"Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome"

[MartinK]

Care must be taken with interferons. EBV is a very clever virus and takes advantage of the increase in IFN-γ produced during the antiviral response to infect new cells. Since IFN-γ enhances the immune response by increasing the expression of MHC-II in cells so that they present more antigens. This increase in MHC-II is exploited by EBV to infect new cells through gp42-MHCII interaction that previously did not express it.

@Manuel very interesting! Thx! But I would need a little clarification on how to look at it - I have VERY low IFN-γ in my blood tests. How to read it in conjunction with EBV according to what you write?

 

[WinterWren]

@Manuel This has probably been discussed, so I apologize, I’m having trouble reading. Does 23 and Me or any other easy to obtain genetic test give the information needed to see if you’re in the EBV subclass that you’re looking at (with those HLA alleles?)?

 

[Rim1]

Yes, I saw the post on Moderna's EBV vaccine, even though it looks like it is designed to prevent infection, I would still want to try it in the hopes that it would kick my system into recognizing the EBV. I'm one of the rare people who felt better from the COVID vaccine and booster, presumably because it helped rev up my Th1 immunity. If I remember, you didn't do so well with it.

I also had improvement after each dose of Covid vaccine for some days and also after infections for a few days. Having been trying to understand why is that. I am CFS not long covid

 

[Shanti1]

I also had improvement after each dose of Covid vaccine for some days and also after infections for a few days. Having been trying to understand why is that. I am CFS not long covid

Do you suspect you have chronic, low-grade infection with any viruses or other pathogens? I suspect that in some people, the COVID vaccines can stimulate immune function is such a way that they get some recognition and clearance. Did you have any fever from the vaccines?

 

[Rim1]

Do you suspect you have chronic, low-grade infection with any viruses or other pathogens? I suspect that in some people, the COVID vaccines can stimulate immune function is such a way that they get some recognition and clearance. Did you have any fever from the vaccines?

No fever from vaccines, just CFS improvement for some days.
Yes one possibility is the one you say, that the immune system 'wakes up' and addresses some virus.
The other one is that during infection or after vaccine the immune system is busy with those and doesn't implement it's normal response that causes the CFS, for those days (maybe some autoimmune mechanism or smth like that, which may be at the basis of CFS).
Yes my thought is that a chronic virus is at the basis of CFS.

 

[Shanti1]

The other one is that during infection or after vaccine the immune system is busy with those and doesn't implement it's normal response that causes the CFS for those days (maybe some autoimmune mechanism or smth like that, which may be at the basis of CFS).

Also completely feasible!

 

[Rim1]

Also completely feasible!

Actually more feasible, being the effect so rapid.

 

[Rufous McKinney]

also after infections for a few days.

recently had "my stomach thing" happen yet again.

For about a week after major gastroperesis which seemed tied to something infectious and reactivating, my intestines behaved really nicely for a whole week and the ME- symptoms , the more typical ones were at a low level.
then it all crept back and by three weeks later Im back to the baseline state, ME ridden.

now in my case, I think its associated with starving my intestines of any food (about seven days of no gut activity)

 

[Shanti1]

Actually more feasible, being the effect so rapid.

In my case, my first improvement started a couple days after my first COVID vaccine (pfizer) and continued through to the second and for about 2.5 months after the second injection. It was accompanied by an intermittent fever and characterized by some resolution in lymphadenopathy, fatigue, and brain fog. About 4 months later, when I started on valacyclovir, I had the same type of symptoms that I associated with pushing EBV back into latency and immune activation. So for myself, I felt that the mechanism of improvement after the vaccine was immune activation.

Funny thing is that both mechanisms could be different sides of the same coin. By stimulating a TH1 response, one person could clear viruses, while the other could experience improvement by a shift away from TH2 associated MCAS, allergy, and certain types of autoimmunity.

