Oliver was a healthy, thriving baby for the first year and a half of his life, hitting all of the regular developmental milestones. He was focused and mild tempered. His mom, Danielle, chose to be as natural and wholesome as possible with his food so she nursed and when he started eating, she made her own baby food.
When he was about 18 months old, Danielle noticed Oliver starting to develop dark circles under his eyes. He had frequent colds, seasonal allergies and recurring ear infections with fevers. He had bronchitis and would have frequent bouts of pink eye; sometimes in both eyes. He was almost always sick.
Danielle took him to an ear, nose and throat specialist (ENT) and pediatric optometrist. The doctors would treat Oliver’s symptoms but no one was able to explain why he was sick so frequently or why he wasn’t getting better. Between 18-23 months he was in the emergency room (ER) three times with fevers of up to 107 degrees.
The third ER visit happened when Danielle was in labor with Oliver’s younger brother, Julian. Right after giving birth, Danielle went to the ER to be with Oliver. He wasn’t eating, had a double ear infection, bronchitis, and pink eye. She spent 12 hours with him while the hospital staff probed, pricked, and tested him for everything, trying to figure out what was going on. They left the emergency room with no new information, no reason why he was sick.
Remembering a story about a special doctor
Before Danielle had any children, she heard a story that stuck with her. A coworker’s son became injured playing sports and despite the best care, he couldn’t heal. Doctors suggested surgery. Danielles’s coworker took her son to the Chung Institute before consenting to surgery. Dr. Chung treated him then he was able to continue his sports career without surgery. That story stuck with Danielle. She knew she would visit Dr. Chung before she would consent to surgery for any of her kids. Oliver was going to visit Dr. Chung.
The first visit with Dr. Chung did not disappoint. After he examined Oliver, Dr. Chung explained that Oliver was sensitive to nickel and air born allergens. He thoroughly discussed nickel sensitivity and the nickel free diet with Danielle. He prescribed some supplements as part of his treatment plan. Danielle followed it the plan perfectly.
Oliver started to look better just one month after following the treatment plan. Within three months he was back to being a perfect, healthy baby boy. Oliver’s ears were clear and he hadn’t had any infections. A year and a half went by without so much as a sniffle.
This spring Oliver had a big allergy flare up. His pediatrician prescribed a steroid nasal spray and two other medications. Danielle really wanted to avoid those medications so she returned to the Chung Institute. Oliver was treated for nickel and seasonal allergies with LDI’s and supplements in the office and he continues those therapies at home.
Oliver is thriving since he’s been on the current treatment plan. He can do things he wasn’t able to do before his allergy treatments at the Chung Institute like visit his grandmothers house. Cats had always been a big trigger for his allergies and his grandmother has two cats. He would sneeze and become stuffy whenever he was around them. His eyes would swell shut and his face would get puffy so a visit to grandmas would mean he’d feel sick. After starting the therapies Dr. Chung prescribed he was able to visit grandma’s and even have a sleepover her house. He came home symptom free.
Olivia has always been a special person. She has dealt with different medical challenges from the time she was a little kid. Asthma was the normal kid challenge but she had unique challenges too. She has a long list of food allergies which really makes meals a challenge. She was born with a metabolic error that made processing B12 impossible. Olivia has two rare diseases diagnosed in childhood, one of which caused her to become legally blind. In other words, Liv was used to going to doctors and dealing with new symptoms and challenges.
Olivia needed two surgeries when she was 20. She had her wisdom teeth removed and a cornea transplant in a very short period of time. She had to take six weeks away from a job that she loved as a day care worker to recover from the cornea surgery. Things seemed to go well after the surgery. Allergy season was during that time and she was taking Benadryl for her allergies. She started to feel woozy but chalked that up to the Benadryl. The woozy feeling lasted and worsened. Within a few days, she was unable to stand up. Olivia was known in her family as being a bit of a drama queen. At first no one believed that she couldn’t stand up but they soon knew something was very wrong.
