Now, I am a wife and mother, but not long ago, I spent a decade of my life in intolerable chronic pain and illness. While those with my previous diagnoses are told there is no cure, I however, fully regained my life and health, and it came about through a treatment you likely have not heard before (I had not). The treatment is called Limbic System Neuro-Rehabilitation, but more on this shortly. It took me 10 years to find an answer, and my wish is that my story leads you to effective treatment in much less time. I am humbled to share the story of my recovery so those with chronic and mysterious illnesses may have hope in their own recovery. This is my story, written for you with much love and admiration.
By 2009, at age 19, I developed severe Dysautonomia, also known as Autonomic Nervous System Dysfunction. My accumulated list of clinical diagnoses from Medical Doctors included:
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Fibromyalgia (FMS)
- Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS)
- Multiple Sleep Disorders (including Atypical Narcolepsy)
- Irritable Bowel Syndrome (IBS)
- Pollen-Food Allergy Syndrome / Mast Cell Activation / Food & Environmental Allergies
- Movement Disorder / Non-Epileptic Seizures
- Multiple Chemical Sensitivity (MCS)
- Electromagnetic Hypersensitivity Syndrome (EHS)
- Depression and Anxiety
Other conditions I had were mitochondrial dysfunction, adrenal fatigue, leaky gut syndrome, multiple latent viral infections including Epstein-Barr and Roseola, systemic yeast infection (Candida), recurrent bacterial infections, heavy metal (lead and arsenic) toxicity, and suspected Lyme/Bartonella/Babesia infections. Due to the immense discomfort of these conditions combined, depression and anxiety were natural additions to the list.
However, the approach of Limbic System Neuro-Rehabilitation was recommended to me by my Functional Medicine MD after we had exhausted all treatment plans recommended by the Mayo Clinic and his well known practice. In October 2012, I watched the Instructional DVD Series offered by the Dynamic Neural Retraining System (DNRS), and in April 2013, I attended their 5-Day Interactive Training Seminar. Even surprising to me, it was this treatment that made all the difference. With this protocol, in less than one year of attending the Interactive Training Seminar, I went from being reclining wheelchair-bound to making a complete recovery from all the conditions I had accumulated. Most significantly, I learned that at the heart of my growing list of diagnoses was an acquired Limbic System Impairment – a condition my doctors had never used to describe my progression of illness. There is no other way to describe my experience other than my life before Dynamic Neural Retraining, and after. We will dive deeper into the process of my recovery, but first is what my life was like before I found DNRS.
While in high school, I began experiencing a growing list of pollen allergies, food allergies and sensitivities in addition to chronic sinus infections, exercise-induced asthma, and digestive complications and pain. Years of allergy shots only exacerbated my existing allergies and led to a development of more allergies. I did my best to deal with the stress of academia while my allergies worsened alongside my older sister’s own struggle with Lyme Disease that affected her Central Nervous System.
During this Allergy Skin Test in 2006, I reacted to 54 of the 76 foods, pollens, and animals tested. I was given dual EpiPens as I was told I would need both, oral antihistamines, emergency inhalers, and was recommended a regimen of nasal washes. While these did not resolve my allergies, they kept me somewhat afloat. This test was taken early on in my illness. Had this test been conducted later on, we are sure I would have reacted positive to every antigen tested.
