'Cocktail' re-energizes PKD patient
Laura Campbell knows the power of a positive attitude.
It carried her through 13 years of illness and multiple treatments that proved ineffective.
In 2002, Campbell was teaching social studies and special education in the Estacada School District. On the first day of spring break, she started to do yardwork, and as she picked up a mound of molehill dirt, she felt as though all of the energy had drained from her body.
Six months later, the fatigue was still there, and she was diagnosed with chronic fatigue immune dysfunction syndrome.
Around this time, Campbell also began exhibiting symptoms of paroxysmal kinesigenic dyskinesia, or PKD, a movement disorder characterized by a series of abrupt, involuntary movements. These movements took the little energy Campbell had left, often leaving her confined to an armchair.
For more than a decade, Campbell lived with these symptoms. Shes been on disability from her job at the school district. She often slept 18 hours per day. In spite of these difficulties, Campbell never wallowed in self-pity. She kept her brain active with puzzles, visited the sick in her church community when she could and continued to try different medical treatments.
In 2015, Campbells steadfastness paid off, and she found a treatment that helped with her symptoms: the Myers cocktail.
Not only has this treatment helped Campbell, but its also the first time the Myers cocktail has been used to treat PKD.
A life-changing event
After the incident on the first day of spring break in 2002, Campbell continued to experience a variety of symptoms as a result of the chronic fatigue and PKD.
She was so exhausted that it was difficult for her brain to process basic functions.
When this first started, I laid on the couch for three days, Campbell recalled. I couldnt move, so I hadnt eaten. I was hungry, but I didnt know what to do. It took me three days to figure out this is hunger, and you have to eat, so what does that mean? It took me three days to figure out to call my neighbor for help.
Campbell also experiences a variety of flu-like symptoms due to the chronic fatigue. Prior the Myers cocktail, she often slept for over half of the day.
When Campbell experiences a PKD attack, shell experience a series of abrupt and involuntary movements. Shell also have trouble speaking.
Before starting the Myers cocktail, Campbell was experiencing attacks several times per day. They typically lasted around five minutes and were often triggered by loud noises.
PKD is estimated to occur in one in 150,000 individuals. Its typically treated with ant-epileptic medication; however, the side effects of the medication include fatigue and brain fog, which Campbell wanted to avoid.
The disorder was particularly problematic for her coupled with the chronic fatigue.
When I have an attack, Ill use up the little energy I have on the involuntary movements, she said.
Campbell said that before starting treatment, she was often unable to drive, walk up flights of stairs or participate in many other aspects of daily life due to fatigue and fear of experiencing a PKD attack.
A new treatment with tremendous potential
In May of 2015, Campbells primary care doctor suggested she try an IV treatment of vitamins and minerals, called the Myers cocktail.
Campbell noticed a difference right after the first treatment.
I walked out of there a different person, she said, stating that she had no symptoms of the movement disorder for one week after receiving the Myers cocktail.
After her first cocktail, Campbell went out to dinner with a friend, which was when she realized the treatment allowed her to think much easier than she had been able to since her diagnosis.
After we finished dinner, we got up to leave, and I usually follow her out because my brain cant process fast enough, she said. But this time I said, wait a minute, I think I can get us out.
The treatment has also indirectly helped with Campbells chronic fatigue.
It stops the movement disorder, so I get energy from it indirectly because Im conserving energy by not having those movements, she said.
Campbell receives the Myers cocktails at the National College of Natural Medicine in Portland, where she caught the attention of Mark Iwanicki, a medical student working on Campbells treatment with Dr. Leslie Fuller.
She responded (to treatment) so well, he said. She was sick for so many years and then she was instantly better. The dramatic results were really inspiring.
Iwanicki noted that this was one of the first instances of using the Myers cocktail for a movement disorder.
I found no studies of the effects of the Myers cocktail on PKD, Iwanicki said. I found very few case studies about PKD that didnt involve the use of ant-epileptic medications.
Typically, the Myers cocktail is used for a variety of conditions, including asthma, migraines, fibromyalgia and allergies, but Campbells case is the first of its kind.
Iwanicki and Fuller wrote a case study that was published in a February 2016 issue of the Naturopathic Doctor News and Review. Iwanicki received a first place scholarship for the study.
