Search For A Cure: The True Stories Behind Infusio’s Beverly Hills Stem Cell Start-Up
This post is going to be different than what I usually write, and that’s because I set out to do some investigative reporting. Last year I began hearing some chatter in the Lyme Disease Community amongst patients who went to Infusio and suddenly became stranded because the clinic abruptly shut its doors in Beverly Hills. All of a sudden these patients had no one to call or get help from after they received stem cell treatment because the clinic simply vanished. This happened quickly and caught a lot of people off-guard, including myself. I was following Infusio on Instagram because they were very active on the platform detailing patients success. And then poof, one day in April 2019 they stopped posting. This seems to be around the time Infusio fell off the map and the problems began.
I set out to investigate Infusio more deeply. I wanted to understand where they came from, and more specifically how they managed to collect millions of dollars from Lyme patients and then suddenly disappear. How is this even possible? Could this happen to other patients with other Doctors?
Infusio’s home base is in Germany, and they seemingly came on the map in 2017 when Kelly Osbourne’s biography revealed that she had struggled with Lyme disease and got well thanks to Infusio in Germany. Unfortunately most patients did not have the money or resources to travel to Germany for treatment, but this endorsement set things in motion for their US location which suddenly found a new demographic of patients in the Lyme community. Where prior to this Infusio USA mainly treated neck pain, back pain, cosmetic issues etc they opened the door to the real money makers: chronic illness patients. There are a lot of very sick Lyme patients in the US, and Infusio now had fame and a good reputation that they could leverage to convince people to shell out upwards of $20–30k. In 2017 they upgraded their location in Beverly Hills which included views of Hollywood and a rooftop area where patients could receive their stem cells. Around this time they also began targeting Lyme patients (the same month Kelly’s book came out). The stage was set: this clinic had glamour, cutting edge technology, celebrity endorsements, and a sure-fire cure for those who had Lyme disease. Or so it seemed.
So, what are Stem Cells? From Stanford Health, “Stem cells are special human cells that have the ability to develop into many different cell types, from muscle cells to brain cells. In some cases, they also have the ability to repair damaged tissues.” Using stem cell therapy isn’t exactly new, but using it to treat chronic Lyme disease is. I read the book “This Is How I Saved My Life” by Amy Scher, which chronicles her trip to India to get experimental stem cells. This treatment at the time was very dangerous, and had just as much of a chance of killing her as it did saving her because she was deteriorating so quickly. She took the leap and managed to not only survive but go into remission. Her story is incredible, and it was the first real story many of us have heard where stem cells were used to bring Lyme into remission. However, it’s really important to distinguish the kind of stem cells Amy received vs the kind Infusio was offering in the states. They are not the same, and they do not work the same either. The kind of stem cells offered in places like Mexico and India are embryonic stem cells, which come from embryos. They are very potent but come with a lot of ethical questions which is why it is banned for use in the United States. Therefore Infusio USA uses a different kind called Adipose Derived Stem Cells. This means they take your own fat tissue (adipose) and extract your own stem cells from it. They then let it grow and mature for a period of time before injecting it back into you. These kinds of stem cells have been shown to be useful in localized injuries and are often used with athletes. It’s a whole other story though to say it’s going to cure or heal Lyme disease systemically, and there is no clinical proof of its ability to do so. Furthermore, these Adipose Stem Cells are NOT the same stem cell treatment used in their Germany clinic (or on Kelly Osbourne), because as I wrote earlier those kind of stem cells are not legal in the United States.
And so it began. Lyme patients from all over began flocking to California with the hope of a new life. Very few people will understand what it’s like to be so sick and so in pain that you are utterly desperate. You become so desperate for relief that when someone tells you that they have a cutting edge treatment which will help heal you, you become willing to do anything to attain it. There were patients who took out loans against their house, sold their cars, or did online fundraising just to get to Infusio. They were sold hope, but unfortunately many patients received anything but that. I personally interviewed a handful of these patients to get a first hand account of what transpired there between April 2017-April 2019 when Infusio ultimately closed its doors. Names have been changed to protect their identities, but I have confirmed that these are actual patients of Infusio. Here are their stories.
