Pretty cool.

https://www.fda.gov/media/193424/download?attachment=&utm_medium=email&utm_source=govdelivery

This is from a company called Orca Bio in Sacramento, it appears to be their first approval, with a handful of others in the pipeline.

Real broad strokes of what this is:

The therapy is called TREGZI, it's used for people with blood cancer.

If you have blood cancer, not that long ago we discovered you can take someone else's blood stem cells and transplant them into you, which helps your body make healthy blood, but sometimes comes with a condition called graft-vs-host disease (GVH).

Kinda similar to how your body can reject an organ transplant, but it's really nasty when it happens as it's systemic. Ironically, the only proven mesenchymal stem cell therapy (ryoncil) is used for this, it can calm the immune system down in GVH.

TREGZI, from what I understand, seems to handle all of that in one. It's a combination of allogeneic (donor-derived) blood stem cells, with engineered T-Regs (special immune cells) that fight off cancer and GVH.

They did a Phase 3 trial, showed it worked, FDA approved yesterday. I'm not a regulatory expert, but I imagine in 6-12 months it may be covered by insurance, medicare, etc.

When my dad was a little boy, his mom passed from Leukemia, so this hits home.

It's a bias ask, because this sub is mostly filled with patients looking for treatment/answers, and clinicians working in the space. However, I am curious what patients think about everything happening at the FDA.

If you aren't aware, especially this year, the FDA is doing an about face in many ways. This may be good or bad news depending how you slice it.

Here's a quick timeline to catch you up:

1 - RFK elected. Being a stem cell patient himself, promised to end the war on stem cell therapy. Seems close with many stem cell companies/clinics.

2 - FDA commissioner (head of the FDA) canned. Replaced with Dr. Marty Makary who seemed open to changing things and speeding trials up, increasing access, etc.

3 - CBER (the FDA division responsible for biologics regulation, i.e., vaccines, gene therapy, stem cells) director Peter Marks canned. Replaced by Dr. Vinay Prasad. For some time, we weren't sure what this would turn into. Many people thought RFK, Makary, and Prasad would open the floodgates, but Prasad didn't seem to want that. In fact, he pushes back on changing things at the FDA, rejecting some gene therapy stuff, gets into big political battle with those companies/patient advocates.

4 - Laura Loomer (iirc) digs up an old podcast where Prasad badmouths Trump, makes him angry. Seems that trump passed along the message to can Prasad, which they do.

5 - With no director, media all over it, maybe a month later Makary convinces the FDA to bring Prasad back. He then becomes CBER director again. This is even worse imo, FDA in shambles, clearly a battle brewing.

6 - Then, a month or so later, they can Prasad again, I think because of the gene therapy battles. They also can the head of CDER (the division responsible for regulating pharmaceuticals).

7 - About 2 months ago, shockingly, they also end up canning Commissioner Makary... We now have an acting commissioner, and acting CBER/CDER heads, nobody knows where this is going.

8 - This Monday, the HHS announced Operation TrialBlazer, hoping to counter China's rapid clinical trial efforts, especially on cell & gene therapies. In a nutshell, they're hoping to speed up the process of bringing new therapies to market by cutting down on some of the requirements. China is full stem ahead btw... they just launched a 2,000 person RCT studying IV umbilical stem cells for aging, lots of crispr/ipsc work, etc. They want it, and they're gonna take a slice, if not the whole pie, very similar to electric vehicles/manufacturing.

There's a lot more, for instance state by state, birth tissue stem cells are being allowed, yet it's still federally non-compliant (sorta like weed), though whether the FDA will go after them is TBD. I doubt they will, but you never know.

So, I guess the summary is things are heading towards some form of deregulation, which is a double-edged sword. It'll likely start off slow, see how it goes, and maybe accelerate. Or, patients get harmed/scammed too much, maybe mid-terms smash the current admin, and they reverse things. All up in the air.

I know FDA politics can be boring, but it can also greatly affect your care. What are patients thoughts on this?

Derivation of elephant induced pluripotent stem cells https://www.nature.com/articles/s41592-026-03136-4

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:

• What are these?
• Aren't they a scam?
• I just attended a timeshare-like dinner on a clinic trying to sell me a 25K umbilical cord stem cell package, what the hell was that? (These are happening, stay away)

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:

• What are mesenchymal stem cells, what do we know/don't know? Why are they so controversial? What does real stem cell research look like? (Hint - not "this" 🫠)
• How are they regulated? It sounds boring but it's a huge deal. Once you understand this, the mess we all live in (do stem cells work for CCI?) begins to make a lot more sense. The regulatory environment is partially to blame for our situation and needs to change. Maybe that could make some good patient advocates.
• What are the next-generation stem cell therapies? What are companies working on that might impact CCI care, and how far out is that?

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:

What is a stem cell?

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.

YGLT

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.

Where did they come from?

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:

https://preview.redd.it/sbls4mcs6j8h1.png?width=850&format=png&auto=webp&s=7b5c34edc7b83ab78508137757d31fbe46079f49

And don't forget, it also stores some for later. All from a single cell which is pretty incredible.

https://preview.redd.it/f4scrlm0qi8h1.png?width=1149&format=png&auto=webp&s=240f0aff0243723a7e09458cbd1b5e329ccde533

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".

How does this tie into the potential next generation of stem cell therapies?

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.

https://regmedfoundation.org/2025/09/09/worlds-first-spinal-cord-transplant-to-take-place-in-israel-could-allow-patients-to-walk-again/

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:

https://preview.redd.it/zvr8ui2z6j8h1.png?width=548&format=png&auto=webp&s=b7440432fb4a24fd956f4a6a42f099232b7acd6b

How could this impact CCI?

