If you know someone with anorexia nervosa, you know how chronic… dangerous… and life-threatening it can be. I bet you didn’t know it could go into full remission.
This is the story of a novel idea, a brand new course of treatment, an innovative treatment procedure, and a protocol that was born out of love.
Here’s Caroline’s story:
It’s a heartbreaking disease. And as surprising as it may be, there has been no effective treatment for it, whether it be medicine or psychotherapy. Self-starvation, hyperactivity, anxiety, body dissatisfaction, and difficulty managing one’s emotions all accompany this horrific disorder. A new approach for anorexia is desperately needed… a new procedure, a new sequenced treatment…something.
There are 32 million people–of all ages, races, and genders–in the US with an eating disorder. And someone dies every 62 minutes here because of their eating disorder. Anorexia is the scariest. The death rate in women with anorexia is 10 times higher than for other women, and that’s because the self-starvation causes medical problems that can be critical…. and because desperation can lead to suicide. A new approach for anorexia is vital.
To understand the persistence of anorexia, you need to recognize it’s not just about not eating…or losing weight. Those are actually the results of the most crucial symptom, which we call the “anorexia voice.”
Some medication solutions and some psychotherapy approaches may claim up to 60% response… meaning 60% got better. But for how long? A couple weeks…? A month? These patients require something different, a new approach to anorexia treatment.
What’s more, 40% of adolescents never gain their weight back, and of the 60% who do, only half of them restore emotionally. On top of that, treatment is expensive. Multiple hospitalizations, out-patient treatments… the average cost of treatment is $110,000. This is what you might call the “white knuckle” approach. Hard work… mediocre outcomes.
And there are so many who never get better.
This is because they try to treat the actions of abstaining from food or over-exercising , rather than the symptom that’s most stubborn to relieve… that voice in your head we call the anorexic voice.
That voice that tells you you’re fat when you weigh 96 lbs and look in the mirror. The voice that tells you to not eat because you’re getting fat. The voice that says you’re ugly… that you’re too tall, or too short; too fat or too skinny.
Like I said, we need to see something new and different, some new approach for anorexia.
This singular aspect of anorexia is the most difficult to manage.
And this symptom must be erased if you’re to get well and stay that way.
Anorexia Nervosa often emerges in adolescence, but it can go on and on….
In fact, if it continues for 3 years, it’s considered chronic and enduring… even treatment resistant, as we often say referring to other disorders.
To find an innovative sequence of treatment, a new approach, a different protocol….that would dissolve the symptoms of anorexia nervosa…where the symptoms subside and the lack of symptoms lasts, and that voice goes SILENT…well, it could be life saving for many, and life restoring for the rest.
And that’s where a new approach for anorexia can bring hope.
You may remember that we talked about the use of ketamine treatment to treat eating disorders back in May of 2018. And we pointed out way back then that eating disorders were actually the first psychiatric disorder studied with ketamine treatment. I.H Mills and his team conducted this study in 1998. 22 years ago!
Well, I’m delighted to talk about my most recent work with a team of experts and an extraordinary 29-year old woman, Caroline, who’s suffered from anorexia nervosa since she was 14.
I was privileged to work with a medical doctor specializing in internal medicine and addiction medicine with a brilliant and compelling idea about a new course of treatment (Barbara Scolnick, MD), a reknowned dietitian and keto specialist (Beth Zupec-Kania, RD), a brilliant neuroscientist (Chiye Aoki, MD), an expert in eating disorders (Tom Hildebrandt, MD) and an extraordinary young woman, Caroline.
And we’ve published a case report on the effectiveness of it for her.
Effective isn’t the word. Exhilarating is more like it. Remission. Unexpected, fully sustained, and shocking. It comes from a brilliant idea, and from just being willing to look at anorexia with a different lens, with an innovative treatment that was upending and surprising in its rapidity and its effectiveness.
Get ready. It’s time to open your mind.
To understand the novel course of treatment we used, you need to understand a little neurology and pathophysiology. So, here’s a quick crash course.
Lipids, and Lions and Bears, Oh Me!!
Getting back to neuroscience, metabolism, and hibernation, some studies have examined the how the root cause of anorexia may be related to lipid signaling and how chronic starvation may be connected to hibernation.
