Did your cfs start due to Epstein Barr?

[waitingyet]

How many of you started the me/cfs after having epsteinn barr?

 

[Rufous McKinney]

The thing is I may never Truly know what caused it.

After many decades, I got alot worse and frankly, started to think I'd picked up a new virus, which reactivates and causes extreme gastroperesis, which seemed to correspond with my downward spiral from mild for decades to: far far worse.

 

[Dysfunkion]

I honestly don't know besides that I started getting bad digestive issues in 2012 and slowly started losing tolerance to most food forcing me to go vegan, then I had some food poisoning event and I've been surviving on supplements and a special eating schedule so I get enough food but also don't enter complete brain and digestive shut down since. Slowly over time I started getting more environmental sensitivities and worse cognitive decline. It's a constant balancing act these days even though I'm more functional but symptoms trade around a lot.

I had when I was much younger frequent ear infections and got sick very often though with colds and stomach flu like episodes. I don't specifically remember what they said I had if they knew at all but I to a degree always had the gut inflammation issues and gilberts syndrome. I should have been tested for more but my parents just never did despite how much I was sick and how badly I got ill when I did. I may never know what caused it all in the first place besides knowing what event lead to the point where my body couldn't naturally sustain itself anymore no matter what I did.

 

[Wishful]

AFAIK, my ME started as a type IV sensitivity to oranges. I had that reaction slightly for decades, then it blew into full flu-like symptoms. I managed to stop that reaction, but the symptoms persisted, and I eventually realized they fit the criteria for ME. I don't know whether that immune reaction triggered my ME, or if I triggered the ME some other way and it caused the type IV sensitivity.

I honestly don't know besides that I started getting bad digestive issues in 2012 and slowly started losing tolerance to most food forcing me to go vegan, then I had some food poisoning event

A good example of how PWME are similar and different. I developed those intolerances (but no digestive problems), then got food poisoning which stopped the type IV sensitivity. I had a second correction of an intolerance from food poisoning recently, so food poisoning can be an effective treatment for me.

FWIW, eliminating EBV hasn't proven itself an effective cure for ME. Viruses of various types seem to be common triggers of ME, but don't seem to be the cause of it. I think it's an immune response that commonly triggers ME, but what triggers the immune response doesn't really matter.

It might be useful to figure out the commonality of those immune responses that do trigger ME. I can't recall anyone reporting that their trigger was a type I allergy, so that might rule out some immune responses. T-cells might be more likely, but maybe there's a common subset, or a ratio between one type of t-cell and B-cells or some such thing. I think that line of research might be more rewarding than focusing on EBV.

 

[cfs since 1998]

AFAIK, my ME started as a type IV sensitivity to oranges. I had that reaction slightly for decades, then it blew into full flu-like symptoms. I managed to stop that reaction, but the symptoms persisted, and I eventually realized they fit the criteria for ME. I don't know whether that immune reaction triggered my ME, or if I triggered the ME some other way and it caused the type IV sensitivity.


A good example of how PWME are similar and different. I developed those intolerances (but no digestive problems), then got food poisoning which stopped the type IV sensitivity. I had a second correction of an intolerance from food poisoning recently, so food poisoning can be an effective treatment for me.

FWIW, eliminating EBV hasn't proven itself an effective cure for ME. Viruses of various types seem to be common triggers of ME, but don't seem to be the cause of it. I think it's an immune response that commonly triggers ME, but what triggers the immune response doesn't really matter.

It might be useful to figure out the commonality of those immune responses that do trigger ME. I can't recall anyone reporting that their trigger was a type I allergy, so that might rule out some immune responses. T-cells might be more likely, but maybe there's a common subset, or a ratio between one type of t-cell and B-cells or some such thing. I think that line of research might be more rewarding than focusing on EBV.

ME is infectious. The term was invented for the Royal Free outbreak. Royal Free can't be tied to EBV, since EBV hadn't been discovered yet. CFS was named after the Incline Village outbreak. Also infectious. This was associated with EBV. Research over the years has found EBV-associated immune deficits. The immune systems of patients are hyporesponsive to EBV, but not other viruses or bacteria. ME/CFS is associated with increased lymphoma risk in several studies. EBV is associated with lymphoma. It was discovered in lymphoma patients, actually, and only later discovered to cause infectious mononucleosis/glandular fever.

