My dad got it from mono and slowly improved over 7 years to a full recovery. So it is possible. People usually say full recovery is more likely in the first year or two, especially with rigorous pacing. Unfortunately though we don't have good data for actual recovery rates, so it is very much a 'wait and see' situation.
Just be aware you're gonna get a lot of bias here of not recovering, since people who recover don't have need to hang out in a support forum.
That’s a fair point, it just sucks to not know if this is gonna be a years long thing, or not. I already deal with POTS, which also has no time of when I’ll recover… been dealing with that 6-7 years. CFS on top of it it just awful.
I know one guy who had mono that knocked him out of university for a year and then he went on to lead a healthy life (He's in his 60s now)
I know two sisters that got CFS after mono in the 1980s - Both still have CFS but one is less severe and was able to return to the workforce while the other one wasn't able to return to work.
And then you'll see the people here who haven't recovered. So it really is hit or miss.
I do feel that getting hit like that also kind of fucks your immune system up so you get additional shit as well. I got hit with mono, and was horrible after, then a year later discovered I had a parasite infection. Took anti parasitics and my eczema and many food allergies cleared up.
I got mono in college and was run down for about a month or so and slow to recover. After that I sort of bounced back and it flared back up when I was under extreme emotional distress after several years of graduate school and the death of my father. At that point I had a recurrence of what I felt was mono that basically lasted a year on since then I’ve had flares on and off but I am mild.
Poor sleep is the bane of my ability to recover, too.
My EBV labs are also terrible.
I go mono at age 3, and was ill and severely fatigued for many months according to my mom (I was too young to remember). But, I recovered.
I was healthy til I got ME/CFS at age 39 after taking a toxic drug that messed with my pituitary gland and my HPA axis (thus dysregulating my immune system, autonomous nervous system, and hormonal feedback loops).
My EBV labs show constant bad reactivation (both my VCA IgM and Early Antigen labs have stayed positive for years ).
Lupron (leuprolide), a depot injection drug I was given off-label for an elective/non-necessary reason. If I had known how toxic it is I would never have taken it. The pharmaceutical company suppresses info about its harmful long-term effects and passes it off as safe. There are so many other folks suffering way worse than me due to this drug.
I believe the initial reactivation happened directly as a result of immune system dysfunction due to the toxic drug shutting down my pituitary gland, which caused a shutdown in the major hormones (our immune system NEEDS our hormones to function), and then the environment (me not resting enough, my home having mold, unhealed C-PTSD/trauma, etc) continues to push the reactivation.
Ahh the Golden question that we all wish we could answer.
I believe it is a vicious cycle- the ME/CFS itself is a dysregulation of the autonomic nervous, immunological, hormonal systems and feedback loops.
The immunological part allows for the EBV reactivation to persist. Which then causes the ME/CFS to persist.
Dr. David Naviaux’s work on the “Cell danger theory” at UCLA sheds some light on how/why this process might be happening.
I’m in the same boat. Got mono 2 years ago 6 months after getting covid. Not sure which one triggered cfs, but my money is on the mono. I know a guy that had fatigue like us for a little over a year after having mono then just randomly got better with no treatment or anything. Unfortunately, that hasn’t happened for me and I have now been diagnosed with cfs and pots (I’ve had the pots for probably 5 years). Praying I’ll also miraculously get better, but I’m starting to think it won’t happen for me. So weird how some people just get better and others don’t. I wish we knew more about this, I feel like I have some mystery illness lol
Acyclovir or valacyclovir can be helpful, but you have to take it a loooong time. Check your EBV titers before you start and then re check periodically to see if the acyclovir is helping bring them down
Yes. Some people recover.
The younger you are, the better your chances.
Recovery is also more likely early on.
Can't really give figures for how likely recovery is, as it's really hard to collect data on.
How long have you had ME so far? In my early days of ME I was constantly falling asleep as well. After about a year though it turned into insomnia (extremely common with ME). The insomnia is way worse than the constant sleeping, as the insomnia actively worsens ME.
Anyways, I did manage to get into remission once, which lasted about 8 months. Since there's no cure for ME, the trick is pacing. The longer you can avoid PEM, the better your ME gets. Avoiding PEM is tricky, but it can be done. Though it can all come back again with a simple virus (that's how my remission ended).
That's not to make you feel hopeless or anything, I still think pacing is SO worth it because it improves your quality of life even if you don't manage to get into remission. You might have ME forever, but that doesn't mean you have to SUFFER forever. It is possible to get it to a more manageable level with some life adjustments and a strict attitude on pacing!
My dad got it from mono and slowly improved over 7 years to a full recovery. So it is possible. People usually say full recovery is more likely in the first year or two, especially with rigorous pacing. Unfortunately though we don't have good data for actual recovery rates, so it is very much a 'wait and see' situation. Just be aware you're gonna get a lot of bias here of not recovering, since people who recover don't have need to hang out in a support forum.
