To be honest, my mind drew a blank as I sat here thinking about writing out my story. I typed out an outline of some of the key events and then stared, unable to figure out how to start. Without even thinking I switched apps to distract myself by playing a little game on my phone. This happened twice before it occurred to me that maybe I could just be honest about how difficult it is for me to write out this story.
My brain doesn’t want to remember the details. My heart would rather forget. I think shoving memories and feelings aside is sometimes necessary so that we can survive traumatic times. I believe the ability to shut off our emotions is a gift from God that only becomes a problem if we choose not to revisit those emotions later.
So, as painful as it is, that’s part of what I’m choosing to do in starting this blog… To slowly and cautiously pull out a few of those memories and feelings that have been bottled up.
So without further ado, I present to you the story of my journey into chronic illness.
I was born and raised in what most people would consider beautiful upstate New York. Sadly, “Lyme endemic” is the description that comes to mind when I think of it now, with all those tick encrusted deer living in our backyards.
But none of us knew it then. I played in the brightly colored fall leaves with my little sister, completely oblivious to the dangers that lurked there. I full was full of life, loved to dance, and had a happy-go lucky personality.
When I was about 10 years old, however, I experienced a strange and sudden shift in my personality. No trauma had occurred that would normally be associated with such a change in a child. My home was perfectly safe and I had wonderful parents who loved each other and loved me. Even so, I began to suffer extreme night terrors and insomnia, which we now believe were the first warning signs of the terrible infection that would overtake me later in life.
A Budding Ballerina
I continued to struggle with psychiatric problems throughout my teens but I learned not to let it define me. By age 16, I was part of a pre-professional ballet company, taking 12 ballet classes per week with rehearsals on top. It was a rigorous training schedule but I loved it.
I started dating my future husband at the tender age of 17 and began preparing to audition for Ballet Magnificat’s trainee program. In 2011, I graduated high school, got engaged and was accepted into the trainee program! Life was good!
That August I left home for the first time and moved to Mississippi to begin my training at Ballet Magnificat. Dancing 6 hours a day, working a part time job, maintaining a long distance relationship and planning a wedding was intense! But I didn’t mind at all.
Then out of the blue, I started gaining weight and noticed it was a mighty struggle to pay attention in ballet class. Suddenly my balance went wonky, I was never the girl who could hold a balance on pointe for two whole minutes but now I was falling out of a position before I could even let go of the barre. I told myself it must be the weight gain and that I should just try harder.
My knee started to hurt though and I developed plantar fasciitis in both my feet. I didn’t use to get injured very often but I just told myself it was normal. Ballet is hard on the body, right? Every dancer gets injured from time to time.
I was let go at the end of that year and was heartbroken to have to leave. I decided to take the summer off and made plans to move to Seattle with my husband to dance with Paradosi Ballet. Strangely though, my feet continued to get worse with rest, not better as the physical therapist had predicted. It got to the point that I could barely walk, the bottoms of my feet felt like they were on fire. I was getting married in June and needed to be able to wear high heels! I resolved to try to stay off my feet as much as possible.
I went to see a podiatrist who suggested I should consider an infectious cause like Lyme Disease
because it was rare to see an injury like this in both feet. I blew him off. After all he must not realize what dancers put their feet through!
In Sickness & In Health
I married the love of my life on June 2 that year, and it was, hands down, the best decision I’ve ever made. My feet were far from better but I was used to pushing through pain. Sadly, I did have to sit out through most of the dancing at our wedding.
After our honeymoon we moved out to the Seattle area and my health took a nosedive. We were living in a moldy basement apartment at the time but thought nothing of it save that it was gross.
I started getting these terrible sinus headaches and was more tired than usual. I was trying to lose weight and get back into dancing but my body was stubbornly resisting. My muscles shook and I could barely hold my leg up because it hurt so bad. My “injuries” were not even close to better and pretty soon I was sitting out for all of class and rehearsal. I started to hate ballet for the first time in my life.
