ABOUT ME
My name is Basha Gerstenfeld.
I am a student doctor of natural medicine and a board certified holistic health practitioner. I study the amazing field of Psychoneuroimmunology. This field, first emerging in 1970, looks at the effect of the mind on health and resistance to disease. Having a better outlook on life with stress management profoundly influences health and illness. I have my bachelor's degree in Psychology, as well as in Holistic Health Science. I also hold a certification in keto health coaching.
My goal is to provide innovative, research-backed technology and herbal medicine to the public to better their health. I hope to graduate with my DNM and PhD upon the completion of 1,000 + practicum hours in the near future.
My Health & Career Journey
Short story long...
I was every doctor's worst nightmare; symptomatic and subclinical. Depression has also been a major player in my life due to, perhaps, my genetics, and this long winding journey. In my journey, I have learned that 75% of people are functional (lacking obvious diseases but are not quite healthy), 20% are healthy, and roughly 5% or so are sick. I was part of the majority of people who felt not quite right. This has worsened drastically over the years. Illness, and disease are very different. Illness is how we feel, and disease is an organic, physical manifestation like a tumor, a pathogen, or arthritis. It is measurable. Health is not the absence of disease, which is really important for doctors to understand as well as patients who have beaten themselves up for a problem that is not yet visible. Also, illness and suffering are different. Suffering is optional. But of course with major depression, this is the exception to the rule. As for medical accuracy, medical science, humans, and diagnostic criteria are far from perfect. To attest to this fact, I have a friend with neuroendocrine tumors who was mistreated for lupus for 8 years before doctors realized it was cancer.
I first felt very out of my skin when I was about 11 or 12. I was super athletic and was always involved in a sport. I practiced gymnastics since I was 8 and felt that my body was suddenly being taken over by someone else who might not have ever touched a balance beam before, gone running, or spent hours in the gym. I also experienced a complete lack of stamina at age 14, where my stamina is unable to be improved through any amount or pattern of exercise. It was at 16 when I had to quit gymnastics. The problem persists to this day, a decade or so later, still undetected by modern science, as incredible as it is. I first started experiencing palpitations at random times, exercise intolerance/ dyspnea (not being able to catch my breath), quick exhaustion, tachycardia, and chest pain. It got so bad that it felt like my heart would explode out of my chest if I climbed 2 flights of stairs without a pause. As years went on, I also experienced odd rashes that made my face feel like sandpaper, stomach upset, dizziness, nausea, fatigue, heat intolerance, hypermobile and subluxating (partially dislocating) of many joints, severe burning in my stomach, muscle and joint aches, constant colds, melancholy, bruising legs, allergies to everything, brain fog...you name it.
The two most devastating consequences of my dyspnea have been a near-death experience when I was 21, and the forced cessation of practicing martial arts, which I had done passionately for 4 years. At 21, I was at the beach one day and wanted to swim out to the sandbar not too far ahead. There were about 20 people there already. Within 20 seconds of swimming, I suddenly lost my breath, got very tired, and started breathing very heavily because my body wasn't getting enough air. I felt my heart beating out of my chest. I realized I was exactly half way between the shore and the sandbar. I had to make a decision that would instantly change my life. Or I would drown. I had no energy to swim in either direction for even a second longer, but realized if I swam to the sandbar, I might get stuck there without help, in the middle of the ocean. The thought was terrifying. I knew I couldn't rely on anyone. I was actually with my cousin at this time who failed to realize how much I was struggling, even though I said I was in trouble and had to go back. No help was given.
The more my lungs begged for air and made me breathe, the less air I seemed to get. It wasn't helping. I now realize I was expelling too much carbon dioxide. I forced myself against my instincts to slow my breathing. I was getting very lightheaded. I realized if I were to hold my arm up to signal the lifeguard for help, I would quickly sink. There was no lifeguard. I heard my mom's voice in my head and remembered her telling me that if I was ever drowning to float on my pack and paddle gently with my arms along the coastline. I did just that. (Thank you, mom). I asked my cousin a few times if the shore was near. I couldn't look back. All my efforts went into surviving. I couldn't die like this. Miraculously, I made it to the shore, very nauseous. I sat on the sand, looking at the water, and pondered my own weakness when I was tested against nature. If I were anyone else but me, without the insane will (and just enough strength) to survive, I probably wouldn't have. It had been more than near-death. It was happening. I felt what it was like to decide between life and death- and nearly missing. That level of consciousness remained as a permanent mark on my personality.
Going back, when I was 16, I remember sitting in bed thinking about what I wanted to be when I grew up. I looked on my bookshelf and saw a manual for craniosacral therapy that was given to me by a neighbor who was a healthcare practitioner. The idea struck me. I want to be a holistic doctor! Why hadn't I seen it before? I loved all kinds of alternative healing modalities. That year, I became certified in reiki level 1. I also learned about crystal healing- a method that may seem more magical than scientific, but when you delve into it, you will find out all the ways which humans use crystals for their natural energetic properties. Think of Swiss watches, lasers, and how atoms are shifted around in quartz rocks to strike a fire for camping purposes. Most watches today use what is called 'quarts movement,' where the watch's battery sends electrical currents through the crystal component creating electricity within the crystal and creating 33 vibrations per second. This drives oscillating movement which powers the motor to move the watch hands. In terms of health, a crystal's vibrational energy mingles with our own, and we can manifest healing. I used crystal therapy to rekindle a broken family bond and find forgiveness. It was no small feat.
