Not just myeloma

April 20, 2018 / Margaret / Leave a comment

First bit of news: I’ve had absolutely no pain in my heel. It’s as good as new. I have to admit I’m still stunned…and I wonder if a more conventional doctor, let’s say a physiotherapist, would have made the connection between my relatively new eyeglass prescription and my heel pain. I doubt it.

This makes me wonder how many similar cases there are, of people who think they have plantar fasciitis or tendonitis or, sorry for the mention! 😉 , heel spurs, but whose pain actually originated in a different part of the body, an easy-to-fix part of the body. Mind-blowing, eh?

But the reason I’m writing today is that EBV, that is, the Epstein-Barr virus, is in the news again.

I wrote a few posts about the EBV connection to MGUS (and, therefore, to SMM and MM) back in October of 2017 when I came across an Italian study on this very topic, and then another bunch of posts in December and January, as I recall. To find and read these posts, all you have to do is put the acronym “EBV” in my blog’s “Search” box.

But now we have a more recent EBV study (which a dear SMM friend, thanks!!!, brought to my attention), conducted by a team at the Cincinnati Children’s Hospital Medical Center, showing that this terrible virus is linked to SEVEN OTHER diseases, as follows: lupus, MS, RA, inflammatory bowel disease, juvenile idiopathic arthritis, celiac disease, and type 1 diabetes. (!!!)

Here’s the link to the Science Daily article: goo.gl/FMyGe5

It’s a very interesting, easy-to-read article…a highly recommended read. As my friend commented, EBV has reached the mainstream now.

Here’s a food-for-thought excerpt from the SD article: “When viral and bacterial infections strike, our bodies respond by commanding B cells within our immune systems to crank out antibodies to battle the invaders. However, when EBV infections occur, something unusual happens. The EBV virus invades the B cells themselves, re-programs them, and takes over control of their functions.”

Given all the possibly dire consequences of an EBV infection, and given the fact that more than 90% of adults all over the world are antibody positive by the time they are 35 years old (freaky fact), we must take action. So, while we wait for an EBV vaccine to be developed (see article for more info), we need to build up our immune systems and, more importantly, those of our kids. How do we do that? Well, by looking up all the natural ways to block EBV…Curcumin would be at the top of my list: it prevents B cells infected with EBV from becoming immortal, etc. etc. etc. (check PubMed…I even found a study published back in 1998 about how curcumin affects EBV!)…There is lots we can do…

Oh how I wish I’d known all this stuff when I was in grad school, BEFORE I contracted this bloody virus, which, I just read, is an ancient fellow, perhaps 100 million years old…another freaky fact!!!

Anyway, it’s too late for me now…But it might NOT be late for you, so…get going! PREVENTION IS KEY!!! 🙂

It isn’t plantar fasciitis after all…

April 17, 2018 / Margaret / 5 Comments

On the recommendation of our GP, yesterday I went to one of Florence’s most famous chiropractors who is also a physiotherapist and an acupuncturist.

I told him (and another female doctor who was there taking notes) my heel pain story. He asked me a few questions and then declared: “It’s not plantar fasciitis.” I was stunned. So what is it?, I asked.

He gave me an exhaustive and detailed explanation, which, unfortunately, I remember only in bits and pieces. But here’s the gist: my heel pain turned out to be merely the final step of a series of events that began when I got new eyeglasses back in October-November 2017. In a nutshell, my new glasses put a strain on my left eye, which at some point caused a “bad something” to happen in my left mandibular region. That “bad something” eventually traveled all the way down to my right hip, making me walk in a “funny” way…until finally it affected my right heel. I felt discomfort and pain only when it reached my heel.

Well, I have to admit that I was skeptical at first. Eyeglasses causing heel pain??? His explanation just sounded too convoluted. But then he proceeded to press down, at times quite hard, on certain points of my body (ouch!), including my right hip (curious note: near or possibly ON the area of one of my BMB tests…).

The result is that today I HAVE NO PAIN IN MY HEEL. None. Zero. Zilch. It’s all gone. Well, the proof is in the pudding, as the saying goes. The doctor said it will take three more sessions to get me back to normal, but I already feel fabulous…and I admit that my initial skepticism has all but disappeared…

Another thing we discussed was my cat allergy.

He says he’s going to fix that, too (!!!???!!!), so that I won’t have to resort to drugs anymore (Ventolin, e.g.) in order to live more easily with our beloved 7 kitties. He pressed some areas in my hand or wrist to work on the allergy, as I recall (I was so busy answering questions that I don’t remember, exactly).