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.

Is there something between today's bone marrow concentrate and iPSCs that could help CCI?

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!

I try not to relay too much unimportant/unproven info here, mostly out of the fear of giving false hope or confusion, so I want to be clear that this is pretty much nothing, just found it interesting/surprising that we're being represented outside of our tiny CCI bubble.

If you haven't heard about MUSE cells, it's essentially a subset of mesenchymal stem cells, around 2% of those are MUSE cells. If you want to read about them, here's a cool article on this longevity magazine:

https://longevity.technology/news/can-muse-cells-overcome-limits-of-traditional-stem-cell-therapies/

Mesenchymal stem cells (MSCs) have shown promise, but their benefits are likely overstated. Interestingly, both Duke and Mayo Clinic have run placebo/highly controlled studies on MSCs, and both found almost no benefit over control/placebo. I can't help but think that's why the private industry won't do them... but that's a story for another day.

They also have some limitations, especially when using plain bone marrow concentrate:

1 - A very small percentage get past the lungs when administered IV, or so it appears. Though there is some research showing maybe they do, or maybe when they get trapped they release healing goodies into the bloodstream which get carried to the damaged tissues (this is called paracrine signaling)

2 - Bone marrow has a tiny, tiny amount of MSCs. Peer reviewed literature states around .001-.01%, so if you got a TNCC (total nucleated cell count, basically how many cells were in my bone marrow draw) of 1 billion, it'd be about 10-100K.

Plus, the older you get, the less of those you have, and the less functional those MSCs become (this is called senescence, basically cell aging). Those cells have also taken in all the same toxins, stress, and everything else you have over time, though I don't think there's a true head-to-head showing whether these factors matter or not. It should be noted that bone marrow also has other helpful stuff beyond MSCs too, but I'd imagine unhealthy patients have unhealthy MSCs, and that likely affects how/if it works.

3 - MSCs' natural role is in generating/repairing musculoskeletal tissue (bone, muscle, cartilage, tendon, ligament, fat). It's how you got those tissues in the first place. They do show promise for giving good "soil," so to speak, to help nerves heal themselves, and they're FDA-approved for an autoimmune condition (graft vs host disease) and are showing some decent, but sometimes marginal, repair of many other conditions. Still entirely unproven outside of that autoimmune condition, yet making so much money, which baffles me.

There's a lot of industry buzz about umbilical cord stem cells, because they're exactly 0 years old, and the cord is much richer in MSCs. Typical dose is usually in the 10s of millions, as opposed to 10s of thousands/100thousands. If you want more, you just purchase more cord, and you can skip the bone marrow aspiration. Many companies are moving toward off-the-shelf therapies like this. However, there are a lot of questions about cell viability, logistics, the cord donor, sterility, etc. That's a whole nother topic.

MUSE cells appear to be a bit different. It's funny, I was just griping about them hours before I watched the webinar. I still have a ton of gripes, and for every point below, there's a counterpoint and more questions, but I have to say it's at least interesting, and I also think it's going to turn into an even uglier patient environment soon. Also, another topic.

They appear, in the lab, to be able to repair any tissue, including musculoskeletal tissue. This feature is called "pluripotent", whereas MSCs, are "multipotent" being that they can only generate a handful of tissues.

Embryonic stem cells are also pluripotent, as the embryo will eventually give rise to all of the body's tissues, but there are ethical concerns. About 20 years ago, Japanese researchers figured out how to take adult skin cells and reverse them back into pluripotent stem cells, and those cells can turn into any tissue in the body, which are called induced pluripotent stem cells, or iPSCs. They won the nobel prize, and the first iPSC therapy just got approved in Japan a couple of months ago. However, they cost around $500K-$1M+ per dose, and can potentially form tumors.

So, if MUSE cells could potentially do some of this, it could be a good breakthrough, but that's many years away if at all.

Anyways, they are also much smaller, and "slipperier" than MSCs, so they may get past the lungs when administered IV. There are also some companies studying their use as a nasal spray to get into the brain; they do this by traveling up the cribriform plate (the nerve at the top of your sinus) to the brain/brainstem, potentially.

https://preview.redd.it/4e75qvbg038h1.png?width=957&format=png&auto=webp&s=f8746af7c6f2879e8982cc099e940c91809c1ea1

This goes without saying, administering an experimental product into your brain (or elsewhere) is incredibly risky and I would advise you to do none of this, just informing people that it is happening.

I'm waiting on a recording of the webinar, hopefully they send it, but I was able to grab some key info and snapshots.

It appears there are a ton of "fake" MUSE cells out there, and only one is connected to the person who discovered them, called MUSE cell innovations.

That company appears to be using a registry to collect their treatment outcomes as those cells are used, which is awesome, and they have a few studies in the pipeline. They also just applied for what's called RMAT designation to the FDA. In short, the FDA gives out a few special "fast track" type of designations for regenerative therapies that show some promise so they can maybe hit the market/get through studies faster. Think the RMAT application is for stroke.

Believe they're doing some orthopedic studies too, backed by some in vitro (done in the lab, not in a human) studies that seemed to help regenerate cartilage.

Lastly, they presented a handful of cases from patients, one of which was for cervical instability, which caught me off guard. It was mostly physicians in the audience, I don't think any of them including the presenter knew anything about CCI 🫠 but it was cool to see. It doesn't mean anything, it's a 1 person anecdote at best, but it's being used... somewhere for our condition.