Her mom took her to her doctor but she had no clue what was going on. Maybe she was just really wiped out? She suggested a visit to a neurologist. Olivia really wanted to figure it all out and get better. Her six weeks off from work was coming to an end. Her boss wanted to her back at work. She couldn’t go back to work when she couldn’t walk. She really wanted to get back to work and take her life off pause.
By the time she got to the neurologist, her face was droopy and numb. The visit was strange; he ran different tests than she had before. She was told that she had Guillain-Barre syndrome. The doctor wasn’t exactly sure why but suspected that it was from the stress of her two recent surgeries. The doctor set up a nurse to go to her house for a week for treatments that would help.
Needing a walker. Living with pain.
It was the lowest point of Olivia’s life. Everyone in her world was concerned about her. She’d be out with her walker and get strange looks that said “why does this young girl have a walker?” Her entire family was concerned and supportive. Her brother would hear her fall during the night when she would try to get to the bathroom. He would get up to help then take her back to bed, even on nights he had to wake up early for work. Her mom would help her wash her hair and shower. She spent her time apologizing for all the things she couldn’t do. “I’m fine.” “I’m sorry.” Her mom reassured her “Sweetie, I’d do this over and over again. It’ll be okay.” But nothing was okay.
Using the walker was helpful but frustrating. Olivia started going to PT and OT to move better. She did get a little stronger. She didn’t need to use the walker all the time. As she got stronger and was able to move more she began to get nerve pain. She had never felt pain that intense before. She would wake up screaming in the night. The pain was absolutely unbearable. She was in the emergency room for pain three times in just three weeks. The hospital had a pain management lady come and ask simply “you want some oxy?” it was that simple. The oxy didn’t really help the pain. It took the edge off but that was it. Olivia wound up having mood swings and an upset stomach. She became mouthy, mean.
Olivia had been going to OT and PT for months with minimal result. They suggested she could try going to the Chung Institute. They told her it would be good but different. With everything going on and dealing with such intense pain, it was time to try different.
The first time Olivia went to the Chung Institute, she was the most miserable cynic. She met Dr. Brobyn and her team in February after her 21st birthday. Olivia walked in that day with no walker. She was sure of a few things one being that she couldn’t have Lyme disease since she was definitely not a nature girl. Olivia knew that she had already been at her worst.
Dr. Brobyn tested her for everything on her cart and tested all the medicines she was currently on. Then Dr. Brobyn told her that she had Lyme disease. Olivia stopped listening very closely and just tried to hold her emotions in check. Then she heard that her body didn’t “like oxycodone” and that she needed to get off of it. That wasn’t a bad thing to hear. She didn’t like being on it but how would she manage the pain? She waited for Dr. Brobyn to finish and the staff to leave, and then she cried her eyes out like she had been told she had a terminal disease. Most people would be happy to finally have a diagnosis, but this was not the answer Liv wanted. It sounded terrifying.
You see, she felt that all the other things she had coped with before affected just her. Olivia was the one who couldn’t see or drive and needed eye surgery. She couldn’t eat what everyone else could. Only she would need an inhaler. Lyme affected Olivia’s entire family-everyone around her because it made her more dependent. She didn’t want anyone to see her if they couldn’t look at her without making the “Oh, I’m so sorry for you” face.
She started taking an herbal remedy called Quintessence. Within a few days she was back to walking with a walker and felt sicker than she ever had previously. She had what is called a Herxheimer reaction-a temporary exacerbation of symptoms that can sometimes occur with treatment for Lyme disease. She had no idea what it was and called Dr. B who saw her right away. She went to her second visit using a walker. Dr. B explained what was going on. Olivia began low dose immunotherapy (LDI) and ozone therapy and continued treatments. Olivia knew Dr. Brobyn was a special person early on in her treatments. She took the time to listen; really listen. Dr. Brobyn would explain things and seemed to really understand. She was both a good doctor and a good person. This was something in Olivia’s experience that doesn’t always go hand in hand.
