Who developed M.E./CFS Post-Mononucleosis?

[TheMoonIsBlue]

Hey everyone, this is my first post and I'm still trying to figure out the board, so if you would kindly bear with me.

Hope this is an Ok place to post this.......so many different sections and I did want to make sure it was seen.

With 30+ years and still no apparent subsets of CFS (atleast not by CDC standards) I guess I was just wondering how many people, like me, developed M.E./CFS as an apparent direct results of a severe mononucelosis infection?

You can't surf the web without reading story after story of "It all started with mono..." or "I've never been the same since I had mono" ........

I don't know how this specific trigger will relate to XMRV and MLV's, which I AM hoping will turn out to be either "the cause" or "a major factor" in M.E./CFS and other neuro-immune diseases.

It just seems to me, wouldn't this subset of patients whose "illness trigger" is 100% known, be valuable to study? The post mono- severe herpes virally infected patients who then went on to develope M.E./CFS.

I've had all the bloodtest for herpes viruses, been treated for EBV and HHV-6a, but still have never had any testes on my IMMUNE SYSTEM.

That's what I am waiting for....and hoping for....1. What happened to my immune/neuro immune system when I got hit with severe mono? 2. What is happening to my immune/neuro immune system now? 3. What the heck can I do about it?

Anyways, it just always seems after reading posts online for years and years (what else can I do at this point? pretty much nothing) that Mono seems to be a HUGE trigger for M.E./CFS in those who were severely infected.

-Did your M.E./CFS start with mono?
-How severely were you infected?
-Have you ever been tested/treated for possible still active herpes infections, with no, little, moderate, or huge success? Did the improvement last?

If so, I'd love to hear your stories.

Here's an anticipatory "Nice to meet you" to everyone who replies :Retro redface:

"I have found it easier to identify with the characters who verge upon hysteria, who were frightened of life, who were desperate to reach out to another person. But these seemingly fragile people are the strong people really. "
Tennessee Williams

 

[TheMoonIsBlue]

P.S. Would also like to hear from people whose M.E./CFS started with mono, are are or have been ebv,hhv-6 or cmv positive and are also XMRV+.

 

[xrayspex]

me, had recurring mono age 15-22 then pretty good til surgery at 29, hosed since then

 

[TheMoonIsBlue]

Hey Xrayspex, ever tried anti-virals such as valtrex, famvir, acyclovir,etc?

 

[heapsreal]

hi moonisblue,
About 6 months prior to what i thought was my cfs onset i had a mono from cmv, which i think i recovered from but maybe i didnt and was just in that cfs cycle of ups and downs. I think my cfs started with chickenpox and still within that post viral state of chickenpox(8yrs ago) got ebv mono which was confirmed by blood test, but since then have had a couple of tests that have been negative to ebv, so dont know whats going on there, maybe just not producing antibodies to ebv. 5 years after onset finally found a doc who knew what he was on about. He did a lymphocyte subset test on me which should these lymphocytes were elevated, i had this test a few more times over an 18month period or so before starting antivirals, my doc thinking possibly cmv reactivation, ebv we are at a loss of what happened there, so these tests showing i had chronic lymphocytosis. So i started famvir and within 3 months noticed i wasnt crashing which i would do regularly but wasnt sure if this was just normal cfs ups and downs. After 6 months i was feeling alot better and still hadnt crashed, my lymphocyte tests were improving with my symptoms. I did eventually crash but not as hard or as long as pre av's. After 12 months i was feeling really good, lymph tests were slightly elevated but the best they had been since doing these tests. I also enrolled in a cfs study measuring natural killer function and my results showed i has slight nk dysfunction as most cfsers in the study showed. Famvir was costing quite abit so for economic reasons i changed to valtrex, which now i realise was a mistake for me as it has little effect against cmv, so after 6 months of valtrex and feeling crappy, my next lymph test showed that they were all elevated again, another NK function test showed its was very low. So after these tests i went back on famvir, its been about 3 months and im feeling better already, have had another lymph test but wont get results for a few weeks but i think they will have improved as so have my symptoms

 

[JAXintheCity]

Ignore this one and sorry for the double post... problems with the site, or my computer, giving me trouble!