In my last year of high school, I kept busy, applying to colleges that would get me on the path of becoming a naturopathic doctor (ND). I had gone through a lot of family troubles by then and was living with one of my parents in a trailer. I didn't let anything phase me. I actually first lived in the trailer at 15, then at 18, and for a third time at 21. I had the knee surgery at that point, and recovered in that trailer. Looking back on high school for a moment, a silver lining of all my struggles as a young person was that I won the True Grit Award during graduation. The principal had previously announced that there would be a surprise winner. It was a beautiful moment that made my struggles feel so vindicated. It was something I truly earned. Something funny was that I felt that I might win this, but during graduation, the announcer first accidentally said someone else's name for the award. I totally waited for them to hurriedly announce the right name. And they did!
The day after graduating high school, I got my drivers license, and the day after that, I moved across the country by myself and began a Biology major. I felt that naturopathy (ND) was the path for me. Due to stress and life events, I was discouraged from this path and quit college for the first time after one year. I felt that the monotony and busy work sucked my creativity and soul dry. I also had little emotional support or peers because it is not a common field or one that people often know about. I needed guidance. I was without friends in a strange new world. I took a year off, actually thinking I would never go back. During that year, I completed massage therapy school, which I loved. I was still lonely and unhappy with life in general and moved back to my hometown. I got a job at a spa, but the clientele was sparse, even though the clients I had asked for me for years after I left. I then cooked and prepped food in my father's restaurant for the next year. I had the idea of studying for my bachelors in alternative medicine to use to get into grad school for my ND. I signed up and paid for online classes, and then quit almost immediately due to family and life events. I was so discouraged. I had wanted to be a naturopathic doctor, but with all of these struggles and lack of support in this obscure field, I let the notion go. I quit college for the second time. The year progressed, and I continued to work for my Dad. In my mind, college was dead and over. I learned a lot about life then. And about other people. I knew I didn't want to work in the restaurant biz forever, but had no other direction. So I waited for a sign.
After having arthroscopic knee surgery (one of the most difficult experiences of my life) and physical therapy at age 21 for a gymnastics injury when I was 17 (17!!!), I decided I wanted to be a physical therapist more than anything in the world, and spent the next 8 years working rigorously at this goal, working on my BS in Athletic Training (AT is like rehab and emergency sports medicine for athletes). Not all my credits transferred, so I was technically a freshman twice, but only a junior for 1 semester. After a very stressful year in AT, I switched majors. Again. I couldn't burn out before grad school. I thought about Biology again, but remembered how un-gifted I was at math. I was lost and about to quit college for the THIRD time. I spoke to a school counselor and family friend, and was lead on the path of Psychology. I had no idea just how much this was the right path for me. I didn't realize it until 3 years after I graduated and started my medical career. For the first 2 years of undergrad at this school, I still had fears and doubts about if it was ever possible for me to graduate.
During these undergrad years, I also saw holistic-minded PAs. Although having somewhat of a thorough model for medicine, it was still too mainstream and didn't test for insulin resistance properly. I suspected it for a while now, but showed up as normal on almost every test. I went to a reproductive endocrinologist and found no answers, but gained a bit of medical knowledge along the way. I went to gastroenterologists and GI-focused PA's- all excellent in their field. But it wasn't them who was wrong. It was the model of medicine. More on this when I mention Dr. Berg. I even got an endoscopy for $25 while I was briefly living in Ukraine in 2018. Everything was normal. There was no explanation for nausea, and I wasn't somehow absorbing more nutrients than I was supposed to. That's not a thing. My medical knowledge was still developing.
Looking back, I had gone through a near-death experience at 14 because I was unknowingly starving myself. I did not understand my body and didn't know I had certain conditions. I started not eating very much at all. Maybe I'd have a few cheerios a day. Then once, when I was in a program, I decided to have a prepared meal. I got violently sick. I got some kind of food poisoning then-at the worst time ever when I was already barely eating, and it felt like everything including my very life-force was expelled from my body. I consider this to be the worst day of my life. I was in excruciating agony and dying on the cold, hard bed. To this day, I don't know for sure what caused it. Either I had become anorexic without knowing it (It's almost impossible to decipher anorexia when you have lipedema. Google "lipedema anorexia")- and then I suddenly ate a normal amount of food, which is dangerous, OR I had some kind of severe food poisoning from the packaged food, which is less likely. Nobody where I was believed me when I told them I wasn't feeling well and that I was about to get sick. I was told to shut up because people were eating and I was grossing them out. How selfish and ironic people can be! was left alone for hours. I got very very sick. I was vomiting and more. I kept calling for a nurse or doctor, but nobody came. It was a disaster that wouldn't end. My body doesn't always know when enough is enough, and will react too strongly to toxins where my intestines will spasm out of control in efforts to save me. I learned just recently though genetic testing that I have less superoxide dismutase (SOD) and capacity to handle toxins. Even awful canola oil makes me nauseous. There was one other girl who saw what was happening to me. She knew I was desperately dehydrated and on the verge of death, and she brought me a cup of water. She was the only one who cared. She saved my life with that cup of water. I think she was the one who told the others that I really was sick. So, after hours of being ignored by everyone and violently ill, someone finally took me seriously and called 911. It doesn't matter what age you are; when you are about to die, you just know it. As I slowly sipped on the water in her hand from where I lay, I promised I would name my kid after her. She saved my life and was the only one around who cared. Although I will not be having kids, I will honor her here by mentioning her name; Venus. She taught me the value of listening to those who aren't listened to.
I was NOT rushed to the ER (and should have been) for severe dehydration and poisoning. These people made me walk outside the building and all the way around to another building to a stretcher. It wasn't even brought to the front of the building I was in. There was zero excuse for this other than cruelty. I remember they were not able to give me any good explanation for why they couldn't bring the stretcher to where I laid. I had zero energy to walk, but I somehow did. I never thought I would make it. As I said, that was the single most painful and horrible day of my life.