That patient allegedly has severe CCI/AAI, failed MSC therapy (though it's not clear if it was PICL, posteriors, or something else), did MUSE cells, and said this:

https://preview.redd.it/ogivu47c138h1.png?width=845&format=png&auto=webp&s=ab0f818bede64d50ad3fb242cbfa3be471b72cc5

They also showed some of their scans, though it wasn't totally clear what we were looking at or what was done, it was sort of a sidenote but I thought I'd share anyways:

https://preview.redd.it/mhbd9q8e138h1.png?width=1699&format=png&auto=webp&s=78faa613293f939f022eb10aeaa989899804f06a

https://preview.redd.it/gm7zadag138h1.png?width=1595&format=png&auto=webp&s=ed4649dabb947ab0a76c97e387ebdce14b424fb2

I have had conversations with a guy who thinks he knows who the patient was. Waiting on that patient to get back to me for more details, I'll let you guys know if I hear anything else. Again, could be nothing/placebo, so don't get your hopes up please.

It seems that MUSE cells are available in the USA now under the new Georgia, Florida, Utah, and other state laws that are allowing umbilical cord MSC therapies, though it's unclear if that will be contested by the FDA or not, as it's still likely federally illegal.

They're also insanely expensive, and even less "proven" than BMAC or other MSCs, but maybe in the future we'll get some good data. I'm pretty curious if it goes anywere.

Again, not medical advice, don't do any experimental therapy BMAC, MUSE, or others, without talking to your doctor first. Also please note, the MSC space can be very scammy/dangerous, so be very careful out there. I know many patients are being talked into going to Mexico or Costa Rica for some of this stuff. You do so at your own risk....

https://www.billtrack50.com/billdetail/1970155

https://www.billtrack50.com/billdetail/1970155

Pretty interesting. Now Utah, Florida, Georgia, Tennessee, potentially others are allowing umbilical-derived mesenchymal stem cells.

I just found this video on Youtube, pretty cool.

It's in German, between two CCI patients. One went to Colorado, the other went to Budapest (Dr. Agnes Stogicza), they shared their experiences, but the core topic was around the interviewee's experience in Budapest so it leaned heavily towards that content-wise.

https://www.youtube.com/watch?v=mrNa6eOgayA

Somebody translated my interview with Dr. Stogicza into German (seen here), people loved it, and I thought I'd do it in kind. I used Chat GPT so I hope it's accurate, though I can't confirm. Also sorry, formatting is wonky, context window is super long. YouTube can also subtitle in English, but it gets rough.

To summarize, it sounds like he trusted Dr. Stogicza, had a good experience with the clinic, found some improvement, and is considering going back for another round.

To compare costs, the patient who went to Colorado spent about 25K euros for 1 treatment (travel, food, hotel, procedure) and the Budapest patient spent about 7K euros. Think it should be noted that for European CCI patients, it's a tough ask to get on multiple international flights, 8 hour jet lag, then go through immigration, figure out transportation, etc. in addition to the wild US healthcare costs. Great to see them at least have a small shot back home.

I don't think they did a deep dive into his symptom improvements, and he repeatedly said it's difficult to quantify his progress with percentages which I also agree with. Most of the discussion focused on the clinic, the procedure, and the overall experience. He was honest about the good/bad too which is great.

That said, he did say, assuming the translation is accurate, that the treatment gave him some improvement, "hope," and "additional quality of life." I don't use instagram but he said people can reach out to him:

https://www.instagram.com/ronald_0111/

If anybody does, let me know. Would be interested to check in on him later in the year, since it's only been 4 months.

The Colorado patient also mentioned that if he pursues another treatment, he may choose Dr. Stogicza over Colorado, largely because of the significant cost difference. I think if you are wealthy, and in the USA, between the two I'd lean towards Colorado personally. However for most, 2-4x $15K is simply not possible. If you're american and considering going to Hungary, maybe this video gives some perspective. I'd also say Europe can be quite the culture shock, especially Eastern Europe. Not as much as South America or Asia, but still very different than our bubble 😎.

Still would like to see a sham-controlled trial and more info, but it sounds like we're improving piece by piece. Someone just sent me a post by a physician with CCI who went to stogicza and says they've gone from bedridden to back at work:

https://preview.redd.it/k6g5hoici54h1.png?width=573&format=png&auto=webp&s=06f237358d2136143f7a000b24bfd791b3c515a0

Without further ado, here's the translated transcript:

Part 1:

Pascal: Hello and welcome to this video. Today we want to talk about regenerative treatment methods for craniocervical instability, or CCI for short, meaning instability of the upper cervical spine and craniovertebral junction.

More specifically, we're going to discuss transoral regenerative treatments.

We want to talk about the PICL procedure offered at the Centeno-Schultz Clinic in Colorado, USA, where I was treated.

My name is Pascal. I'm 45 years old and I have CCI and ME/CFS.

On the other side, we want to talk about a similar treatment that is now offered in Budapest, Hungary, by Dr. Agnes Stogicsa. Ronald has undergone that treatment, and he's joining me today.

Hello Ronald.

Ronald: Hello Pascal.

Pascal: First of all, I think it's wonderful that you're taking the time and energy to do this with us today. Like me, you have CCI and ME/CFS, and I know that screen exposure is especially difficult for you. So thank you very much for investing the energy to be here.

Ronald: You're very welcome.

Pascal: Before we begin, everyone already saw the disclaimer at the beginning, but we want to repeat it because it's important.

This is absolutely not a treatment recommendation.

We do not have the technical or medical expertise to precisely explain the differences between these clinics.

That's why I've linked an interview with Dr. Agnes Stogicsa in the description. In that interview she explains what she does, the techniques she uses, and details of her treatment approach.