So your allergic reaction to oranges does not fit ME diagnosis. Nor do your symptom patterns of going on hours long hikes and being able to turn your symptoms on and off at will. Nor would food allergies seem to be associated with lymphoma. Perhaps figuring out what you actually have, instead of diagnosing yourself with ME, would be more rewarding.

FWIW, eliminating EBV hasn't proven itself an effective cure for ME.

That is a funny thing to say since it isn't possible, therefore hasn't been tried.

 

[Rufous McKinney]

eliminating EBV hasn't proven itself an effective cure for ME.

from what I have gathered, the virus may not be replicating and therefore, maybe it was never "eliminated". Its possibly gone into hiding.

 

[Rufous McKinney]

Royal Free can't be tied to EBV, since EBV hadn't been discovered yet.

but EBV has existed despite whether humans knew that or not.

 

[Rufous McKinney]

ME/CFS is associated with increased lymphoma risk in several studies. EBV is associated with lymphoma. It was discovered in lymphoma patients, actually, and only later discovered to cause infectious mononucleosis/glandular fever.

I have a NH lymphoma diagnosis (at age 70) The lymphatic system is most affected by all this.

the biggest improvements to my lymphatic system seems to have occurred recently from trialing:

Prodrome Glia, a pricy supplement that contains plasmologen precursors.

 

[Rufous McKinney]

If we were to eliminate EBV from our body via some means (like say antivirals)......it's a very very common virus and almost everyone is exposed.

Wouldn't we just pick up EBV soon enough, yet again?

 

[hapl808]

Mine started most likely immediately after an EBV infection - although the testing was inconclusive (which I still don't understand). In addition, they started me immediately on prednisone which was often done in the 90's I think, but then the testing was inconclusive so they immediately stopped it.

My symptoms were pretty mild after that, until about 5 years later when I got a Hep B vaccine and traveled to SE Asia and got sick. That combination over a 7-day period wrecked my health - been dealing with it every day since.

 

[waitingyet]

Mine started most likely immediately after an EBV infection - although the testing was inconclusive (which I still don't understand). In addition, they started me immediately on prednisone which was often done in the 90's I think, but then the testing was inconclusive so they immediately stopped it.

My symptoms were pretty mild after that, until about 5 years later when I got a Hep B vaccine and traveled to SE Asia and got sick. That combination over a 7-day period wrecked my health - been dealing with it every day since.

In my case I got the ebv tested positive, I received prednisone for a week or few days in order to treat sore throat, they told me rest for months but I have never been the same since then, with the years I am getting worse (even now I got IgM (VCA) ebv positives and highs IgG (VCA) titers)

 

[Dysfunkion]

AFAIK, my ME started as a type IV sensitivity to oranges. I had that reaction slightly for decades, then it blew into full flu-like symptoms. I managed to stop that reaction, but the symptoms persisted, and I eventually realized they fit the criteria for ME. I don't know whether that immune reaction triggered my ME, or if I triggered the ME some other way and it caused the type IV sensitivity.


A good example of how PWME are similar and different. I developed those intolerances (but no digestive problems), then got food poisoning which stopped the type IV sensitivity. I had a second correction of an intolerance from food poisoning recently, so food poisoning can be an effective treatment for me.

FWIW, eliminating EBV hasn't proven itself an effective cure for ME. Viruses of various types seem to be common triggers of ME, but don't seem to be the cause of it. I think it's an immune response that commonly triggers ME, but what triggers the immune response doesn't really matter.

It might be useful to figure out the commonality of those immune responses that do trigger ME. I can't recall anyone reporting that their trigger was a type I allergy, so that might rule out some immune responses. T-cells might be more likely, but maybe there's a common subset, or a ratio between one type of t-cell and B-cells or some such thing. I think that line of research might be more rewarding than focusing on EBV.

I do remember this one time last year I got food poisoning from some bad scallops, eliminated all of my head pressure, cognitive slowness, and anxiety for almost a whole day and then it crept back in after. Never had a window like that before in my life, it was one of the weirdest things I ever experienced. I otherwise during it felt like garbage with my mood and my guts were a mess but it resolved all of the cognitive problems for a short period of time. I also based on this think it's some immune response that's stuck in a loop feeding other systems in a loop. I have had too many sudden windows before with non-repeatable instant switches for it not to be this. My brain and body at any given moment can clearly operate much better but something involving a mechanism that can immediately be switched on or off is blocking it.