I almost died at 14. But here I am.
Fast forwarding again to 2014, I was mid-bachelor's . I was well on my way to self discovery via this incredible world of medicine that I loved long before I needed it myself. I was never a great math student, so I needed to take things a bit slower and focus very hard. I remember my very first time struggling with math in 4th grade. I understood everything that was going on, took a test, and my teacher sullenly and gently told me I got every question wrong. I've struggled tremendously and worked hard at math ever since, but it wasn't enough. I remember a 7th grade math teacher told me I couldn't do anything except add and subtract. Ouch! I was pushed back to the lowest level math, and somehow managed to progress in school. I was pretty good at everything else, especially creative subjects and writing. In college, the struggle continued. I would study in the math lab up to 8 hours every day/night after my regular classes. When the math tutors went home, I went home. Sometimes I would have to work out on the soccer field or in the athletic training clinic until midnight. I would then take a bus home- if I was even able to catch the last bus. Sometimes I couldn't and was stranded at school, exhausted and hungry. I was also waking up at 5:50 AM to catch the morning bus to make it to my Emergency Response class at 8. Not fun times. But I always loved medicine. I tried twice and failed miserably at Chemistry, a prerequisite for almost any kind of medical school.
Also during this time, I had a nutritionists, horrible appetite suppressants, and self-hate (along with blame coming from others), only to find that the efforts to exercise more and eat less made me gain weight and lose muscle mass!!! As it turns out, increased cortisol and stress from exercising and excessive dieting makes people gain weight and it eats up muscle. I was never very big, but I was still not in my own body. I WAS AN ATHLETE. I loved veggies, and was obsessed with health by the time I was 12. This is so sad. I believe that one of the worst and most painful diseases in the world is anorexia. I didn't look anorexic, but that was because of 2 underlying health conditions that I will reveal below. So at age 20, medical science failed my own physiology, and my nutritionist accused me of cheating on my diet. And from then on, I learned even more to only deeply trust myself. Even if no answers were present yet. Not every specialist has a broad understanding of the complexities of the body and genetics.
A year or two after graduation when I was in my mid 20's, I was back online, searching for an explanation as to why I was gaining weight in my legs- not my stomach like in PCOS. For whatever reason, I must have finally typed in the right phrases in regards to weight and legs, because the answer appeared in front of me. It was never suggested before, and I never heard of it in my entire life.
LIPEDEMA:
An adipose tissue disease almost exclusively affecting women, where there is a proliferation of fat cells in the legs, depositing bilaterally and evenly. It gives a very nodular, cellulite texture and can be very painful, even with light touch. It can create 'column legs' and ankle cuffs for some. It happens in stages, and in the worst case can turn into lipo-lymphedema. It clinically differs from all other diseases including obesity and lymphedema. Lymphedema involves stagnant lymphatic fluid in the intracellular matrix. Lipedema is fluid and fat built up inside the fat cells themselves, and growing exponentially. It is a truly devastating and demoralizing disease. I almost starved and died from this disease. This condition is different than lymphedema, where fluids collect outside the cell wall and can be drained and manipulated with certain therapies. The only treatment that I have ever seen help is surgery-liposuction, and to a mild degree, the ketogenic diet. But the diet will likely only burn up regular fat tissue, and not diseased lipedema tissue. It is NOT the same as regular adipose tissue, and behaves differently as well. It is not connected to the fat-burning metabolism. Keto can help the surrounding regular fat tissue interspersed in the legs.
A sensation washed over me. I knew this was me. The feeling of getting my first answer was unparalleled and unimaginably gratifying. I read articles furiously that week and told nobody of my discovery. I had to make sure. It took a few months to find the right kind of doctor who knew about and could diagnose lipedema. I saw a great vascular doctor, Dr. Carmel Celestin at Cleveland Clinic. I said nothing about my new discovery, wanting an objective opinion. I told her my symptoms; bilateral and increasing leg adiposity, easy bruising and leg pain. She did a full evaluation and then looked at me. She said "Have you ever heard of Lipedema?" And I got my first official diagnosis. My oldest brother, being a lawyer, encouraged verification. I went for a second opinion and got the same objective answer. Lipedema. I went to see America's best lipedema specialist, Dr. Karen Louise Herbst in Arizona- a place I vowed, for other reasons, I would never return to. She gave me two full hours of her undivided attention, and I learned an incredible amount from her. She diagnosed me with lipedema and Ehlers Danlos Syndrome (EDS) on the same day. Revolutionary.
Ehlers Danlos Syndrome:
This a genetic condition involving a collagen mutation. To oversimplify this, EDSers are very hypermobile with slow wound healing. Anything with collagen is affected (ligaments, bone, stomach lining, and skin). This even explained my other GI symptoms. Looking back, this was why I tore my ACL in the first place and had knee surgery. I could barely walk for 3 years, and then had a very difficult time healing after knee surgery. My grandfather also got knee surgery at the same exact time as me, and he healed 6 months faster than me. It took me 12 months to heal and walk normally again. The PTs never understood why I still needed crutches a few weeks after surgery, and I never knew I wasn't supposed to need them anymore. I did physical exercises meant for others in the same healing timeframe I was in, only my body wasn't healing fast enough and wasn't ready. So some of the PT actually set me back to the beginning of the healing process. It was very painful but eventually helped so much. I was inspired by the profession and understood that it was also holistic in nature. A side note about how serious these conditions are, they have each, individually almost killed me, as I previously mentioned the worst day of my life, and other aforementioned instances.