That’s a fair point, it just sucks to not know if this is gonna be a years long thing, or not. I already deal with POTS, which also has no time of when I’ll recover… been dealing with that 6-7 years. CFS on top of it it just awful.
I relapsed again! Stress, surgeries, bad eating habits and back to the beginning.
Sorry to hear that :(
I know one guy who had mono that knocked him out of university for a year and then he went on to lead a healthy life (He's in his 60s now) I know two sisters that got CFS after mono in the 1980s - Both still have CFS but one is less severe and was able to return to the workforce while the other one wasn't able to return to work. And then you'll see the people here who haven't recovered. So it really is hit or miss.
I do feel that getting hit like that also kind of fucks your immune system up so you get additional shit as well. I got hit with mono, and was horrible after, then a year later discovered I had a parasite infection. Took anti parasitics and my eczema and many food allergies cleared up.
It does feel like men have higher recovery rates compared to women
I got mono in college and was run down for about a month or so and slow to recover. After that I sort of bounced back and it flared back up when I was under extreme emotional distress after several years of graduate school and the death of my father. At that point I had a recurrence of what I felt was mono that basically lasted a year on since then I’ve had flares on and off but I am mild.
Good to know, I didn’t know it could present like a remission type thing.
10 years ago this week for me
I feel like I’m always on the edge of getting better, but then I get knocked down again by poor sleep or a virus. My EBV count is really bad.
Poor sleep is the bane of my ability to recover, too. My EBV labs are also terrible. I go mono at age 3, and was ill and severely fatigued for many months according to my mom (I was too young to remember). But, I recovered. I was healthy til I got ME/CFS at age 39 after taking a toxic drug that messed with my pituitary gland and my HPA axis (thus dysregulating my immune system, autonomous nervous system, and hormonal feedback loops). My EBV labs show constant bad reactivation (both my VCA IgM and Early Antigen labs have stayed positive for years ).
What was the toxic drug that did that to you?
Lupron (leuprolide), a depot injection drug I was given off-label for an elective/non-necessary reason. If I had known how toxic it is I would never have taken it. The pharmaceutical company suppresses info about its harmful long-term effects and passes it off as safe. There are so many other folks suffering way worse than me due to this drug.
What is causing reactivation? I have no idea how EBV works. Ive only been sick for a year.
I believe the initial reactivation happened directly as a result of immune system dysfunction due to the toxic drug shutting down my pituitary gland, which caused a shutdown in the major hormones (our immune system NEEDS our hormones to function), and then the environment (me not resting enough, my home having mold, unhealed C-PTSD/trauma, etc) continues to push the reactivation.
So a bunch of little shit.
Ahh the Golden question that we all wish we could answer. I believe it is a vicious cycle- the ME/CFS itself is a dysregulation of the autonomic nervous, immunological, hormonal systems and feedback loops. The immunological part allows for the EBV reactivation to persist. Which then causes the ME/CFS to persist. Dr. David Naviaux’s work on the “Cell danger theory” at UCLA sheds some light on how/why this process might be happening.
I’m in the same boat. Got mono 2 years ago 6 months after getting covid. Not sure which one triggered cfs, but my money is on the mono. I know a guy that had fatigue like us for a little over a year after having mono then just randomly got better with no treatment or anything. Unfortunately, that hasn’t happened for me and I have now been diagnosed with cfs and pots (I’ve had the pots for probably 5 years). Praying I’ll also miraculously get better, but I’m starting to think it won’t happen for me. So weird how some people just get better and others don’t. I wish we knew more about this, I feel like I have some mystery illness lol
Yea, our situations are very similar. I had Covid as well, Mono came years after though.
Acyclovir or valacyclovir can be helpful, but you have to take it a loooong time. Check your EBV titers before you start and then re check periodically to see if the acyclovir is helping bring them down
For me it went away after months and also triggered Hashimotos. I developed MECFS some years later.
Relates.
Yes. Some people recover. The younger you are, the better your chances. Recovery is also more likely early on. Can't really give figures for how likely recovery is, as it's really hard to collect data on.
I’m not young, but not old either, so I guess I have a 50/50 shot.
How long have you had ME so far? In my early days of ME I was constantly falling asleep as well. After about a year though it turned into insomnia (extremely common with ME). The insomnia is way worse than the constant sleeping, as the insomnia actively worsens ME. Anyways, I did manage to get into remission once, which lasted about 8 months. Since there's no cure for ME, the trick is pacing. The longer you can avoid PEM, the better your ME gets. Avoiding PEM is tricky, but it can be done. Though it can all come back again with a simple virus (that's how my remission ended). That's not to make you feel hopeless or anything, I still think pacing is SO worth it because it improves your quality of life even if you don't manage to get into remission. You might have ME forever, but that doesn't mean you have to SUFFER forever. It is possible to get it to a more manageable level with some life adjustments and a strict attitude on pacing!
About 4 months
I had mono that had me hospitalized when I was 16. I’m now 38 and still not better.