Chronic Epstein Barr Virus...advice?

[brittgb]

Hello all. I'm age 26, and I had mono for the first time when I was 15. It was an unusually severe case that lasted 1.5 years, and ever since then I've had relapses yearly, lasting up to 9 months, and never with more than 6 months tops in between full relapses (but usually relapses come sooner than that). And yes, this is based on actual EBV panels with multiple doctors spanning the entire 11 years, not just self reporting. I've had a hard time finding others with this severe of an EBV problem and I thought this might be a good forum to check. I've done some research within this forum but thought I'd send a shout out to see if anyone else out there is in my situation and is willing to speak directly.

I was diagnosed with CFS when I was 19. My doctor advised that I never mention it again and just forget that I was given the diagnosis...because if doctors knew I'd "be stigmatized and never taken seriously again". I have a pretty long history of doctors and family members being really unhelpful, which was a scary and traumatizing thing to go through as a teen. My father even threatened me with being put in psychiatric care if I didn't stop "making up illnesses" when this all first started. But I'm not here to share a sob story, so anyways... long story short I've never attempted to learn anything about CFS and have tried to ignore it and hide it and lie about it until recently, when things have gotten so out of control that I'm wondering if maybe I need to find a CFS doctor.

Is it possible to have CEBV and CFS at the same time? or does having CEBV mean that I don't have CFS? My naturopath has been tracking my EBV antibody panels for a couple years now, he was the one who diagnosed me with CEBV. For example, one of my recent panel results: NA IgG is in the 400's U/mL (healthy is <18), VCA IgG is 124 U/mL (healthy is <18), VCA IgM is 62.4 U/mL (healthy is <36), and EA IgG is 29.4 U/mL (healthy is <9).

Also, it is almost always triggered by getting a cold, which happens quite frequently. I've had 3 so far this fall. I'm also allergic to like 15 foods and highly allergic to all grasses, trees, molds, etc. I didn't have any allergies until about 5 years ago. It started with just a couple things and now every time I get tested the list grows longer and more severe.

Any advice at all would be appreciated I'm feeling a little confused right now and don't even know where to start! Thank you so much!

 

[PDXhausted]

So sorry for all that you've gone through. Have you ever been tested for XMEN disease? Its a genetic thing that leads to susceptibility towards EBV; rare but would be worth ruling out. Have you ever tried Valtrex?

 

[brittgb]

I've never even heard of xmen disease so I'll have to check it out, thank you so much!

I haven't tried Valtrex because the only doc willing to treat me has been a naturopath, all the allopathic doctors I've seen have said there isn't any treatment and I just need to deal with it and keep stress levels low. The ND currently has me on monolaurin, Astra Isatis, lomatium dissectum, astragalus, ligusticum porteri, licorice root, vitamin D

 

[brittgb]

Just did some quick research and xmen seems unlikely, as it is x-linked and I'm a female. I could see my mom being a carrier or even having the disease given her health history and the history of all her relatives, but Id be absolutely shocked if my father had the disease. Plus if they both had it that would mean both my brothers have it too, which doesn't seem right. Really interesting stuff though, worth some research just to be aware of it.

 

[minkeygirl]

I recently had a reactivation of my EBV from stressful dentist appointments. Horrible swollen neck and throat, sore throat etc.

I had been taking 750 mgs of Famvir. I upped to 1000 mgs and it really helped me a lot. And my Naturopath is prescribing it for me so it depends on what state you are in and if NP's can rx.

I don't think having CFS and EBV are mutually exclusive. Viruses are part of CFS and may not mean you have some other rare genetic disorder that may have something to do with magnesium I had mono in high school in the 60's and it's still hanging around to haunt me along with a boatload of other viruses.

"Xmen is genetic mutation that MAY account for X-linked magnesium deficiency with Epstein-Barr virus (EBV) infection and neoplasia, or XMEN, a rare primary immune deficiency disease (PIDD) characterized by very low numbers of circulating CD4 T cells and uncontrolled, persistent EBV infections related to magnesium."

http://www.niaid.nih.gov/topics/immuneDeficiency/research/Pages/xmen.aspx

 

[PDXhausted]

Just did some quick research and xmen seems unlikely, as it is x-linked and I'm a female. I could see my mom being a carrier or even having the disease given her health history and the history of all her relatives, but Id be absolutely shocked if my father had the disease. Plus if they both had it that would mean both my brothers have it too, which doesn't seem right. Really interesting stuff though, worth some research just to be aware of it.