Back to being in my mid 20's, I watched some of Dr. Berg's videos on keto and insulin resistance. I thought of how simple life would be if that were my problem. To just know... I called his radio talkshow and told him my symptoms; constant inflammation and my new lipedema diagnosis. He told me that any time there is inflammation, consider that there is insulin resistance (IR). I said I was checked so many times for that but it came back normal. I learned about the Home-IR test and how to test it properly. It can take up to 13 years to detect an insulin problem, and by then, one could be in serious danger of having diabetes. Doctors always test fasting glucose (blood sugar), but the body learns to spike insulin to clear the glucose from the blood, therefore making everything seem normal. Eventually, the body gets tired of pumping out so much insulin, and the cells become immune to it, that excess glucose is left in the blood-which happens only after so many years of exposure. Glucose is not the best way to test. The fist sign of IR will be INSULIN. Fasting insulin should be tested.
After (F-I-N-A-L-L-Y) graduating Magna Cum Laude with my BS in Psychology during my mid 20's, (and after other prerequisites in the previous years), I prepared all summer and took a physics course. During this time, I was informed that all my prerequisites and course credits had expired!!! It felt like 8 years wasted. But that's not what made me quit. If I needed to re-take some courses, I would. I was seriously relentless in accomplishing my goals. There was only one PT school in the whole country that might accept me and that didn't require Chemistry, just Physics. So I went for it. What made me quit was a realization I got from a feeling. A month into Physics 101, I felt the familiar and uncomfortable feeling that I was a freshman again for the third time, starting my college experience from scratch like everyone around me. The last 8 years flashed before me, and I thought about everything that has happened, everything I did to get this far. It was too much for such little reward. I was miserable, sitting in this classroom as I would have 8 years ago. I needed creativity and passion back in my life. I realized I no longer cared about being a DPT. I wasn't willing to spend another second being miserable for the minute chances of being accepted into a school that would further beat me into a pulp.
I stood up and walked out of that classroom, acknowledging that I was changing my life by doing so, and that the future was completely uncertain. The whole process made me really trust in my intuition and accept that it was okay not to know the future- I would be the person I was meant to be, regardless. I would find a way to help others how I wanted to. I just didn't really know...how.
Short story long...
This begins the journey to a new self-REdiscovery. After stopping college and beating myself into the ground, I figured I would try something new in the meantime while I waited for my big epiphany to happen. I took a year, during which I decided to become a private investigator (PI). I finished the course and completed the exam with a perfect score. After a lot of job hunting, I couldn't get hired, thus preventing me from completing the 2 year required internship for licensure. I had to put that job aside as well. It was actually only at this point that I went through the pulmonary testing with no answers and essentially quit my whole life. If college taught me anything, it is that it's okay to stop one path to find another. Actually, a beautiful soul I met on the first day of junior college, Raina, taught me that. I guess the lesson came full circle. She said, "If you ever find yourself on one path but need to start a different one, don't be afraid to change directions. Ever." Change is a good thing. Not all 'quitting' is bad. It liberates me so much to say that I quit my whole life and started a new one. Thank you for those wise words and confirmation, Raina. I quit school, had to quit martial arts due to extreme fatigue and dyspnea, quit PI, quit being a pescatarian which I was for 10 years and started keto, quit my painfully failing long-term relationship, and quit even the very place I lived. I packed up my life and drove 13 hours in one shot to a new and beautiful destination. I chose to live in the place where I feel I became an adult at the age of 16. This was a place where I attended wilderness camp, where I learned about myself, others, and the world. Maybe even a bit about the universe and how I fit into it. (But that's a whole other story).
25 days after moving here, I made a major decision that begins a new book. Not a new chapter, but a whole other story within my life. It was a clear break. The moment of my epiphany was to arrive. I was still working with Dr. Gloria Moreira, as she held more answers and solutions than anyone I've ever met, (alongside Dr. Herbst). She inspired me to redirect my efforts back to my original plan and passion- holistic medicine. It didn't matter than I had no idea how to achieve this goal. I was already liberated from all other career paths. I wrote up a list of all possible things I could do, and the thing I circled about 10 times that I wanted to do the most was
MEDICINE
I had to do it. I also saw absolutely no way to do it, seeing as all ND schools were not available to me. It just so happened that when I moved, I moved in with a cousin of mine who was close friends with one of the CEOs of a school called Quantum University. Being the skeptic I was, I researched for hours every day for about 2 weeks. My initial conclusions are far from the conclusions I have today. I am so incredibly grateful for being able to attend this school and that someone had the courage and wisdom to start it 20 years ago (as I write this in 2021). I'm so grateful that there exists a school not exclusively for people who are severely left-brained. It is a place where I can learn medicine, and also think outside the box for creative healing. Since medical solutions are not 1 size fits all, creativity is absolutely needed. When this doesn't happen, you get people who fall outside the criteria for conditions (and are limited to what conditions those might be), and get discharged still being unwell. Or perhaps discharged for the 10th time for the same problem. I want to decrease this problem. This school is a school that offers a dual degree program in natural medicine: DNM- Doctor of Natural Medicine, and a Phd in Natural Medicine. I am completing both.