As you know, hibernation is what bears do in the winter, and lots of other animals, too. To survive the winter, their body metabolism slows way down, along with their temperature, so they can survive for several months without food.
In patients with anorexia nervosa, their long term starvation signals their body through their fats (lipids are fats), to slow down to help them survive. For the patient to recover, those lipid signals must be returned to normal both in their metabolism and in their central nervous system. This is vital information in the search for a new approach for anorexia nervosa treatment.
To get those signals back to normal requires fats be introduced, even if they are processed at a much higher rate. So, a medical keto diet was developed by the team for Caroline, to ensure she had enough healthy, wonderful fats to improve her brain health and restore her metabolism. And her mood.
And her anorexia improved. But it didn’t completely stop. The voice was still there.
Then she began treatment with IV ketamine. We planned 6 treatments, but she didn’t need them. She got only 4. Because her anorexia symptoms — the obsessive thoughts, obsessive behaviors, and the anorexia voice in her head — completely stopped. And they’ve been gone for more than 6 months.
Long enough to call it remission. And to know for sure that it’s real. Long enough to write it up as a case report, submit it for publication, and get it published.
It is real. It’s so real that it’s a little unreal. If you’re in the anorexia world, you know how wild this sounds. Keto? No way. Anorexia experts and dietitians alike hate the idea, don’t trust it, see it as dangerous….and might think it’s just plain wrong. Ridiculous. Risky.
Ketamine infusions? In a patient whose metabolically compromised? Unknown. Untested. Too risky. Until we carefully weighed the risks and benefits — for her– created the right set and setting, and gave it our best shot. Medicine is a science. And an art.
So this is the new treatment protocol, the new combined treatment, the new procedure, if you will, that we designed: it’s a duo. And it worked.
Let’s talk about Caroline for a moment. You heard her up top. She’s real, riveting, and absolutely raw.
Caroline is 29, and had suffered from anorexia nervosa since she was 14. Over the years she had intermittently struggled with alcohol dependence from the age of 18. She had seen numerous specialists, had been in and out of treatment programs, and she received supportive therapy periodically. She also attended Alcoholic Anonymous meetings at least once a month.
Obviously, she needed someone to come up with a new idea. The usual treatments just weren’t working. She desperately needed a new approach for anorexia.
And before beginning this new procedural treatment course, she had abstained from alcohol for 15 months, which was a major accomplishment. It’s also an example of how psychiatric disorders are often found in clusters. This girl wanted to be better…she worked so hard. But that voice…
She experienced the kinds of restrictions not uncommon for someone with anorexia.
Caroline preferred to eat alone, and used a napkin rather than a plate. She ate only ice cream or peanut m&ms for days at a time. And used low calorie sweeteners excessively. She had “safe” foods which consisted of Splenda, frozen yogurt, zucchini, eggplant, and coffee.
In addition, she exercised compulsively every day, usually for 2 hours. She had managed to keep her weight around 125 lbs. Hospitalization had been required two separate times in her life to help her metabolism stabilize. The first time was following a grand mal seizure 12 months after she was diagnosed with anorexia nervosa. She weighed 96 lbs at admission, that time.
Personalized and Medically Designed Ketogenic Diet Specifically for Caroline
Not something you can google or YouTube… personally designed for her body and metabolism by a registered dietician reknowned for her expertise in developing ketogenic diets for neurologic disorders.
And when you watch Caroline’s video you’ll hear her tell you how the keto diet seemed to help her head clear. Her body began to respond. Her true personality emerged. She felt better.
But that pesky, ruthless voice just kept cracking the whip. Constantly …constantly… trying to force her to stop eating and keep exercising.
…Combined with Ketamine Infusions – An Innovative New Approach for Anorexia Treatment
Then, came the ketamine treatment… as it turned out in her case: 4 infusions. And the voice died. It just disappeared.
And she was free. For the first time in 15 years, she was free to be herself, make her own decisions…and pursue her own happiness.
A case report, of course is just that. It’s a report of one person.
It’s exciting preliminary work, though. The novel treatment procedure and the dramatic outcome that Caroline experienced–sustained remission and recovery–with a medically designed ketogenic diet followed by IV ketamine infusions deserves further study and more research.
We may be on a new horizon.
To the restoration of your best self,
Lori Calabrese, M.D.