 

[JAXintheCity]

Hi Moon!

I got Mono after a summer trip to Spain when I was 18. I had a horrible summer, and then got better, went to University and had a good ole' time! However, when I was 20 - I started getting AWFUL fatigue and other viral like symptoms (night sweats, swollen lymphs, sore throat, stomache aches, EXTREME weight loss, etc). I would say it came on gradually. One day, I realized I kept falling asleep in class and knew something was wrong! I kept going to doctors and finally...after they ruled out Lymphoma...I was diagnosed with ME/CFS.

I am convinced that the Mono was the trigger.

That being said, my little sister ALSO has ME/CFS...which she also developed AFTER a mono infection. (Approximately a year and 1/2 later, too.) Interestingly, my older sister is the only one in my sibling trio WITHOUT ME/CFS... she is also the only sister who never developed Mono. I think it's related, somehow.

In addition, both my sister and I tested positive for 'reactivated EBV' during our initial CFS phases. (Her doctor told us, "She must just have mono twice! Since he was apparently stumped by this.) To this day, we both continue to have high levels of re-activated titers. Mine have actually gotten worse since being infected 10 years ago. At one point, I held the diagnosis of "Chronic EBV infection" and some dotors continue to note this on my charts so that insurance pays for stuff (which, for some reason, it won't with ME).

My sister's doctor (at the time) put her on Valtrex... which didn't work. She is not under care right now. When I get up the strength, hoping to get to an infectious disease doctor and get tested for XMRV.

PS I have also tested positive with reactivated and high titers (between 300-1200%) for HHV6A, Mycoplasma Pneumonia and Candida.

 

[taniaaust1]

Hey everyone, this is my first post and I'm still trying to figure out the board, so if you would kindly bear with me.

Hope this is an Ok place to post this.......so many different sections and I did want to make sure it was seen.

With 30+ years and still no apparent subsets of CFS (atleast not by CDC standards) I guess I was just wondering how many people, like me, developed M.E./CFS as an apparent direct results of a severe mononucelosis infection?

You can't surf the web without reading story after story of "It all started with mono..." or "I've never been the same since I had mono" ........

I don't know how this specific trigger will relate to XMRV and MLV's, which I AM hoping will turn out to be either "the cause" or "a major factor" in M.E./CFS and other neuro-immune diseases.

It just seems to me, wouldn't this subset of patients whose "illness trigger" is 100% known, be valuable to study? The post mono- severe herpes virally infected patients who then went on to develope M.E./CFS.

I've had all the bloodtest for herpes viruses, been treated for EBV and HHV-6a, but still have never had any testes on my IMMUNE SYSTEM.

That's what I am waiting for....and hoping for....1. What happened to my immune/neuro immune system when I got hit with severe mono? 2. What is happening to my immune/neuro immune system now? 3. What the heck can I do about it?

Anyways, it just always seems after reading posts online for years and years (what else can I do at this point? pretty much nothing) that Mono seems to be a HUGE trigger for M.E./CFS in those who were severely infected.

-Did your M.E./CFS start with mono?
-How severely were you infected?
-Have you ever been tested/treated for possible still active herpes infections, with no, little, moderate, or huge success? Did the improvement last?

If so, I'd love to hear your stories.

Here's an anticipatory "Nice to meet you" to everyone who replies :Retro redface:

"I have found it easier to identify with the characters who verge upon hysteria, who were frightened of life, who were desperate to reach out to another person. But these seemingly fragile people are the strong people really. "
Tennessee Williams

I myself had mono very severely when a teen but DIDNT get CFS/ME from it. I was sick, bedridden.. extremely high fevers to the point i passed out twice and was delarious, bedridden for 10 weeks with mono but recovered like a normal person... thou having mono that severe and that extended isnt normal. I didnt get CFS/ME till 11 years later.

So my theory is that there was "something" wrong with my immune system already and hence that is why i got mono so badly in the first place.