I never thought there was a form of medicine that could get deeper, more root-cause than naturopathic medicine. But as it turns out, this model, as amazing as it is, and as much as it offers a very wide variety of holistic modalities, is still based on a western medical model which deals only with the physical-and in 30 minutes or less. But what about the physical? Like...actual PHYSICS? And at the same time, something completely un-physical, but energetic? Even electric? This is when I discovered quantum physics. What I'm learning in quantum medicine is tying together all forms of medicine in a beautifully eloquent scientific model that is redefining the way people are healing. The quantum doctor's philosophies are based on the quantum model, where we are very much more than just our physical bodies, and those fields, those forms of energy that flow through us, connect to the physical in ways that can be empirically seen and tested. Please read my blog titled 'Quantum Medicine' to learn more about this high-tech, innovative, and ancient medical field. Without getting too specific, there are well-documented physical and philosophical theories behind the notion of consciousness and energy and how that relates to our bodies and selves. I never realized until recently how relevant and useful my degree in Psychology is! It's all coming together. I've been using my medical and physics knowledge to self-heal. Every new discovery adds to my tool belt to benefit my future healees. I am now learning how to blend traditional Chinese medicine with Ayurveda, indigenous Hawaiian medicine, energy medicine, and current medical knowledge into a special field called natural medicine and psychoneuroimmunology.
Sometimes, the root cause is not something one can see, and the deeper down you go into the waters, the stronger the flashlight you need.
XO, Basha
A little PS, from Einstein;
"Everything is energy and that’s all there is to it. Match the frequency of the reality you want and you cannot help but get that reality. It can be no other way. This is not philosophy. This is physics".
Epilogue
But wait! I can hardly call this an epilogue. The course of my life will indeed be long, and this is merely the amuse bouche. You're probably wondering what happened with my depression and exercise intolerance/fatigue journey? You've made it this far. As I complete this bio with my epilogue on September, 2021, there have been new developments. About half a year into my medical studies, I was reading a chapter in my textbook on depression, epilepsy, and heart rate variability. That's when I had a major eureka moment and realized it was my nervous system that was functioning improperly! Of course! This accounted for many of my symptoms including depression! I learned all of this in Anatomy in undergrad. The brain (neurology) controls everything. I read about the autonomic test before ever reading about the VNS implant. This would come later. But I was on the right path and sought a neurologist. I was given a massive, several-hour-long test called the full Autonomic Function Test. This has been the most difficult medical test so far.
This definitely had to be my golden answer!!
An explanation for why it is I have no stamina whatsoever and get severe chest pain.
Still, no depression treatment has been offered to me, and the results really were inconclusive. I'm not entirely surprised, as the general stuff does nothing to me, and nobody has concrete evidence of the specific physiological abnormality. At this point in my medical journey, I have developed quite a thick skin, so as usual, I gave my search for answers a rest, knowing that there is still one out there to be discovered. I discovered that many people like me, labeled with depression, also got negative results back. Astounding. Even such advanced technology caught nothing. I wanted to find the root cause of depression and physical symptoms- as they are all connected. I knew there was still a problem, even though it was not yet detectible by the means I had tried. That just means there must be another way. Depression deepens to an all-time low. I'm convinced that this is a mind-body connection, and both are responsible. Maybe there's a way I can help both. The symptom and the source...
Shortly after that, I discovered one of the most incredible pieces of medical technology in one of my medical books:
The vagus nerve stimulator (VNS) implant
The Vagus Nerve Stimulator is implanted in the chest and neck, and coils wrap around the vagus nerve to electrically stimulate it. This INCREDIBLE cranial nerve is part of the parasympathetic nervous system (PNS) which does everything in the body related to rest, relaxation, and recovery. It calms things down. The PNS helps suppress heart rate, while the sympathetic nervous system increases it. The two nervous systems work together throughout the body to regulate depression.
It has since been my mission right now to seek the VNS implant. After so many failed attempts at getting help, I knew this was the answer. This method is pretty extreme, but hey, my story is pretty extreme.
I recently met a lady who got the implant in a trial for her severe Crohn's disease and rheumatoid arthritis. She said she was sick for 15 years and was dying. Her GI tract was scarred and in pain, and her knees were so swollen from rheumatic inflammation that she couldn't walk. She loved to a different country to be part of the trial for 6 months and got the implant. She informed me that after her first VNS stimulation session, she didn't need to take her usual pain meds. How astounding is that?! It is very true that many diseases stem from inflammation. The implant was shown to reduce TNF-a, a very inflammatory cytokine in the body.
Brilliant.
I asked my neurologist for a script to see a neurosurgeon. He refused to help me any further, but told me to seek a doctor dealing with neuromodulation. This is very elusive. It can be a psychiatrist, neurologist, or neurosurgeon. VERY FEW doctors in the USA deal specifically with this and are able to approve the VNS implant. I saw a neurosurgeon at the same facility, and he basically told me he was just a surgeon and not someone who can approve the implant for any reason. The first neurologist here refused to give me a script to seea specialist for this. Not for surgery approval, just to see another doc who deals with approval. No matter how I asked, he refused to help. I got fantastic, detailed referral letters from literally every other doctor of mine. One good thing that neurologist did for me was give me a list of places to seek the implant at. Then I started my hunt. I will tell you that Mayo Clinic does not currently give VNS to anyone except epilepsy patients. They rejected me right away. Langone Medical Center does do them, but there were coverage issues (this surgery is at least $20,000). They said that the way to do it is through Northwell Health. They said CMS will cover it if I'm a research participant. I was interested in helping further this area of medical science, but I was drawn to a different location:
Vanderbilt University
I saw a presentation on YouTube by Dr. Andre Diedrich of VU about VNS implant research and its effects on depression! There seemed to be hope. There's so much promising early research. I was inspired to become a research participant. He urged those with this condition to participate through the university. I did as was suggested in this recent 2019 video. In 2021, I contacted their clinic to start the lengthy, grueling referral process. It involved getting a detailed referral letter from my GP, getting my vitals professionally taken by them and documented, and I had to bring all my diagnostic paperwork, tests, and medical records to my GP. She didn't play. So whilst flaring and being very weak and dizzy, I rushed around to the printer store several times in between eating to organize and print my life's history. I'll spare you the details. It was a lot. I sure as hell got it done on time for my appointment. I ended up in the hospital! From such exhaustion, dizziness, dehydration and stomach pain, I was taken by ambulance the next day to the ER where I spent 10 hours.