I woke up exhausted every morning and my sinus headaches did not improve in spite of standard treatment. I was used to soreness but now I was experiencing a new kind of muscle pain. My body felt so heavy as I dragged it through the day. I even had to lay down and rest after cleaning the bathroom.
I also found that I couldn’t focus long enough to pray or read anymore. My brain wasn’t working like it used to and a deep depression started to return. Not a sadness over my circumstances but a feeling of numbness that made no sense. Something was really wrong and I knew it.
Searching For A Diagnosis
We still thought maybe my problem was a chronic sinus infection, so we asked the ballet company if I could have a month off to see doctors and try to get better. A month? It seems laughable now.
They agreed and I went home and started sleeping 16 to 20 hours a day. Yet I only got worse. We decided we’d fly home so we could be with my family and get in to see an ENT that accepted my insurance.
The ENT said my sinuses looked perfect on his scans and that my headaches sounded neurological. Thus began my journey into the world of many doctor’s appointments and blood draws. No one could figure out what was wrong and by now I was bed bound.
I didn’t give up on exercise easily though. I remember one time when I tried using my parent’s treadmill. My heart started racing, I felt extremely dizzy, lightheaded and completely out of breath. I was really sick and it was starting to sink in. I went back to bed.
After a few weeks, my dad told his primary care doctor about my case. The doctor responded that it sounded like Lyme Disease and that I should come in to see him ASAP. I did. During the appointment he explained that the Lyme ELISA another doctor had ordered was a notoriously inaccurate test and that I needed to have my blood drawn for a much more sensitive Western Blot. He said my joint pain and debilitating fatigue was classic for Lyme Disease.
Sure enough, my Western Blot came back with two Lyme specific bands positive. He started me on doxycycline and directed me to the ILADs website. He admitted that he’d gotten pretty good at diagnosing Lyme but was not as experienced in treating it.
We started researching the disease and found out that most patients get worse before they get better. It was not going to be the easy solution I had hoped for. Sure enough new neurological symptoms started popping up on top of old ones as soon as I started the doxycycline. Neuropathy and sharp shooting pains tormented me. My arms and legs would go numb. Where as before I couldn’t wake up, now I couldn’t sleep. And my deep depression morphed into unusual anxiety and terrifying panic attacks.
We decided to switch to a physician who specialized in Lyme Disease and used more natural methods. She switched me to the Cowden herbal protocol and I continued to decline rapidly. We decide to cancel our lease in Seattle during this time and Brett went back to put all our stuff in storage. I didn’t even get to say goodbye to our first home.
After a few months of treatment we noticed that nothing my Lyme specialist had predicted was coming true and I started to feel like my decline was not just a Herx reaction (caused by all the dying Lyme bacteria releasing toxins) as she claimed. None of her detox methods were helping and we started to suspect that maybe the herbals weren’t really doing much killing at all.
A New Doctor
After six months we decided to switch doctors again. This time we’d skip ahead to the top. We narrowed it down to two of the most famous Lyme doctors in the country, Dr. Richard Horowitz and Dr. Joseph Jemsek. We’d been told that both had success treating some of the toughest cases. In the end we decided to go with the Jemsek Clinic even though it was a little further away.
The first appointment was two hours long. Dr. Jemsek’s newest PA took a very thorough history and ordered lots of blood tests along with an MRI to rule out any other brain conditions.
At the end, Dr. Jemsek came in to speak to us and informed us that he believed the Lyme Disease had spread into my brain and nervous system. He explained that oral treatments have a hard time penetrating into the brain. For my treatment to be successful I would probably need to have a PICC line installed and do 7 to 9 months of pulsed IV antibiotic therapy.
They put me on several medications to control symptoms because intense treatment would make everything much worse at first. They didn’t want me to start treatment until my body had stabilized a bit, since the dying Lyme infection would certainly create even more inflammation in my body.
Because of the symptom controlling medication I felt much better for my 20th birthday and was able to enjoy the small family celebration we had. Then on June 1st, the day before our first wedding anniversary, I got a PICC line installed at the George Washington Hospital (it’s like a semi-permanent IV). As in, threaded up my vein through a tiny hole in my arm. Thankfully the nurse made an exception and my dear Brett was able to hold my hand during the painful procedure.