In addition (what follows has to do with the cat allergy, not the heel pain, eh), he told me to stop drinking anything containing milk. Deep breath. Okay, Margaret, you can do this…

And so this morning I had a soyaccino instead of my usual cappuccino. The taste isn’t great, no not great at all, but, well, acceptable, I guess…although my first reaction was: yuckrevoltingbleahcan’t-stand-it!!! Note: this was my first taste ever of soy milk (organic, of course). I think I can get used to it. If not, I’ll switch to tea…

It’s going to be more difficult to give up sugar, which is the second thing he recommended. He said it wouldn’t be forever…just for a while (months, probably). The benefits would be immense…I mean, I wouldn’t be allergic to the kitties anymore…I wouldn’t gasp and reach for my Ventolin anymore…That would indeed be great.

I have to admit, though, that right now the idea of giving up both milk AND sugar is tough…

For TODAY, though, I’m simply enjoying being able to walk normally again.

Feeling good! 😀

Disappointing andrographolide

April 11, 2018 / Margaret / 15 Comments

I received my blood test results yesterday afternoon. I’m not pleased at all. In fact, after comparing these results to my previous ones, I went into a bit of a funk and decided to take the rest of the day off… 👿

When Stefano got home from work and heard about the tests, he admitted that he, too, was disappointed, but he added, “you’ll figure out something. You always have.”

My no. 1 fan…!!! 🙂

Okay, here goes. The main negative is that my total IgG shot up quite a bit. It had been going down pretty much steadily since 2013 (when it also shot up unexpectedly), but yesterday’s results took it back up to the 2013 levels. Aggggh!!! My M-spike also went up, but I should note that it has been higher, so that doesn’t concern me as much…

I’ve been trying to think of possible REASONS and have come up with a bunch of ’em, which are, of course, mere suppositions on my part, since I cannot possibly know WHY this experiment wasn’t as successful as I’d hoped it would be:

perhaps curcumin and andrographolide aren’t synergistic. I took them at the same time every day. A mistake?
perhaps the brand was not as good as I thought. I checked it out before ordering it, of course, and it seemed fine to me (a German brand, no bad reviews online, etc.), but…you never know…
1. as we know, stress affects myeloma, and 2. I’ve been under quite a bit of stress lately, between Stefano’s shingles and my plantar fasciitis, e.g. Since stress had such a negative effect on my test results in 2013, I just have to wonder if it could have happened again.

The bottom line is: WHO KNOWS?

That said, my other markers are actually okay:

no Bence Jones;
kappa/lambda ratio, down a bit (a descending trend since 2016);
uric acid, within normal range (note: it hasn’t been normal since 2010);
CRP, fine;
B2M, normal (note: it hasn’t been normal since 2009, but I’ve never been concerned because it has been only slightly above normal range…still, it’s good to have it within the range now);
no change in the other two immunoglobulins, which are low but holding their own;
total protein, slightly lower compared to last tests;
calcium and creatinine, lower and still nicely within the normal range.
hemoglobin and hematocrit are fine…both within the normal range.

So the rest of my results are acceptable, or as acceptable as smoldering myeloma results can be (!!!).

The puzzler is merely this jump in total IgG.

Any thoughts? I know that a few of you began taking andrographolide at the same time I did (toward the end of February, more or less). Have you had your tests yet? Oh I so hope your results will be BETTER, much better!, than mine (that would show that the stress thesis is indeed correct…).

I’m sure you won’t be surprised to read that I will NOT be experimenting with any new extracts anytime soon. I need to get my IgG back DOWN, so, starting today, I’m going back on Reishi, which has done so well for me, and possibly ashwagandha (ditto), if I can find a reliable ashwagandha seller over here in Italy.

But oh how bloody disappointing. I was sooo enthusiastic about andrographolide. I still believe, strongly!, that it holds promise as one of the only (two) substances that attack myeloma stem cells, but more research is needed…and caution, too, obviously.

Well, this has taught me what I think is a good lesson: never ever test a new substance during a period of stress. At the first signs of stress, stop the test. Resume it only once things have gone back to normal. From now on, that is what I will do…

#DeleteFacebook…my thoughts…

March 29, 2018 / Margaret / 2 Comments

Since I have both a personal profile AND a (public) Page for my blog on Facebook, I can’t ignore the recent unsettling revelations concerning Cambridge Analytica’s harvesting of personal data from millioooooooons of FB accounts…And, while NOTHING would have changed the way I voted in the 2016 U.S. presidential elections, I still find these revelations rather disturbing. I mean, I don’t want my data to be used by ANY entity for ANY reason…