I would do anything to get this VNS...clearly.
Lesson learned though.
Chronic illness can not be pushed.
After several failed attempts, my doc and her staff finally faxed all the dozens of papers and referral letters to the Vanderbilt autonomic dysfunction clinic. It would then take 9 weeks to hear back from them for an appointment that would take place in 1.5 years!!!!!!!!! Gotta do what you gotta do. I waited. I heard back from them. It turned out that they don't do the VNS implant.
#$%^$&*^(&(&*(&*(^#^%$%@##$%$#$%%^%&$&*^()()(*^%$@!!@##%^()(*&^$%^$@#!!!!!!
Deep breath. I know how things go by now. I made a list of 10 alternative solutions in case I couldn't get approval for surgery this way. There was another way I could get approved. In truth, I've been struggling on and off my entire life. I'd say life has a melancholic undertone, sprinkled with sporadic moments of happiness. During my 9 weeks of waiting, I had already been in communication with VU's neurosurgeon in a different department; Neuroscience. Dr. Sarah Bick. I saw her professional profile on the Vanderbilt website and just had such a good, calm feeling. I told myself, "She will be the one to give me the implant." She told me she does the implantation, and if I've tried many meds and therapies for depression without success, theres a chance I can get approved for the VNS. She said to come see her in Tennessee for consultation.
So I took my crazy ass to Vanderbilt University in Tennessee!
On 08/19/2021, I saw Dr. Bick. What a sweet, brilliant lady. We reviewed my depression history and she explained the surgery. She saw no reason not to help me. FINALLY. Finally. Yes. But... I still didn't get a final answer for approval because, as usual, there were bumps in the road. I wasn't able to see her esteemed colleague and team member that day as was intended. Dr. William Petrie, another brilliant, compassionate doctor would give the final word about approval. So, a few weeks later, I flew myself back to TN for a crazy day trip to see this psychiatrist. We reviewed my entire life and I told stories I never thought I'd re-tell. He told me that "1%, of people, maybe even less, who went through what I went through would be standing here today." I was astounded. It seemed very true. Most people who went through the amount of fuckery that I went through in life would have killed themselves. I showed him a lot of determination to get better and a lot of resilience. Somehow, I had this. This is why he approved surgery for me. They want to make sure they're not messing with anyones nervous system if they are suicidal, and that no matter the effects of neuromodulation, I will be okay. He told me and I could barely contain my joy! As the session ended, he told me that I was a very motivated individual. I had tears in my eyes. I feel like he really understood me.
After the appointment, the following day, Dr. Bick messaged me and announced that she had also approved the surgery for me and felt it was right. Words can not describe my joy. I made a video labeled "I did it!" on YouTube. It is short and portrays my feelings well. Now, I wait. 2 months. I can't believe it!!! I will finally be getting the treatment of all treatments! It will help my brain, and therefore so many things. Even if my future tests reveal I have chronic fatigue syndrome, or mitochondrial dysfunction, I know it will help something in some way. I've seen videos of a drug addict
undergo the VNS surgery for exploratory purposes. A year later, he came back in clinic a changed man! He looked healthy and he said he never touched a drug ever again since his neuromodulation. It seems to be helpful in so many ways. Maybe this is my chance, and will no longer need to suffer under a grey cloud.
My relative asked me why I have such intense symptoms.
I replied, "Nobody gets off scott-free (from a lifetime of stress)."
This is why my practice will be dedicated to reversing the devastating effects of stress. I'm surprised I never got cancer. Dodged that bullet!
The connection between Stress and Cancer:
"...CG-GR (glucocorticoid and glucocorticoid receptor) binding normally signals homeostasis, but the HPA axis may become GR-resistant during chronic stress.
The GR facilitates a healthy immune response.
Thus, a blunted GR-sensitivity leads to weak immune responses,
suppresses proinflammatory responses, and prevents Th1 cytokine levels
from reaching the levels necessary for disease fighting.
Natural killer cells that normally prevent tumors and microbial infections
are less cytotoxic than Th1-cells, which may explain, at least in part,
the observed susceptibility to cancer during chronic stress."
(Chopra, Househam, & Peterson, 2017. The Effects of Stress and Meditation on the Immune System, Human Microbiota, & Epigenetics).
Stress switches on genes for diseases that would otherwise remain dormant. I am an extreme example of what can happen to someone from intense, long-term stress in early life. It never switches off. You have to go in there and switch it off yourself. Meditation, music, relaxation, vacation, massage, acupuncture, supplementation, or even surgery... You do whatever it takes to have a normal life.
Sometimes, we have to re-wire our brains through neuroplasticity to create a new reality.
"What fires together wires together"
~Donald Hebb & Joe Dispenza
Neurons associated with stress that are continuously firing, end up staying connected in these learned pathways. Neuroplasticity is an incredible thing to understand and take seriously. My DUTCH hormone test (something I highly recommend elusive patients like me to take) kept saying "HPA axis dysfunction" all over the place. This is the Hypothalamus-Pituitary-Adrenal axis in the body that works as a cascade of physiological events. The 'H' signals the 'P' signals the 'A' to make hormones like adrenalin and cortisol in times of wakefullness and stress. Mine was stuck on ON. No matter what I would try to remedy the problem, no matter how relaxed I felt, my physical brain was molded and wired to be in stress mode. This, Dr. Petrie said, is what makes me a perfect candidate for the VNS implant.