 

[BrightCandle]

I also had improvement after each dose of Covid vaccine for some days and also after infections for a few days. Having been trying to understand why is that. I am CFS not long covid

One thing I noticed taking the first set of autovaccines for the CBIS theory was that I felt a bit worse while taking them but there was a notable period of about 3 weeks after where I felt almost normal, then gradually I got worse. It would not surprise me if there is a temporary boost in function when we wake the immune system up and focus it on a new invader based on what I have seen. In the past when I was more mild and still out and about colds seemed to actually be positive things, I felt better after they had mostly resolved and I barely suffered from them. There is definitely something to getting the immune system focussed on something.

However the Covid vaccines did not do that for me, my arm hurt and I felt worse for a few days and that was it. However I got wuhan strain before the darn thing even had a western name so its possible my body took one look at those vaccine spikes and cleaned them up without much trouble and it didn't distract/induce the part that matters.

 

[2Cor.12:19]

How is the acute infection not mononucleosis? (I was diagnosed with impossible mono four times pre 1974.)

@Rufous McKinney I tested negative on the monospot test and I also didn't have the typical mono symtoms; eg; killer sore throat, etc. I tested positive for EBV and have never been so sick in my life with many neurological symptoms and also flu-like symptoms. My EBV titers remained elevated 6 months later. Years later I tested positive for HHV6, so I may have had that as well. Who knows?

 

[lenora]

Unfortunately, that's the biggest problem with us.....we're definitely not all sharing the same symptoms or even test results. Of course that makes research so much harder, thus the reason we still flail along.

It is important to rule out all obvious illnesses that can most likely be helped. Many share the same symptoms, so it's hard to find the root cause of so many problems. The other thing that occurs is that symptoms change over the years, so what can be diagnosed at that point?

Just keep doing what you can....if you're bedridden (and are able to) do light exercises that will keep you safer from blood clots and muscle wasting. I'm sure plenty can be found on youtube. If you're able to walk to the bathroom or elsewhere, then do so. I sit on my porch so that I'm at least activating different muscles. Simply do what you can.....and don't feel that you "have to."

We're each dealing with our own individual situations in the best possible way for us. I've been waiting for an answer long before the early days of AIDS....nope, still waiting, but I'm somewhat better overall. I know some who aren't.....and that's rather heartbreaking. Research continues. Read the history of this illness and you may be surprised to find exactly how long it has been known about. So many others have had the same condition.. Yours, Lenora

 

[cfs since 1998]

For the valacyclovir, I take a dark blue generic "F83". When I was in the first month of my prescription, it was once filled with a white generic instead of the blue and I noticed that I reacted significantly more to the white version

Just saw this post from 2021. That's funny because I started with the blue (Auribindo) and reacted horribly. I am willing to bet you had a reaction to the white because you took it first. How long were you on it before you switched?

I'm on my 3rd attempt of taking valacyclovir. I've been on 500mg twice a day since May 1st. The first 5-6 weeks I went through cycles of worsening and stabilizing. Haven't seen an improvement yet.

 

[Shanti1]

I was actually on the blue and then switched to the white and couldn't tolerate it, and had to go back to the blue. Now that I have been on valacyclovir for 3+ years, I can take either one with no problem. It makes me wonder if the white one I took was somehow stronger and the herx or immune flair was stronger from it? I'm not really sure, but the first few months on valacyclovir were tough. I had to titrate up from 1000mg once a day to 1000mg tid, couldn't take the full dose at first.

 

[cfs since 1998]

I was actually on the blue and then switched to the white and couldn't tolerate it, and had to go back to the blue. Now that I have been on valacyclovir for 3+ years, I can take either one with no problem. It makes me wonder if the white one I took was somehow stronger and the herx or immune flair was stronger from it? I'm not really sure, but the first few months on valacyclovir were tough. I had to titrate up from 1000mg once a day to 1000mg tid, couldn't take the full dose at first.