Everything about how things are done medically and technically at the Centeno-Schultz Clinic can be found on their website, which I'll also link.

This is purely an exchange of patient experiences.

We're not here to say one clinic is better than another.

We simply hope this conversation can help people who are affected by this illness find a bit of orientation, because we know ourselves how complicated this journey can be.

Ronald, let's start with you.

Tell us a little about yourself. How did CCI first become an issue for you?

Ronald: I think CCI first became an issue for me a very long time ago.

Like many people, it started with symptoms that I couldn't explain.

You go from doctor to doctor, MRI to CT scan to X-ray, because at some point you begin to suspect the cervical spine.

For me, this started in 2015.

I had a motorcycle accident.

I wasn't wearing a helmet and landed directly on the back of my head.

Not long afterward, I developed constant brain fog.

I had neck pain.

I kept going to doctors.

I tried to ignore it as best I could because every doctor told me nothing was wrong.

When every MRI comes back normal, you start thinking that if something serious were wrong, the doctors would have found it.

Pascal: The classic story.

Ronald: Exactly.

So I tried to ignore it.

I kept going to the gym.

But every time I trained, no matter what muscle group I worked, I would end up with severe neck tension.

The brain fog would get worse.

I felt pain radiating from my neck into my head.

The classic pattern that many people describe: pain traveling from the back of the neck up into the forehead.

I never had migraines before.

That was never really a consideration.

I drank enough water.

I exercised.

All the usual explanations doctors give didn't really apply.

Pascal: "Do you drink enough water?" "Maybe too much alcohol?"

Ronald: Exactly. I heard all of those things.

 

 

Part 2

Pascal: You also did prolotherapy, right? I think you went to Dr. Castriotis?

Ronald: Exactly.

At some point I reached the stage where I realized manual therapies weren't helping me anymore.

I had dizziness. I had severe brain fog.

Eventually things got so bad that I felt I couldn't continue living with the symptoms the way they were.

I started having very strong near-fainting sensations.

I'd be standing in the kitchen, look down briefly, and feel like I was about to pass out.

That's when I began researching much more intensely.

I spent countless hours at my computer reading patient experiences and reports from other people with similar problems.

That's actually how I came across you.

Pascal: Right. That's how we met.

Ronald: I simply messaged you.

I did that with many people because I was desperate.

Doctors couldn't help.

Chiropractors couldn't help.

Maybe another patient had some idea.

Eventually I came across prolotherapy.

I underwent treatment in the summer of 2024.

I had five sessions.

Each session involved four injections into the back of the cervical spine.

They used PRP from my own blood and glucose.

I don't remember the exact concentration.

I did notice some improvement, but it took time.

First there was the expected worsening.

The tissue is intentionally irritated to stimulate healing.

Pascal: Right. The goal is to trigger inflammatory and repair processes.

Ronald: Exactly.

I had a very intense initial worsening.

For three months after the fifth treatment I honestly felt like I was going to have a stroke.

The pressure in my head was so severe that it felt as if something was going to burst.

I stayed in contact with Dr. Castriotis.

One thing I really appreciated was that he usually replied within a day.

Considering how many patients he has, I thought that was impressive.

It made me feel supported.

Every trip there cost me about three and a half hours each way.

Pascal: And you weren't driving yourself.

Ronald: Exactly. I can't drive myself.

After about three months things finally started improving.

You really have to trust the process.

Dr. Castriotis repeatedly told me that the worsening phase is normal.

Different people experience different symptoms.

Some get more headaches.

For me, the near-fainting sensations became much worse.

The head pressure became much worse.

Everyone reacts differently.

But after three to four months the fainting sensations disappeared.

Those were among my worst symptoms.

I was extremely grateful for that improvement.

Pascal: I remember there was a period when you spent a very long time in bed.

You also had those episodes with one-sided numbness and weakness.

We spent a lot of time trying to figure out where that was coming from.

You even went to the university hospital in Cologne and they basically sent you home again.

You've really been through everything imaginable.

You've tried a lot of different approaches.

That's important context before we talk about PICL and related procedures.

And I also want to clear up a common misconception.

Some people think prolotherapy can reach the upper cervical ligaments directly.

Anatomically that's simply not possible.

The procedures in Colorado and Budapest are performed through the mouth while the patient is under anesthesia because those ligaments can't be safely reached from the back.

The brainstem is in the way.

So you've already been through a long medical odyssey.

How did you eventually end up considering Budapest?

Ronald: That's the interesting part.

There aren't many patient reports about Budapest.

You can find Google reviews, of course.

But what people really want are reports from actual patients.

Did it help them or not?

That was the important question for me.

Pascal: Which is exactly why we're having this conversation.

So you can share your experience.

Ronald: Exactly.

I hope it helps people who feel lost and are wondering:

"What treatment should I choose?"

"What should I do next?"

Maybe prolotherapy is the next step.

Maybe traveling abroad is the next step.

Pascal: And Budapest is especially interesting because Colorado is such a difficult trip.

Many patients physically can't manage it.

I personally debated it twenty times before finally forcing myself onto the plane.

Then there are financial considerations as well.

The Centeno-Schultz treatment costs significantly more than Budapest.

That's one reason Budapest has become such an attractive option for European CCI patients.

Ronald: Absolutely.

At first I considered another round of prolotherapy with Dr. Castriotis.

But then I thought about my ME/CFS.

I had prolotherapy in summer 2024.

Things gradually improved through winter.

Then around New Year's 2024-2025 I experienced an enormous crash.

My condition deteriorated dramatically.

Before that I could still do small activities.

I could drive short distances.