I thought that we really needed to get it out there so other people could learn about it, he said. Weve been able to control her symptoms in a natural and effective way with no side effects. Her entire quality of live has improved.
Iwanicki hopes the study will inspire further research on the treatment of movement disorders with IV nutrient therapies, such as the Myers cocktail.
Theres tremendous potential there, he said.
How it works
The Myers cocktail, invented by Dr. John Myers in the 1970s, is a treatment in which patients receive nutrients through an IV.
Campbell receives the treatment weekly. It consists of ascorbic acid, B6, B12, B Complex, B5, sodium bicarbonate, calcium gluconate, magnesium sulfate and selenium.
Iwanicki stated that the Myers cocktail is helpful because it gives the brain the nutrients it may not have gotten previously.
I think its helping heal something in my brain because it goes straight to the cellular level, she said. I dont absorb oral or liquid vitamins as well.
In Campbells case, Iwanicki believes the vitamin B in particular may be beneficial.
Research into B6, B12 and magnesium sulfate all show positive effects on a range of neurological symptoms, he wrote in the study.
Additionally, Iwanicki noted, pyridoxal phosphate, a form of vitamin B6, is a cofactor in the production of the neurotransmitter dopamine, a lack of which has been associated with movement disorders.
Campbell has been happy with her treatment.
It instantly controls my symptoms, Campbell said. (The Myers cocktail) is like a miracle.
A new normal
With slightly higher levels of energy, Campbell is now able to partake in more of the activities shes passionate about. Usually, she only needs 10 hours of sleep rather than the 18 she required before.
In addition to gardening and photography, Campbell enjoys visiting sick parishioners at Estacada First Baptist Church. Since starting the Myers cocktail, shes able to go more frequently than she was before.
Recently, shes also started building new shelves for her pantry.
The project is taking weeks, and a normal person might be able to get it done in a day, but I can say Im getting it done, she said. Its nice to have a visual reminder of that whenever I pass it by.
Though Campbell has higher levels of energy than she did before starting the Myers cocktail, she still needs to closely monitor her activity. She said she typically schedules one appointment per day.
I take it one thing at a time, she said. Everything still takes a lot more time than it used to.
She believes shes done well because learned to work within her limitations.
Its been about finding freedom in routine and limits, Campbell said. If I keep my routine, I function better. When my routines broken, Im like a deer in the headlights.
Over the years, Campbell has learned how to portion her energy, which allows her to do more than she could when she first began experiencing symptoms.
After 14 years, its hard to explain, she said. Its my new normal.
Today, Campbell lives on a working tree farm in Damascus with her cat, Sweetie. Though she lives alone, shes able to easily ask her neighbors for help if any difficulties arise.
Eventually, she would like to return to the classroom, but shes not sure when that might be.
I miss the kids, she said. I miss seeing the park they get when something clicks.
Campbell has always had a strong passion for education after getting a bachelors degree from Worchester State College in Massachusetts, she earned a masters degrees in educational ministries from Wheaton Graduate School in Illinois and special education from Portland State University.
Campbell said her background as a teacher was helpful when she was first diagnosed.
To help lessen my frustration, I asked myself what I would tell the kids, she said. I had to ask myself how I would manage it.
As much as Campbell would like to return to the classroom, she feels it would still be too chaotic for her now.
Typically, patients with PKD are on medication to control the symptoms for the rest of their lives.
Iwanicki hopes Campbell will eventually only require the Myers cocktail once a month.
Eventually it could be every three or six months, but its hard to say, he said.
In the meantime, Campbell continues to rely on a positive attitude while she moves through her day-to-day life.
Ive had friends ask if I felt like crying, she said. I do, but that would use up whatever energy I have, and then Ill absolutely not be able to do anything. Ill give myself a few days to mope around, but then Ill continue to do everything that I need to do.
To view Mark Iwanicki and Dr. Leslie Fullers case study, visit www. ndnr.com/neurology/paroxysmal-kinesigenic-dyskinesia-successful-treatment-using-iv-nutrients/
To help Campbell cover the cost of the Myers cocktail, which is not covered by insurance, visit www.gofundme.com/w5wkac4s