Amy’s Story:
Amy had been ill with Lyme disease for 7 years when she found Infusio. It had taken a toll on her life and like so many others she was excited at a chance to get her life back. She spoke in depth with Infusio about all of her concerns and questions. The clinic reassured her that she was an excellent candidate for their Lyme SVF stem cell treatment. They promised her that the treatment would boost her immune system to help her body fight off the infections and heal the damage left behind. Amy was very proactive with her health, and made sure to give Infusio a copy of all of her labs and genetic mutations to be extra sure that she would still be a good fit. Even with this information in hand the clinic told her she was “perfect for this treatment.”
“I was told there were no risks. The only risk would be I might not notice any positive changes. I was reassured that this would be what my body needed to heal from all the neurological damage Lyme had caused,” Amy said.
I asked what kind of pre-testing they did, and she said that they never ran any labs on her before treatment. Amy said she during her time at Infusio she noticed some improvement overall from the detoxing so she felt hopeful that it would work. However, on the flip side she would wake up every night after receiving the IV’s gasping for air. After she received treatment she was told not to take any supplements, not to detox, and to not do any other treatments. She must wait and allow the stems to do the work.
“After treatment I noticed a lot of ups and downs. Weird blood pressure dips, constant tingling all over my body and for the first time I was having a hard time sleeping. I took the tingling to be the stems working. I continued to believe I was healing,” said Amy.
As time went on things began to take a turn. 5 months after stems Amy developed mast cell activation syndrome that came on suddenly. She had reactions to all the foods she tried to eat, her environment, and everything she put on her skin. In a panic she saw a local allergist who was equally concerned and very worried for Amy because she had never seen someone so overreactive to so many things. Amy was told this was not a normal “side-effect” and that something was very amiss. Amy tried to get more detailed info about what was in the IV’s she received, but the clinic wouldn’t explain or tell her exactly what was in them. Left with nowhere to turn Amy found a mast cell specialist and got put on some medications which helped to stabilize her a bit, but she was still severely suffering.
“I reached out to Infusio and they told me this was “normal and part of neuro healing.” I had a hard time believing this was normal, but stayed hopeful and waited for this to pass. They agreed antihistamines and a mast cell stabilizer were necessary. I was told there was no problem with adding these meds.”
More months passed and Amy continued to get worse. Things would flare up and she was left to desperately try and help herself get out of it. At one point she couldn’t sleep or eat for almost two months, and has no idea how she survived. Around this time Amy also noticed the people at Infusio were changing their tune on guidelines for Lyme treatment. Suddenly they were saying that genetics did matter (where prior they dismissed Amy’s genetic testing info), and that taking any antihistamines or mast cell stabilizers could actually worsen the problem by making the stems push even more mast cells into the patient’s body. As Amy continued to get worse Infusio blamed all of her issues on genetics, which greatly frustrated her as she specifically asked about genetics prior to receiving any stems and was told she was a perfect candidate. Infusio tried sending her a ton of supplements hoping to help her body calm down, but it only made the problems worse. “My neck turned red, and I would get panicky and my throat would close up. I realized at this point I was on my own,” Amy said.
A year after the mast cell problems started for Amy she went on to develop POTS and dysautonomia on top of everything else. She began to faint often, had vertigo as she tried to fall asleep, and wasn’t able to work alone because it became too risky. Traveling became impossible, and she is unable to go out to eat due to food allergies and her loss of taste. She developed severe insomnia, lost a ton of hair (with bald spots), and had rapid aging on her skin. More so, she can now only eat 10 foods (as she reacts to everything else), and struggles with major digestive problems.
In summary Amy says, “I have been through HELL and I wish I could go back and not do this treatment!! If my review helps save another person from going through what I’ve been through, then it was worth it.”
