Epstein Barr, or infectious mononucleosis. Here we go again.
It’s been ages since I last wrote about a possible viral connection to the insurgence of MGUS…At one point, a few years ago, I even had the brilliant (?) idea of asking you all to let me know if you had had a similar experience to mine. What happened to me is that I began having what I now know were possible symptoms of MGUS (mainly, fatigue fatigue fatigue) while I was in grad school, right after I had recovered from a bad case of Epstein-Barr (= EBV, from now on)…This would have been April of 1995 (I’ve written about this before on the blog…just do a search for “Epstein Barr”).
After my appeal on the blog, I received a number of messages and comments, but I just couldn’t detect a trend or anything that might be useful. Not at that time, anyway. So I just put all that data away and, well, eventually, forgot about it. After all, I reasoned, even if I discovered that my MGUS, now SMM, is connected to my bout with Epstein Barr, how would that help me/us now? I mean, it’s a bit too late for prevention, right?
However, in the past few days I’ve renewed my interest in EBV. What happened is that I came across a Mexican case report about an 11-year-old girl diagnosed with myeloma (!) associated with, yes, EBV: http://goo.gl/othmW
I was able to read the full report, so I’ll be able to give you a bit more information. What we know from the abstract is that the above-mentioned girl was 9 years old (!!!!!!) when a plasmacytoma was found at the base of her skull. She tested positive for EBV but had no cancer cells in her bone marrow at that time. She was given steroids/local radiotherapy, and her symptoms disappeared. For a while.
Two years later she went back to the doctors because of generalized bone pain. Unfortunately, bone lesions were found in several areas of her body, including the skull, ribs, humerus and spine (and various other bones, too). By this time she had 95% plasma cells in her bone marrow. Incidentally, the full study mentions that gadolinium was used as a contrast agent in her imaging tests…Uhm.
Anyway, this was her diagnosis: plasma cell myeloma with kappa chain restriction/IgA+ at a Durie/Salmon clinical stage of IIIA.
One good thing: she didn’t have any kidney damage. She began treatment with dex, thalidomide and zoledronic acid….and, in February 2012 (at the time the study was written), she was awaiting a stem cell transplant.
An important bit of information: EBV was found in the nuclei of 70% of the little girl’s myeloma cells (= two different BMB specimens). 70%!
According to the authors, EBV can cause a polyclonal B-cell expansion, which can eventually develop into a monoclonal malignancy. Eh??? What the haystacks does that mean? Okay, step by step:
- B-cells or B lymphocytes, as we know, are the cells that become malignant in myeloma. They get damaged and start proliferating like mad, totally out of control.
- I thought precursor cells were stem cells, but I checked, just in case. No, they aren’t. While precursor cells are similar to stem cells, they’re more specific. The simple difference between stem and precursor cells is that the former can “reproduce” themselves forever and ever, but the latter can’t.
Simply put: the EBV virus appears to be able to infect (and hide inside the nucleus of) these B-cell precursor cells, which activates a whole series of unfortunate events that eventually lead to the development of myeloma.
Now, the authors note that the association between multiple myeloma and EBV seems to be a rare occurrence. Yes, that may well be true…but then, how many people newly diagnosed with MM or MGUS or SMM get routinely tested for EBV? Were you tested for EBV at the time of your diagnosis? Probably not. I certainly wasn’t.
Here’s some more food for thought:
- EBV frequently doesn’t cause any symptoms. That is, most people are EBV carriers but don’t know it.
- Something like 95% of the world adult population has been infected with the EBV virus. Yes, that’s right. 95%.
- However, 95 % of the world’s population does not have myeloma or MGUS or SMM….otherwise it wouldn’t be considered a rare type of cancer, right?
That said, why couldn’t some of us have gotten this icky thing after a bout with EBV…I mean, why couldn’t EBV possibly be at least one of the causes? After all, I read somewhere that it only takes one wacky cell…and bam!, eventually we have myeloma (or MGUS or SMM).
It all begins with just one wacky, abnormal cell.
So here are my final questions of the day:
- what if the EBV test were part of the routine tests we have to have when we are first diagnosed with MGUS, SMM or MM?
- What if an association could be established, at least for some of us?
If (again, for some of us) an association were found, then perhaps our myeloma researchers could devote a bit of their time to studying this issue. See: http://margaret.healthblogs.org/2010/10/28/pieces-of-the-viral-puzzle/
Well, I’m intrigued (again!)…and I want to do some more digging. I’ve found a few, recently published studies on this topic. Furthermore, as I mentioned earlier, when I have a bit of time (SIGH!) I’ll go back and look at the data you have already sent to me. This time, I might be able to put the puzzle together, in spite of the missing pieces…
And that is precisely why I’d very much welcome your thoughts and experiences and help…again!!! Thank you!!!
EBV being associated with MGUS/SMM/MM is not that far fetched. My son was diagnosed with Hodgkin’s Lymphoma in 2008. EBV is highly associated with the hallmark sign of Hodgkin’s which is another B cell proliferative disease. So if EBV is highly associated with one B cell proliferative disease why not another? Personally I have never been tested for EBV that I know of but would be very curious to know if I am positive. Another idea is the varicella virus. I noticed many of us have had chicken pox and shingles. Maybe it isn’t the specific virus, but a predisposition for MGUS/SMM/MM and all that is needed to turn that switch on is a viral attack of some sort. I have Lupus and that is a theory for the cause of it. I had a predisposition for it and the severe viral attack I had (worst case of chicken pox my doctor had ever seen when I was 13) turned the switch on. I am now 47 and I began to have symptoms of Lupus when I was 15. Diagnosed with MGUS when I was 47, but how long was the MGUS present before that since I had never been tested before that for a monoclonal protein.