Click the links for more information about treatments
In just a few months, Olivia was dramatically improved. She was stronger and in less pain. In just five months, she was no longer taking oxycodone. Olivia was able to start working part time again in October. This past winter, she traveled to Disney to hang out with a friend who works there as a Disney princess. She was able to walk all over Disney-no fatigue, no pain, just a normal twenty two year old enjoying the Magic Kingdom. None of her friends or family; not even Olivia would have thought that possible just the year before.
Olivia is working part time 5-6 days a week now and is pain free. She still has some peripheral numbness and fatigue but Olivia pushes through it. She continues her visits and treatments at the Chung Institute and is looking forward to a healthy happy future.
“Wow, you look great! I hear you’re running marathons now. That’s incredible.”
“Oh my gosh! It’s so good to see you. I heard you’re back to work! How wonderful!”
I have heard both of the comments above in just the past week. They’re not surprising. I have conversations that begin similarly with anyone who hasn’t seen me in a few years. The change has been surprising, incredible even to me…and I’m living it.
You see most of the past twenty years have been struggling with painful muscle spasms, leg weakness, word finding, stuttering, balance issues and overwhelming fatigue. What people seem to remember most are things like helping me up from a fall, using my cane to herd children into a line at a school event or coaching field hockey “running” up and down the sidelines using my walker.
Specialists with no answers
In September of 1997 I developed some right shoulder pain with numbness and tingling that extended into my hand. At first, I thought it was just an old shoulder injury acting up. The feeling spread, it became difficult to use my arm at all. My family doctor sent me for an x-ray that showed some swelling in my neck. He suggested an MRI which showed an area of demyelization in my cervical spine. The doctor called to suggest I consult with a neurologist to rule out Multiple Sclerosis (MS). I hung up the phone and sat down sobbing. My 9 month old crawled up to me and snuggled in. It was as if she knew I needed something to cling to. I was hospitalized with worsening symptoms within the month.
Over the first two years of dealing with this myriad of symptoms, I went from specialist to specialist and received a new diagnoses and new prescriptions:
Infectious disease: “Maybe its Lyme. Lets try antibiotics” On IV’s for a month at home. No relief.
Rheumatologist: “I’ve got no idea but something is really wrong with you-go to Philly”. Wow, honesty. Would have been nice if he could have done anything to manage the pain. The Naproxen he gave did not touch it.
Rheumatologist in Philly: “You meet a lot of the Lupus criteria. Here’s some steroids.” Here’s 60 pounds of weight, facial hair that came as quick as the brittle hair on the top of my head fell out. Six months of depression, avoiding mirrors, destroying evidence of what I looked like.
Neurologist in Jersey: “Maybe you just have really bad PMS. I put my wife on some antidepressants for hers and she’s doing much better.” Are you kidding me?!?!?! I’ll show you some PMS.
Neuropsychologist: (to my mother) “So, did you hit your children when they were growing up? Was she abused in anyway? I think she has conversion disorder and has blocked out trauma from childhood.” Once again, are you kidding me?!?!?!
In March 1999, I suddenly became unable to walk or lift my right arm or speak clearly. I was sent to the hospital. There I was officially diagnosed with MS. I really wasn’t able to think clearly and have few memories of that time. I just wanted to be home.
PT visited to teach me how to use a cane before I left the hospital. No one in my house liked that cane it was an unwelcome guest. My three year old decorated it with pastel ribbons and bows. Instead of hiding the hospital look, somehow it brought it out more. I hated using that cane. I was still in my twenties but walking like an old lady. Using the cane was a constant reminder of what I could no longer do. I started collecting cooler canes and got rid of the hospital cane. No matter how cool they were, I never liked using them. When I was looking for pictures for this post, I could barely find any with canes in them. I’ve destroyed most of the evidence. No one would see me needing help.
Living with Ups and Downs
Life settled into a pattern over the next 15 years or so. During my good periods, I “only” slept about 2- 4 hours each afternoon. I was able to volunteer to help with activities for the kids and be present at different school events. I enjoyed being with the kids and their friends and appreciated all I could do.
