So the story is: my disease started with EBV, I was tested while ill and it showed I had a fresh infection. (Based on the IgM. Here is an explanation from CDC about what the different values mean when testing for EBV.) That was more than 5 five years ago now and currently I'm slowly getting worse. I told my doctor about this worsening and also that the only consistently "off" value in my lab results is my always more or less elevated level of monocytes (which no one seems to care about). He said those monocytes are not really a big deal but who knows, EBV can raise them and maybe the infection still keeps going somehow. Let's check it (and he sent me to a couple of other viral tests too just to be sure, so now I know a lot more about which ones I've had so far). I've got my lab results today and as expected, the IgG and EBNA values show that I have a past infection but the IgM, the one that is indicative of a fresh infection, came back with the label that could be translated as "ambiguous" or "doubtful", instead of the typical positive/negative result. (It was 29,6 U/ml, whatever that means.) The lab added the comment that the doubtful IgM result is probably the result of an aspecific reaction. I'm going to call my doctor about this tomorrow but I thought I'd share.
For an individual person IgM values in this sort of situation probably mean nothing much. There was a hope that IgM versus IgG would indicate whether infections are still active or not but for EBV at least it is not clear enough to be useful as I understand it.
Thanks for the explanation. That is also what I expected based on what I've read on this forum so far.
Your experience sounds familiar. I've had elevated monocytes, and consistently elevated lymphocytes for several years. Also, active/fresh EBV several times over a number of years. The only conclusion drawn has been a diagnosis of ME. I just listened to Dr. Ron Davis' latest video talk. The OMF is investigating as many pathogens, as they can with current technology to see what they can find out about these triggering factors for ME. Re the basic run-of-the-mill tests done when a patient presents with ME- type symptoms, Dr. Davis reiterated, just because you can't find something doesn't mean there is nothing [biomedical] there. I hope you get a useful explanation about your test results.
I had similar results for my recent EBV test (40 years after mononucleosis in 1982 and the ME started about 4 years after that) but I still get episodes where I feel like I have EBV again, its quite a characteristic feeling, so I dont think the IGM result is indicative in this kind of situation but I have no idea what is going on, only that it makes me feel ill. It seems to be part of a bigger problem where I have unhelpful allergic immune responses along with recurring viruses, which I have seen described as CFS ACAI (atypical chronic active infections) or ME CFIDS (chronic fatigue immune dysfunction syndrome). It does not seem to be as simple as recurring EBV though.
I recovered from the initial virus that triggered M.E, don't know what I had b/c I wasn't tested for any that I'm aware of. The triggering/reactivating of viruses and allergens started becoming an issue around the 13 year mark, and now I have 'something' brewing every few months, spring time is the worst.
So my GP said that this probably means nothing but it was interesting at least to look at it. He also told me to get it checked again a year from now just to see how it changes. He says this may or may not have something to do with my symptoms but there is really no way to tell. He also added that we probably wouldn't win the Nobel Prize for this discovery anyway, since we are probably not the first ones looking at this in connection with ME/CFS.
My WBC was sky high when EBV and HHV6 reactivated in 2001 from taking immune modulators. My symptoms were quite different from all the other viruses or immune responses that I've experienced in the past 31 years. It's difficult to know what is occurring based on our symptoms. My immune system feels exhausted is how I would describe it.
This all sounds so familiar to me after starting my ME with GF back in 1999 and again 2000. Back then the diagnosis was made by Paul Bunnell test which isn’t specifically EBV just a heterofile antibody that clumps horse red cells. (I know this cos I used to work in the NHS haematology lab where the test was done and an old friend from my days there phoned me up to tell me I was “ the oldest git with positive Paul Bunnell” ) As an ex-BMS I have kept an eye on what’s happening in Biomedical Research for ME. I find the stuff done by CureME at the LSHTM v interesting. Recently they found reactivation on HHV6 and 7 matching symptom severity. Bizarrely I attempted an MSc project on a pilot study using RT Q-PCR of beta- herpes viral loads on the Stanley Consortium Neuropatholgy cadaver brain tissue. We found evidence of HHV6 in the brains of some samples. This was back in 2010 and seemed to be a bit cutting edge / controversial then♀️ However Bupesh Prusty was very well up on HHV6 along with Ablashi too. So I do wonder if reactivation of some HHVs maybe part of problem? I believe the technological advances made alongside subgrouping and longitudinal studies to reduce confounding factors are the way to go. However there will need to be a huge paradigm shift in HCPs from the idea of infections either being cleared and hence patient recovers or not cleared and patient dies. Surely all HCPS know that HHVs aren’t cleared and remain latent, don’t they? There are at least 4 types of latency and there is a lot of mixed evidence for epigenetic / post translational modifications/miRNAs/ncRNAs, etc etc. I think the work is being done but as we all know the money isn’t there yet. I think progress is being made much faster now than it was 10 or even 5 years ago. I have everything crossed for real progress soon but I don’t know of any for certain. Does anyone else?
