Every seat/couch no matter what even with proper posture will make my neck pain and symptoms worse. Today I decided to only lay flat or stand and I feel a little better. Has anyone else done this?
Georgia just joined Utah, Florida, Tennessee, and a few others in the pipeline in "allowing" umbilical cord-derived mesenchymal stem cells, and I've gotten tons of questions about them from patients, ranging from:
There's a ton of misinformation, mostly from clinics, but also social media about what stem cells are and what they do, and it feels timely to start putting together some stem cell 101 posts for CCI patients because there is a lot happening in the field that is likely to impact your care in the near future, for the positive, but also some negative.
I also find it really unique and cool that patients are fascinated by stem cells and want to learn, you don't see that with pharmaceuticals.
But, on the bad side, most of us rely on a handful of salespeople doctors for information, which is often riddled with smoke and mirrors and half-truths to the unsuspecting/desperate/vulnerable. I feel it's brainwashing people making a not-so-great patient environment and I actually expect that trajectory to get worse over the next few years.
I don't have any stem cells or procedures to sell you, so in the hopes of making a dent in that, maybe some neutral education can be beneficial. Will do my best not to get zesty, but no promises 😎.
For a bit of hope, I didn't coin this, but someone mentioned stem cells will do for chronic disease what antibiotics have done for infectious disease and I believe that to be true. Meaning, probably, one day things like Alzheimers, spinal cord injury, TBI, CCI, you name it, may be a pretty simple fix at your local Walgreens, or maybe an Amazon robot that comes to your house. Sounds wild, but things are accelerating, and it could happen in some of our lifetimes.
Some people know, but I don't flaunt it on here. In my alter ego, I'm a B2B journalist on regen med. I get to interview these labs and clinics similar to how I do for this sub. What's being worked on behind the scenes in these labs is super cool. Maybe someday I'll connect the right lab to the right CCI hands...
If there's interest in this, LMK and I'll continue, though it'll be sporadic as usual. The topics I had in mind are:
Unless people want other topics. As always, I'm not a doctor or scientist, just a dingus on the internet, so talk to yours before taking on any new therapy.
With that, let's start with the basics:
You may have heard of people getting "stem cells" and some miraculous yet mysteriously anecdotal recovery. Sometimes that's a PICL patient, Joe Rogan, or someone on Facebook who went to Mexico, and think to yourself, "I need to try stem cells".
Then, hopefully not the hard way, you learn how this side of healthcare colors well outside of the lines of traditional healthcare, and is rife with scams.
It's been going on for decades, and sadly, CCI patients have been thrown right into the lion's den. However, on the positive side, CCI is a prime target for stem cell/regen med technology. We just need to get through this awkward early phase.
You should know first and foremost that "stem cells" is actually a very broad term; there are buttloads of types of stem cells that do many different things. Here are 2 examples of stem cells in action:
1 - Skin. Over your life, you've had 100s, maybe 1000s of pimples, scrapes, or bug bites that you scratched off, and this broke the skin enough to bleed. You damaged that skin.
But, as long as the cut isn't big enough to scar, it turned back into regular ol- skin, and you forgot it even happened. If it didn't, or if you could see a heatmap of all those, you'd be decimated, but you're not.
How? Skin stem cells! They live in your skin and regenerate normal skin when damaged. Pretty cool.
2 - Blood. When you donate blood, they take that away from you, it's gone. But, over a few weeks/months, your body magically "tops you back up" with more blood. You can do this again, and again, and people do (I hate needles so not me).
How? Blood stem cells! Also known as hematopoietic stem cells, which live in your bone marrow.
When the body senses you're low on blood, it tells those blood stem cells to turn into blood cells. Or, if the body senses an infection, it tells them to turn into white blood cells and go attack the infection. These are also useful as a stem cell therapy for people with blood disorders, you can transplant healthy people's blood stem cells into another with good success in things like Leukemia. Interestingly, if you're an organ donor and pass away, they may also take your blood stem cells for this use case, they just did the first deceased donor last year I believe with good success.
You have stem cells in the cornea of your eye, inside your colon, almost all over. But their use case is usually specific to that tissue. For instance, blood stem cells don't become skin, skin stem cells don't become blood, colon stem cells don't become nerves, etc.