During the bad times, I wouldn’t be able to do that. Each new flare I’d sink into an angry depression. The pressure in my head made it too hard to cry or yell or scream. My husband who was generally supportive would be frustrated by my depression and anxious about my health. We would argue more. My kids were anxious around me, they never knew when I’d be coming to quietly “yell” at them to be quiet or would get up to try making dinner or help them with homework only to fall right down.
We’d eat dinner together in the dark and I’d need help back to bed after because it was that fatiguing just to sit up and eat. The angrier I got the more I’d stutter and have word finding issues. I needed to learn to use a walker because my balance was so bad and neither of the kids needed a stroller anymore. Yes, I totally got away with not using a walker sooner because of the stroller. I was sad that the kids were growing up but sadder that I needed to add another assistive device to my world.
We took a trip to Disney-the biggest, most challenging, family exhausting place in the world and guess what- I needed a scooter to navigate that. My kids and I found a silver lining: handicap access to amusement park rides but that was about it. The longer I was up and doing things, the weaker I became. Big trips would exhaust me for days after, making all the symptoms even worse temporarily.
There were months during which my symptoms were really minimal. My husband and I even had another child during one of the good periods. I felt my healthiest during pregnancy. I was not on most of my medicines and had great energy- no symptoms at all the entire time. Within a month of her birth I had a huge flare, was on IV steroids and started back on all of my other medicines. My mind shut down along with my body. My husband, mom, older daughters, and Nick Jr. swept in to ‘mother’ the baby.
I developed a great relationship with my physical therapist who consistently helped me regain strength and find a way to meet challenges. Everything seemed to stabilize with flares here and there. I was resigned to living my life with these challenges. After all, everyone has challenges, right?
Chest pain, Palpitations and Migraines
Then in September of 2014 my heart started to get fluttery here and there. Sometimes I would have difficulty breathing from chest tightness. I would pass out when I stood up after a period of sitting. The first time it happened was at the end of a soccer game. I went to the emergency room as I was exceptionally weak, my head wasn’t clear and I couldn’t get my legs to respond to what I wanted them to do.
Loosing sensation and feeling is always scary. Each time it happens the initial fear is there but eventually the fear doesn’t last as long the brain kicks in with “Okay I’ve done this before, I can do it again”. This was something different. The fluttering and tightness was new and fear stuck with me. These episodes increased in frequency and severity. Neither the cardiologist nor the pulmonologist could figure it out. I worried that something was horribly wrong, in addition to MS. My anxiety was intense and all the doctors could suggest was “You really need to get your anxiety under control.” No kidding, fix me and it will be under control!
At the time I was also suffering from pressure in my head and light sensitivity. The pressure would vary in intensity but I rarely would call it pain. It was persistent, lasting for months. The neurologist I was seeing wasn’t sure what was going on. Then one day in her office, I suddenly lost use of my arm, my face drooped. I couldn’t respond to questions correctly. My tongue felt too big for my mouth and my legs refused to do anything at all. The doctor sent me right to the hospital to rule out a stroke. I was diagnosed with complex migraines. The cardiac and pulmonary symptoms were not discussed and continued after the hospitalization.
I was defeated, hopeless and beginning to assume that I would continue the downward spiral. A friend from high school was more insistent, “You have to go see Dr. Chung.”
I had spent years hearing “you really should see my naturopath” or “you really should go to a nutritionist” or “did you hear about the lady who cured her MS by…” all well meaning people who I would roll my eyes at before saying “thank you, I’ll think about it.”
Don’t get me wrong, I had acupuncture previously and found it fairly effective for energy and pain. I had massages and physical therapy all of which had some benefit. In addition, insurance didn’t cover most of those services. Even if I wanted to try an integrative doctor, the cost would have been a challenge. Plus, I had the best health care available in the world, right? My doctors were all tops in the region. My health insurance was excellent. Everything I ever needed was covered. But NONE OF IT WAS WORKING! So, in spite the out of pocket cost, I went to see Dr. Chung in January of 2015.
