son also suffers from CFS/Fibro. We (my son and I) have co-infections (mycoplasma pneumonia, Chlamydia pneumonia). We have been on antibiotic therapy, supplements and immune boosters for 6.5 months. My son is also on antivirals. We have both improved significantly.

 

[melamine]

I voted but there was no choice that accurately represented my situation: I didn't seek a diagnosis until the chronic "post"-infectious period had set in and failed to get a diagnosis thereafter. There is no question it was EBV and titers have remained elevated since they started testing about 8 years ago, which was several decades after the acute illness and onset of CFS.

 

[6String]

Having infectious mononucleosis/glandular fever increases one's risk of coming down with ME/CFS immediately and multiple sclerosis later in life. IM is usually caused by a herpesvirus called Epstein-Barr virus. A recent study suggests that herpesviruses can vastly alter immune functioning. Could a bout of IM/glandular fever set you up for a fall? Let us know if you were ever diagnosed with IM/glandular fever and how it turned out in the poll below.

I was diagnosed with IM twice - first in 8th grade and then again a couple of years later. But Mycoplasma Pneumonia four years ago (at age 62) was the infection from which I haven't recovered.

 

[SandraHeretic]

I contracted mono (diagnosed by the family doc) during the school play my junior yearn high school. Most of the cast got sick within two weeks of closing night. I didn't get diagnosed until I'd been constantly ill for over a month, until after school had ended. I was housebound for the whole summer, exhausted enough through my senior year that I took on no extracurricular activities (so very different than my junior year when I was truly never home except to sleep a few hours). I didn't feel as though I were "myself" and back to my normal level of activity until my junior year in college. Even so, I never could maintain the same level of busy as my peers without crashing during vacations. After I began working--no more spring break or Christmas vacation--I started developing a twice or three times a year illness that kept me in bed for a week with a week or so of prodrome and several weeks of recovery after. Even so, by age 27, I was making the rounds of doctors to find out why I never seemed to be as healthy as my office mates and friends. I didn't get diagnosed with Chronic Fatigue Syndrome until I was 42--it was a lot of doctors and a lot of self-help programs in between there! I'm 50 now and haven't been able to work or go to school or even maintain the usual stay at home mom tasks most of the time since my diagnosis. Still looking for a doctor who both believes in my diagnosis and has a protocol that doesn't involve some unsustainable diet or cardio workouts. But, yeah, never the same since mono.

 

[shira]

I has in my 4th yr of college & contracted mono from my husband. I was about 6 or 7 months pregnant. I had liver involvement & was quite sick. I do not believe I ever went back to the same level of helath following mono. 17 years later I contracted cfids/me/fibro.

 

[MarieSak]

I was diagnosed twice with IM. Once in my 20s and again in my 30s. When I had it the second time the doctor told me I had all the symptoms of chronic mono. I never fully recovered, but functioned at about 75%. Got sick again in my early 50s, was nearly bedridden for a year. Went on Valcyte for 9 months and had quite a bit of improvement. That was 7 years ago. In recent months, I've started to decline again. My doctor wants to put me on the Pridgen protocol, but my insurance refuses to pay for the Meds.

 

[sue la-la]

Survey question 2 : were you infected as a child, or as an adult?

I was 21 when EBV invaded me.

 

[justME]

according to my VERY alternative healer EBV's the one that we all have and according to my own body, no matter what you do to get rid of lyme, toxoplasmosis or any other, if their ringleader is still lurking then nothing will change

 

[Linda B]

My daughter had Roseola at age 2 (HHV6). No other childhood diseases. A age 12 she had a throat infection which would not shift...a couple of courses of antibiotics....that's before I knew better! Was that the CMV? When she became ill at age 13 she had a very severe virus (was that the CMV?) which preceded the onset. She tested positive for CMV but not EBV.