I could go grocery shopping if I wasn't carrying heavy items.

I could shower myself.

After the crash those things were no longer possible.

For four months I lay in a dark room.

I couldn't tolerate screens.

I couldn't tolerate noise.

The highlight of my day was sometimes putting on headphones for an hour to listen to a podcast.

Because of that, my treatment decisions became limited.

I knew I probably couldn't manage five separate trips to Dr. Castriotis anymore.

Each trip was seven hours of travel.

If every trip caused another crash and I had to go back again the following week, it just wasn't realistic.

That's when Budapest came back into my mind.

I remembered someone I had met in Dr. Castriotis' waiting room.

He had gone to Budapest.

He spoke very positively about it.

He thought Dr. Stogicsa was very competent.

He said he felt safe during the procedure.

Then I started thinking:

A flight to Budapest is only about an hour.

It's actually faster than traveling to Saarbrücken.

And instead of multiple trips, you get everything done at once.

You get the whole treatment package.

People hope that posterior injections can compensate somewhat for instability, but the transoral approach can directly reach structures that can't be accessed from behind.

So I thought:

With a wheelchair and a good friend helping me, maybe I can manage this.

That's how the idea became serious.

Part 3

Ronald: Before going, I had an online consultation with Dr. Stogicsa.

She reviewed all of my imaging beforehand.

She measured things on the images and showed me specific findings.

She pointed out areas where she thought treatment might potentially help.

She said it could be worth trying.

Pascal: That's interesting because Dr. Centeno has publicly expressed skepticism about Dr. Stogicsa's procedure.

There has been debate about whether what is done in Budapest should even be called a PICL.

The Budapest clinic uses the term PICL or PIC.

Dr. Centeno has stated that it is not the same thing as their PICL procedure.

We obviously can't settle that debate here.

But I'm curious:

When you first considered Budapest, did those criticisms make you skeptical?

Or did you simply decide to speak with her yourself and make your own judgment?

Ronald: I was definitely cautious.

These injections aren't trivial.

Even though they're "just injections," they take place in a very sensitive area.

A lot can potentially go wrong.

You want to be in the best possible hands.

Centeno had far more patient reports available.

That definitely gave me confidence in his experience.

But ultimately, I'll be completely honest:

For me it became a financial question.

In the Facebook groups I saw many patients discussing multiple treatments.

I couldn't think of anyone who said they had one treatment and immediately returned to perfect health.

And a treatment at Centeno's clinic costs a lot of money.

Pascal: We can be transparent about costs.

I think that's important.

Ronald: At the time, a PICL at Centeno's clinic cost around $15,000 if they performed the full treatment.

There are some variations depending on what exactly is done.

But roughly $15,000.

That is a huge difference compared to Budapest.

At Budapest I was quoted €4,000 for a transoral PRP-only procedure.

If I wanted stem cells from bone marrow as well, it was €6,000.

Pascal: Bone marrow concentrate.

BMC.

Ronald: Exactly.

Then I asked myself:

What happens if I spend all my savings on Colorado and only improve 20% or 30%?

What if I need another treatment later?

My savings would be largely gone.

That's why I started looking seriously at alternatives.

On Reddit I found reports from people who had gone to Dr. Stogicsa.

Some said it helped.

Some said it didn't.

That's normal.

This entire field is still experimental regenerative medicine.

There is always the possibility that nothing happens.

There is even the possibility of worsening.

Dr. Stogicsa was very transparent about that.

She specifically told me:

"I don't have clinical studies I can show you."

She had patient experiences.

But she acknowledged the limitations.

She hasn't been performing these procedures for nearly as long as Centeno.

However, she is collecting data.

Before treatment I filled out questionnaires about my symptoms and history.

Patients provide updates every three months afterward.

At least that creates some form of follow-up data.

One thing Centeno has is sheer volume.

He has treated enough people that there are countless reports throughout Facebook groups and forums.

That was something Dr. Stogicsa simply didn't have yet.

Pascal: She doesn't yet have the same critical mass of patients.

Ronald: Exactly.

Still, I found reports on Reddit.

One patient had even uploaded his treatment report.

Everything looked reasonable.

And importantly, the €6,000 package included a lot.

The posterior facet joints were treated.

Transorally she treated everything she could safely reach.

If I remember correctly, she even injected down toward the upper thoracic spine.

Possibly as far as T2.

And all of that was included in the price.

At that point I thought:

If someone had died from this procedure, I would probably have heard about it somewhere.

That's a blunt way of saying it, but that's how I thought.

The worst realistic outcome seemed to be that it simply wouldn't help.

And because I had already responded somewhat to prolotherapy and PRP, I thought it was worth trying.

Pascal: One difference may be that Dr. Stogicsa combines PRP, PPP, and bone marrow concentrate.

Centeno used only BMC in my case.

Ronald: Exactly.

That was actually new information for me too.

I received three components:

• PRP (platelet-rich plasma)
• PPP (platelet-poor plasma)
• BMC (bone marrow concentrate)

I don't know exactly why each component was used.

I'm not a physician.

But that's what I received.

Pascal: To summarize:

Everything in this field remains experimental.

There are no guarantees.

Some people have undergone four or five PICLs with Centeno and still haven't achieved major improvement.

When outcomes are uncertain, safety becomes the most important issue.

Transoral procedures carry risks.

There can be infections.

There can be serious complications.

You need to trust the person performing the procedure.

And it sounds like Dr. Stogicsa gave you that confidence.

Ronald: Yes.

She reviewed all my images.

She explained her findings.

She discussed realistic expectations.

She recommended rest afterward and avoiding heavy lifting.