There is also something else interesting about all that time before i got mono, is that i NEVER got colds and flus, i dont think i had to even miss ONE DAY out of my whole school years due to a cold or flu. This is exactly the same situation some with CFS/ME have, they dont catch colds. So i guess my extremely "abnormally" healthy childhood (till i got mono at about 14yrs) was actually a sign there was something different going on with me. (thou i did get measles at about 2 years old.. i needed a BLOOD TRANSFUSION at 4 years old and was abnormally healthy from then).

I dont know if you if you've read about those with CFS/ME having an imbalance in their immune systems to do with Th1/Th2 with it instead of being in balance its one sided.... allowing us to get things like mono easier.. my strange no colds ever childhood i think may of been indicating mine was one sided (and hence then leaving me prone to get mono later on).

Anyway.. that is my take.. i got mono severe (but then recovered) due to something being very different about my immune system in the first place.
............

Note i was the first in my family to get CFS/ME and now two other family members have it... (one who i only had contact with on one occassion while having CFS/ME symptoms). could the three of us all be cause of the blood transfusion i had when only 4 years old.. way.. way back?

I also cant catch chicken pox.. Ive babysat a family of 5 children with chickenpox, my own children also had chickenpox .... my 3 sisters also had chickenpox when i was growing up.. i seem to be immune to catching chickenpox.

 

[bakercape]

My Families CFS started

Post Mono. I got mono first in 1987 then developed CFS. I was 17.I never recovered from the mono . I did also have chicken pox at the same time I got the mono.

The rest of my family got CFS at the same time. My brother got mono and developed CFS. My mom got CFS but was diagnosed Chronic Lyme. She got sick the same time we did with the Mono and she started having shingles. She never has tested pos. for Lyme so I'm sure she has CFS.

Then my sister and Dad got it too.

What I never understood and still don't is how did my mom and dad who were in there 50's become affected by my Mono . Because as I understand it they would have had exposure to EBV much earlier in there lives. It has never made sense to me.

That's why I'm hoping the XMRV discovery will give my family some answers because Mono just doesn't seem to explain 50 year olds getting sick with CFS to me.

 

[justy]

I had Glandular quite badly as a young teenager and was of school for a long time. My health suffered on and off for years after that. I worked in a pharmacy through college and it was the pharmacist who first told me that it can take years to clear the system and you can always get flare ups. I didnt get ill with M.E for another 10 years, then had a remmission for 12 (ish) years and now have M.E again, but much more severely.

 

[justy]

Sorry, that should say Glandualr Fever. As we call it in the U.K.

 

[lucy]

I first came down with fatigue, last summer, which was atributed to mono, as monocyte count was the only wrong thing in my tests. It was confirmed by EBV elisa tests as reactivated EBV. 2 months ago EBV test result was "doubt", which as I understand is insufficient amount of virus to be positive. My dr. told I was healing. But not much has changed a lot: still pain in left side of abdomen, fever and severe delayed onset muscle soreness from minor activities, such as for example getting sore face muscles from looking though the telescope. Some time ago I started sugar, gluten and starch free diet and it had positive results: several weeks with no fever, until I ate some fruits. This diet also made another thing clear - it appears I had some kind of parasites, but after taking antihelminth medicine they could not be confirmed in stool tests and i had not done them before. Instead this test showed I have limited b. hominis infection, I have no idea if it is serious or not, going to see my dr. tmrw. So - from my experience, if mononucleosis is not acute and EBV is reactivated, reasons could be other, namely the holy gut. I guess there must be a combination of things, such as either extreme stress, gut problems together with yeast problems to have ebv reactivated.

 

[ukxmrv]

My acute viral onset wasn't mono (or Glandular fever as we call it here). The hospital tested but it was not signifigent. I'd had GF about 4 years previous to the start of ME for me. It was different.

Over the years though I've had tests for EBV though and consistantly it keeps showing up as reactivated.

XMRV+

 

[dancer]

When the flu-like illness kept returning, my cardiac function seemed to decline, and I was able to do less and less, I was tested for mono and it was positive, along with EBV titers suggesting recent infection. (I'd already been crushingly ill for four months by then).