Ah good point, I forgot about the x-linked part. If you haven't already, you may try and do an immune panel to look for immune deficiencies... CD counts, Ig's, etc. A CFS doctor could help with that. Or an immunologist that isn't a jerk.

As for whether you have CFS specifically, it probably depends on your symptoms. I imagine you could have CEBV with or without CFS. A CFS doctor may be able to help you with CEBV though, at least more so than a regular doctor. Given your severity, history, and labs, it seems like it would be worth trying Valtrex at the very least or perhaps Famvir.

 

[Hip]

Is it possible to have CEBV and CFS at the same time? or does having CEBV mean that I don't have CFS?

That's a very good question. Certainly if you look at the symptoms of chronic Epstein-Barr syndrome, they can be very similar to those of chronic fatigue syndrome (ME/CFS).

And ME/CFS does seem to follow after EBV infection in some cases (this was discovered in the Dubbo studies of ME/CFS in Australia). In other words, contracting an EBV infection can be a trigger for the development of ME/CFS.

Furthermore, many ME/CFS patients, even if their condition was not initially triggered by EBV but by some other virus, may shown some EBV virus reactivation when their EBV titers are measured in a blood test. (Though ME/CFS patients also often have HHV-6 reactivation, and/or cytomegalovirus reactivation).


I am not sure how you would differentiate ME/CFS with EBV reactivation from chronic EBV syndrome. Perhaps it is the degree to which EBV reactivates (ie, titer levels) that determines which you have. There does seem to be much overlap between the two, and it's not clear to me where one ends and the other begins.

A set of introductory articles on this forum about EBV in ME/CFS can be found here.


My suggestion would be to take a pragmatic approach, and consider that you might have ME/CFS, just from the point of view that you can then try out a few standard ME/CFS treatments, and see if these help your symptoms. Three treatments that many ME/CFS patients find pretty beneficial are:

• High dose vitamin B12 (usually the methylcobalamin form) taken sublingually.
• Simplified methylation protocol.
• Low-dose naltrexone (LDN).

Search this forum for more info on these treatments. As I say, you may just want to take a pragmatic approach: since the above treatments often help in ME/CFS, they might help your condition.

Trying out one or two antivirals that target the Epstein-Barr virus might be a good idea too. Famvir is a good antiviral to start with (this is similar to Valtrex and acyclovir, but is better tolerated and with less side effects). However, this study found that:

"While anecdotal reports suggested that antiviral therapy (e.g. acyclovir, ganciclovir, vidarabine) might be effective in some cases of CAEBV (16, 17, 18), antiviral therapy is generally ineffective for this disease."

You might also try Th2 to Th1 immunomodulators like inosine 2000 mg daily. Inosine is a supplement that you can buy online. Such immunomodulators work by boosting the antiviral immune response, and so help you body to better fight off viruses.


Finally, a few years ago I had someone posting on my website who suffered from terrible ME/CFS-like symptoms and had chronic EBV infection, which she thought was the cause of her symptoms. She tried a number of treatments, but to no avail; however when she tried an alkalizing diet designed by Sherry Brescia, she had dramatic improvements in symptoms. So it may be an idea to try an alkalizing diet to treat your EBV.

It's interesting that EBV enters and infects certain cells in the body by a process know as pH-dependent fusion. In pH-dependent fusion, the more acidic the pH, the easier it is for the virus to attach to and enter the cell. Thus one might speculate that by making body tissues slightly less acidic via an alkalizing diet, you may inhibit EBV infection.

 

[JalapenoLuv]

Britt,
Aside from the EBV do you have any other chronic symptoms such as:

• joint or bone pain
• muscle twitches
• cold skin
• inability to get a fever
• inability to get a head cold
• anxiety
• depression
• irritability
• difficulty starting urination
• tinnitus
• gagging
• dropping held objects
• Poor coordination
• Light sensitivity
• Headache
• Skin sores that heal slowly or won't heal
• Many new moles

Also if you have any other chronic symptoms please list.