She told me that if I experienced a 30% improvement, that would already be considered a very good outcome.

She also emphasized that it might be less than that.

Or I might feel nothing at all.

Some patients feel nothing after their first procedure and only improve after a second one.

Everyone responds differently.

I genuinely felt that she knew what she was talking about.

She came across as knowledgeable and empathetic.

I trusted her.

 

 

Part 4

Pascal: Ultimately, trust is the deciding factor. Whenever we undergo a medical procedure, whether it's a broken leg or something much more complicated, we're putting our trust in professionals.

People can also verify Dr. Stogicsa's background. You can see where she trained, where she worked, and that she spent time observing Dr. Centeno's procedures years ago.

At least on paper, she has a solid medical background.

Then there's the personal side of it, how she makes patients feel.

Transparency is important.

Not making unrealistic promises is important.

And it sounds like that's exactly how she approached things with you.

Ronald: Yes.

That was extremely important to me.

I've met doctors, chiropractors, and practitioners before who basically said, "We'll do this treatment and then you'll be fine."

Those kinds of promises actually scare me now.

Pascal: Because nobody can guarantee that.

Making promises in this field is simply not professional.

Especially because responses vary so much.

For context, after my first PICL in Colorado I experienced roughly a 30 to 40 percent improvement.

But when you include travel, accommodations, a companion, the DMX imaging, and everything else, the total cost ended up around €25,000.

How much did the Budapest trip cost you altogether?

Ronald: First, how long were you in Colorado?

Pascal: One week.

I flew in Sunday.

Monday was a rest day.

Tuesday I had the DMX imaging.

Wednesday I had the procedure.

Then I intentionally stayed a few more days before flying home.

Ronald: I handled Budapest very differently.

I basically turned it into a quick mission.

Because of my wheelchair situation and my health, I mostly planned around flight schedules.

I was actually more worried about the travel than the procedure itself.

I kept thinking:

"What if I crash badly while I'm there?"

"What if I end up like I did after New Year's?"

In that situation I couldn't even sit upright.

So I planned everything around worst-case scenarios.

I flew out on Wednesday.

Had the procedure on Thursday.

And returned on Friday.

Pascal: Wow.

Ronald: Before the procedure they required blood work.

They wanted certain laboratory values checked to make sure everything was suitable.

I had that done in Germany within a week before traveling.

Everything was fine.

Including the costs for the friend who accompanied me, I spent less than €7,000 total.

Pascal: That's less than a third of what I spent.

Ronald: Flights from Germany to Budapest were inexpensive.

I even purchased flexible tickets so I could change my return flight if necessary.

I thought through every possible scenario.

This wasn't a casual decision.

I spent a lot of time planning for worst-case outcomes.

Pascal: That's important.

People sometimes underestimate how much thought goes into these decisions.

Many patients want to go to Colorado because of the clinic's experience and reputation.

But financially, physically, and logistically there are major barriers.

The flexibility of Budapest can make a huge difference.

If your health suddenly worsens, changing a Budapest flight is very different from changing an international flight from Denver.

Pascal: Could you have flown home the next day if necessary?

Ronald: No.

And that brings us to recovery.

Everyone reacts differently.

Pascal: In Colorado, after the DMX showed severe instability in multiple areas, they decided to do a very extensive treatment.

Instead of the usual number of injections, I ended up with around 24 injection sites.

They treated multiple facet joints and extended treatment into the upper thoracic spine.

I suffered tremendously afterward.

Some people eat ice cream afterward and are completely fine.

I was not one of those people.

I couldn't move for three days without severe pain.

The opioid pain medications barely helped.

I was taking oxycodone constantly.

It upset my stomach.

I kept vomiting.

Which was especially unpleasant with fresh wounds in my throat.

Those were honestly the worst three days of my life.

That's why I was grateful for the recovery buffer I built into my schedule.

Ronald: My experience was very different.

When I woke up, my neck was extremely stiff.

Swallowing was extremely painful.

A nurse brought me a glass of water.

I probably spent an hour slowly sipping it through a straw.

After the procedure they monitored me for about 90 minutes.

I received IV fluids and electrolytes.

Once everything looked okay, I was discharged.

I didn't receive opioids.

I was prescribed paracetamol and told I could receive tramadol if needed.

I only needed one tramadol tablet.

The throat pain was intense.

I've never had my tonsils removed, but I imagine it felt something like that.

Every swallow hurt.

Even swallowing saliva hurt.

But that only lasted about two days.

My neck was very stiff, but overall the recovery was manageable.

Compared to your experience, it was relatively mild.

Pascal: Before we talk more about recovery, let's go back to the actual logistics.

You contacted Dr. Stogicsa.

You had a consultation.

She reviewed your imaging.

You got an appointment.

Then you arrived in Budapest.

Walk us through what happened once you got there.

Ronald: I was offered several possible appointment dates so I could choose whichever worked best for flights.

That flexibility was nice.

When I arrived at the clinic, one thing immediately stood out.

In Hungary, not everyone speaks English fluently.

That was noticeable even with taxi drivers.

Dr. Stogicsa herself speaks fluent English.

That's what matters most.

But then something funny happened.

A man approached me and said:

"Hello, I'm your anesthesiologist today. I think my German is pretty good because I also live in Germany."

Honestly, that immediately made me feel much more relaxed.

Pascal: I can imagine.

Ronald: Then he told me something even funnier.

He said:

"After your procedure, I'm having surgery myself. I have a problem with a disc. So maybe we'll see each other in recovery."

That was surreal.

But oddly reassuring.

Here was a doctor who trusted the clinic enough to undergo surgery there himself.