I'm guessing this was a reactivation of childhood EBV and/or teen mono...since it seems odd as a 48 year-old who wasn't exposed to anyone with mono to contract it at that age. It's been three years mostly bedridden since. Have gone from almost zero function to slight improvement - I can do one or two light chores a day. But cognitive loss has gotten worse since the initial illness.

 

[Alesh]

My ME/CFS started suddenly with something that looked like an infectious mononucleosis. However, the blood tests that confirmed the presence of antibodies to EBV were done with some delay so that it was impossible to tell if it was a primoinfection or reactivation perhaps due to another, CFS-causative infection. I was 22 and the following 1-2 years I was regularly diagnosed as having "active EBV infection".

 

[SickOfSickness]

I have EBV numbers showing past infection and bordering on chronic infection, but not quite. However I never had a major bout of mono. There was one time I was sick for about a week and it lingered somewhat, and I guess that must have been when I got infected. I already had CFIDS/ME before that. I don't know any time I was sick in bed for over a week.

 

[heapsreal]

something i posted in another thread in reguards to herpes viruses which i found recently scouting the net for info. Our immune system releases/secretes? interferon to help fight viral infections(through natural killer cell stimulation), one way these herpes viruses try to avoid our immune systems is to turn down this interferon production so it can survive longer. This might also be why alot of cfsers have low nk cell dysfunction. In my experience with av's, i have found when my viral load decreases my nk cell function improves. I think that herpes virus cfsers may be a sub group as dr lerner has had success treating this sub group and also the Dubbo study which shows 10% of people who get glandular fever have ongoing fatigue. I think even dr klimas wrote that ebv, cmv etc arent the cause of cfs but there is a group of people who fit into that category that they cant explain any other way then from reactivated herpes infections. but as more light is shed on xmrv this called all change.

cheers!!

 

[Michael Dessin]

I got mono at 17..for two weeks extreme exhaustion and throat infection...after that, was good until 20 and came down with ME

 

[TheMoonIsBlue]

Post mono CFS/M.E.

Hey everyone,

Despite what many doctors say, I do think it is possible to have mono more than once for sure. Before I got hit with a severe case of mono, I can remember having two almost identical such cases (although about 1/2 in their severity of sickness) with the same symptoms, extreme exhaustion, sever sore throat, swollen nodes, muscles so sore I could hardly roll over in bed, fever, .......but both times, those resolved themselves within 1-2 weeks. After that, I wasn't back to 100% health but was gradually able to get back to a point where I could do almost everything I was before, but never really felt the same....

Also had a severe "stomach flu" which predated my CFS by 3 years, and altleast 2 more cases of severe stomach flu before that (I did test positive for Coxsackie virus)

I remember talking to one doctor (not a CFS doctor) and I simply said "I had mono (X) number of years ago, and I have just never fully recovered. I am tired ALL the time."

He didn't act shocked, or in disbelief, or anything.........he just looked at me and just sort of shook his head and said "Yes, that happens sometimes." I think he felt pretty sorry for me actually!

I don't think Post viral fatigue syndrome is new or nonesensense to any good doctor.........we just have to get rid of the "post" part as it these viruses are still in us, and new ones being disocovered and detected every day.

Sad that in 2010, more doctors don't put patients with severe mono/herpes infection on anti-herpetic medicines right from the start. Could early intervention lead to a lesser degree of illness later on?

 

[xrayspex]

moon--do they ever put mono patients on valtrex and the like nowadays?

it was in the mid 70s early 80s when i experienced it and I remember hearing that mono you get once but the docs knew i was sick so one of the times I got sick again I remember the mention of an enterovirus I dont know if they tested me for that or guessed it cus they thought it was weird to keep getting mono....

now all these years later I am sort of playing around with valtrex briefly now and then in last year but seems to cause herx or mcs bad but also if I pulse it I notice improvements with brain and energy, the trick will be how often can I take it to make it worth it etc I am not up for any big herxy flare thing from taking anything regulr with no guarantees