While I attended college to pursue engineering, everything fell apart. First, I found myself unable to walk up even a flight of stairs. This was incredibly challenging and worrisome as I was a full-time student living on my own. I soon learned that I had contracted mononucleosis (Epstein-Barr Virus) and suddenly developed Postural Orthostatic Tachycardia Syndrome (POTS). My heart rate at rest was 135 bpm, and even while asleep, my heart rate sped along at 120 bpm. Upon standing, my blood pressure read 80/60. At the same time, I had very painful and persistent urinary and uterine bacterial infections, a systemic fungal infection (Candida), painful plantar warts, and heavy metal (lead and arsenic) toxicity. I underwent series of unsuccessful treatments including multiple rounds of anti-virals, antibiotics, anti-fungals, wart-removal surgery, and one attempt at metal chelation therapy. The anti-viral (Valcyte) was so volatile, I was rushed to the hospital via ambulance after I had passed out in a bathroom on campus. I was later told that my heart rate was inaudible by stethoscope and my blood pressure was so low it did not register on their blood pressure cuff. Needless to say, I discontinued the medication Valcyte after the second time it sent me to the ER. In terms of antibiotics, as soon as I finished one round, immediately I required another as the infection would return in full force. The anti-fungal (Diflucan), I was on for several months at a time, always requiring another course after I had completed another half-year round. And no matter how many times the Podiatrist removed the warts on my feet, they came back as if they had never left. It was clear to all of us that my immune system wasn’t doing its job, but at the time, we had no idea why.
All the while, each of these treatments further weakened my body and overloaded my nervous system. I became incredibly resistant to sleep – requiring unusual doses of medication only to feel slightly drowsy. During this experimentation period to find medication that would help me sleep, I had a serious reaction to a tranquilizer. From it, I developed a sizable movement disorder in the form of chronic non-epileptic seizures. I convulsed and twitched uncontrollably for hours on end which often resulted in a trip to the Emergency Room. Even after discontinuing that problematic medication immediately, my body continued to shake and convulse for 6 months later. After all of this, it felt as though the neural pathways in my brain had short circuited and fried – I later learned this was not far from the truth.
For the extreme exhaustion, I sought treatment from a well-known Chronic Fatigue Clinic. There I tried numerous combinations of supportive and energizing medications and supplements. The IV Nutrient Therapy was actually counterproductive, not to mention I became violently ill after each session. After this treatment, test results showed the mitochondrial output of my cells had significantly reduced and to that of an elderly woman. The treatment was not only ineffective, but it greatly worsened my condition. For the multiple latent infections I had developed, I was treated with Major Autohemotherapy (MAH) Ozone Treatment with Ultra Violet Blood Irradiation (UVBI) at my Functional Medicine Clinic. This IV treatment irradiates pathogens in your blood by having it injected with ozone that goes into a machine under UV light before being returned to your body. After four rounds of this treatment, I could no longer continue due to the severity and intensity of my reactions. Others often describe this treatment as chemotherapy for Fibro/CFS patients due to its disabling side effects.
I became unable to sit or stand for more than a moment – and even that was done with great difficulty and pain. As you can imagine, I put my schooling on hold and moved back to my parents’ house. I required full-time care from my amazing mother, Cheri. The chest pain, tachycardia, low blood pressure, and blood pooling in my legs limited me to a full lying down position. The blood pooling was so prominent, my legs swelled and become visibly purple if not elevated above my heart. Laying down however was also extremely uncomfortable. Between the incessant palpitations and excruciating nerve pain in my chest and foot that had involuntarily curled and locked all my toes closed, it was very difficult to remain in the reclined position which I was confined to.
Twice I went to the Mayo Clinic in Rochester, Minnesota. While there, boy was I impressed. The physicians are the best of the best. I was hopeful and excited to learn the information they were going to share with me. They were exceedingly proficient at naming me with a number of diagnoses (all the ones you saw at the top) after the intensive neurological and immunological testing was complete. But to my surprise, the team of doctors explained to me they were not sure a solution existed for me. Perhaps more interestingly, it wasn’t that my condition was something they hadn’t seen before, it was that an effective treatment was not known to them. Despite this hurdle of mystery, we continued on with their recommendations. Over the coming months, I was put on a combination of a beta-blocker to decrease my heart rate (Nadolol) and the corticosteroid (Florinef), thigh-high compression stockings, and high salt diet to increase my blood pressure. This combination somewhat stabilized my blood pressure and heart rate for a short time, but quite oddly, my chest pain and ability to sit upright never improved. This was perplexing for all of us. With my numbers improved, why was I still debilitated? From there, my parents spent more than $100,000 out-of-pocket on treatments and therapies to find the answer. In the end, I had seen over 35 medical specialists. I tried everything from traditional and experimental allopathic treatments to other various alternative and energy-based approaches only to get worse and worse still. I had the best, most experienced physicians, but my health state confounded even their expertise. No one had yet mentioned the treatment of Limbic System Neuro-Rehabilitation or described my condition as an acquired Limbic System Impairment. This would come much later.