As I had said earlier in this thread, my GP told me to check my EBV antibody levels every year, just in case, for our own amusement, I guess. Last year I got an ambiguous result (my IgM, indicating fresh infection was elevated a bit, despite the fact that the infection happened more than 6 years ago). I'm going to get tested soon again and I understand that my previous result is probably nothing meaningful (meaning it doesn't automatically mean I have an active infection going on). But I was wondering if such antibody levels (IgM) are supposed to fluctuate or stay similarly elevated for the same person. Do we know this? Or again, is this something that has no importance and it doesn't even matter which one it is? @Jonathan Edwards
My understanding is that the CureME team at LSHTM are doing a longitudinal study on viral loads of EBV and HHV6 in saliva.
I've just come across this paper from 2004, thought I'd share. IgM Serum Antibodies to Epstein-Barr Virus are Uniquely Present in a Subset of Patients with the Chronic Fatigue Syndrome, 2004, Lerner et al Abstract. Background: A unique subset of patients with chronic fatigue syndrome (CFS) and IgM serum antibodies to cytomegalovirus (HCMV) non-structural gene products p52 and CM2 (UL 44 and UL 57) has been described. Patients and Methods: Fifty-eight CFS patients and 68 non-CFS matched controls were studied. Serum antibodies to EBV viral capsid antigen (VCA) IgM and EBV Early Antigen, diffuse (EA, D) as well HVCMV(V), IgM and IgG; VP (sucrose, density purified V); p52 and CM2 IgM serum antibodies were assayed. Results: Mean age of CFS patients was 44 years (75% women). Control patients were 9 years older (73% women). Serum EBV VCA IgM positive antibody titers were identified in 33 CFS patients (Group A subset EBV VCA IgM 62.3±8.3, neg.<20), but were not present in other CFS patients, (Group B subset EBV VCA IgM 6.8±0.7) controls (p<0.0001). EBV VCA IgM titers remained positive in CFS patients from Group A for 24- 42 months. Conclusion: Serum antibody to EBV VCA IgM may be a specific diagnostic test for a second subset of CFS patients. https://iv.iiarjournals.org/content/invivo/18/2/101.full.pdf (PDF) Edit: This other study found no difference from healthy controls: https://journals.asm.org/doi/10.1128/CDLI.6.2.216-223.1999
As far as I can see this paper says that the levels of IgM antibody to EBV are higher in CFS patients with high IgM antibodies to EBV than in patients without high antibodies or the average for controls. Which is is pretty guaranteed to be the case! I have seen people report non-results of that sort in conference abstracts. It should get weeded out be peer review but 'In vivo' is a pretty obscure journal, at least to me.
Such smoke and mirrors, we are trying to find proof still to this day of what is wrong with all of us, and we still don’t know.
I wonder if simply looking for results in blood has been done for so long now (over 30 yearsI believe ) plus with new technology surely there must be another way? How about tagging with a specific probe say for part of the genes involved in lyric cycle of maybe HHV6, EBV, or other neurotrophic viruses. The tag could be attached to a contrast medium so that a patient/ volunteer is screened by eg fMRI for semi quantitative measure of bodily viral burden?
If anyone is interested, my blood test result from this week was negative for the anti-VCA IgM and indeed significantly lower than last year, meaning I got a very normal ("had EBV at some point in the past") result. I guess this value is something that probably fluctuates over time, at least for some people.
