Today, after returning from an appointment for which I had to get a bit dressed up, I opened the closet door to put away my dressy clothes and slip back into my more comfy house clothes, and Pinga hopped out. Eeek! The silly little creature had been stuck in my closet for about two hours…Luckily, she seems to have suffered no harm. In fact, right now she is leaning against me, purring, watching me type, and occasionally leaping after the cursor (my poor monitor!)…ah yes, life is back to normal! 😉
In my snippets of free time, I am writing a draft about our trip to Rome and trying to decide which photos I would like to publish. In the meantime, I thought I would ask you all a question, based on something that a blog reader told me recently: she was diagnosed with MGUS shortly after recovering from a bad viral infection. That reminded me that I would like to write another post on this topic, since I myself was diagnosed with MGUS just a few years after recovering from a nasty case of Epstein-Barr (EBV) while I was in grad school in Toronto…
Here is my question: does anyone else have a similar story? I mean, a viral infection preceding a MGUS, SMM or even MM diagnosis?
Here is an excerpt from an IMF document dating to 2005: Recently, researchers have proposed infection, particularly viral infection, as a causal or trigger factor. Several studies have linked multiple myeloma to HIV, hepatitis, herpes virus infections (especially herpes virus 8), Epstein Barr Virus (EBV), as well as new “stealth adapted” viruses such as mutated cytomegalovirus (CMV). The significance of these viruses with regard to multiple myeloma remains to be fully explored.
As I mentioned, I have already discussed this topic, which you can find under “Myeloma Triggers” (see: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/mgus-to-mm-progression-sox2/myeloma-triggers/), but I would like to take another look at it…there might be a more recent study out there…interesting topic, yes…
I’m glad you had a wonderful trip to Rome. The advantages of living in Italia.
Anyway before I was diagnosed with active Mm (kidney failure) I had been fighting recurring cold/flu like symptoms. doctors were not sure if it was bacterial or virus. Loads of antibiotics were prescribed and taken.
Given what I know now and looking back I believe my mm condition could have been diagnosed earlier. Maybe I could have had mgus for years before my kidney failure in feb 2005.
I had bacterail infection ( Gum infection) for several years and recently diagnosed as MUGS. My infection got resolved now and markers are coming down in last test. I have to see if i come back to normal or not.
I strongly believe , infection is the root cause in my case.
I had my very first lot of antibiotics ever for a tooth infection a couple of months before my back starting giving me problems, which was 16 months before being diagnosed. I also got Chicken Pox without being near anybody I knew who’d been in contact with it 10 months before dx. It’s hard to know if I got them because I already had MM or if they played any contributing factor. I’m currently reading Virolution which is about the science of evolution and disease. A friend who is a nutritionist mentioned Candida recently as, if I understood correctly without anything exploding, a potential underlying/contributory health issue.
I admired the photos of your cats being spoiled with their water fountain and then was shocked to find that the downside is being locked in the wardrobe! ;o)
Margaret: I was diagnosed with MGUS 5 1/2 years ago, prior to that I had reoccurring cold/flu like illnesses with golf ball size swollen glands in my neck that my doctor claimed was mononucleosis despite the negative on the mono spot test. I had waited through the third or fourth bout with this flu like illness before seeing him. (I did have a positive test for mono when I was 17 years of age). Very interesting to be diagnosed with MGUS shortly thereafter. I am also allergy prone. I would like to compile a survey with various questions and send to as many MGUS, SMM, MM patients, perhaps some pattern may show itself. Could it be as simple as a Vitamin D deficiency OR a B-12 deficiency OR due to allergies (my hematologist says people with allergies are prone to MGUS). So many questions, so few answers. Helen
Regarding MM occurring after viral infections I can’t give you exact good record and I don’t know what was really going on but, 5 years ago my husband had extreme fatigue, brief bout of thyroiditis,
extremely low pulse rate, edema of one foot (weird), extreme dry eye
(a primary twitch to the face, elevated eye pressure he always had and various intestinal upsets. It was at that time that his blood count started to look suspicious.
One doc wanted to destroy thyroid but it righted itself, another doc wanted to give him a pacemaker (even a second opinion doc) but we went in for extensive heart testing and his heart if fine. He always had a naturally low pulse rate so too low could have been brought on by too much exercise of sweaty variety like road bike riding) and the wrong drug for slightly elevated blood pressure. Doc was ready to destroy his thyroid) facial twitch calmed down (another doc wanted to treat face with botox. We were able to calm down his intestinal tract with careful diet., He got off some medications he had been taking for far too long which were eye drops for elevated eye pressure (probably cause of twitch in eye area (which is now mild), minocycline and others. Solved eye pressure elevation, which he had from his 20’s, with lazer treatment. Primary care physician kept saying go to oncologist.