As I wait for this incredible life-changing surgery, I was approved for the best test to see exactly what's wrong with my really bad fatigue. What weird timing, right???! After everything, medical science has finally found a way to properly evaluate me. This is the invasive cardiopulmonary exercise test (iCPET). It, I firmly believe, is the last (major) test available & the last diagnostic test I will ever need! It is scheduled 2 weeks after surgery. Yikes. But it's the end of the year, insurance policies don't last forever, and this is the first time I'm able to take it! I never had good insurance like I do now. I also had to fight tooth and nail for this, going through an appeal process, accidentally being put on a plan I never signed up for, and a bunch of other mishaps. This, I believe, was the test my first immunologist had in mind for me to take. Unfortunately, patients have to go through a process of taking lower-tier tests first. It makes sense. The cardiopulmonologist who oversaw my metabolic stress test informed me about this test and where to take it. I will say, some of the most asshole doctors I've ever had sure know how to refer patients to the best places. This test in the town next to me would cost $63,000 today, as they don't take this insurance. In Massachusetts General Hospital, this would cost $40,000 without insurance. Im extremely fortunate that my price quote is $0 with this insurance! They accept it in-network.
I will have the iCPET test done at Massachusetts General Hospital!
This is the birthplace of the iCPET, created by Dr. David Systrom. This test knows how to differentiate deconditioning (not being in shape) VS genuine diseases. It measures how much oxygen and carbon dioxide is flowing through the arteries and heart in real-time as you exercise on a stationary bike- which turns out to give more accurate answers about the heart than a moving treadmill by excluding variables. It's extraordinary. If this test doesn't capture the issue, I need to return to my home planet where others have similar anatomy as me and an explanation! Luckily, the catheter they will insert into my neck to go down to my heart will be on the right, opposite of where my implant will be in my neck. Plus, the VNS won't be turned on by that point yet, so nothing will interfere with results.
Everything is working out so well. I will have to keep very busy the next 7 weeks
until my VNS surgery and iCPET test. I'm just so excited. I can't wait to update this bio
after I finish my health journey once and for all,
and my new life begins.
I'm back!
It has been about two years and things have happened quite differently than planned.
I have had 2 iCPETs and no VNS surgery! I have been through a massively long process throughout these two years to try to get insurance approval for coverage for the VNS. I have appealed about 5 times, having gone through the process so many times over, and have gone through the other steps to try to get it. I hired a lawyer to draft up my appeal papers and provide evidence that this works for treatment -resistant depression (the only way this is approved if you don't have epilepsy), unfortunately), which has been proven effective through a multitude of large studies. What is crazy is that it is FDA cleared for those 2 conditions, it is just that insurance doesn't want to pay. Mental health is egregiously disregarded in the United States, and is shameful. As soon as it was FDA approved for depression, most insurance companies began to immediately report that it was not proven useful enough for depression, and failed to update their policy since 2005- exactly when it was FDA approved!
Regardless of the stellar appeal, 7 doctor recommendations for surgery from different specialties including the neurosurgeon and her team of psychiatrists (it is considered neurosurgery after all), the external reviewer who is independent of the insurance company-or supposed to be, denied coverage. They were found to have gross negligence on 6 accounts, one being that their objective is not simply to uphold the decision of the insurance company. They also didn't acknowledge the provided research. Their response was unwavering and further disregarding. They could only made another excuse for refusal, saying I hadn't gone through more mild modalities for treatment first (for depression), like TMS - transcranial magnetic stimulation or ECT- electroconvulsive therapy. ECT will for sure be outlawed in the next couple decades. It is barbaric, requires anesthesia, puts your brain through epileptic seizures while you're under, and has the very real potential of causing significant memory loss. A friend of mine did ECT and has large chunks-years of his life missing. Family has to show him pictures of events to remind him.
I chose to do TMS to please these bastards. It was very difficult, having to go in every single day without
fail except weekends, and having painful snaps of energy pick at my brain like a little, but very sharp icepick. TMS had no positive effects on me. I was only more upset, stressed, and in pain. Total waste of time, money and energy. And when I filed for an external review, all they said was no. I didn’t try ECT. First, it’s NOT mandatory for VNS surgery, and it didn’t matter that I didn’t do ECT. If it wasn’t about ECT, it would have been about something else they wanted me to do. Simply, insurance will never pay. I switched insurance companies the following year and got the same denial letters and external review denial. A total waste. Putting in more energy into any insurance company would be a complete waste of time. I promptly terminated my shitty insurance, being sick of everything. They didn’t even pay for my regular meds.
May 28, 2024.
I got approved for vns surgery coverage!
2 years ago I got married. 1 year ago I had a wedding party. This year I’m getting the vns. This or next year I’ll be graduated. The year after, I’ll have my book published.
My life plan is to have 1 incredible thing happen every year. That’s my life-long plan.
This is wild. After 5 years of searching for the right kind of doctor who deals with neuromodulation, failing at doing so, getting at least medically approved by all 8 doctors I saw in the meantime, finding the right doctors in TN, getting medically approved for surgery, getting denied coverage by health insurance, cancelling surgery several times, hiring a lawyer and appealing insurance many times, getting denied, getting external reviews, getting denied, switching insurance, getting denied all over again, waiting a year for a psychiatrist in town to move here so I can be titrated with ease even before getting re-approved for surgery, waiting another year for him to move his practice and officially open, getting approval by him…Liva Nova decided to donate the implant device to me!!! I’ve now been working more closel with my patient advocate there. The VNS is a $5,000 device. I am finally going through what Liva Nova calls a VTAP process (hopefully) to get the implant donated. DONATED!! Isn’t that amazing?! My patient advocate had me ask the surgeon to donate her surgical time to me, applied for financial aid from the hospital, and I actually got approved for 100% coverage!
