Hennie Fitzpatrick, MD, AFMCP
I treated Patient X while working in a new Integrated Medicine Center affiliated with a large hospital system in New Jersey. I did not have access to CRT, HRV, IV therapy, or neural therapy, and the patient chose not to do muscle testing. This patient had the sudden onset of severe, debilitating neurological and gastrointestinal symptoms and was then traumatized by a series of specialists who had no effective solutions.
(I will provide specific details of the treatment protocol, if requested.)
This case demonstrates that, regardless of the diagnosis or prognosis, if one begins with a stepwise evaluation to look for dysfunction, followed by gentle rebuilding (without overloading the system), one can obtain remarkable results. Please be encouraged to offer bioregulatory treatments that you already know. Do not hesitate to begin practicing in this way. Always remember to collaborate with the patient. Give your patient tools one step at a time and engage the patient in strategic planning along the way.
There are many treatment approaches to this and any case, and I invite your input.
I worked closely with a very skilled massage therapist and a gifted acupuncturist who had been trained in China without “translation” into allopathic medicine. Both of these colleagues embraced the patient’s initial skepticism and recognized that his illness had been exacerbated by 6 months of diagnoses and ineffective treatments. During the time spent to make a diagnosis his illness progressed and his spirit was completely broken.
Diagnosis: Idiopathic Choreoathetosis (random uncontrollable muscle movements with twisting and contortions of large muscles); Myalgic Encephalopathy (previously known as Chronic Fatigue); IBS with Diarrhea.
CASE PRESENTATION
This is a 22-year-old white male who presented with sudden onset of episodic severe muscle spams, involuntary muscle movements, debilitating fatigue and severe IBS.
He was in good health in his junior year of college (majoring in Computer Science and minoring in Fine Arts) when he began noticing random muscle tension and soreness particularly in his biceps and eventually in his quadriceps and feet bilaterally. Over the next week he started having involuntary contractions in various large muscle groups followed by tightness, pain and weakness. He developed severe diarrhea, abdominal pain in his left upper quadrant and fatigue.
His illness progressed quickly. He was forced to take a leave of absence in March of 2016 and was unable to return to school. I met him in October 2016 and by that time he was completely bedridden and living at home with his supportive and bewildered parents.
MEDICAL EVALUATION
Several specialists at both NYU and Cornell University have evaluated him. The Neurologist diagnosed Choreoathetosis and Myalgic Encephalopathy (this is a new medical name for what used to be called Chronic Fatigue Syndrome, to make it sound less descriptive and more medical).
At the initial visit, Patient X was sullen and resistant to many of my questions because he was resigned to the fact that his prognosis was very bad. He had been told that he would continue to deteriorate and was advised to apply for disability.
At our initial consult, Patient X and his father asked how much experience I had with treating Idiopathic Choreoathetosis (Patient X had chosen to consult with me because they would have to wait another 8 months for an appointment with an expert geneticist).
He had been seen for Myalgic Encephalopathy at a new ME Center. The physicians there were expert at creatively prescribing combinations of stimulants, mostly Adderall and Ritalin. Patient X did not tolerate these and therefore was told that his diagnosis of Chronic Fatigue/ME was incorrect; and he was referred to a rheumatologist.
The gastroenterologist diagnosed Irritable Bowel Syndrome with possible atypical Crohn’s disease although his endoscopy and colonoscopy with multiple biopsies were negative for inflammatory bowel disease, celiac disease sprue, H. pylori or giardia. In the past 6 months he had been tried on antispasmodics, antidepressants, anti-epileptics, NSAIDs and narcotic pain medications with no relief.
He was prescribed Ensure and Gatorade to treat his persistent weight loss.
He had some relief from his pain and restlessness from medical marijuana, which had been prescribed by the state marijuana program. In 2016, there was a short list of diagnoses that warranted the use of medical marijuana. The physician he consulted could prescribe marijuana for a diagnosis of Myalgic Encephalopathy made by another physician. Patient X was devastated when this diagnosis was “withdrawn” because he failed the treatment.
His parents were very concerned about his medical marijuana dose. His protocol was to smoke two varieties of marijuana every 2-3 hours except at night. This gave him some relief and improved his appetite.
