• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Unicorn EBV

Galixie

Senior Member
Messages
211
I just requested chart notes from 2016, which was the year I got a sort-of-formal diagnosis of ME/CFS based on my perpetually high EBV antibodies. I found this paragraph interesting, because I'm apparently a unicorn:

"When I first got the EBV acute infection antibody profile back I was puzzled by it, and have discussed it with both Dr. Wong and Dr. Bolton, our Infectious Disease doctors here at Swedish/Edmonds. Her EBV viral capsid IgG is positive. Her EBV viral capsid IgM is positive. Her EBV nuclear antibody is positive and her EBV early antibody is positive. These do not make a lot of sense. In an acute infection the EBV nuclear antibody would usually be negative. In a history of exposure, the EBV viral capsid IgM and probably the early antibody would turn negative. These are the same findings that her naturopath was getting a number of years ago. Dr. Wong and Dr. Bolton noted that it was interesting and confusing, but did not believe that it led to any kind of diagnosis or therapy that might help her. One might argue whether this is in the unicorn of EBV infections, but chronic Epstein-Barr virus infection, but if that were the case one would expect her quantitative analysis by PCR to be positive for EBV, and it was negative."

If I am a unicorn, why aren't I being studied? I had assumed that my findings were slightly odd, but not that unusual. Don't other ME/CFS patients have all their EBV antibodies come up consistently positive? Mine continue to be high (last checked Oct 2022).

I don't think I'm the only unicorn. I'm looking for my herd. :)
 

Garz

Senior Member
Messages
346
as demonstrated by your case notes - few people - even infectious disease doctors - seem to have read the ample research that demonstrates that antibodies for Epstein bar virus and the organism that causes lyme disease ( borrelia burgdorferi and a few others ) are known to cross react. (Note - this is not the opinion of a few eccentrics - this is in the published mainstream scientific literature).

this means that a person with high titres of EBV antibodies could have EBV or Lyme disease - but that its not really possible to reliably define which from tests based on antibodies.

so - in general - in a person with positive EBV antibodies but prolonged unexplained illness, especially those displaying, fatigue, headaches, malaise, unexplained pain, neuropathies or other unexplained symptoms - then Lyme disease should be a suspected diagnosis.

there are a few other pointers to look out for

unusual patterns of EBV antibodies - such that are not expected to occur in EBV patients generally such as high titres across the board or both early and late titres - are a red flag that its likely something else( as is the case with your tests )

persons with high titres of EBV antibodies - should be tested with a PCR test for EBV - as if they are indeed infected with EBV and it is replicating enough for their bodes to generate high titres of antibodies - then they should easily turn the the PCR test positive - resulting in a definitive diagnosis.

however in your case - the PCR was negative - again a red flag pointing to an alternative cause via cross reactivity.

serology is cheap but overused and overrated technology in our medical institutions. it works more or less OK for simple acute infections - but it is known to be particularly poor at detecting and distinguishing chronic infections. The over reliance on this antiquated technique is costing people decades of unnecessary suffering.

in your case you have all the red flags for this to be a false positive EBV serology - due to cross reactivity.

if i were in your shoes i would look for a Lyme literate doctor - with a view to proper diagnosis and treatment . The good news is diagnosis is half teh battle, treatment is possible and you can get your life back.

in the mean time for support and information - there is a lyme disease support group here - they are a friendly and helpful bunch - i am there also -

i have a strong suspicion that we are your herd - come and say "hi":)

https://www.healingwell.com/community/default.aspx?f=30
 

Galixie

Senior Member
Messages
211
serology is cheap but overused and overrated technology in our medical institutions. it works more or less OK for simple acute infections - but it is known to be particularly poor at detecting and distinguishing chronic infections. The over reliance on this antiquated technique is costing people decades of unnecessary suffering.

in your case you have all the red flags for this to be a false positive EBV serology - due to cross reactivity.
Wow, thank you. I would not have guessed lyme as I have never been outdoorsy at all. If serology is a bit unreliable, how would lyme be detected?
 

hapl808

Senior Member
Messages
2,018
Dr. Wong and Dr. Bolton noted that it was interesting and confusing, but did not believe that it led to any kind of diagnosis or therapy that might help her.

This is all of us. So many 'interesting and confusing' results or responses, but they are wholly incurious and uninterested in following up. So they continue to call us all unicorns, then say unicorns don't exist.
 
Messages
5
Hey, just wanted to say that i also have the exact same results and my docs believe its chronic EBV which unfortunately has very limited treatment options ( have tried most to no avail ). Also don't think its lyme because i live in an area where it isn't prevalent at all, could be some other underlying infection of course.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
I wouldn't be suprised with the immune dysfunction in cfsme patients, if there's viral and bacterial infections like lyme and coinfections going on.
 

