EBV and M/E

[SOC]

I think EBV is going to be a major (but probably not the only) player in ME/CFS. The original studies that showed that EBV could not be the cause of ME/CFS concluded that because many patients did not have active EBV infections (as far as they could tell) and some had never even been exposed -- that is, they had not antibodies to it of any kind.

While such research can be very convincing from one point of view -- if some patients had never been exposed, how could EBV be the cause -- there are a lot of questions that give rise to whether or not EBV is a major factor.

It's not clear that the patient set they used was exclusively ME/CFS patients. If a significant number of people with other fatigue conditions were included (as they likely were) then it's possible they were the ones without infections. Also, it has been shown since that time that antibody titres are not absolutely accurate in identifying chronic herpesvirus infections.

For a completely different perspective -- herpesvirus infections (EBV, HSV-1, HHV-6, CMV...) are always a concern in cases of immune deficiency because they can reactivate fairly easily if the immune system is not in peak condition. So while herpesviruses may be a major player in ME/CFS, they may be secondary to some primary (or even secondary itself) immune dysfunction.

Way too many questions, and way, way too few answers.

 

[SOC]

Yes that's possible and I was just reading a thread about Dr Lerner who seems to get a few patients well on antivirals. From reading that thread, however, it seems that only a subset of patients are that "straightforward" to treat and then get well.
Also there are other infections that are one with CFS in symptoms. Other herpes viruses, Dr Chia's viruses I remember, Lyme disease...and EBV and Lyme seem to be good mates according to some research, as often are present together.

Agreed. Two member of my family, one in his late 60's-early 70's and one just under 20, have gone into full remission under Dr L's treatment. Both, however, had fairly straightforward herpesvirus infections without additional complicating infections. That may or may not have been a factor.

The older patient stayed on antivirals a very long time, but improved continuously on them. The younger was on Valcyte only about 18 months.

I have not been on antivirals as long as my older relative, but seem to have plateaued. I was also sicker than either one of them when I started antivirals. The older one was something like a 7/10 at the beginning, the younger about 5/10. I was more in the 2-3/10 range. I also have additional infections, also probably secondary to immune dysfunction.

I have improved substantially in terms of pain, cognitive issues, and flu-like symptoms. I don't feel like I've been hit by a truck all the time. I still have significant PEM which initiates with very minor activity and everything -- pain, fog, flu-like symptoms, some neurological -- comes crashing back.

I speculate that becoming more ill and/or being continuously ill for a longer time may be a factor in why Dr L's treatment, while definitely worthwhile, has not put me into remission as it did my other family members. It might be because some permanent (or long-term) damages was done. It might be that, for whatever reason, I had worse immune dysfunction and developed additional infections that we're still fighting. It might be that the infections have wormed into some difficult-to-get-at places like the CNS. There's just no way to tell.

So, while I agree that Dr L's treatment has the best effect for straightforward cases, in my case, at least, it can still have a significant positive impact on more complicated cases.

 

[heapsreal]

When reading info on ebv they say most people as in 95%+ over 30 y/o have had ebv. Now some cfsers test negative even to ebv igg, how does that happen, i think some lose their ability to produce antibodies. This is what happened to me as i tested postive to ebv igg early on in my cfs and a few years later tested negative to these life long antibodies?? Ater reading oslers web, there were patients in that book who were once positive to ebv igg and then lost these life long antibodies several years later. I definately think there is something going on with ebv, problem is many docs dismiss it as a benign illness unless u have HIV or cancer.

 

[mellster]

Also I believe modern research has shown that EBV constantly reactivates even in healthy people and constantly tests the immune system even though it might never produce any significant symptoms.

 

[SOC]

Also I believe modern research has shown that EBV constantly reactivates even in healthy people and constantly tests the immune system even though it might never produce any significant symptoms.

I think you're right, mellster. That's why everybody has it, because we're all constantly exposed to it by multiple people. If only we had an adequate immune system to keep suppressing it like everybody else.

 

[mellster]

I think you're right, mellster. That's why everybody has it, because we're all constantly exposed to it by multiple people. If only we had an adequate immune system to keep suppressing it like everybody else.

But at least there's stuff out there to specifically tackle this, I recommend trying 2LEBV from LaboLife - inexpensive product with great reviews (which I have taken in the past).
cheers

 

[August59]

The tricky thing about EBV is the ablity for thr EBNA to integrate into a B-cell and live there unnoticable and actually keeping the B-cell alive while in there. It's not detectable by any test as far as I know. I have never had Mono, so was probably exposed at a very young age when it can by considered a mild cold.

I'm pretty convinced that is is why many of the patients taking the Rituximab are doing well because if it is killing the B-cell then it is killing the EBNA protein hiding inside the B-cells. This mass die-off might be fosteriing a mass re-activation when they go off of the Rituximab. Following the Rituximab up with Valtrex or Valcyte if HHV6 is involved in anyway might keep the EBV from re-activating while B-cells are reproducing. Just a theory!