I was tested by a rheumatologist who diagnosed the multiple myeloma and I tested positive for EBV. No connection was made to it but the EBV test was part of an intensive series of test trying to diagnose my condition. My issues were serious skin problems which later were said to be Sweet Syndrome and still not sure if related to the myeloma or not.
I want to ask you about some good curcumin brands. Is it possible via e-mail (you have my address through this wonderful blog)?
I had a bad case of mononucleosis when I was about 18 years old.
When I was 60 years old I had MGUS and now at 63 have Multiple Myeloma.
I’m new to all this. I’m 51. MGUS uncovered three months ago as part of investigations into raging urticaria and associated allergy testing. I’m sure you know how it goes. Between us we found some of the causes. On their own they found paraproteins.
Amongst my late night investigations, I’ve been searching to try and understand what made this happen (the familiar why me?).Before finding this lovely community I came across the virus/polyclonal connection.
When I donated my eggs at the age of 36, the hospital were delighted to announce that I had had a particular virus in my past which made me a perfect match for two recipients. I contacted the hospital recently for the name of the virus.
Cytomegalovirus. It appears to be in the same family as EBV. Sal
I also have a history of chicken pox/shingles/Herpes I infection. Plus, my mother had what she called “infectious mononucleosis” when I was a child. I remember her being in bed for days. I had a blood test for EBV recently and it was very high indicating “past infection” they said. So what does all this MEAN? Is there a way we could and should be tackling EBV to bring our MM numbers down? I take Acyclovir sometimes to keep outbreaks on my skin down, but I always feel that virus rambling around somewhere in my body (it likes the nerve pathways) and breaking out in various areas internally (nobody believes me much on this, but I swear it’s true). Interesting that there may be a connection here. This virus has been the bane of my existence for many years actually. I’m now taking some colloidal silver and a monolaurin/olive leaf capsule at the direction of my ND. I hope that will help.
I am glad to have found your blog.
I have wrestled with EBV for several years, and now am diagnosed with MGUS.
I have just begun to do research on this.
I welcome any and all comments and supportive information.
In the. last year I had 2 blood tests following 2 bouts of swollen sore glands in my neck. The first time took me about 2 months to recover. 1st tests showed positive for EB antigens, but not date specific, and a ‘small’ but definite monoclonal spike, but I hadn’t to my knowledge had EB virus before the horribly painful glands and illness lasting 2/3 months, so I presume EB was my illness then. I now have sore glands again (not as bad as last time). My monoclonal spike has increased to 6g/ l now. I’m feeling very tired but starting to understand my ‘spike’ is a cause for concern. Seems to me personally there’s a link between EB virus and monoclonal gammopathy. I’m booked to see a blood specialist in about 6 weeks, worried and feeling not well.
I suffered with a terrible bout of Epstein Barr virus in 2000 and was diagnosed with MGUS in 2004 which turned to SMM in 2016. I truly believe that is what caused my MGUS which then turned into SMM. I believe that more research should be done on this.
Now August, 2017. My m spike now at 8g/ litre, so still progressing – gone up about 2g/ l in 6 months. Though still not high (well under the 30g/l threshold for SMM) I don’t like the way its progressing (my oncologist/blood specialist told me progression is typically exponential).
I’ve been eating curcumin with everythingfor about a year, but nnow understand it has to be a very absorbable form. After more research, I’ve just started taking Longvida curcumin capsules and Theracurmin, both if which are supposed to be highly absorbable. Been getting pains in my chest, ribs, back, ankle & wrist joints, about to have a scan to check on a micronodule in my lung, then seeing my specialist again. (Most could be age-related arthritis I suppose/hope!)
Update 30 Jan, 2018
Bought Curcumin and piperine in bulk and have been taking 8g curcumin with about 1% piperine mixed with oil – the mixture added to morning porridge oats. Stayed mostly well this winter without any swollen glands.
When I have been ill, Predisone is what has worked as a medicine. (I have a virus infection now and my doc has prescribed prednisone again.
I understand prednisone is strongly anti inflammatory and can also kill cancer cells – one of many drugs actually used in treating some kinds of progressed MGUS, so it probably has a doubly beneficial effect for someone with my disease profile.
Next blood tests beginning April; so I will get to know if the curcumin us having any effect…Extrapolating from previous blood tests, I would expect my monoclonal peak to be about 11 or 12g/ litre. Anything less would mean the curcumin (or possibly the 2 courses if Predisone) has had some effect, which is what I’m hoping for!
I had chicken pox as a child and mononucleosis at 35 years old. I began having rashes at age 51 which were considered idiopathic and about a year later began having very minor numbness in my left big toe, which would come and go. The numbness spread very insidiously to all toes and both feet. At age 54, in trying to figure out the neuropathy I found out I have SMM. Now I have neuropathy in both hands as well. Unfortunately I have the chromosomal profile associated with a poor prognosis, so if labs show progression next month I might need to begin treatment, even though I’m not showing any CRAB symptoms yet.