I asked Amy to shed some light on the behind the scenes of Infusio, and if she could try to get her money back after everything she has been through. She informed me that because Infusio’s main clinic is in Germany all the money their California location receives is instantly sent into a Germany bank account. Therefore there is no way to get the money back, and the lawyers she has reached out to echo her sentiment. They won’t touch the case because Infusio’s financial source is overseas, and that makes it’s near impossible to fight. Furthermore since Infusio shut its California location down (some suspect due to bankruptcy, others due to patient complaints), it makes a case against a Germany company implausible to fight here in state side courts.
Layla’s story:
I’ve known Layla online for quite some time, and I actually followed her journey at Infusio via social media posts. I saw her detail the process of extraction via liposuction, to getting her treatment, and then the after effects. Her story is a little bit different than Amy’s, but still follows a similar pattern.
Layla received stem cells from Infusio at their Beverly Hills location and said that the most difficult part was the liposuction (to extract fat cells), which was anything but smooth. The process was traumatic and greatly affected her PTSD. She soldiered on though and received her stem cells afterwards. Layla said she didn’t have any issues with the initial stem cells, and that part went very well for her. However, after the stem cells are given to patients they can later go back to receive a second treatment called ACT. It was the ACT treatment which made her health plummet and made her sicker then she had ever been before.
She was told by Infusio that the ACT was just her cells, and there were absolutely no risks of getting worse from it. However, shortly afterwards everything with her health began to deteriorate. Layla’s neurological symptoms got very intense, and she was diagnosed with an autoimmune neurological condition. Her immune system went haywire on all fronts, leading to mast cell activation disorder (just like Amy).
Layla said that while the original SVF (stem cells) made her feel better, it was very up and down and she wasn’t quite where she wanted to be with her healing. Infusio told her that getting ACT treatment would be the boost that could get her to 100%. Instead it made her very ill, and she found herself with a complete lack of support from Infusio. “The follow up and aftercare at Infusio was horrible,” Layla said.
I asked Layla if she felt like the overall experience and treatment was worth it, and she said, “I don’t think the price is worth the experience, especially given how much worse I am now. I blame ACT more than SVF though, but my health and quality of life are worse than ever. Post Infusio I’ve been diagnosed with more diseases and my medical care has gotten significantly more complex. I’m over 2 years out now. If I could go back in time I absolutely would not do ACT.”
I asked Layla if she knew about other patient’s who got Neupogen (the cancer treatment medication) put into their ACT without their consent, and while she did say she knew others who it happened to she has no idea if it was in hers. When she got the ACT they told her it was only her cells, and she never heard otherwise from Infusio. She did confirm though that several other patients she knew who received ACT (and had Lyme disease) ended up much worse off afterwards.
Olivia’s story:
Olivia is another person whose journey I had been following, but I met her online during the period of time after she had returned from Infusio. I saw how ill she was, but I didn’t know the full story of exactly what happened until I reached out to her for this piece. This is her story.
Olivia had been battling Lyme disease for quite some time when she heard about Infusio. Her two pressing issues which were severely limiting the quality of her life were seizures and mast cells. She was considering Infusio, but also had IVIG treatment on the table as well. She was originally going to do IVIG first and then go to Infusio afterwards, but they urged her to get to Infusio ASAP.
“They told me “no no, come here first the sooner you can get here the better.” I corresponded with them for about 4 months while I was raising money to get there, and they kept telling me to come the sooner the better. I asked about mast cell because I was concerned, and I have their email where they said, “stem cells help with mast cell, the sooner you can come the better.”
Olivia finally got everything set up to go, and made a staggering 25 hour trek to get there. However, when she got there she was was shocked when one of the Doctors told her that she couldn’t get the treatment because she had seizures.
“Clearly they didn’t spend the time and care enough to look at my file when I was even initially going down there because they were so shocked by my seizures. It was in my notes, in my emails, and in my application yet they were surprised when I showed up. Its complacency. They weren’t giving patients the care and attention that they needed from the get go.”
Thats when Phil, one of the owners of Infusio stepped in and assured Olivia that they would take care of her and it would be okay. He assured her that she would be fine for treatment but they would take it slower than usual and leave out some of the other add-on treatments that others usually receive. Patients typically have a 2 week stay at Infusio, but Olivia ended up staying longer due to the slower rate of treatment. However, even with those changes her seizures still got triggered during infusions. Even though Infusio knew about all of this they still left Olivia in a rather scary situation one day.