Garz

Senior Member
Messages
346
Wow, thank you. I would not have guessed lyme as I have never been outdoorsy at all. If serology is a bit unreliable, how would lyme be detected?
Hey, just wanted to say that i also have the exact same results and my docs believe its chronic EBV which unfortunately has very limited treatment options ( have tried most to no avail ). Also don't think its lyme because i live in an area where it isn't prevalent at all, could be some other underlying infection of course.

what to believe
be aware that there is a huge amount of misinformation, and just outdated information in circulation on the topic of Lyme disease.

its a relatively newly discovered emerging disease - and institutions have been misrepresenting it and downplaying it for years. as an example - the foremost medical institution in the USA - the CDC - until recently stated that there were around 30,000 cases of Lyme disease in the USA annually. Then in the last few years they increased that estimate to 300,000 - a tenfold increase in one step! - and more recently to 476,000 cases per year - in each case they had lagged well behind the research, being forced to revise their position by the weight of evidence rather than leading the way.

This denial and misrepresentation is very common with unconventional findings, or diseases that challenge the prevailing paradigm in the medical world. Right from the days of Louis Pasteur - who was incarcerated in a mental asylum for talking about tiny creatures smaller than the eye could see(bacteria) that made people ill. He died there from sepsis.
Another example is stomach ulcers - the prevailing paradigm was that these could not be caused by bacteria as "nothing can live in the stomach acid environment" - and instead they were simply a sign of stress. such was the strength of the dogma - scientists who presented their findings that indeed not only can some bacteria survive in the stomach - but one of them was the cause of stomach ulcers - were laughed off the stage of medical conventions for 20 years - before one researcher proved his peers wrong by ingesting h. pylori bacteria - giving himself stomach ulcers - then curing himself with antibiotics.
so please do not go away with the idea that this is some kind of improbable conspiracy specific to Lyme disease or is somehow a far fetched idea.

Now, if you go to the original scientific research sources you will find huge differences between what you are likely to be told by your GP or Primary Care Physician or even Infectious Disease Doctor - and what is known to be true in the research community (there is typically a 20-40 year gap).
In the UK GP's get 3 short paragraphs of training on Lyme disease - and all of that is outdated.

as an example - my partner and i both developed Lyme disease like symptoms after a picnic on farmland - our PCP told us that we couldn't have Lyme disease as "we don't get that around here".

years later - still ill and looking for answers i checked that - I found that not only were over 50% of official confirmed cases in the uk located in the south west and south east of England ( I lived in the south west ) but that two of the universities had done a tick survey in the park located in the centre of our nearest town and found 9% of all ticks collected were infected with Lyme disease. Why did the doctors so confidently state what anyone with the internet could easily find was utterly untrue? ignorance,? complacency?

we were also told we couldn't have Lyme disease because if we did our inflammatory markers ESR and CRP would be sky high - again completely untrue - its well documented that many chronic Lyme patients have entirely normal bloodwork. And that we would be much more ill than we were - suffering a "rapidly descending staircase of symptoms" soon landing us in hospital - again untrue - as studies have shown a significant proportion of patients manage to hold down some kind of employment - so, it turns out everything we had been told about the disease by our doctors was utterly untrue - and based on pure ignorance.
I just give these as examples of how much rubbish is accepted as common knowledge even and perhaps especially amongst health workers.

The performance of conventional medicine with this disease is staggeringly poor - mainly because of ignorance and dogma - the average time to diagnosis of Lyme disease is something like 5 years - with 4 to 5 mis-diagnosis on average given first.
The main misdiagnosis given are - CFS, fibromyalgia or mental illness.

Regarding exposure
while outdoor lifestyles can place you at higher risk - you cannot rule it out by lifestyle.
you can get Lyme disease in your yard or your garden, your local park, the beach.

the ticks that spread it live on rodents- like voles or mice or shrews, small mammal- like foxes, hedgehogs, garden birds like blackbirds, thrushes, robins etc, or the equivalent species in other countries - and not just large mammals like deer in the highlands.
in addition - Borrelia Garinii - one of the main species of spirochete known to cause lyme disease in the UK and Europe is now known to infect sea birds, like herring gulls, which now inhabit the refuse sites around most of our towns and cities - and these are able to carry the ticks that spread Lyme disease long distances.

so in short if there are birds or mammals in your environment - you cannot rule out exposure.

other less common routes of exposure are
via ticks that fall off your pets that have been outside, when they come back into the house - they can locate humans as their next blood meal.

blood transfusions or organs or blood products are also not routinely screened for the organism that causes Lyme disease - so if you have had a major operation requiring transfusion or transplant it may also be possible to contract the disease that way.