The first visit to the Chung Institute can be an overwhelming experience. You wait for awhile in a room, eventually not just the doctor but one or two medical assistants come in with a cart loaded with a multitude of vials. They introduce themselves, ask a few questions then get started with his assessment which is different from any other assessment any other doctor will do. There is no simple way to describe it so I included a link for anyone who would like to learn more about it.
He finished the assessment and said something like “I think I can help but it will take a little time.” He had specific things he found that could be treated. He said “I think you have Lyme disease. I believe that’s caused a lot of your symptoms.” WHAT?!?! Then he proceeded to talk about the other things he found: parasites, metal sensitivity, mold sensitivity, and babesia (another tick borne bacteria). This was both one of the most overwhelming and hopeful things I’ve ever heard.
The idea I had parasites was the most disgusting and unexpected diagnoses I had ever received. How gross? How could I get them? I actually felt dirty and more nauseous just hearing that the first time. Turns out its easier to pick them up than most doctors in the US recognize. Then there’s the whole, “I think your neurological symptoms are mostly from Lyme” part of the visit. It required such a leap of faith, had I spent most of my adulthood fighting the wrong illness? Had other doctors had been wrong-but they were the best in the area? I started questioning everything I thought I had known.PARASITE INFORMATION
Dr. Chung was so confident in his assessment, and confident in saying “I think I can help”. I left with this thought: what if he actually can? I left that visit with something I never had left a doctors office with before: hope. So, I followed the treatment plan he suggested despite how foreign this visit seemed compared to all of the other doctors I had visited. I began prescriptions for anti-parasitic medicine, vitamin supplements; had laser therapy and chelation for metals and began a homeopathic series for the bartonella and babesia.
I felt awful once I began treatment. It was as bad or worse than any other rough patch I had been through. I spent most of that week in bed. I didn’t know at the time, but that can happen when you begin treatment for Lyme disease. This is called a Herxheimer reaction or “herxing”. This is an adverse response to toxins released by the bacteria as they die off. Symptoms can cause intense fatigue; heavy, weakened limbs; joint and body pain. My whole body felt as if I was in a different planet that had a much heavier gravitational pull. It was awful.
When I went back for my follow up visit, I discussed how frustrated I was with him. He explained about herxing and once again I had hope. If this was a die off, I would start to feel better soon. Some treatments were added: bee venom, a special form of ozone treatment and some neural therapy. Fortunately, I noticed some improvement after that visit.
By my third visit, I noticed more improvement in my fatigue and headache symptoms. Improvement went slowly and steadily from there. After about 6 months, according to my chart, I felt 100% improved. I was enjoying my newfound health. I had been taking prescription medicines for 20 years but by January 2016, I stopped taking all of them.
Walking to Running Marathons
I had to start exercising in my thirties to manage the balance and muscle problems I had. It was a way of keeping up with the kids, helping maintain some energy and using my cane a little less. It was something I had to do. My weaknesses would hold me back if I didn’t fight them off with exercise. Walking and strength work became part of my routine. As my strength grew after my first visits to the Chung Institute I was able to add some running into those walks. Eventually I was able to run most of my regular walk route.
In October 2015, I ran my first 5k. That had been a goal of mine since I first started going to WalkMS events shortly after my original diagnoses. For the most part, I’ve been running ever since then. In general, my health is better now at 50 than it was at 28. I ran my first marathon in September. I started my first job in twenty years the week after my marathon and reactivated my nursing license this past February. This April, I celebrated my 50th birthday, feeling excited and energized to enter a new decade healthy and back to work.
It has been an incredible journey and I feel like I am just beginning a new chapter. You see, there is NO END to maintaining good health, especially after years of struggle. I have to work to maintain my health. Stress management, exercise, eating well all make a difference in how I feel. Life is an unpredictable juggle. I’m grateful to have a partner in staying healthy now-the Chung Institute.
In spite of having seasonal allergies and asthma Megan had been an active kid who played soccer all year long and lacrosse in the spring. She was an honor roll student who had good friends. Then, the migraines began.