“They did leave me unattended in one of the rooms during treatment and I had a seizure with no one around to help. The staff were really nice, but it was disorganized and under staffed. It was way too busy in there and I ended up going in a back room because they hardly had enough seats for everyone. At that point my family and I were willing to look past the chaos because we were there to heal and just happy to get help.”
After her stay at Infusio Olivia went home, and thats when the staggering declined happened that landed her in the hospital and made fear for her life.
“I felt quite unsupported after I left the clinic and things started going downhill fast. I had a 6 month spiral that almost killed me. It put me in the hospital for a month with Autoimmune Encephalitis symptoms and 8 hours of seizures a day. My migraines got a lot more severe, my mast cells got a lot worse, and I developed a fainting disorder. I would faint 20 times a day; if I laughed, if I got surprised, if I stood up. Anything was making me faint. I also had a crazy sensitivity to sound and light, but particularly sound. I couldn’t (and still can’t) handle crinkling noises, or bags, or beepers because they can trigger seizures. I am always in sunglasses and a hat, and I get rashes in the sun now. I am just super super sensitive now, and I think thats a common issue with a lot of the stem cell patients.”
Olivia went to Infusio for help with her mast cells, but instead found herself with an even more severe presentation of her condition. She currently has to take 6 times the medications that she used to take for her mast cell disorder in order to just be able to eat meals and get through the day. Olivia says that she’s significantly worse off now than before she went to Infusio, but she’s a little bit better of than the initial 6 month spiral that almost killed her.
“My biggest issue with them comes down to almost complacency. The 6 months of hell happened after my stem cells and I wasn’t able to do follow up ACT treatment because I was way too sick to travel. I reached out to the Doctors again asking what to do from here and they were slow in correspondence and then told me to try IVIG. This is where I got upset because they told me not to do IVIG and that stem cells would fix everything. And now they’re telling me to do IVIG?? I could have skipped this nightmare, because stems was truly purely hell for me and I’m pretty tough. I can usually handle a lot but that was death bed hell, and now here they were recommending the treatment that they told me not to get. Thats when I got really upset.”
While Olivia continued to struggle she continued to get very little correspondence or help from Infusio.
“A couple months go by and I reached out again to ask what to do because I got denied for IVIG. They then told me “we don’t want you to do IVIG anyways, we want you to get another round of stem cells.” I still can’t travel so I asked them if they had any other options to help stabilize me. I didn’t hear anything back to that question despite several follow ups. A month goes by again and I finally get ahold of someone and then they recommended Exosomes (another type of stem cell add on treatment). So literally in a course of 3 months they told me to do 3 different things. Thats when I was like, can you guys sit down together and figure this out because I’m not willing to go through all that hell again because you guys are complacent.”
As time passed by Olivia continued to press them for some kind of help or clear cut answers as to what her next steps could be.
“They told me that I can’t come back to them for further treatment or help because my seizures were too bad, and they said I need to control them first before I can go back. So the seizures you made worse at your clinic are why I can’t get the care you’re recommending now to help with the worsening seizures? I can’t travel anyways, but it was annoying that they wouldn’t take me back even if I could travel. They messed with my body and got me to that point but yet they wouldn’t help me out afterwards. They also owe me money that they haven’t refunded me from treatments that I paid for but wasn’t able to get done.”
In the end Olivia was left in the lurch with nowhere to turn to. Getting answers from them was like pulling teeth, and ultimately it led nowhere. Olivia said that she felt very unsupported, and overall frustrated.
“I think they are just throwing out treatments and quick fixes without taking the time or care to really trial them and make sure that they’re helping a large range of patients before pushing it on people. Thats what upsets me the most. They tell people they can heal them without taking the time to really evaluate if its bad for that person, or if they should be marketing it at all when there are so many adverse reactions. Every month they had a new ‘cure’ and it changed every month. To me that just shows they aren’t doing the proper testing before pushing stuff, and it’s really unfair for patients like me. It’s detrimental.”