 

[JAM]

Olive leaf extract has worked well for me.

 

[*GG*]

Is it possible to have CEBV and CFS at the same time? or does having CEBV mean that I don't have CFS? My naturopath has been tracking my EBV antibody panels for a couple years now, he was the one who diagnosed me with CEBV. For example, one of my recent panel results: NA IgG is in the 400's U/mL (healthy is <18), VCA IgG is 124 U/mL (healthy is <18), VCA IgM is 62.4 U/mL (healthy is <36), and EA IgG is 29.4 U/mL (healthy is <9).

Any advice at all would be appreciated I'm feeling a little confused right now and don't even know where to start! Thank you so much!

I believe CFS was called CEBV before the crap name CFS was invented.

GG

 

[Abdulrahman]

Hello all. I'm age 26, and I had mono for the first time when I was 15. It was an unusually severe case that lasted 1.5 years, and ever since then I've had relapses yearly, lasting up to 9 months, and never with more than 6 months tops in between full relapses (but usually relapses come sooner than that). And yes, this is based on actual EBV panels with multiple doctors spanning the entire 11 years, not just self reporting. I've had a hard time finding others with this severe of an EBV problem and I thought this might be a good forum to check. I've done some research within this forum but thought I'd send a shout out to see if anyone else out there is in my situation and is willing to speak directly.

I was diagnosed with CFS when I was 19. My doctor advised that I never mention it again and just forget that I was given the diagnosis...because if doctors knew I'd "be stigmatized and never taken seriously again". I have a pretty long history of doctors and family members being really unhelpful, which was a scary and traumatizing thing to go through as a teen. My father even threatened me with being put in psychiatric care if I didn't stop "making up illnesses" when this all first started. But I'm not here to share a sob story, so anyways... long story short I've never attempted to learn anything about CFS and have tried to ignore it and hide it and lie about it until recently, when things have gotten so out of control that I'm wondering if maybe I need to find a CFS doctor.

Hello Britt,

That was an example of a well written post explaining a patients full problems and medical history. Good job in putting it all together. Here is how I succeeded in getting rid of CEBV for 4 months so far, its a full treatment solution that worked for me and others, its at the following link :

http://forums.phoenixrising.me/inde...ent-cure-for-chronic-epsten-barr-virus.32259/

Please read all the posts on this thread carefully as some are new concepts and justification for this CEBV treatment method is complicated and needs to be absorbed slowly. In the end, its your judgement of what works best that will lead to to a succesfull cure of this disease. Notice that my own belief contradicts conventional medicine belief that majority of us have an Epstein Bar Viral infection that is the same as everybody else has experienced.......this is not correct, our viris is a very powerful mutation of the milder standard EBV, and thats why it becomes chronic; the immune system has an extremely difficult time trying to eradicate this dangerous virus.

Abdul

 

[jess100]

Hi Brittgb,

I'm wondering how things are going for you since you posted a few months back about chronic EBV. I was diagnosed with mono a few yrs ago-and have been exhausted since (and actually before the diagnosis too) but my tests don't show what yours do. Yours (in my humble opinion) clearly show a problem.
There is a video on this website about Lyme and related infections that's worth watching for its information about multiple infections working together, which tests should be done, and for its information about natural supplements that can help. A search of Richard Horowitz should bring you to it. I don't know how he would really be as a doctor-I've never had a visit with him. Also I don't know where you live but several member of PR have had good experiences at Open Medicine Institute in California. I've made an appointment to go out there. Certainly do a search about them both on this website and off.
I hope you've had some success with this.
Jess

 

[ebethc]

Finally, a few years ago I had someone posting on my website who suffered from terrible ME/CFS-like symptoms and had chronic EBV infection, which she thought was the cause of her symptoms. She tried a number of treatments, but to no avail; however when she tried an alkalizing diet designed by Sherry Brescia, she had dramatic improvements in symptoms. So it may be an idea to try an alkalizing diet to treat your EBV.