 

[soxfan]

I have high titers of EBV but am not sure it is reactivated because I don't have the common symptoms associated with EBV...My doctor told me it was "somewhat active"..what in the world does that mean???

 

[GhostGum]

Just to add to this there is an interesting thread here on tackling herpes viruses,

http://www.longecity.org/forum/topic/53398-emodin-has-potent-anti-herpes-activity/

Have not delved into it myself and tried the main things mentioned there since I am happy with what I take for now but probably should.

 

[TheMoonIsBlue]

RE: Antiviral Response and People with SLEEP DISORDERS:

One thing comes to mind in particular about Antivirals from my own experience and what I have read from others:

People who have long term complicated SLEEP PROBLEMS (insomnia, DSPS, non 24 hr sleep wake disorder, lack of stage 3/4 sleep, frequent awakenings...) as part of their illness don't seem to do as well in achieving complete or near complete remission on Antivirals.

Many still achieve great improvement- but it seems whenever I run across another person with severe sleep dysfunction, it is a great hindrance to their AV treatment. AV's can make sleep problems worse for some (although also can make them better if viral load is lowered and that is one of the reasons for their sleep problems) and we all know, when we are lacking sleep, ANY type of healing is much, much more difficult......and maybe progress is even stopped?

I also think that people who have HORMONAL problems seem to have issues as well, especially females with severe PMS problems.

Also: Severity of illness at start of treatment I think is a major player. I am not really sure how much difference length of illness plays. Because a person could be sick 15 years and be functioning at 70% or a person could be sick 2 years and functioning at 10%, who will respond better to AV's if for example EBV turns out to be a major culprit in their illness?

----------------SOC: I am wondering if you daughter has or had any major sleep problems, or hormonal problems? (if you don't mind my asking) Or your other family member who responded to long term AV treatment?

 

[heapsreal]

interesting moonisblue, I think the sleep dysfunction plays a part as it worsens our immune dysfunction, i havent really correlated the sleep dysfunction with those on av's, interesting concept though. i can say av's havent worsened my sleep but i definately have sleep issues before av's and now. Shows the importence of trying everything to improve sleep though.

cheers!!!

 

[TheMoonIsBlue]

Hi heapsreal, I had a weird occurance where at about the 5 month mark of being on both valtrex and valcyte my sleep problems just totally went away........for a total of about 5 days!! lol. But that was the first time EVER in many many many years.

But then it went back to being the same crap all over again. Actually got much worse. The AV's did worsen my sleep problems, not the whole duration of treatment, but I'd say on the whole. Then all the crazy sleep cycle problems started in addition.

I dunno why some of us can sleep w/o meds and others can't. Or develope sleep rhythm problems that would have most sleep specialist in the world throwing their hands up in the air.

 

[heapsreal]

my doc says the sleep dysfunction comes from the hypothalamus, which i think it depends on how the infection/s damage the sleep centre there or not, but its just an educational guess i think. for others the infections damage other parts of the brain, i suppose why some get pots and others dont etc??

but gee i wish they would find a dam cure for sleep, i think alot of us would improve alot with just that.

cheers!!!

 

[SOC]

----------------SOC: I am wondering if you daughter has or had any major sleep problems, or hormonal problems? (if you don't mind my asking) Or your other family member who responded to long term AV treatment?

Sorry I didn't see this and answer sooner. I'm loving the new "You've been tagged" thing. Now I'm less likely to miss these kinds of things.

My daughter had falling asleep problems from birth, but not staying asleep problems, also a shifted sleep/wake cycle by 4-6 hours. That improved with ADs which she started taking after she developed ME/CFS. Her sleep problems were never as bad as mine -- trouble falling asleep, trouble staying asleep, shifted sleep/wake cycle. I don't know about my uncle's sleep.

Not sure what qualify as "hormonal problems". Certainly none have been diagnosed, but we all know how much that means.

 

[TheMoonIsBlue]

Did I tag you, SOC? I'm going to have to figure out what that means lol. Still learning these boards!

I wonder if those with much more complicated sleep problems are affected differently. Mine were and have been a major hindrance and interference with almost all treatments because most meds have made the sleep problems worse. I wonder if those w/o this problem are more likely to improve since they can stay on meds longer, try more things,....

Anyways I see you are described as an "empty nester", which I hope means your daughter is out living life and loving it!

 

[SickOfSickness]

IMO EBV isn't a big player with ME.

I have a friend who was very active then got mono bad for 6 months. Then he was better but had to take it easier, doing 10 then 20% of the sports he used to. If he did more, he would cause a relapse. Now more years have passed so I believe he can do 50%. For example a runner who does 10-15 miles no problem, gets sick, and has to start with 1-2 miles being difficult, has worked up to 5-8 miles. Used to be, in the first years, he would try and run multiple miles, he would get sick for a couple weeks and have to rest a lot. It's all so much more than we can do. I do wonder if it's related to some ME relapses.