finally - there are some small studies looking at couples where one or other partner has Lyme disease - these studies sequenced the exact strain present in both partners even if only one had symptoms. It found that almost without exception the exact same strain was present in both partners. This would not be expected to happen if both partners has been exposed to the organism from ticks in the wild - as exposures would be expected to be on separate occasions to separate ticks with separate strains of Lyme disease causing organisms ( there are many species of spirochete that cause Lyme disease - currently around 20 in total - and within each species there are many strains that can be differentiates by sequencing) so the strain is like a genetic fingerprint and odds are very small indeed that these infections were acquired separately. instead it provides strong evidence for person to person transmission. Other simpler spirochetes species, such as syphilis are known to be spread via sexual contact - and live spirochetes have been identified in the sexual secretions of humans with Lyme disease - so sexual transmission seems to be a strong possibility.

the other factor to consider when thinking about exposure vs symptoms is that the disease has an extremely variable incubation period between infection and illness. in around half of cases this seems to be quite straightforward and symptoms onset is 1-4 weeks after a tick bite. in the other roughly half of cases symptoms are much more gradual in onset, often after some triggering or immune suppressive event - like viral illness, emotional trauma, physical trauma, medical procedure, prolonged stress etc - basically anything that suppresses or dysregulates the immune system can allow the illness to take hold. in these cases the patient typically has no knowledge of tick bite or rash ( the characteristic bulls eye rash appears in less than around 1/3rd of all cases).


Testing
testing is a complex topic - the short version is that because almost all widely available tests are serologic test - and because the organism that causes Lyme disease interferes with the hosts ability to make the expected antibodies - most testing has problems with sensitivity (high false negative rates).

newer techniques like PCR run into issues with sensitivity also - but for different reasons - mainly because the organism is not present in blood in sufficient numbers - as it mainly lives in the tissues - but blood is the easiest material to sample. as a result well done studies show PCR tests are typically negative around 50% of the time even in patients confirmed to be infected via gold standard methods. eg tissue culture.
PCR is better if done on tissue - but this is invasive and rarely performed.

there are newer advanced teqniques in the works - but most of these are still in the less than fully proven category

the current most widespread approach is to use a combination of 2 serologic tests - an ELISA and a western blot or immunoblot and tries to ascertain positive or negative from the pattern of positives / negatives via a convoluted criteria - but this approach is fraught with issues and there are multiple ( actually over 20 studies now ) showing the accuracy or sensitivity - is anywhere from 20% to 80% depending on which paper you read. it means the test could miss as many as 80|% of true infections.

Lyme literate Doctors often use either multiple tests via a combination of different test methods to try to build a picture - or do away with testing and perform a clinical diagnosis - which they can be quite proficient at after treating 1000's of patients.

in general, rather than a simple black and white tests result ( which we would all like - but does not yet exist) patients or doctors can reach a diagnosis via careful review of medical history, symptoms, exposure, test results if available, and also response to treatment/therapeutic trials.

the disease is treatable - and a huge body of research now exists and is publicly accessible - its just not known to the vast majority of Primary Care Physicians or Infectious Disease Doctors.

if you have had a diagnosis of CFS and are used to dealing with the medical profession with that label attached - the above should not come as a real surprise to you.

if it does - please don't take my word for it - do your own research from the original published research literature - i think you will find the above stands up.

i hope its of some help

all the best!
 
Last edited:

Galixie

Senior Member
Messages
211
Hey, just wanted to say that i also have the exact same results and my docs believe its chronic EBV which unfortunately has very limited treatment options ( have tried most to no avail ). Also don't think its lyme because i live in an area where it isn't prevalent at all, could be some other underlying infection of course.
They think it's chronic EBV even with a negative PCR?

The hematologist quoted didn't believe in chronic EBV, so was disinclined to think that my results indicated that. My naturopath leans the other way, so I don't really know what to think. I did try acyclovir for a time years ago and it didn't make any difference in my antibody numbers, but that doesn't really rule anything out either. 🤷‍♀️
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
They think it's chronic EBV even with a negative PCR?

The hematologist quoted didn't believe in chronic EBV, so was disinclined to think that my results indicated that. My naturopath leans the other way, so I don't really know what to think. I did try acyclovir for a time years ago and it didn't make any difference in my antibody numbers, but that doesn't really rule anything out either. 🤷‍♀️

You can try the herbal treatments for lyme and see if you improve or herx??
As an example, I use Grape seed extract all the time, it's also a good antioxidant and can improve kidney health. Artemesia, cryptolepis, Japanese knotweed,

I also use Serrapeptase which helps breakdown the biofilm which can protect chronic bacteria from herbal and pharma antibiotics. But I'd maybe consider that later into the treatment.

If you can get a Dr to prescribe you antibiotics to start off, I think would be helpful, something like doxycycline that can help with the spirochete form of borellia and some of the lyme coinfections. Plus when you look into the herbal antibacterials, I'd also add one that hits the borellia at its cystic stage if you take doxycycline. The borellia bacteria can turn into the cystic form when treated with most pharma antibiotics, so its good to cross it off at the path.

The above might not make alot of sense but as you look into lyme disease it will. Hopefully it gives you options without needing a Dr and you can try the herbal treatments.