Oh I see. I'm on the white now and it seems like I'm handling it better. It's really hard to tell though. Some days it seems like I'm stable and other times like I might be getting worse. And I can't tell if my SFN is getting worse or not. Sometimes I feel like stopping because at least I wasn't getting worse when I wasn't taking anything.

Do you feel like you're any better than you were 3 years ago?

 

[junkcrap50]

Just saw this post from 2021. That's funny because I started with the blue (Auribindo) and reacted horribly. I am willing to bet you had a reaction to the white because you took it first. How long were you on it before you switched?

I'm on my 3rd attempt of taking valacyclovir. I've been on 500mg twice a day since May 1st. The first 5-6 weeks I went through cycles of worsening and stabilizing. Haven't seen an improvement yet.

@ilivewithcfs , you might be interested in this valacyclovir discussion regarding dyes/fillers, considering your valacyclovir causing insomnia. I didn't know you could get white valacyclovir. But considering you also had insomnia with acyclovir (which i white / doesn't have blue as far as i know), the dye might not be the issue.

 

[Shanti1]

Do you feel like you're any better than you were 3 years ago?

At first, I wasn't sure if I was reacting to the medication or if it was an immune response as my immune system started to recognize/react to the virus. I was fortunate that my lymphadenopathy/sore throat started to improve the fist week and this was my sign that the antiviral was doing something good. Next came improvements in brain fog, but I think it took 4-6 months before all "side effects" cleared. Now I don't react to valacyclovir anymore than to a glass of water. So in my case, all the initial side effects were due to the immune system recognizing the EBV.

I have had ups and downs, but overall, I am better than 3 years ago. When I started improving with valacyclovir, I thought I had found the answer, but my improvement plateaued. The valacyclovir helped most with brain fog and flu symptoms. In addition to addressing EBV, I'm now also addressing a Candida krusei overgrowth with nystatin, and a mold exposure (the door of my fridge had a leak and was filled with stachybotrys).

I've tested for lots of stealth infections and toxic exposures and I've been fortunate to be able to identify three of my "hits" (EBV, candida, stachybotrys) and that there are actionable ways to address them. I'm still limited in what I can do, rely on medications, and have to wear full leg and abdominal compression to get out of bed.... but I have gone from moderate to mild. I am able to hold a job (from home), leave the house, and spend limited time with friends, for which I am very grateful.

 

[cfs since 1998]

At first, I wasn't sure if I was reacting to the medication or if it was an immune response as my immune system started to recognize/react to the virus. I was fortunate that my lymphadenopathy/sore throat started to improve the fist week and this was my sign that the antiviral was doing something good. Next came improvements in brain fog, but I think it took 4-6 months before all "side effects" cleared. Now I don't react to valacyclovir anymore than to a glass of water. So in my case, all the initial side effects were due to the immune system recognizing the EBV.

I have had ups and downs, but overall, I am better than 3 years ago. When I started improving with valacyclovir, I thought I had found the answer, but my improvement plateaued. The valacyclovir helped most with brain fog and flu symptoms. In addition to addressing EBV, I'm now also addressing a Candida krusei overgrowth with nystatin, and a mold exposure (the door of my fridge had a leak and was filled with stachybotrys).

I've tested for lots of stealth infections and toxic exposures and I've been fortunate to be able to identify three of my "hits" (EBV, candida, stachybotrys) and that there are actionable ways to address them. I'm still limited in what I can do, rely on medications, and have to wear full leg and abdominal compression to get out of bed.... but I have gone from moderate to mild. I am able to hold a job (from home), leave the house, and spend limited time with friends, for which I am very grateful.

Thank you, Shanti1. That is surprising it took so long to get over the side effects, but also not surprising. That could explain why antivirals seem to have had a relatively poor success rate. First, I think a lot of people give up by then. Second, they might be starting the full dose too soon instead of starting small and working up, making themselves worse in the process (which is what happened to me). Glad to hear that sticking with it helped you.