That gave me confidence.

Pascal: That makes sense.

When you're already nervous, little things like that matter.

Part 5

Pascal: So after arriving at the clinic, what happened next?

Ronald: First there was preparation.

The anesthesiologist put me at ease.

Then I was taken in for the bone marrow collection.

I was put under anesthesia.

Bone marrow was harvested for the BMC preparation.

Afterward I was moved to another room.

There they drew about 60 mL of blood to prepare the PRP and PPP.

While I was waiting, Dr. Stogicsa came in and explained what they were doing.

She told me they were preparing the stem cells, preparing the blood products, and getting everything ready.

She explained the procedure and approximately how long it would take.

To be honest, I don't remember all the details because I was nervous.

Pascal: Before the procedure, did they perform additional imaging?

In Colorado they did a DMX before deciding exactly what to treat.

Ronald: No new imaging was required in my case.

I had already provided:

• A 3D cone beam CT
• A CT angiogram
• Upright MRI studies

Dr. Stogicsa said those were sufficient.

However, they do have imaging equipment on site.

They can take X-rays if needed.

I can't speak in detail about the technical side because I didn't undergo imaging there.

But from what I've seen, they can obtain dynamic images somewhat similar to what people know from Sandberg-style imaging.

Pascal: That's important because many people assume they need every possible imaging study beforehand.

Ronald: Exactly.

And interestingly, another patient who was there on the same day did have imaging performed locally.

He later showed me the images.

They included views with the mouth open and positional imaging with head movements.

Again, I'm not qualified to compare it directly with DMX, but they clearly have ways of evaluating patients on site if needed.

Pascal: Another thing that's important is that imaging doesn't always perfectly predict symptoms.

Some people have severe-looking instability and few symptoms.

Others have relatively mild measurements and severe disability.

Even surgeons often talk about treating the patient rather than just the images.

Ronald: Exactly.

My atlas specialist in Cologne says the same thing.

Some patients have dramatic imaging abnormalities and barely notice anything.

Others have relatively small abnormalities and are extremely symptomatic.

Everyone is different.

Pascal: How would you describe the overall atmosphere at the clinic?

Ronald: Honestly, everyone was very friendly.

You wait in the reception area.

Then you're brought into the treatment area.

My friend stayed outside while I went through the preparation process.

The nurses were very kind.

Most of them didn't speak fluent English, but that wasn't a problem.

You could tell they cared.

They smiled.

They checked on me.

They made me feel comfortable.

Those little things matter when you're nervous.

The reception staff were friendly.

The doctors were approachable.

Overall, it was a positive atmosphere.

Pascal: Did the clinic feel modern?

Ronald: It wasn't the newest building I've ever seen.

But honestly, that didn't concern me.

A shiny building doesn't tell you much about medical quality.

What matters is the people and the equipment.

I don't know exactly what systems Dr. Stogicsa uses to prepare PRP or BMC, so I can't comment on that.

Pascal: One thing that differs from Colorado is that they didn't provide you with a stem cell count afterward, correct?

Ronald: Correct.

They didn't give me a stem cell count.

Pascal: In Colorado they gave me a detailed report with cell counts and various measurements.

Ronald: I do remember one funny moment.

When I woke up after the procedure, a nurse came over and showed me some of the numbers from my processing results.

She said something like:

"If I were you, I'd frame that and hang it above my bed."

Apparently she thought the numbers looked very good.

I had no idea what they meant.

I just laughed.

Pascal: Fair enough.

So let's move to the actual procedure itself.

You had the bone marrow collected.

You had blood drawn.

How much time passed before everything was injected?

Ronald: Not very long.

I arrived around six in the morning.

There was another patient ahead of me.

The timing isn't crystal clear in my memory because I didn't have a watch and I was focused on the procedure.

But roughly speaking:

• Bone marrow collection
• Blood draw
• Waiting period while everything was processed

Then about one-and-a-half to two hours later I underwent the injections.

I never had to leave the clinic.

I stayed there the whole time.

Pascal: Those waiting periods are when you start questioning all your life decisions.

Ronald: (laughs)

Maybe a little.

But honestly I mostly felt relieved.

I had finally made a decision.

I was finally doing something.

I couldn't control the outcome, but I knew I wouldn't have to wonder forever whether I should have tried it.

That gave me peace of mind.

Pascal: I completely understand that.

When you're suffering every day, taking action itself can feel meaningful.

Ronald: Exactly.

At some point you're living with symptoms every single day.

You want to know that you've at least tried.

And if you trust the physician and feel you're in good hands, that matters a lot.

I don't spend money easily.

But when I genuinely believe someone is trying to help me and knows what they're are doing, then it feels worthwhile.

Pascal: That's a good point.

The most important thing in an experimental treatment is often whether you feel safe and respected throughout the process.

And from everything you've described, it sounds like that was your experience.

Part 6 (Final Section)

Pascal: So now we're recording this on May 10th. Your procedure was January 8th, correct?

Ronald: Correct.

January 8th of this year.

So we're about four months out now.

Pascal: How are you doing?

Has anything changed?

Ronald: That's actually a difficult question because when you're dealing with chronic illness, you're constantly analyzing every symptom.

One thing I noticed immediately after the treatment was that any small physical exertion caused my entire neck to tighten up dramatically.

I already had some of that before.

But after the procedure it became much more intense.

Even small activities would trigger pulling sensations through my neck and up into my head.

It really felt like something was actively healing or being irritated.

Over the following months that gradually improved.

In the beginning, even lifting a small piece of firewood would cause the whole side of my neck to tighten up.

Pascal: I remember you mentioning that.