On top of everything, Olivia said that during all of her struggles they never once took responsibility for their actions. They claimed it was just a miscommunication with a bad employee that led to her adverse reaction, and that ultimately it wasn’t their fault.
“ I initially spoke to a sales guy who was in charge of signing everyone up. His name was Chad and when he signed me up he told me he spoke with the Doctor several times to confirm things. Then later when everything fell apart after my treatment I was talking to Infusio about all the things they promised before I came down that they failed to provide. Thats when they claimed they had issues with the sales guy Chad and they have since fired him (claiming it’s Chad’s fault for the miscommunication). They were just using the sales guy as their cop-out for everything and it isn’t fair. They weren’t taking any responsibility for any of their promises or actions.”
After everything Olivia had been through, I asked a simple and final question. Was it worth it?
“In short it was definitely not worth it. If anything it created way more physical and emotional issues because of the stress of everything. The way they are dealing with me now as I’m trying to sort things out is unprofessional. They aren’t getting back to me or they say they will have a meeting and call me back but thy never do. They aren’t paying me back money they owe me. They want me and everyone else to give up because we are too sick and too tired to keep trying. There’s no heart in the company.”
In order to round out my reporting I also spoke to 2 individuals who went to Infusio and did not have a bad reaction or experience with treatment. I questioned them a bit about what the saw at the clinic and got two different stories. One person I spoke to has a rather large social media following and they stated that they were treated well every step of the way, and saw no wrong-doings. I asked if they received any part of their treatment for free in order to post about their trip and share reviews and they chose not to answer that question.
The second person I spoke to said that while they had a good experience they do know others who did not. They told me that when they went to Infusio they were in overall better health than the other patients who reported the ill effects. By no means were they super healthy, but they said that they were about 70% of the way there, and used Infusio as the final boost to health. This patient confirmed that someone else they knew who also had a good experience was similarly in better health, as opposed to someone like Olivia who was so ill that traveling to get there was a huge undertaking. It begs the question that perhaps those who can benefit from adipose stem cells would be patients who have a certain level of health already achieved? Or maybe there is another metric that needs to be measured to see if a patient qualifies for treatment, and until that baseline is discovered this kind of treatment should be offered with trepidation.
There are a lot of stem cell clinics in the United States, and many of them are incredibly reputable. They use various types of stem cells, and they help a lot of people. Most of these clinics work with athletes for pain management, and very few (if any) would take on a patient with Lyme disease. This is because these clinics often don’t properly understand the illness, genetic mutations, or other co-conditions that could complicate or have an impact on treatment. I want to be clear that this report is about one isolated institution; Infusio. I can’t speak to the treatment or knowledge at other clinics, and by no means am I saying that stem cells as a whole are dangerous. But I did want this to be a cautionary tale for others. These patients did their due-diligence and were by no means uneducated. They trusted a medical institution that held itself in esteem and promised them that they could help, but in the end they were misguided. In a perfect world there would be stricter laws in place for what these clinics can get away with, and specifically laws that would prevent them from weaseling out of their responsibilities to the patients who they hurt. Having their bank located in Germany shouldn’t be a valid cop out for a business based in the United States, but for now sadly it is.
It was important for me to share these patients stories and give them a voice. What they went through and continue to go through is horrifying, and it was done at the hands of a company who should have known better. Yes, as patients you must do your due-diligence and research the treatment you will receive. But more importantly it is the job of the Doctor overseeing the treatment to properly determine if that patient is even a candidate to begin with. And if complications arise it is the Doctor’s job to find a way to fix it. Period. Adipose stem cells were not a common treatment practice for Lyme disease prior to the rush to Infusio. It was a novel approach that excited patients because of its innovation. Therefore there was very little reading or preparation that these patients could have done online, and they put their lives in the hands of Infusio to know what is right or wrong for their health. What Infusio did was negligent at best, and criminal at worst. They closed up shop and ran when their patients needed them the most, and now they are nowhere to be found. If this article does anything, I hope it holds them accountable. They can run, but they can’t hide from the truth.