So the oncologist kept telling him he must be fatigued and have many infections but HE FELT AND FEELS GREAT AND DID NOT HAVE INFECTIONS SO WE WERE NOT INCLINED TO RUSH OFF FOR BONE MARROW TEST since we had so much bone headed (SORRY FOR PUN) advice already. At this point he felt better than he ever had. He has always been one for exercise and eating right. He has had slightly elevated creatinine levels for about 8 years and kidney doc decided he has slight (Grade 1) kidney disease. Last July he was told he had multiple myeloma and now he is told it is MGUS or smoldering. As I mentioned in previous e mail we see an oncologist (actually head of myeloma bone study in our city’s university and a private oncologist in another large city.
I have always suspected there was some connection between his wild medical upheaval and the beginning of problems. I also suspect that
the constant intestinal upsets he has always had may have a connection to his IGG kappa problems.
My husband was diagnosed in Oct. 2008. He has a chromosome 13 deletion (a very aggressive form of this disease) and after 11 months of various chemo drugs he finally reached stem cell transplant. We have been doing many alternatives since the first day we found out he had MM. He has worked as a city road inspector for many years and after a great deal of research we discovered that benzene is a major trigger for MM and other bone marrow cancers. We know there is some sort of genetic predisposition as well as his mother and aunt both died from the same disease. We also discovered that mercury fillings and root canals are a major trigger for MM. He had a root canal (3rd) in March of 2008 and that summer started feeling very tired with various pains in the hip and back. We are following the Bill Henderson protocol and believe that the Budwig, a stricted diet, rebuilding the body with super vit/antioxidants/minerals, beta1-3D Glucan, homeopathic remedies, and extreme detoxing finally got him to stem cell transplant. I don’t believe he would be here now if we had not followed through with the many alternative choices we made.
We are extremely fortunate to have come across your blog and will discuss all of these approaches to both our oncologist and natural doctors. Thank you so very much for all of your time and effort. You are truly and angel.
Interesting theory. I was complaining of “kidney” pain for years. I knew I was more tired than I should be. I had trouble standing up for more than a few minutes at some points. I am a low fat lacto ovo vegetarian (20 years now) that worked out 5 times a week. 3 hours of intense weight training & 5 days of running 3 miles in 30 minutes. Weekends in the summer I was on the tennis courts for 3-4 hours. So they blamed it on my weight training and didn’t follow up.
Here’s the question though. Husband does suffer from cold sores, and sometimes, you don’t know when his virus is active because it hasn’t manifested. I don’t know when my disease started, but I suppose in theory, I could have been infected without outward manifestation. They do say you can carry the virus without any outward signs.
I had a horrendous case of Shingles a couple of years before my SMM diagnosis and was given numerous treatments including antibiotics, Pain killers, Anti-seizure drugs (Yes the drugs used by epileptics seem to help shingles.) My shingles were so severe that they sent me to hospital.The pain and sores lasted for months and from then on I had various odd skin complaints particularly on my face and was given Hydro-cortisone. I’ve since been told that Hydro-cortisone can affect the bone marrow.
I’ve just remembered that a friend of mine had breast cancer a few years ago and that also followed a bout of shingles.
Both Jijoye and HS-Sultan are Epstein-Barr virus–positive
(EBV1). While all African-type Burkitt lymphomas are EBV1
(including the cell lines derived from these tumors), myeloma is
clearly not an EBV-associated disease; neither EBV DNAnor EBV
nuclear antigen (EBNA) have been detected in myeloma cells in
the tumor. Myeloma cells are usually refractory to EBV immortalization.
There is no bona fide EBV1 myeloma cell line.
Demonstration of Epstein-Barr virus in
a case of multiple myeloma after renal
I had 8 years before my myeloma diagnosis a varicella infection (probably I had no varicella infection as a child). No idea whether varicella virus can cause a myeloma?
Lots of interesting stuff here Margaret. I can tick many of the boxes too.
This post is well worth a follow up and you have so many blog readers now that I think a survey would be most revealing. However, we have to remember that there are likely to be many different causes and types of myeloma. Nevertheless, it might be possible to relate certain types (say IgG kappa) to certain possible causes (say EBV or Varicella). It may be that, since some of these viruses never leave us, that the immune system is always full-on to keep them suppressed.
For anyone who is suffering from shingles it might be worth taking a look at Lysine.
Just briefly, I wanted to thank all of you for your stories…very interesting. I intend to prepare a post soon on this topic, so your input is invaluable. Thank you!!!
My husband was diagnosed with MM in December 09, and is currently on thal,dex. and cyclophosphamide.
He had shingles in 2002, followed by 2 bouts of ‘flu, one in January 09 and one in December 07.
He will finish the chemo. shortly but has decided not to have the sct in the hope of keeping under control with curcumin.