Another person I know works overtime, runs every day, but had mono a long time ago, and IMO has some signs of it still being there. I think he would be able to do even more if he had never come down with mono in his life.

I have high titers of EBV but am not sure it is reactivated because I don't have the common symptoms associated with EBV...My doctor told me it was "somewhat active"..what in the world does that mean???

That the doc doesn't know It's probably like mine, not in the active stage, but it's close. The lab has a category for chronic or reactivated, and they set a cut off. You could be near the cut off, either under or over.

 

[soxfan]

For me anti-virals made my sleep much worse...as if it could get any worse. I didn't stay on them very long mainly because of this problem.
My sleep doctor also said I have damage to the sleep center in my brain from the original infection and it is possibly permanent.
I still feel that Lyme was my original infection because I did get well on IV Rocephin. What I experience now is more of CFS type symptoms which I feel came after the Lyme. I am not sure why I developed these since I had become about 85 percent well...

I also feel that maybe EBV was activated at some point after the Lyme and could be the cause of my current symptoms because whatever I have now is definately not what I started out with back in 2004. I have declined alot since then....

 

[heapsreal]

hi sick of,

I was like your friend although i wasnt a runner but a weight lifter, i kept going up and down like this for a few years before crashing down to a level of working part time and lying in bed every spare moment and not exercising, i was hanging on by the skin of my teeth. I suppose its a severity thing and also related to a progression in the illness. I think having a high level of fitness pre cfs can mostly help one function at a higher level with cfs for a certain length of time. I think sometimes its easier for someone into fitness/sport to gauge their level of function lost as they are aware of what their top level of function is.

I had 3 of the herpes viruses, ebv/cmv/chickenpox which started the cfs ball rolling for me and it wasnt until i started antivirals that i started to improve, still unable to exercise without crashing but working full time. Im still not sure if its these viruses that cause it or if its an immune defiency that allows these viruses to reactivate or a combination. I think its uncomfirmed as to the extent of these herpes viruses play in cfs/me but the treatments that seem to show more improvement in patients are antivirals that effect these herpes viruses as compared to other treatments that are easily obtained by more cfsers. Also many docs dont know how to read viral testing,let alone send a patient for the proper testing or if its available in many countries. Many, many docs will see a patients ebv test showing positive to igg antibodies and say its just an old infection, its nothing to worry about, yeah right. Sub sets maybe but i think its a big sub set group and many off shoots of patients with other co-infections which make treating these infections more difficult. At the end of the day a healthy immune system will supress ebv etc. I think its going to take a combo of av's with some type of strong immune modulator to find a cure. Also there are many different levels of function in cfs/me, some may progress in severity maybe other dont, just like in MS??

just my opinion here,
cheers!!!

 

[soxfan]

heaps...I was a runner too. I actually think because I was in such good shape I was able to continue on for a while. I agree that it probably helped me function at a higher level as well which probably wasn't a good thing to do. My doctor at the time told me to keep running and working as normal. Maybe that is why today I can't run at all anymore.

I have definately decreased in the past couple of years in my level of functioning. I am thinking of maybe trying the a/v route again and add imunovir if the doctor is willing. I need to do something....

 

[SOC]

Did I tag you, SOC? I'm going to have to figure out what that means lol. Still learning these boards!

No, but other people have tagged me which clued me in to the whole thing. I might have missed their posts (like I did yours if they hadn't tagged me). It appears that if you type SOC in a post, I get an Alert about it. Very useful for those of us with less than perfect memories.

I wonder if those with much more complicated sleep problems are affected differently. Mine were and have been a major hindrance and interference with almost all treatments because most meds have made the sleep problems worse. I wonder if those w/o this problem are more likely to improve since they can stay on meds longer, try more things,....

I suspect that is true. I got my lifelong sleep problems under control fairly early in treatment (thanks to Drs Lapp/Black for that), so I haven't had to deal with sleep side effects from treatments. That's got to help when the treatment possibilities are so few.

Anyways I see you are described as an "empty nester", which I hope means your daughter is out living life and loving it!

Yep, she just moved out last weekend to go to a summer internship and from there straight to a campus apartment for her senior year. She's finally able to live full-time on campus which, while we'll miss her, is an important experience for her Up until now she's had to live at home for the support we (mostly Dad ) could give her while she battled ME/CFS and engineering school.

She's been doing wonderfully. She's been off Valcyte for 9 months, but is still on Valtrex. She does not appear to be limited, but is probably more cautious than most college students about getting enough rest and hasn't been to the gym to work out, although she gets in a lot of walking.

She has a darling boyfriend, new since she's been in remission, who is at the same time supportive of her taking care of her health and encouraging her to get out and explore the world. We should all be so lucky.

So, all is good. I keep her success in fighting this illness as a beacon of hope for myself and everyone else with this horrible disease.