It's interesting that EBV enters and infects certain cells in the body by a process know as pH-dependent fusion. In pH-dependent fusion, the more acidic the pH, the easier it is for the virus to attach to and enter the cell. Thus one might speculate that by making body tissues slightly less acidic via an alkalizing diet, you may inhibit EBV infection.

A gluten-free, vegan diet is - by nature - alkalizing, correct? Is there any such thing as "alkalizing meat"?

 

[Hip]

A gluten-free, vegan diet is - by nature - alkalizing, correct? Is there any such thing as "alkalizing meat"?

I would guess it may depend on the types of food consumed in the vegan diet. As I understand it, it's not just meat which is acidifying.

 

[JaimeS]

That's very interesting, @ebethc , @Hip ... my mom has EBV and was diagnosed with CFS in the early 90s. Her diet went to vegan, VERY low fat by necessity. Honestly, she is about as healthy as she has ever been at this point, following that diet rigorously. If she doesn't, she pays right away.

Chicken or egg, though - it could be far more related to MCS/new IgG-related intolerances than pH.

-J

 

[Eeyore]

There remains a curious obsession with EBV testing in ME, but very few if any abnormalities have been found compared to healthy subjects. I do not think there is good evidence for EBV being the cause of ME, although it probably can trigger it in some people.

EBV is always chronic. It is one of the 8 herpesvirus infections (HHV-4 to be precise) and all herpesvirus infections are chronic (for life). No one ever clears them. That is why you can only get chicken pox once (HHV-3) - although it can later re-emerge as shingles. Everyone who got chicken pox has ongoing, low grade infection with the virus that keeps immunity up and prevents reactivation.

The more interesting question is whether you are getting an unusual number of reactivations. EBV often goes dormant for a time or is active at only a low rate as the immune system continues to suppress it.

BTW, the numbers you list as being "healthy" range are not actually "healthy" range - they are reference range for individuals who have never contracted EBV. As such you cannot expect your numbers to ever drop to normal for the rest of your life. This isn't the end of the world as the overwhelming majority of the human population has EBV in their bodies (probably 95-100%). So these tests, while being flagged as abnormal (in the sense that unexposed is the natural, "normal" state for human beings) are actually "normal" in the sense of being what you would see in most people.

The only real exception is the IgM number, which is tricky to interpret, but in general is associated with either new infection (not years later, maybe days, weeks, or possibly months - but probably not many months - more likely less than a month). Sometimes it can also be elevated on reactivation, so that might suggest you are getting reactivations.

If you are getting reactivations more than normal, it suggests there is an underlying immunological defect. This is something your doc can investigate, but if he/she doesn't want to, you might consider seeing an immunologist. A normal human immune system can effectively control EBV so that you don't get any symptoms (except for, in some people, when you are initially infected and develop mono - although most people who are infected and get lifelong infection do not get clinical mono).

There was a suspicion early on that recurrent EBV activations were the cause of ME, but studies have failed to show any association. The only association really is that it can be the initial infection that triggers ME in a susceptible person - but many other infections can do so as well.

 

[Hip]

There is the theory that some subtypes of ME/CFS may be due to partial reactivation of Epstein-Barr virus. Refs: 1 2

Partial reactivation involves the creation of EBV viral proteins, but not full viral particles.

 

[Eeyore]

Maybe so - but if that is the case, then it must be due to some sort of immune predisposition. Normal people have immune systems that do not allow this to happen.

Also, if we can see it on ELISA testing, then it should be testable in a study and some abnormalities should be replicable for the ME population - so far I haven't seen much along those lines that is very convincing.

Maybe PCR testing (if available) could demonstrate active infection.

 

[Hip]

Maybe so - but if that is the case, then it must be due to some sort of immune predisposition. Normal people have immune systems that do not allow this to happen.

Could well be.

 

[Hip]

It would be interesting to examine the genetic makeup of the Epstein-Barr viruses found in ME/CFS patients. One recent study on EBV in multiple sclerosis found that MS was strongly associated with certain genetic variants of the EBV virus. This finding reinforces the idea that EBV plays a causal role in MS development.

Could certain genetic variants of the EBV virus also lead to ME/CFS?