I’m relieved that I never fell for any alluring quizzes and tests, which would have given some of those entities access not only to my own personal data but also to that of my FB friends. 👿

I also don’t play any games on FB (the candy crush game, etc.), and, most of the time, I ignore my FB friends who invite me to do this or that, or join this or that…

My life on FB is actually quite tame, although I’m fierce about protecting my own privacy and that of my family/friends. That said, I wasn’t always so careful: when I first joined FB, I innocently published quite a lot of cute photos of Stefano and me, our wedding, and other family photos. I subsequently deleted almost all of them, leaving only two (I think): 1. a hazy but beloved photo of Stefano and me kissing in the Arizona desert (the camera’s self-timer seemed to take forever, so we began laughing while keeping our lips locked…such a funny moment…), and 2. my profile photo, which is a photo of…you guessed it!…my (face) profile. Again, a bit on the fuzzy side (but it IS me!).

The only photos I publish on FB now are photos of my kitties. I can’t help myself…They are simply too cute (see our two 7-month-old kittens, sleepy Pandora on the left, Pixie on the right)…

Okay, let’s get back to the point of this post. Because of the big Cambridge Analytica and Facebook mess, a Tweeter movement called #DeleteFacebook has recently been encouraging people to delete their FB accounts.

I did think about it…about deleting…but I’ve decided not to go that far. The reason I’m going to stay on FB is simple: outreach. It’s perhaps the easiest way to keep in touch with my blog readers–well, with those who have FB accounts!–as well as reach out to people who, e.g., have just been diagnosed with MGUS or SMM or even MM (and other types of cancer, too, of course), and are freaking out, just as I did when I was first diagnosed.

Plus, I am co-administrator of two FB support groups (well, to be precise, I’ve semi-retired from the now-huge multiple myeloma support group that I founded years ago…It’s being administered by others, now). I’d really hate to fall out of touch with some of the people I’ve met in these groups…some, I’ve even met in person…

In sum, I’m not deleting anything. I just have to remember to update my FB privacy settings from time to time! 😎

Plantar fasciitis

March 25, 2018 / Margaret / 6 Comments

When I got out of bed on Friday morning, I felt a sharp pain under my right foot, near the heel. Oooh, that hurt! It got slightly better as I hobbled downstairs and into the kitchen to feed the cats and make myself a cappuccino. The more I hobbled/walked, the less the bottom of my heel seemed to hurt.

By mid morning I seemed to be okay and so, as planned, I took the bus into the center of Florence where I had lunch with some relatives, took them around Florence, and showed them the sights…I’ve always enjoyed seeing my beautiful Florence through the eyes of people who don’t live here. It’s always lots of fun.

But boyohboy, did we walk. We walked, and walked, and WALKED!!! All over the place. My heel didn’t bother me that much, although the pain would return occasionally, making me limp just a bit. The relatives didn’t notice, so the limp wasn’t that obvious, I guess.

I got home just before dinner and told Stefano about it, but my slight heel pain really paled in comparison to the discomfort he’s still in, poor sweetie.

On Saturday morning, I couldn’t stand up. The pain under my right foot was almost unbearable. Mainly, though, I had no idea what was causing it, and that was unsettling…

Anyway, long story short. Diagnosis: plantar fasciitis.

If I could go back in time, I’d change a bunch of things (hah!, wouldn’t we all??? 😉 ). One of them would certainly be my fixation with wearing flip flops. I wear them in the house, summer and winter (with socks, in winter). I mean, I wear them A LOT. Way too much, evidently…How stupid I’ve been.

Flip flops are okay for the beach, but they are flat and flimsy (although mine aren’t as flimsy as most) and most of all, they don’t offer any arch or heel support. It’s okay to use them for a short while (on the beach, e.g.), but that is IT.

If, like me, you love wearing flip flops, please be careful…You don’t want to get this thing…

Anyway, I’ve already ordered special shoe inserts and special socks. And while I’m in the annoying pain phase (although today the pain has lessened a lot), I’ll be icing the bottom of my heel and rubbing an arnica-based ointment on it…And keeping my foot at a 90-angle degree as much as possible. After this painful phase is over, there are exercises I can do…

So…no big deal. Or, should I say, no big heel. 😉

Drinking plastic

March 16, 2018 / Margaret / 1 Comment

I just read a BBC article about a new study showing that the bottled water of major brands (Nestlé, Coca-Cola, Pepsi…) is contaminated by microparticles of plastic. Here’s the link : goo.gl/fCPQp6.

Just a few years ago I discovered that Italians are the major consumers of bottled water in Europe…We’re talking, more than 10 BILLION liters of bottled water per year.