ACTIVITIES OF DAILY LIVING
At our first meeting, Patient X reported that he was unable to read, be on the Internet or cell phone and had lost contact with all his friends. He watched TV for an hour or two per day, but could not tolerate the input from the TV for longer than that. He had given up all his daily activity but was able to spend time drawing or making small sculptures between episodes of pain and fatigue.
Before this illness, Patient X was an avid reader and self-identified computer “nerd” with a good group of like-minded friends at college. He was not athletic, but did go to the gym at school to run on the treadmill, lift a few weights or swim for 30 or 40 minutes 3 times a week.
He got dressed every morning but spent the day not doing anything except managing his illness. His muscle spasms described as “Charlie horses” occurred randomly mostly in his arms and legs as well as in his chest muscles. He had spastic incontrollable jerks and flailing of his extremities with no identifiable trigger. He was always awakened at about 7am with severe abdominal pain followed by diarrhea and excruciating colon pain and spasms. Usually he had to return to the toilet multiple times for the first 3 hours of the day with bouts of diarrhea followed by the sensation of being unable to fully defecate.
His diet consisted of fresh fruit. His mother quit her job in order to care for him. She and Patient X were extremely well informed about supplements, special diets and liquid nutrition, but he tolerated only fruit (up to 7 lbs. a day) and nothing else.
PAST MEDICAL HISTORY
Patient X had several months of severe painful constipation starting in June 2013. He attributed that to the 3 weeks of several antibiotics prescribed for pertussis in April of 2012 and to his “college” diet. He presented to the Emergency Room several times during the summer of 2013 with severe abdominal pain and vomiting and was diagnosed with constipation. He was treated by a gastroenterologist with MiraLAX, Mag Citrate and stool softeners and was on a FODMAPs diet for the summer. Constipation and abdominal pain resolved and he returned to school.
He had had no other major illness, injury or hospitalizations according to his history and medical records.
OF NOTE
Term delivery traumatic with a prolonged difficult labor. Initial APGAR of 2, spent 24 hours in the NICU unclear what treatment received, released home. He was breastfed and had colic for the first 18 months. Parents described this as agonizing for them: he cried and was very difficult to console for at least 3 hours per day until he was a toddler.
Otherwise normal growth and development. No difficulty starting solid food; no digestive problems as a child. He grew up eating a wide variety of whole foods with minimal processed or fast foods.
No history of asthma or any allergies, no frequent antibiotic use, no eczema, no mood or sleep or energy disorders, no joint or muscle pain, no history of Lyme’s Disease, herpetic illness including EBV, no genetic SNPs including MTHFR. He had a thorough standard lab testing with no significant finding except for elevated Malonic Acid in urinary organic acid testing.
He had had an EEG, full cardiac workup, 2 MRIs of the brain, full GI, Neurologic, Rheumatologic and Psychiatric workup.
SOCIAL HISTORY
He was a shy child who was gifted academically. He reports being bullied at school with some difficulty making friends in grade school. By the time he was in Middle School he had several friends and he reports that with the help of his parents he “never let the bullying get to him” meaning that he avoided or ignored the mean kids. He was not interested in dating in HS.
Has dated since being in college, but has never had a “real” relationship. Chose not to give any details except that he vacillated between being bisexual and asexual.
Intact, loving family. Father is a successful businessman, mother is a psychologist, and he has a sister who is 2 years younger. Younger sister diagnosed with gluten sensitivity; otherwise in good health.
Family hobby is raising German Shepherd pups to become Seeing Eye Dogs. In high school, Patient X used recreational marijuana but did not like the effects of alcohol or smoke cigarettes.
He never participated in school sports, but he learned karate, receiving his black belt in high school. Stopped doing karate when he went to college.
Patient X travelled in Mexico and India for a year after High School and had several episodes of Traveller’s diarrhea, easily treated with antibiotics.
He thoroughly enjoyed this gap year, made friends and felt well.
Significant history of traumatic stress
I was unable to get this part of the history until our third visit. During our initial intake, when I said “tell me about the worst things that have happened to you” he simply stated, “I cannot go there with you.”
