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

[TheMoonIsBlue]

Xray- I think it depends on the doc. If I had a kid, or had mono, and still was extremely unwell after 2 months, I would go straight to a good I.D. doctor. I think some are prescribing valtrex for mono but it certainly isn't the norm. There is one doctor who thinks CFS is a prolonged mononucleosis syndrome and we still have the original EBV, or CMV, whatever. I don't think a trial of acyclovir or a tried and true and generally safe med such as would be a bad idea, but the doctors still aren't doing it.

I mean they give valtrex for cold sores! And lifelong for genital herpes.

I don't understand the logic of watching someone stay sick for 3 months, then 6 moths, then 1 year, then 3 years, then 10 year, etc...and not trying things. But we're at the mercy of the doctors we can find.

P.S. Valtrex was tough on my G.I. system.

 

[xrayspex]

Yes, I was just trying valtrex again this summer, pulsing it every other day only half a tablet and it did increase my pain but decreased o2 hunger, then I had to get a root canal and it made that pain worse so I stopped it and now i am getting over the root canal alright it seems but dont want to do valtrex again til my system calms down, but i am thinking I seem pretty hearty an wondering if doing the valtrex , well if reaping the benefits now.Its tricky cus I am really starting to think the key is PULSING, do it for short term, enjoy bennies awhile and not have to put up with the herx all the time then after awhile go at it again and recycle that.....

oh but yes i think valtrex hurt my gut
another reason to pulse
and use mutaflor and amylase

 

[JAXintheCity]

Xray- I think it depends on the doc. If I had a kid, or had mono, and still was extremely unwell after 2 months, I would go straight to a good I.D. doctor. I think some are prescribing valtrex for mono but it certainly isn't the norm. There is one doctor who thinks CFS is a prolonged mononucleosis syndrome and we still have the original EBV, or CMV, whatever. I don't think a trial of acyclovir or a tried and true and generally safe med such as would be a bad idea, but the doctors still aren't doing it.

I mean they give valtrex for cold sores! And lifelong for genital herpes.

I don't understand the logic of watching someone stay sick for 3 months, then 6 moths, then 1 year, then 3 years, then 10 year, etc...and not trying things. But we're at the mercy of the doctors we can find.

P.S. Valtrex was tough on my G.I. system.

I can't believe that with constant re-activation of EBV, no doctor has ever put me on Valtrex! Instead...they prescribe me Provigil (a narcolepsy drug). Go figure?!?

 

[xrayspex]

ooooh provigil messed with me, at first, the first weekish, it was interesting and it had some aspects I liked but it really turned on me and was bad for me in even really small doses, my eyes were really effected with photophobia and pain and blurry vision. Some people can tolerate it with cfs it seems but I started googling after my negative experience and found Cheney's warning against it and rang true for me, be careful! Isn't it insane they would rather give that out then valtrex?

 

[JAXintheCity]

ooooh provigil messed with me, at first, the first weekish, it was interesting and it had some aspects I liked but it really turned on me and was bad for me in even really small doses, my eyes were really effected with photophobia and pain and blurry vision. Some people can tolerate it with cfs it seems but I started googling after my negative experience and found Cheney's warning against it and rang true for me, be careful! Isn't it insane they would rather give that out then valtrex?

Totally! Honestly, provigil is the only thing that gives me basic functioning throughout the day...but it also helps mask symptoms and lead to some of the worst flares in my life. I agree that the photophobia and blurry vision is nasty, too. But what else are my options? Gotta work... somewhat.

 

[xrayspex]

Jax, wow you get the photophobia etc too? Well I am glad it helps though, the side fx were just too severe for me, when I got in my car and the reflection off the mirror blinded me I was like no way this is over the top,plus the eye pain was bad. I also got anhedonia or something to where I didtn feel like talking,antisocial, I think same things tht some kids are forced to go on ritalin feel, shut down. Be careful, find Cheneys thing on it, if he is right maybe its better to take it easy and not jack yrself up that way.......but I understand! its why I still drink caffeine sometimes against my better judgement.

 

[*GG*]

Yup, that's how my ME/CFIDS/CFS started, with Mono!

 

[TheMoonIsBlue]

CFS/Mono...Provigil/Valtrex

Oh boy Provigil.........I tried that as well. First I started with just 1 tab first thing when I woke up. It made my whole body shake! My hands would shake and my body would like......vibrate like I was on speed or something! And it isn't even a stimulant. I wonder what the heck something like adderall would do to me? I then tried just 1/2 tab and still felt totally wired and shaky. Yes...it didn't take away my exhaustion, it just sort of took my mind off it. Maybe because I was focusing on my body vibrating lol! Also messed up my sleep very badly.

If your IGG numbers for EBV are high enough, you may be able to find a decent I.D. or even a doctor of any speciality who is willing to help you out. It may not help, it may help a lot. Valtrex did help some of my symptoms but I still have pretty severe CFS.

I think after a year it was just killing my stomach........felt like I was swallowing a rock and getting awful acid reflux. Maybe getting the 500 mg instead of 1 gram tablets would be easier on the system.

But........then wasn't I reading the acyclovir or valtrex can make XMRV harder to treat with ARV's...ugh, I can't remember. Aren't there any easy answers in this disease?

 

[JAXintheCity]

Oh boy Provigil.........I tried that as well. First I started with just 1 tab first thing when I woke up. It made my whole body shake! My hands would shake and my body would like......vibrate like I was on speed or something! And it isn't even a stimulant. I wonder what the heck something like adderall would do to me? I then tried just 1/2 tab and still felt totally wired and shaky. Yes...it didn't take away my exhaustion, it just sort of took my mind off it. Maybe because I was focusing on my body vibrating lol! Also messed up my sleep very badly.

If your IGG numbers for EBV are high enough, you may be able to find a decent I.D. or even a doctor of any speciality who is willing to help you out. It may not help, it may help a lot. Valtrex did help some of my symptoms but I still have pretty severe CFS.

I think after a year it was just killing my stomach........felt like I was swallowing a rock and getting awful acid reflux. Maybe getting the 500 mg instead of 1 gram tablets would be easier on the system.

But........then wasn't I reading the acyclovir or valtrex can make XMRV harder to treat with ARV's...ugh, I can't remember. Aren't there any easy answers in this disease?

They put my sister on Valtrex when she first got sick...but no improvement. I've never had an I.D. doctor try it. Luckily, I am ordering my XMRV kit today and have a doctor to sign off on the test! And, new insurance and a doctor who will refer me out...so maybe, in a few months, I will actually be UNDER A DOCTOR'S 'CARE'!!! That only took 11 years...

 

[Rita]

I have also a CFS post viral ,after mononucleosis .My IGg numbers EBV are about 750