 

[Merry]

When did American medical schools begin teaching doctors about infectious mononucleosis? I don't recall anyone I knew when I was growing up who got this diagnosis. I have just now read that the illness was described in the late 19th century. The connection between EBV and mono was not discovered until the late 60s. When was the discovery made that CMV can cause mono? The wikipedia entry did not say (or I overlooked that info).

 

[kim.der.acquiro]

My sister and I were both tested for mono about umpteen bazillion times, but it was negative every time. Doctors kept saying to us, "You have all the symptoms of mono", so they'd test us, and then shake their heads when the tests came back negative. In retrospect, I guess those symptoms were indicators of CFS. We were diagnosed with CFIDS in the late 80s, but we had had the symptoms since we were little kids.
Kim D

 

[Tara H]

I was 16 when I had mono; trigger happy immune system off and on afterwards until a flu-like virus led to CFS at 36 - almost 15 years ago.

 

[Cort]

I contracted mono (diagnosed by the family doc) during the school play my junior yearn high school. Most of the cast got sick within two weeks of closing night. I didn't get diagnosed until I'd been constantly ill for over a month, until after school had ended. I was housebound for the whole summer, exhausted enough through my senior year that I took on no extracurricular activities (so very different than my junior year when I was truly never home except to sleep a few hours). I didn't feel as though I were "myself" and back to my normal level of activity until my junior year in college. Even so, I never could maintain the same level of busy as my peers without crashing during vacations. After I began working--no more spring break or Christmas vacation--I started developing a twice or three times a year illness that kept me in bed for a week with a week or so of prodrome and several weeks of recovery after. Even so, by age 27, I was making the rounds of doctors to find out why I never seemed to be as healthy as my office mates and friends. I didn't get diagnosed with Chronic Fatigue Syndrome until I was 42--it was a lot of doctors and a lot of self-help programs in between there! I'm 50 now and haven't been able to work or go to school or even maintain the usual stay at home mom tasks most of the time since my diagnosis. Still looking for a doctor who both believes in my diagnosis and has a protocol that doesn't involve some unsustainable diet or cardio workouts. But, yeah, never the same since mono.

Very interesting. I'll be EBV did you in...It's so much harder on the immune system when you're exposed to it later in life.

 

[Cort]

My sister and I were both tested for mono about umpteen bazillion times, but it was negative every time. Doctors kept saying to us, "You have all the symptoms of mono", so they'd test us, and then shake their heads when the tests came back negative. In retrospect, I guess those symptoms were indicators of CFS. We were diagnosed with CFIDS in the late 80s, but we had had the symptoms since we were little kids.
Kim D

Isn't that something. Karen you and your sister were probably just a couple of decades too early for them to find anything. At least they tried.

 

[Cort]

It is strange how ebv hasnt been around that long and since it was discovered, technology has improved greatly, but why does it seem that drs have closed the book on ebv. The same I think could be said for all the herpes viruses. It's as though they think they are benign infections unless u have hiv or some discovered immune deficiency, although if u have low nk function it doesnt seem to matter either. Nk cells only kill viruses and cancer infected cells, nothing important? ?

I think that book is going to opening up again. For some reason pathogens are just not a big deal in US medical circles. I think that will change though.

 

[Jennifer]

Having infectious mononucleosis/glandular fever increases one's risk of coming down with ME/CFS immediately and multiple sclerosis later in life. IM is usually caused by a herpesvirus called Epstein-Barr virus. A recent study suggests that herpesviruses can vastly alter immune functioning. Could a bout of IM/glandular fever set you up for a fall? Let us know if you were ever diagnosed with IM/glandular fever and how it turned out in the poll below.

I never had IM, but I had the genital herpes virus and it really affected me. After I would have terrible pain down the backs of my legs and the soles of my feet. I started having a lot of sinus infections and some times I would think I had the flu but the main symptom was sleeping for days . It started happening more and more often. I finally had to retire early and filed for disability because I could no longer hold down a job.