For the past week, I’ve been getting such conflicting information as to whether I’m financially covered for surgery or not. Talk about having a total nervous breakdown. I’ve never been so yanked around as I am now. After so many times, you start to not care. I told my surgeon that, knowing everything and that the hospital will likely send me a bill (just for lack of a better system), I want the surgery. (I’M deciding now)! She agreed. I’m awaiting a consult with a new psychiatrist. My old one ditched town. Everything that can go wrong has done so. The VTAP donation process might also not be working right now, for some reason. But I likely don’t need it since the hospital is allegedly paying for everything. So now, the psychiatrist later this month will approve me for surgery and send my clinic notes to the surgeon. Then she will FINALLY approve me for surgery. I might have to consult with her again as well before surgery, as it’s been several years since I was last evaluated. Now, we wait! Now all we need to do is apply me to officially get the VNS donation from Liva Nova- the medical device company, by getting the surgeon’s letter of donation sent to my advocate, get the VNS officially donated, and I can schedule surgery! I finally got the digital approval letter from the hospital and sent it to the surgeon and advocate, so now I wait for the donation and surgery date.
Tennessee, here we come! For real this time. But I’ll only really believe it when it happens.
It's August of 2024. Surgery was scheduled again and cancelled again a week before surgery day.
I feel so unbelievably devastated and frustrated and confused. But I think I finally understand what happened and what the hospital might be thinking and why they kept asking me questions over and over. It’s not that anyone thinks I’m sitting on a pot of gold and just want to make the hospital pay for surgery. I do believe my doc always understood that about my finances, that I couldn’t pay. (It otherwise wouldn’t have been such an arduous task to get insurance approval). BUT because of insurance confusion, it probably looks like I'm trying to hide that I have insurance who's willing to pay, which isn't true... Yes, I’ve had insurance at several points throughout the year, BUT never one that was willing or able to pay. She is are aware I had United early this year... But just because I had (intermittent) insurance doesn’t mean they approved anything. I completely understand now what it looks like- that I just wanted the hospital to pay or be stuck with the bill unpaid without me or insurance. BTW something I would never do. Everyone deserves to be paid! Fully. I have United and Cigna cards still in my wallet. I forgot to throw them away. I had United earlier this year, they denied me to the fullest extent, I got so dismayed at them, I cancelled my policy. We scheduled surgery. Everyone understood that I was asking for a donation because of the United denial. My patient advocate at Liva Nova told me to start the donation process with the doctor and then the hospital (for the VTAP process), and the doc guided me through that financial aid process with the hospital too. (The hospital financial situation was never clear to begin with though. No idea why they're so criptic or why they would send me a fake approval letter). But the real confusion came when I put my second, more recent (albeit cancelled) Cigna insurance card on file at VU for another doctor. I stupidly wanted to multitask and see another doc for an unrelated issue while I was in town. The whole issue is that it looks like I’m lying about not having insurance-insurance that the hospital thought would pay. THAT’S why insurance matters. Now I get it. They were more focused on insurance and not helping me and for my depression bcz it looks like I was lying. I didn't get that before bcz I Knew that insurance didn’t approve to pay. I never lied about that. I WANT everyne to get paid for their work. I just took that as fact. Now I totally get why the doc was upset. I’ve had 2 different insurances this year. VERY CONFUSING. I only got the second insurance more recently bcz I needed to see my GP and the psych for surgery approval (which would have been $400 out of pocket)!!! I needed some insurance. There was a big lapse of coverage this year during the time we spoke. Shortly after I saw the psych, I cancelled Cigna. Cigna was just to be able to afford regular doc appointments. It truly had nothing to do with paying for surgery. Insurance has never done anything for me and never will, so Cigna was cancelled as well.
So, late at night, I scheduled this other VU doc. The website kept asking for an insurance card be put on file. I was so sleepy and not thinking straight and forgot that my card was expired a while back. I cancelled my apt the next day with the lipedema doc at VU bcz I remembered it’s expired and it’s just too expensive out of pocket, and too much to handle at the same time as surgery…My priority is being ablet to afford seeing Dr. Bick out of pocket and having surgery. With whatever I can, I need to be able to pay her and her office. She sees this card on file and thinks I'm insured!!! But it takes at least a month or more for the system to update. The whole time we were talking and prepping for surgery, I was either denied coverage via an active policy-which she knew, then didn’t have insurance at all, then Cigna very temporarily. And the brief period of time I was insured, they’ve never agreed to pay. Side note, the external review company gave me an approval letter to force United to pay-which was too late to redeem. I already cancelled United. I remember your staff asking me about this months ago but I forgot to follow up. I anyways couldn’t verify anything when the coordinator asked me to. Only several months later did I get the snail mail letter of the IRO’s overturn decision- AFTER I cancelled United and it was too late. . I thought it wasn’t even worth bringing up bcz it was already months later and the offer expired. I tried my hardest to get back on United during my lapse of coverage. I really did. And exhausted myself. I spoke to United for 2 hours and there was no way to redeem their offer to get back on their plan that promised to pay the hospital. It sucked because they denied me very early this year, and a month after I already cancelled, was sent this approval letter. It was devastating. A carrot dangled in front of my face. I couldn’t process the extreme disappointment and avoided talking about it. This has been the biggest game of broken telephone, for which I apologize. I wish more things were in my control, but they simply aren’t. This is all verifiable. I have both insurance cards and denial papers from all the external reviews. I truly did exhaust all my options with insurance from the beginning. This is the only reason I asked for a donation. And now I have nothing.