Whatever I'm dealing with is currently most responsive to the light and enzyme treatments. With RLT my guts will respond the same way as my head/neck respond when used on them. So I have something going on with my guts but it's not just responding to things consumed and they respond to the light on my head/neck too. The only thing I can think of here is immune modulation effecting other systems stemming from chains of reactions going on between my guts and a bunch of systems in my head/neck area. If I use the red light on my head/neck this will also benefit my guts directly in the same way. The inflammation I'm experiencing in my head/neck area, cognitive dysfunction, the energy fluctuations, and what is going on in my guts are all directly connected through an immune involved pathway going in both directions is all I currently know for sure.

The biggest issue I'm running into right now though is these changes are such long range and appear to be tied directly to circadian sensitive mechanisms highly involved with the adenosine receptors (this is my current obsession lol). When you have long range chain reactions (outside the range of 3-4 days) tied not only to what you're consuming but when during the day you consumed something and things that are not even food influencing them directly, things get confusing. Wrapping things up on just a single focus to find something out about your situation becomes multiple month projects very quickly. I'm making progress but it's verrrryyyy sllllooooowwwwwww because of this.

 

[Wishful]

ME is infectious.

Has that been proven? Clusters of victims doesn't necessarily mean an infectious cause; there could be other environmental factors involved (chemical in water supply, or some such thing). It could be an environmental factor that made people more susceptible to a specific microbial strain, but the disease itself isn't infectious. I don't recall any proven cases of it being transmitted through body fluids.

So your allergic reaction to oranges does not fit ME diagnosis.

It wasn't an allergic (type I hypersensitivity) reaction. Type IV is more similar to a viral response.

Nor do your symptom patterns of going on hours long hikes and being able to turn your symptoms on and off at will.

Other people report similar on/off responses (not at will) and ability to do physical exertion far beyond my bike rides and hikes (one did serious bodybuilding). If we knew what ME's mechanism was, I expect the diagnostic criteria would allow a lot more cases that don't fit the present criteria. When you have a malfunction involving a lot of interacting subsystems, there's potential for some individuals to have a variation in those subsystems that bypasses, blocks, or otherwise alters the typical mechanism.

Nor would food allergies seem to be associated with lymphoma

I don't have any food allergies, and the type IV reaction disappeared after food poisoning, so I assume a microbe was responsible for the immune cell malfunction. Increased risk of lymphoma doesn't mean that all PWME must have it, so I don't see the connection.

I don't see much argument that ME doesn't involve the immune system(s) in some way. I accept that there will be a variety of ways for immune system activities to result in what we know as ME. EBV might be an exceptionally good trigger for the immune system reaction resulting in ME, but it sounds like there are plenty of PWME who had other triggers.

 

[stellaluna]

I’ve dealt with very mild on and off symptoms (at the time I thought was just laziness or depression) since childhood. I have had atopy since infancy and I think it has something to do with it.

I started having disordered eating at age 3 or 4. It progressed into a full blown ED by age 10.

Throughout my childhood I was forced to be around cats often. At friends’ houses as a child and in my foster home as a teen. I am anaphylactic to cats. I didn’t know this. I was never given medication for it. I just had self-limiting anaphylactic reactions on the regular.

When I was 11, I had a bad HSV-1 outbreak. All over my mouth, my eyelids, my eyeballs. It went on for weeks as they gave me antibiotics when I obviously needed antiviral medication. After that, I started having “depression”.

In my early teens I would always tell doctors “I don’t feel depressed, or sad, or numb. I just can’t get out of bed sometimes”. They would say I’m depressed and gave me all sorts of medications. Those medications seemed to make it worse and cause autonomic and heart issues.

My ED became quite severe from age 16-20. I abused laxatives as well. I don’t know if this contributed to my POTS, but even after stopping laxatives and eating more, the POTS persisted, so I suspect it did more damage than short term malnutrition and fluid imbalances. I was diagnosed with POTS at age 17.

When I was 17, I overdosed on a TCA and ended up in the hospital with arrhythmias and orthostatic intolerance. This significantly worsened the POTS and this didn’t get better for 4 years.