An unfortunate side effect of the treatments I was receiving was further activation of my nervous system. It had become so hypersensitive that normal, everyday sounds frightened me to uncontrollable tears. I was unable to look at a TV, computer, or cell phone screen without getting an instant migraine due to Electromagnetic Hypersensitivity. My eyes were so sensitive to light, I kept them closed 95% of the day. I had particularly pronounced heat intolerance. Temperatures too warm exacerbated my POTS symptoms with painful blood vessel dilation, visibly purple blood pooling at the surface of my skin, and very low blood pressure at 60/40. Temperatures too cool caused more pain in my ice-cold extremities. The window of temperature I could tolerate was a 2 degree range from 73-75° F. I also developed more sensitivities to food. My diet dwindled down to only 12 food items including spices. My weight dropped below 100 pounds when I had rapidly lost 30 pounds, despite eating 6-7 full meals a day. In hindsight, we learned the reason for the weight loss was due to the medication I was prescribed for sleep – Xyrem, colloquially known as the “date rape drug”.
During the lowest times, my loving family fed me when I was too weak to lift food to my mouth. Then, when my adrenal glands lost their ability to produce a discernible quantity of cortisol, my doctors prescribed me high doses of the steroid. Unfortunately, a side effect I experienced with the drug was intermittent, uncontrollable rage. At one moment, my mind would be calm and the next, I was screaming and pounding my fists on the hard floor to the point of injury. I was absolutely terrified at what was happening and my inability to override these hulk-like “biochemical glitches.” Day after day, I was confined to my bed, and all I could do was listen to audiobooks on a CD-player that slowed down the rate of speech so it wouldn’t startle me. Despite my parents’ extraordinary efforts to find a helpful treatment, the pain and discomfort were persistent and intolerable. My outlook worsened when more than half my hair fell out. My condition was accompanied by intense feelings of despair, hopelessness, frustration, and no shortage of tears. I was bedridden and trapped in a body that did not function. Things remained this way until I found the one treatment that worked.
This is my reclining wheelchair. When I was not in my bed, I was in this contraption. By the time this photo was taken, I had already gained back the 30 lbs I had lost thanks to some healthy doses of bison bone broth. I do not have pictures previous to this time because before then, my family and doctors did not think I would make it, and we didn’t want to remember that time.
My family and I (my doctors too) did not see any way out until I began experiencing positive results with the Dynamic Neural Retraining System. I went on to make a complete recovery from all my chronic illnesses. To this day, I have not seen a more effective POTS / Dysautonomia treatment than Limbic System Neuro-Rehabilitation. I am medication free and I am not limited in any way by my previous state of health. I function at 100% and I enjoy a full share of activities including dancing, biking, weight lifting, and challenging my husband to rather competitive games of badminton! As if recovered life wasn’t sweet enough, my husband and I received the greatest gift of all – a healthy, wonderful family of our own. Our son was born in December, 2015. He is the happiest, strong little boy! While I have not implemented DNRS in three years, I have retained all of my health and medical gains even throughout pregnancy and beyond.
Many refer to my recovery as a miracle, but I think the real miracle is that my recovery occurred via the DNRS Program, a method that can be taught to others so they can experience their own miracle of recovery. In the end, the conditions my doctors and ourselves long thought were life long sentences, are turning out not to be…anymore.
Hopeful in your recovery,
More information on my progression of illness and tips for recovery is found in Wired for Healing by Annie Hopper. Published in chapter 10 is my complete medical summary and treatment list accumulated throughout my illness.
Please continue on. The following explains the treatment: