This Week in My Life: Week 25 of 2016

First of all, I think I just blew my niece's mind. While on a video call with her today, and simultaneously starting on this post, I asked her to guess what week number it was, like how many weeks have we had so far in 2016. Her first guess was reallllllllly high, so I informed her that there were only 52 weeks in a year. That blew her mind. I get it. I miss being a kid, and feeling like time went by soooooo slowly. Now it feels like it goes by at warpspeed. Anyway, once I gave her the parameter of within-52-for-a-year, she guessed 26, so  right on (week 25 ended yesterday). As a reward for a good guess, she got to give me a little virtual makeover:

I think I rock this look.

The view from here:

Horn fountain at my mentor/friend's house.
Musicians will get why the addition of clams is perfect and HILARIOUS.

My friend has an okay garden.

Afternoon light on the floor. 

My sister sent me this picture of card catalogs at the Library of Congress.
Then we had the following text exchange:

We're both former library employees and lifelong hardcore library lovers.
Old-school card catalogs get us excited.

What I made this week:

Yeah, these kebabs look amazing but they WERE NOT.
The marinade ended up sucking despite being made from only delicious things.
I made half chicken and half tofu. Tofu on the grill was a TERRIBLE idea.
Very disappointing. 

Expanding the kinds of origami magnets I sell:
elephants, sloths, pigs, giraffes, cranes, whales.

This grilling time was better overall.
Lime+Cilantro Sweet Potato Wedges, cheese-stuffed jalapeno, and broccoli in foil packets.

Lots of pretzel roll sandwiches this week. Yum.
Too big for my mouth, though.

What I read this week:

Host by Robin Cook. I'm a big fan of medical thrillers. This one was okay, but definitely not his best. But I took a picture of this page, because I knew the MS community would get it. Boo big pharma!

Now I want to see the actual data on advertising costs vs research costs vs lobbying costs.
I know I can't flip through a woman's magazine these days
without coming across at least one Gilenya, Aubagio, or  Tecfidera ad.

Being Mortal by Atul Gawande. Very good book on an important topic by an author I love. Read it!

And in MS reading:

Lots of stuff online this week about the study from the Lancet on the Canadian chemo + stem cell treatment. My chemist friend Brian (husband of my BFF Heather) sent me the link to abstract from the Lancet article. I've been aware of this and similar stem cell trials, so was very interested to see the results. They are crazy promising. What I think is the most exciting is that several patients not only saw the MS stop in its tracks, but there was REVERSAL of previous damage. That's HUGE.

Then I saw someone share this article on Facebook which puts it in perspective a little bit. Sobering that this potentially life-changing and amazing treatment may only help 5% of the MS population. Or rather, only 5% may qualify at least based on the current guidelines? It's also a pretty extreme treatment and potentially risky (one person died in the trial), but I think the results make it very worth looking into. If I have to stop Tysabri at some point if I become JC-positive, I may well try to get in on a trial for this kind of treatment.

Yesterday, my brother emailed me this article on the stem cell thing. I think this is the best article I've read yet in terms of how thoroughly it discusses the trial and its results. If you're only going to read one article about this, read this one! The inside look at one patient who was hospitalized, in a wheelchair, and had no feeling from chest down before the study to working full-time, and living an active and athletic life after the study and having no MS activity 14 years later (despite having various other challenges that linger from the chemo) is particularly illuminating and inspiring. This is also the best article because it has many very helpful graphics. The tidbit that it costs $50K-$65K is included as well. [But that's one and done. Pretty much all the other MS drugs cost AT LEAST that much for just ONE YEAR. See above mini-rant about big Pharma above.] Here's an example of the helpful graphics in the Vox article:

this visual helps, yes? (not included on this is the fact that 1 patient died.)

This article suggests taking Vitamin D probably doesn't do any good. Well, that's just great. I can't possibly get it from the sun the majority of the year where I live. I'll keep taking it if only to prevent having my doctor yell at me when they test my levels once or twice a year. But I wish taking it would actually do something. [Then again, maybe we'll see another study later this year with the completely opposite conclusions.]

Here is an interesting look at changing the name of relapsing-remitting MS to just relapsing MS, because "MS does not remit." I get the point, for sure. When we hear "remission" in relation to cancer, we generally think of that as it-could-come-back-but-pretty-much-cured, right? It's not the same with MS. Many people who are not on drugs and choose to stay not on drugs because they are not currently experiencing symptoms don't realize that the disease is still probably doing damage. It's always there like the rude, messy, mean uninvited guest that it is. Not that I think the current MS drugs are perfect, but is taking them better than just letting the disease run free? Yes.  AND THEN THERE IS THE COMMENTER ON THIS ARTICLE THAT SAYS WHENEVER HER MS "KICKS IN" SHE JUST "HEALS" HERSELF BY GETTING RID OF THE GLUTEN/SOY/DAIRY/GMO/SUGAR. I CAN'T EVEN.