The beta glucan 1-3 1-6 saccharomyces cerevisiae looks to be worth trying.
I was diagnosed in November 2005 with MM at the age of 42. In the August of 2005 while on holiday in Spain I had a very bad chest infection that required strong anitbiotics to clear it up. Then when I started my MM treatment I was on a trial of Dex, Cyclophosphamide and Thalidomide. Which worked fine and gave me a complete response. Great then in May 2006 I had my SCT which lasted just over 3 years, during which time did I have any viral infections what so ever. Then last year I relapse then did another trial of Dex, Adriamicine, and Velcade which again worked and now just a day 90 after my second SCT which took a 14 day stay in Hospital. So, I am hopeful of another few years MM free???
I was diagnosed with SMM 2.5 yrs ago, when I had a physical (for no particular reason). However, for the year and a half before diagnosis I had low-level colds that would last for months at a time, that I just couldn’t shake. I also still have an infection in my toe – from an ingrown toenail, this I have had for 5+ years now. I have taken antibiotics, had 4(?) minor surgeries on it… Still have the infection, obviously I can live with it, and I take various precautions to keep it under control, but I can’t manage to completely clear it from my system.
i would need to get out all my various compartmentalized records…because looks like things are not so divided into issues after all. i believe i first got ‘abnormalities’ signalled after a blood exam connected to allergies, and i had a mysterious eye infection that the blood work had confirmed as positive for viral ( i remember thinking i had shingles in the eye)…after which the blood essaies seemed more troubling, basically with high blood clacium since 2006. three years later i finally got tested for parathroid levels which were high and i had a rogue papathyroid removed. i also had (have) very low vit. D levels, which now seems all connected…but no one had connected the dots. if we put together a survey…i will get my facts and dates more exact than just story telling
Dear Margaret, yes, I also believe strongly that you are onto something, and should pursue it. The “something” is the inability of the body’s immune system to deal with too many fires to put out at one time, with the result that one of the fires stops smoldering and bursts into flame. There are other ailments other than MM where I believe this concept is at play, one of which I am now examining (heart disease). This is too big a subject for me to treat adequately in this space, so I will email you and send more extensive info (and speculations).
Article posted in Medical News Today – Article Date: 20 Apr 2010 – 1:00 PDT: “How Infection And Inflammation Can Lead To Cancer”
Margarat & others – have you researched the highly controversial Baking Soda? I read so much positive and even more negative about Dr. Simoncini, but the fact that there seem to be positives makes me wonder? Then there is Dr. Mark Sircus. I was thinking of getting the 2 books but wondered if you have any input.
Cancer is a fungus Dr. Tullio Simoncini
Sodium Bicarbonate – Rich Man’s Poor Man’s Cancer Treatment
(should I have started / addressed the Sodium bicorbanate in a different blog? Or started a new one in FB?)
Hubby’s MGUS IgG kappa dx arose after he was hospitalized for right side numbness caused by Transverse Myelitis (TM)–swelling of myelin coating around spinal cord and given steroids. He also had a couple small blisters that broke out into Shingles (Herpes Zoster) after discharge. Did MGUS cause Shingles? Did Steriods allow Shingles to come out? Which came first?
He also has right foot toenail fungus / thickening. Still has numb right hand.
I remember having a root canal on one of my teeth just prior to my SMM diagnosis in July 2006. I was also diagnosed with an ear infection. The only sympton I experienced with the ear infection was that the ear canal was swollen almost completely closed…no pain what so ever! I took antibiotics but they didn’t help. My ear canal is very tiny to this day so much that it affects the hearing in that ear. I don’t think the root canal in my tooth had anything to do with my diagnosis but the ear problem may have been a symptom of a weakened immune system…not sure. I personally believe that I came into contact with a corrosive substance in 1986-87, namely acetone, that was toxic to me. It is my understanding that chronic symptoms take about 20 years or so to manifest themselves. Hope this helps! Thanks, Donna
I had some kind of a “chronic mononucleosis” (as my hematologist used to classify it) for some 14 years before getting a MGUS diagnosis. Also high titers for CMV were found in additional findings. SO my (new) hematologist, as well as an immunologist I visited and some other docs are supporting the idea of a viral-induced mutation of B-cells.
Best wishes, Robert
Flu Shot?? My myeloma was found when I developed a plasmacytoma in my left arm-the shoulder/bicep area. I did radiation and eventully needed a partial shoulder replacement as the bone was so damaged. I now have the beginnings of Multiple Myeloma. My arm started hurting around April of 2009. I was diagnosed in July. However, during the fall of 2008 I had a flu shot in my left bicep. It reacted some with swelling, itching and warmness. More of a reaction than I had ever had before. I have a hard time believing that the site the cancer decided to attack first just happened to be the site of the flu shot. Needless to say, I have skipped flu shots.