Age 18 the fatigue became severe enough that I could not ignore it. Attributed it to mental health. I got off medication. Mood improved greatly, fatigue did not.

Age 19 having gut issues, eczema, acne. I suspect due to binge eating. Diagnosed with ME/CFS late that year.

Age 20 caught COVID. Recovered with no issues. Started eating animal based. Remission. Going on hour long walks every day and strength training. Hesitant to say full remission as I was not doing much else other than work out, take care of myself, and prepare meals. I would not have had the energy to work or study much on top of this. But all in all very mild. “Crashes” were still functional and short lived.

Age 21 I woke up one day with burning during urinarion and blood in my urine. UTI, E coli. Took nitrofurantoin for it. Got better with no complications. Except a few weeks later my lymph nodes were swollen again. I kept getting sick after that. Flu, URI, yeast infection. By the time a month had passed since the UTI, I was debilitated with fatigue. Often housebound, in a push crash cycle as I tried to attend my chemistry labs every 2 weeks. Got worse from there.

So I have no idea what precipitated my illness. The event at age 21 was the clearest, but obviously I was ill before that, just more mild.

 

[Wishful]

That is a funny thing to say since it isn't possible, therefore hasn't been tried.

I haven't bothered to become and expert on EBV, so I assumed that there are ways to eliminate it. If the available treatments can't completely eliminate it, I would still expect the treatments that reduce it or reduce its effect on cells to show a reduction in symptom severity. PWME who are worse when they have an active infection--of EBV or other virus--don't prove that the virus is the cause of ME, but rather than the immune response might be responsible for the increase in symptoms.

I still think looking for the commonalities in the immune systems relating to severity has potential. Is it t-cell, or NK cells, or a specific cytokine or ratio of specific cytokines? I'd vote to fund that rather than EBV studies or mitochondrial studies.

 

[Wishful]

Research over the years has found EBV-associated immune deficits.

Since you're interested in a link between EBV and ME, here's a question for you: what is unusual about the body's immune response to EBV? Is it causing an unusual ratio of cytokines (I say ratio, since no one has found a single abnormal cytokine level for PWME)? Is it altering a pathway involved in the immune response? Identifying such a thing could lead to understanding why ME gets triggered, and maybe to why it stays in that abnormal state.

 

[cfs since 1998]

Since you're interested in a link between EBV and ME, here's a question for you: what is unusual about the body's immune response to EBV? Is it causing an unusual ratio of cytokines (I say ratio, since no one has found a single abnormal cytokine level for PWME)? Is it altering a pathway involved in the immune response? Identifying such a thing could lead to understanding why ME gets triggered, and maybe to why it stays in that abnormal state.

The immune irregularities in ME/CFS are similar to those seen in EBV-associated autoimmune conditions, such as rheumatod arthritis, lupus, and Sjogren's syndrome.

EBV's modus operandi is literally to manipulate the host's immune system. It is a good candidate to explain the immune dysregulation seen in ME/CFS. As to why other people with EBV don't get ME/CFS, there are several possible explanations. 1. hygiene hypothesis (where age at infection influences the immune response), 2. the Vitamin D hypothesis, 3. MHC Class II gene risk alleles, and 4. distinct strains of or mutations in the virus itself. Or a combination of these.

There is substantial research staring in the 1980s and continuing today which implicates EBV as a likely causative agent. The pyschologizers muzzled it. Don't let them trick you into thinking the EBV link is not legitimate or has been disproven.

 

[junkcrap50]

Mine started after having both EBV + CMV at the same time. Then I recovered/remission or to very mild (chronic burnout only symptom at each semester/year). Then Swine Flu (H1N1) triggered second ME/CFS or made it substantially worse, different, and unrecoverable.

 

[Rufous McKinney]

when I obviously needed antiviral medication.

No doctors ever suggested antiviral medication for my many viral assaults. Maybe they only existed in recent years.

I was given antibiotics for the Virus that attacked me, back in 1983. Which was likely shingles. It killed off two of my front teeth.

 

[wabi-sabi]

Well, I think it started after EBV. It felt like I had mono and I had certainly neve been sick like that before in my life. But I can't be sure since I didn't bother going to the doctor for any testing or treatment.