Off to have the most fun week ever! Going to get my niece and have a week of fun times!!! Wahooooooo. Expect pics of said fun times next week.

Hookworms???

I sometimes like to fall asleep listening to podcasts of NPR's This American Life. It's not that I find Ira and company or the material to be boring (usually quite the opposite) but I find that I will usually drift off by the end of one of these shows. If you're not familiar with This American Life, I highly recommend it. But on one recent such night, instead of drifting off, I was startled awake by a somewhat disturbing and entirely intriguing story with an MS connection.

It was Episode 404: Enemy Camp, and it originally aired in April 2010. Act 3 of the show tells the story of Jasper Lawrence, a guy afflicted with pretty severe allergies and asthma. Lawrence learns that people infected with hookworms tend to not have allergies or asthma or any other autoimmune diseases like MS or Crohn's Disease. So, naturally, Jasper decides to get himself infected.

Before I go further, let's take a look at this miracle cure:

Cute, eh? These little guys enter the human body through the soles of your feet and make their way to your intestines, their preferred homes, where they feast on your nutrients and your blood.

Back to Jasper. After discovering he couldn't purchase these critters anywhere, he hopped on a plane to Africa and spent some time walking around bare-footed in the latrines of various villages. To his delight, he did pick up some little friends and he did indeed find that he no longer suffered the effects of allergies and asthma that had plagued him for years. He then realized that he had a gold mine inside of him and as he puts it "literally crawling out of [his] feces!" So, he decides to harvest the worms from his own waste, clean them off and sell them to people with various autoimmune maladies so they too can experience hookworm happiness. Believe it or not, he does get dozens of takers. He's baffled, though, why he doesn't have people lining up at his door.

Well, Jasper, here are a few reasons. 1. See above picture. Sure, I can accept the whole thing about there being good bacteria in our guts that are helping us, while also knowing that generally bacteria is harmful to us. But something about half-inch wriggling worms with fangs that would make all those vampires so popular right now jealous is a bit harder to swallow.

The next issue. Have you ever seen pictures of African children with hugely distended abdomens? Hookworms were the cause. Our good friend Wikipedia also tells us that hookworms are "a leading cause of maternal and child morbidity in the developing countries of the tropics and subtropics" and that they cause "intellectual, cognitive and growth retardation, intrauterine growth retardation, prematurity, and low birth weight among newborns." In their defense, hookworms are not usually linked to mortality, and the most common symptom is anemia. In sum, there are significant causes for concern, I would think, before swallowing any of these magic little bugs.

And last, a very complicated issue that anyone with any incurable disease or condition is likely familiar with. There are lots of "miracle cures" out there for pretty much everything, and someone's neighbor/cousin/brother-in-law's vet's fiancée/etc. has been cured by one of them. Good-intentioned people then go on to suggest to us, the ill, that we simply try it too. Simple. Or not. As patients, we have to make a decision on where we stand on the whole Western medicine vs. Complementary and Alternative Therapy vs. experimental therapies divide. We have to decide whether to trust our doctors and follow their recommendations or to try anything and everything or to land somewhere in between. It's a tricky terrain to navigate, and this could easily turn into its own post (and probably one day will) . But wherever you fall on this spectrum, most people will agree that scientific testing is at least somewhat important for making decisions.

And, believe it or not, there are actually doctors and scientists studying the hookworm as a potential treatment. There are clinical trials wherein patients are infected with hookworms. And some results have been promising. You can read about a study focusing on MS here. The basic idea about how the hookworms work, by the way, is by putting a damper on the immune system. The thought is that it will lower the rate of relapses because of the immune system trickery the worms cause. But bottom line is, the testing process is not over, and many of us have chosen to trust in the process. The results of the MS-specific study linked earlier will be available fairly soon: 2011/2012.

After the initial airing of this show, the FDA swooped in and shut down Jasper's little lab. A truly passionate hookworm advocate, though, he decided to flee the country and continue to harvest and sell the offspring of the little critters that keep him from sneezing. On his website, you can read more about Helminthic Therapy, as I guess this is called, and even find out how you can try out some of the worms. (You'll need to travel outside the country to receive the treatment.) The website is: autoimmunetherapies.com.

I will certainly continue to follow this situation. I hate the idea of being infected with hookworms (REALLY hate it), but I have to admit that I find some of the research and the science compelling. If Helminthic Therapy becomes an approved therapy for MS at some point and my doctor recommends it, I would probably consider it. But sorry, Jasper, for now I'm staying away from anything crawling out of your feces.

So, hookworms. What do YOU think???