My Story: MS, Lyme, Canes & Marathons
“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.