When Megan was in eighth grade, she began having daily headaches. They began in early spring during her normal allergy season. The headaches had a pain scale that rated in severity from “can make it through the day at school” to “can’t even get off the sofa or read to do homework.”
Living with Migraines
At first the headaches weren’t so bad. She would miss school here and there but be able to get through most of time. The problem was they were just constant. By the Spring of Megan’s freshman year she was missing school and activities more often. She stopped hanging out with her friends as often or participating in the sports she enjoyed. None of the “normal” allergy symptoms seemed “normal” anymore. Her mom, Carolyn took her to the pediatrician who sent her to a neurologist who sent her to a neuro-opthamalogist. The doctors couldn’t really find anything that would cause the headaches. MRI’s and other tests showed nothing that would cause them. Megan was prescribed Topamax for migraines. The medicine didn’t get rid of the headaches. It just made them a little less painful. When the doctor increased her dose, she felt dopey and still had pain.
Her family worried. They tried to spend more time with her when they were home. After work, Carolyn would sit on the sofa with Megan to keep her company for awhile. She or Megan’s dad would read her school work to her and help her make up all that she was missing. Megan had always been a good student but missing so many days made maintaining good grades more of a challenge.
For dinner, they’d often order easy comfort food like pizza and fast foods. Carolyn gained weight and became depressed and anxious about Megan. Nothing was getting better in spite of the doctors and medicines for migraines. Carolyn was as worried for Megan’s mental health as she was for her physical health but didn’t know what to do. Nothing they were trying was working. Carolyn’s coworker heard about all that was going on; especially about how other doctors were not able to help. She suggested taking Megan to the Chung Institute.
The Chung Institute
They had an appointment with Dr. Chung at the end of freshman year. Megan was promptly diagnosed with gluten sensitivity and told this was the most likely cause of her migraines. Gluten was in all of those “comfort foods” she had been eating! Had they actually been making her sicker? Now there was finally an answer and there was something the whole family could do to help Megan feel better. Carolyn began to do her research and get to work to help the headaches go away. She decided the whole house would become gluten free.
With any new diagnoses and lifestyle change, a lot of learning must be done. Today, finding foods labeled gluten free is easy. Unfortunately, even those foods often have more gluten than a sensitive person can manage. The FDA issued guidelines stating how much trace gluten is permitted in gluten free foods. That’s right, there is still gluten in gluten free foods much of the time. It’s almost impossible to remove it all. The FDA created guidelines that gluten must be less than 20 parts per million.
Some fast food companies have gluten free food and it was so exciting to find gluten free fast food but they don’t take into account cross-contamination. Megan was excited to find “gluten-free” fast food but after eating it, she had a vision-blurring migraine. She didn’t know that the gluten free food had been cooked on the same griddle as food containing gluten. It was a hard way to learn about cross-contamination.
Megan visited Dr. Chung with another big headache despite having been so careful with all her foods. How can she still be testing for gluten? The doctor asked, is she drinking grass fed dairy? Dr. Chung explained to them that they needed to think like a nursing mother, what you eat goes into the milk. So if the cow is eating gluten, you drink it in the milk. This will cause another headache. Grass fed milk and butter and cheese were the only way Megan could consume milk without getting a headache.
Success Living Gluten Free
It was trial and error but painful trial and error. Carolyn and Megan became knowledgeable about all of it. Carolyn found products and recipes that work. Being a teenager and in a food driven society is challenging but Megan would rather not eat when she’s out with her friends than risk getting another headache so she follows this strict diet. The difference in how she feels makes it completely worth it to her.
Megan was off Topamax within six months of her first visit to Dr. Chung. June 21, 2019 marked her first year of being gluten free. As an added perk, Megan’s asthma has become well controlled and she has been able to stop taking her Singulair and inhaler. She goes to school regularly. She switched sports from soccer to track and she’s so fast that she may be able to compete in college. Her grades are better than they were before the migraines began. Carolyn also had some bonuses from gluten free living. She lost twenty pounds, feels great and her skin looks amazing too. The right food really does make all the difference.