At the third visit, Patient X began our check-in by saying, “I am always asked about traumatic events and I know that they are only asking because they believe that my symptoms are ‘psychosomatic’ and actually they are not listening. I want to tell you a few things that did happen to me, but please do not ask me a lot of probing questions.”
At that visit, he volunteered the following:
In 2012, as a freshman in college, he was arrested for marijuana possession and sentenced to community service. Being arrested was extremely traumatic because he had never been in trouble with the law, because he was the only one “caught” even though several of his classmates participated (but he was the only one arrested). He reports that his parents were supportive and forgiving but also worried about his pot use. They felt that he needed to learn to stand up for himself and to resist peer pressure.
His parents strongly encouraged him to participate in a summer wilderness program after his arrest. Patient X reports extreme physical, emotional abuse while there. He absolutely could not give any specific details of the various abuses. While telling me about this experience he said there was one situation in which he was being taunted/shamed by his peers and the counselors did not help. On another occasion, someone was sexually abusive but when he tried to report this, he was shut down. He had no other details to share.
He completed the wilderness program. While there, he did complain to his parents that he was not happy, but never told them specifics.
Before returning to school, he saw a therapist, but this was unsuccessful. Patient X feels like once he was back in school he was no longer bothered by the experience.
PHYSICAL EXAM
Significant findings
Sad appearing, thin, pale white male; cooperative, low voice, flat affect, 30 lb. weight loss in the previous 6 months.
Good dentition, no fillings, root canals or other dental procedures (did not visit a biological dentist, though this was recommended).
Severe bilateral muscle tenderness of biceps, calves and in thoracic spine.
During exam he had several episodes of choreic flailing of arms or legs, followed by muscle spasms and fasciculations.
Severe abdominal tenderness in all 4 quadrants.
Fingernails were brittle and short with centralized white spots of the nail beds.
Long conversation about my understanding of bioregulatory medicine, and discussion of my expertise in disregarding the prognosis and suggesting a new diagnostic plan that involved looking for dysfunction in the functional matrix and restoring function. I directed all of my questions to Patient X even though initially he was detached and unengaged. His parents provided multiple details, which he often disputed. His main request was that I understand that the marijuana he was using was his only relief. His parents added their observation that the marijuana seemed to make him less alert and that perhaps the numbing effect was counterproductive in that it contributed to his already overwhelming fatigue.
After obtaining a full history, I retold Patient X the history he had given and made corrections to my understanding.
For the clinician, it is always useful to retell the story and then to pay attention to corrections the patient makes. By retelling patient history you are confirming that you were listening. Pay particular attention to details that the patient corrects because these are the salient ones.
I agreed not to make any suggestions about the marijuana dosage.
I suggested a variety of tests that might be useful for an initial evaluation. Patient X’s parents agreed to all of the tests, but Patient X did not.
He asked me to choose the two most important tests and requested that I not order any more blood tests.
Initial evaluation was a comprehensive stool analysis and an adrenal stress test (4 samples in one day for cortisol) and DHEA.
Patient X was on a variety of supplements, none of which helped. I recommended that he only take whatever helped his symptoms. His mother was very anxious that I prescribe a diet. Patient X insisted that he was eating fruit because that was all he could tolerate.
TREATMENT PLAN
Send tests in as soon as possible;
Go outside for 10 minutes twice a day;
If possible, spend at least 60 minutes each day drawing or sculpting. Invited him to bring some artwork with him to the next visit.
Summary of Treatment
Most importantly, Patient X needed to guide his own progress and initially add supplements very slowly.
STOOL TEST
Severe dysbiosis with overgrowth of Proteus, Citrobacter and Klebsiella
Moderate yeast overgrowth (unable to identify)
Elevated sIgA, lysozyme and lactoferrin
Treatment
Probiotics, S boulardii, L glutamine and slippery elm for inflammation EPA with DHA increased slowly to 5000 mg per day.
Repairing his gut was the first step.
Proteus and Klebsiella produce specific neurotoxins which cause depression, anxiety and fatigue. These were eliminated using Uva Ursi, Grapefruit Seed Extract and Oregano.
A leaky gut causes IgG food sensitivity, which triggers more inflammation, increases food intolerance.
The severe muscle spasms in his extremities and in the colon began to resolve with this protocol.