That means that every single Italian drinks about 208 liters of bottled water per year…Now, if you exclude those of us–and there are quite a few by now–who do NOT buy bottled water, that adds up to A LOT of bottles, which, er, don’t always get recycled (another problem altogether, sigh… 🙁 ).

I’ve always felt that there’s something wrong with Italians’ bottled water obsession. My gut feeling would increase during the summer, when I’d notice trucks, loaded with bottled water, parked all over the city in the HOT SUN…It didn’t take a genius to figure out that those plastic bottles were heating up and releasing toxic crap into the water…And this was even before we knew about BPA…

I still have friends telling me that they can only drink bottled water. It’s crazy.

Plus, bottled water is bad for your back!!! Whenever I’m at the supermarket, I see Italians struggling to lift their heavy loads of bottled water into their carts. Ouch!

Bottled water makes no sense to me, on any level. Of course, it makes sense to the bottled water producers that deluge us with commercials in which famous soccer players or actors tell us how healthful a particular brand of mineral water is, blablabla. Boy, I can’t even imagine how much money these brands make…

Anyway…

Truth be told, the BBC article points out that plastic particles are a bit everywhere: “Last year, Prof Mason found plastic particles in samples of tap water and other researchers have spotted them in seafood, beer, sea salt and even the air.”

But if we all stopped drinking bottled water, there is no question that we would help reduce the amount of plastic (bottles) in the environment…That’s a huge incentive to stop, right there.

And so I’m sticking to my tap water…unless, of course, I’m in a place where it isn’t safe to drink it…

My NON post

March 13, 2018 / Margaret / 6 Comments

When I first began blogging, in March of 2007, a more experienced blogger informed me that I had to publish a post every day in order for my blog to be visible on Google and not be deemed “inactive.” If I stopped writing and publishing, even for ONE day, he added, my blog be more difficult to find on the search engines, meaning that I’d lose my readership. He talked about blogging as though it were a competition.

Well, I didn’t care about competing with other bloggers and/or becoming THE most popular myeloma blogger (!), but I did want to reach and possibly help as many people as possible, so I tried very hard to write and publish a post every day. Not easy, when you have “distractions,” such as a loving hubby, a job, a bunch of cats needing attention and care…and so on and so forth….

At a certain point, though, I decided, ENOUGH. I wanted to enjoy my life outside the blog. I’d done enough research to last almost an entire lifetime and, to be honest, I was sick and tired of reading scientific jargon every single day…

Plus, sometimes I didn’t know what to write about/had writer’s block. Writing became a bit of a struggle, even though I have to acknowledge that it’s only thanks to my blog that I have discovered how much I love writing…

Anyway, back then, in short, I needed a break.

And so I took a break from blogging. Just as I’d been warned, my readership dropped. Day by day, practically. It’s now down to less than a third of what it was in the “golden years.” But I didn’t care. I was outside, breathing fresh air, enjoying life, with plenty of time to spend with my friends…and so on and so forth. 😉

Mind you, I still had, and have!, a lot of readers writing to me with their questions and findings. In fact, many of them have become friends in real life, which is just wonderful. I also still had and have a lot of mail to sort through on a daily basis…often so much (mail) that I cannot reply to everyone, and for that I apologize.

Recently, though, I’ve been coming across some really interesting and/or promising stuff, which I’ve found on my own or thanks to blog readers (you know who you are, THANK YOU), such as:

the bone marrow microenvironment studies
the EBV-MM connection
Dieneke’s case study getting published in the UK (yaaaay)
andrographolide
the Chinese MM patient’s case study
astragalus

There seems to be a lot going on, which is very exciting. Inspiring, in fact. And for a while I almost got back to a post/day… 😉

But ever since Stefano came down with shingles (he’s better now, btw, but still in quite a lot of pain…hasn’t gone back to work yet), I haven’t felt much like writing. It’s so hard to see the person you love in such pain. His pain has had an effect on me, too.

I haven’t stopped doing research…But these days it’s been mostly on the natural ways to relieve the pain caused by shingles, and in fact the turmeric-based topical applications have really helped him. However, only prescription-strength Tylenol (the Italian equivalent) is able to reach the sort of INTERNAL nerve pain he has been experiencing…My poor sweetie!

BUT, of course, this negative period will soon be over. Stefano is already feeling better, and the awful rash is fading. That means that I’ll soon be back to blogging more. I’m already looking at a couple of studies on my desktop, hoping they’ll inspire me to write a post…

Okay, it’s time now to go check on my patient. Take care, everyone! CIAO! 🙂

Margaret's Corner

Author: Margaret