Maybe we should explain why you're carrying firewood.

Ronald: (laughs)

I have a fireplace in my room.

When my parents aren't home, I still try to maintain some independence.

If I'm having a decent day, I might cook something or start a small fire myself.

I'm not carrying huge logs.

Just little pieces.

Pascal: Fair enough.

Those everyday activities are actually useful markers because they let you compare what you could do before and after treatment.

Did you experience any setbacks?

Any surprises?

Anything particularly positive?

Ronald: I would describe the beginning mostly as a classic initial worsening.

Fortunately I had already experienced that after prolotherapy, so I didn't panic.

The more you obsess over every symptom, the worse everything feels.

I'm not saying the symptoms are psychological.

They're very real.

But if you're constantly monitoring every sensation, you'll notice every little thing.

One interesting thing was that some of my numbness symptoms briefly returned.

Pascal: Really?

Ronald: Yes.

The numbness and strange sensations came back temporarily.

But now, several weeks later, I haven't had those symptoms for a while.

So that was encouraging.

Pascal: That's great.

Even small improvements mean a lot when you've been sick this long.

Healthy people would probably call an ambulance for some of the symptoms we live with every day.

You eventually learn to organize your life around them.

Ronald: Exactly.

And to give people context:

My daily life still isn't normal.

I still spend 80 to 90 percent of my time lying down.

Sunny days are nice because at least I can lie outside.

But I still don't do my own grocery shopping.

I don't drive.

Those things remain too exhausting.

That's actually why I'm considering a second trip to Budapest.

When I'm a passenger in a car, I can still feel that my neck isn't completely stable.

Depending on the road surface, I notice it.

So I'm thinking seriously about doing a second treatment.

Pascal: That's interesting because I was just thinking that a second trip to Colorado is financially unrealistic for me.

If I ever do another procedure, maybe I'll end up in Budapest too.

Maybe we'll fly there together.

Ronald: Sure.

Maybe we can get a group discount.

Maybe one of the viewers wants to come too.

We'll make it a CCI class trip to Budapest.

Pascal: (laughs)

Despite everything, Budapest is a beautiful city.

Though you obviously didn't go there for tourism.

Ronald: Not at all.

Before or after the procedure, sightseeing wasn't even remotely possible.

Walking is still very limited for me.

If I overdo it, I trigger post-exertional malaise or a crash.

And after experiencing a severe four-month crash, I don't want to repeat that.

Pascal: That's probably one of the hardest things about ME/CFS.

Sometimes doing nothing is the most difficult thing.

People constantly tell you to exercise more.

But restraint is often the hardest part.

Advice for Other Patients

Pascal: If someone watching is considering Budapest, is there anything you'd tell them?

Anything they should definitely do or definitely avoid?

Ronald: One practical thing:

We originally planned to rent a car.

That fell through.

In the end we used taxis and ride services everywhere and it worked perfectly.

So a rental car probably isn't necessary.

As for medical advice, I'd simply say:

Trust your instincts.

Pay attention to how you feel about the doctor and clinic.

Not everyone speaks English fluently in Hungary, so that's worth knowing beforehand.

But nowadays everyone has a translation app in their pocket.

We managed fine.

What Budapest Meant to Him

Pascal: Final question.

What did Budapest give you?

Physically and emotionally?

Ronald: Emotionally, it was surprisingly positive.

This may sound strange because I was there for a serious medical procedure.

But it almost felt like a small vacation.

I hadn't been on a plane in years.

I got to spend time with a good friend.

We stayed overnight together.

He even slept on the couch so I could have the bedroom.

Everything just went smoothly.

When I think back on it now, it's a positive memory.

Nothing went wrong.

Maybe I'd feel differently if I'd had the kind of recovery you experienced in Colorado.

But for me, it was a good experience.

Pascal: If viewers have questions, can they contact you?

Ronald: Absolutely.

You can link my Instagram.

People are welcome to message me.

I may not always answer immediately because of my health, but I'll usually respond eventually.

Pascal: That's great.

People can also comment below the video.

And if they have questions about Colorado, they can ask me too.

So looking back, would you say Budapest gave you hope?

Ronald: Yes.

Hope, and some additional quality of life.

I don't have to worry quite as much about every neck movement causing days of worsening symptoms.

I still separate my symptoms mentally into two categories:

• ME/CFS symptoms
• Upper cervical symptoms

And I can usually tell which is which.

Four months later, I genuinely feel somewhat better.

Whether that's 30 percent improvement?

I don't know.

I always struggle with percentages.

But every improvement matters.

Even small milestones matter.

And I'm grateful for every bit of progress.

Pascal: That's actually a beautiful way to end this.

For me it was PICL in Colorado.

For you it was treatment in Budapest.

Whatever differences exist between them, both of us are at least sitting here having this conversation.

A few months ago that wouldn't necessarily have been possible.

Ronald, thank you very much for sharing your experience and your energy.

I know exactly what it cost you to sit here and do this.

I genuinely hope this helps people who are trying to navigate these decisions.

This isn't an advertisement.

It's not a recommendation.

It's simply two patients sharing their experiences.

And I found your perspective very honest and very open.

Thank you.

Ronald: You're welcome.

I hope it helps someone.

Ultimately everyone has to make their own decision.

Just because it helped us doesn't mean it will help everyone.

That's the reality of regenerative medicine.

But hopefully our conversation can help someone feel a little less lost.

Pascal: I agree.

Thank you, Ronald.

And to everyone watching, I hope you're having as stable a day as possible.

All the important links are in the description, including our Instagram accounts.

Take care.

Goodbye.

Ronald: Goodbye.