Mesenchymal stem cells (MSCs) are the biggest interest for CCI, you can think of them as orthopedic stem cells, though they have a few other use cases. Probably next article topic.
This is actually one of the most interesting pieces that almost no patient, and even many doctors, don't know much about, but how they got there in the first place is shaping the next generation of stem cell therapies.
Just as a sidenote which will tie into the below: Stem cell therapy, in a nutshell/completely broad stroke, is a crossroads between 2 sciences:
- Developmental biology: The study of how you became what you are, meaning how did the sperm/egg meet, form a baby that grows up, becomes an adult, then dies, and everything in between.
- Medicine: What can we apply to heal a person?
To answer the question of how you got those stem cells in the first place and why that matters for chronic conditions, we're gonna go into the weeds just a tiny bit, but all you need are the broad strokes so don't worry or ChatGPT for a simpler explanation.
In short, sperm meets egg, forms a single-celled organism called a Zygote. That Zygote is actually a stem cell, the most powerful type there is, and unlike the previously mentioned stem cells (blood, colon, etc) which are limited in what they can do, this will eventually turn into every single tissue of your body from tooth to blood, and create/store extra stem cells around those tissues for when things go wrong.
The very general process is like this:
Sperm meets egg, makes a zygote (one master "totipotent" stem cell) -> turns into an embryo (cluster of "pluripotent" stem cells that can turn into any type of specialized stem cell) -> specialized stem cells (blood, mesenchymal, colon, whatever type of tissue-specific stem cell) -> turn into tissue.
Ignore the left side, here's a quick chart of this process:
And don't forget, it also stores some for later. All from a single cell which is pretty incredible.
One thing that stem cells can do is divide/duplicate themselves over and over and over, similar to bacteria growing on your kitchen counter, and that's what the Zygote does as it travels down the fallopian tube.
When it lands in the uterus, it's now a cluster of super powerful stem cells that can turn into any type of those specialized stem cells (like the MSC, colon, etc), which will then turn into your tissues. The only thing it can't become is that single master stem cell (zygote) from the previous step that made these ones.
This cluster is called the embryo. This ability to turn into any type of stem cell is called "pluripotent", whereas something like a blood or mesenchymal stem cell which can only turn into a few things is called "multipotent".
We could use embryonic stem cells to make anything in your body. You could turn them into neural stem cells and build a spinal cord, you could turn them into a new set of pearly whites, really anything, with the right lab and scientist of course.
However, there's an ethical dilemma, because it can involve abortion (although usually IVF), and a lot of the funding was cut off for that reason.
But, about 20 years ago, scientists in Japan discovered something pretty amazing. They learned how to take adult skin cells, insert some genetics and the right lab conditions, and reverse them in time back into pluripotent stem cells, which can then be turned into anything like embryonic stem cells.
So you can take a sample of my skin, reverse it back to a pluripotent stem cell, multiply it a bunch of times, turn that into a neural stem cell, and build me a new spinal cord from my own cells and transplant it into me. In fact, Israel did that in mice a couple years ago with good results, and last year they apparently did it in humans, but no word on how that went probably for a long time.
This whole thing is called "induced pluripotent stem cells" or iPSCs, as you're "inducing" them to become pluripotent. That discovery won the nobel prize.
Here's a really simplified chart of iPSCs:
So if the problem at its core is that ligaments have been damaged, causing the head to wiggle on the spine, irritating everything. The goal of most treatments is to take mesenchymal stem cells (MSCs), which are essentially musculoskeletal stem cells (fat, bone, muscle, cartilage, ligament, tendon, though they have other uses too), put them on the ligaments, and hope for the best.
But, at least the way it's done right now, it comes with many problems and may not work that well especially the older you are. There is a lot more to it than just spray the ligament with stem cells and hope for the best... stem cells aren't magic, and they don't speak english, so you can't just tell them what to do. They talk to each other through what's called cell signaling. An example of that would be inflammation, which gives off a chemical signal to those cells, telling them "we're busted up come help", the environment (also known as the "niche") matters a lot, and many other things.
To name some of the biggest problems I see with what we do today:
1 - The source: MSCs are found in many places. Fat is rich in them, but it requires an enzyme to break the fat away, and the FDA doesn't like that (this can be explained in the regulatory article, it's baffling). The uterus is also rich in them, menstrual blood contains MSCs, but there's a marketing problem with that amongst others (although it's picking up in the veterinary space).
Your bone marrow also has some MSCs, but it's a tiny tiny number. As you age, that number declines, and they become less functional, which is one reason kids "bounce back" while adults do not. They've also likely taken in every toxin/stress that you have. Every hot pocket, every polluted breath, etc.
Clinics whose tool is to take your bone marrow, spin it, and inject it that day will often highlight cases from older people in hopes of convincing you to swipe your card. Not that it can't or hasn't been shown to work, but I don't buy it, sorry.
Lastly, on different sources, not every MSC is the same, and I don't think we really know the differences in what a fat-derived MSC might do vs a bone marrow-derived or what your MSCs might do in my body. Cart is before the horse by a wide margin.
2 - Invasive harvest: Clinics will try to downplay this as NBD, but I've had several bone marrow aspirations. Getting your hips drilled into sucks. Additionally if you're doing PICL or another anesthesia-required procedure, you're doing double anesthesia that day. The second time you wake up, you feel like ass.
3 - No idea what you're getting: This carries from point 1. Some clinics will give you a "TNCC" with your bone marrow aspiration, but even that's rare. TNCC is total nucleated cell count, or a count of how many cells they got out of you. That is not a stem cell count, the MSCs in there, according to the peer-reviewed literature, is about .001-.01%. So if you got a TNCC of 1 billion, this means 10-100K MSCs.
That alone is a massive difference in dosage. I don't buy that a 10x potential difference in dosage doesn't affect outcomes... hence why, if you ask, the answer is never "it doesn't matter", but rather "we haven't seen any difference". Two very different answers. You really don't know what you got sadly.
But, that's just how things are in this first wave. The way things are going is likely to be mass-produced, off-the-shelf stem cell therapies, for which every lot (batch) will go through a third-party lab to characterize how many stem cells and what else is in there. They're actually required to give you the third-party lab results in Florida, though it's not the whole picture.
The economics of doing third-party lab testing for every bone marrow draw don't make sense, but when produced in bulk, they do, so that could be huge.
Now, how could iPSCs be used? For one, you could turn them into an almost unlimited amount of MSCs, without a bone marrow harvest. One company is making them for research purposes, calling them iMSCs:
https://www.reprocell.com/clinical-stem-cell-services/gmp-imsc-and-msc-production
But, on top of that, if you have nerve damage, maybe in your spinal cord/brainstem, you could also make neural stem cells and inject those too. Or maybe your jugular has taken a hit, you could engineer those too.
There's a future for that, but the current problem is the cost. If you're making them for an individual, each dose costs about $500K-1M per patient, though it's coming down with automation. Cost-per-dose is top of mind and there's some amazing tech in the pipe.
Additionally, there's the risk of tumors from pluripotent stem cells. Early on, China threw them into the market, and I believe a bunch of patients got cancer, and they halted a lot of it, but that part's getting better too.
The first iPSC-derived therapy in the world actually got approved in Japan just a few months ago, where most of this stuff is happening.
As a sidenote, I interviewed one of the japanese guys from the nobel prize lab. He's starting an iPSC company in california, and when trying to explain iPSCs to immigration, they were really suspicious because they had no idea wtf he was talking about lol. But he says in Japan, everybody knows them! That will change in time. Once that seal breaks... Anyways.
The answer is yes, probably, and I'll hold off on too much until the next post about mesenchymal stem cells, the various sources, and things you could do to them to make them potentially more effective.
That's when things get pretty controversial and scammy, yet hold a ton of potential if done right. We'll dig into why everybody goes to Mexico (I wouldn't do this) for stem cells, the new state laws, what's in the pipeline for MSCs (some companies seem to have actual tissue regeneration demonstrated; it's cool), and some pointers on how to stay safe as a patient.
Stay tuned!