Leaky gut causes malabsorption and then, regardless of the quality of the foods or supplements taken, nothing is absorbed or assimilated and healing does not occur.
Malabsorption leads to micronutrient deficiency, which causes severe muscle contortions.
Without sufficient micronutrients, detoxification is slowed and cells cannot regenerate or repair.
The inflammation in his bowel slowly resolved. As that occurred, Patient X began to add tiny amounts of other foods into his diet. We started with an Elemental Diet supplement of easily absorbable essential nutrients.
I encouraged the addition of a variety of good fats into his food and he began to eat small amounts of prebiotic and probiotic foods.
Adrenal Stress Test
Showed profound adrenal fatigue. Not surprisingly, his cortisol level was flat. Loss of the diurnal cortisol rhythm is an endocrine response to profound stress.
Adrenal fatigue triggers insulin resistance, low testosterone, thyroid dysfunction and lowers endogenous balance of serotonin, norepinephrine and dopamine, leading to depression, muscle fatigue and inflammation.
He was very interested in the explanation of these test results and in understanding how dysfunction in these two systems could cause all his symptoms.
He started a glandular cortisol taking 1 at dawn, 1 at 11 am and 1 at 3 pm, and increasing to 2 capsules each time of day and then 3 capsules each dose.
Before this could be fully effective, we had to wait for his absorption repair. He continued to work with the massage therapist and the acupuncturist.
LIFESTYLE TREATMENT
A key component of ALL biological treatment is through improving lifestyle choices, including diet, exercise, relaxation and play.
Every visit included a diet check-in; Patient X returned to eating whole, unprocessed foods. His initial plan included going outside for 10 minutes a day.
Eventually, he started taking 30-minute walks or doing other gentle exercise daily.
He had no interest in learning to meditate, but was willing to explore and expand his artistic talent. During his recovery, he discovered glass blowing, which became a passion for him. He attended instructional classes, which motivated him to start driving again so that he could spend time in the studio. He researched the possible toxin exposure to glass artists and avoided these.
At first it was extremely difficult for him to add this in; eventually he saw it as one of the most important therapies.
CHELATION
After 3 months, Patient X had gained about 10 lbs., the choreic muscle movements were very infrequent, and his energy was returning. He still complained of some muscle tension and fatigue and his concentration and focus were still not improving as he wanted.
I reviewed with him the full evaluation I had proposed at his initial visit and he requested a chelation challenge for heavy metal evaluation. His mother had many amalgam fillings while pregnant with him. When tested, the cord blood contained 3 times the amount of heavy metals found in the maternal system.
I offered both oral and IV heavy metal challenge and he chose oral challenge. Results showed very high mercury toxicity and the chelation challenge was hard for him to tolerate. Chlorella and cilantro and parsley with electrolyte support and 2 grams of Vitamin C per day in divided doses resolved the chelation symptoms.
We then initiated a combination of oral and IV chelation. Patient X sometimes could not tolerate chelation with oral chelator and was encouraged to proceed at his own pace. His mercury levels were declining, but slowly, so he opted for IV chelation every 2 or 3 weeks. Alternating oral chelation with IV chelation was successful.
Within 3 or 4 months, Patient X was much improved. He guided his own treatment protocol. What worked best was for me to provide information about the interconnections between his gut, neurologic, endocrine and detoxification systems and he chose his own treatments guided by his symptoms and his returning sense of wellbeing.
I continued referring to the role that PTSD plays in any chronic illness. Patient X had been in psychotherapy briefly several times in the past and had found it invasive and annoying. He was also adamant that he would never be able to put into words details of the trauma on the wilderness trip.
At one office visit I told him that there were some very successful somatic therapies that could mitigate the damage done by PTSD and described these. Patient X decided to consult with a therapist who was trained in Brainspotting by David Grand, PhD. After 6 to 8 sessions with her, Patient X reported that he was now feeling better than he could ever recall.
He had missed a year of college and returned to finish his senior year. As promised, I never discussed the dosage of marijuana that he used and as he recovered, he slowly stopped needing it.
He graduated from college, and is working as a computer game designer part-time until he can make a living as a glass artist. His portfolio includes a collection of pieces he calls BioMed, which he said were inspired by the notion of little beasties, good and bad, that inhabit our guts.