I think it’s safe to say that 2013 was the worst year of my life, even though the worst week of my life didn’t come until later. IV treatment was hell on earth. The physical pain brought tremendous agony and the psychiatric symptoms were even worse.
As the antibiotics killed the Lyme in my brain and created all sorts of inflammation I came very, very close to the literal definition of insane. I had panic attacks almost daily sometimes multiple times a day. They lasted for hours as I screamed in the closet sometimes terrified of the people who loved me most. I was routinely disoriented and had out of body experiences. I felt disconnected from the reality of the physical world and was reduced to the emotional maturity of a child. I talked to my stuffed animals and couldn’t even watch 101 Dalmations because Cruella terrified me.
The neurological symptoms were bad too, I had a lot of mild seizure activity and what I now think were auditory hallucinations. I had extreme light and sound sensitivity that isolated me and prevented visitors from coming to see me. If I was exposed to too much noise my spine would shiver in the most awful way and sometimes it would send me into a panic or make my skin so sensitive I couldn’t be touched at all.
One time my skin got so sensitive I couldn’t even stand my clothes and blankets anymore and had to lay naked on the floor with my eyes closed. I never found a good way to describe what it felt like to be so overstimulated. I also had severe brain fog and mild memory loss and most days, I could not read at all. I spent a lot of that time playing games on my phone to distract from the intense pain and fight off the panic attacks.
The Worst Week of My Life
After 9 months of IV therapy administered by my two loving caregivers, Brett and my mom, Dr. Jemsek felt I was ready to switch to oral antibiotic therapy. My psychiatric symptoms had greatly improved and the sharp shooting pains had resolved and left behind more general joint and muscle pain. Even so, I was far from well. I was still bed bound but was hopeful that in a few months, as other patients had claimed, I would finally get to the part of treatment where I’d start to feel better and better.
Unfortunately those hopes came crashing down when my mom found me barely breathing at three breaths per minute. The combination of strong pain killers had greatly suppressed my breathing and we were justifiably scared. We ended up cutting all my pain meds cold turkey.
Thus began the worst week of my life. The withdrawal symptoms like restless legs and insomnia were terrible, yes, but even worse was the pain. It shot through the roof.
I had hoped that the underlying pain had already greatly improved with IV treatment but boy was I wrong. Take away the pain killers and I was moaning in agony all day. Worst of all we didn’t know what to do to stop it as it felt too risky to try another medication. I’ve never been so desperate in my life. At times I wished they had just let me die.
I had to take a trip to the ER that week for reasons unrelated to the pain and it was there in that waiting room, in the middle of the worst week of my life, that I felt God’s presence for the first and last time since this all started. Miraculously, my sound sensitivity disappeared for a few hours and I was able to listen to worship music again. Those fleeting moments of closeness meant a lot to me and gave me the strength to go on when nothing else could have.
It always annoys me though when people say I must feel so close to God because of all my suffering. That could not be further from the truth. I have often cried out with the psalmist “How long will you forget me? How long will you hide your face from me?”
I do think that sometimes God does give a special sense of His nearness during suffering but often, as in my case, He withholds His presence for reasons unknown to us. I am so thankful that He gave me that one sacred moment so that I can look back and remember that whatever the reason He chooses to continue hiding His face it is not because He does not care.
Searching for Relief
We tried every non-drug thing we could think of to control pain including renting a hot tub (I reacted to the chlorine), an expensive infrared mat, a spinal block, acupuncture, essential oils, and some things that looking back I think were kind of quacky. Nothing worked.
Eventually I started on low dose Tramadol and that helped to take the edge off for several weeks but tolerance built up quickly and relief didn’t last.
Then one day my acupuncturist suggested medical marijuana and told us about the documentary Weed by Sanjay Gupta. This was something that hadn’t even crossed our minds and if we hadn’t been so desperate I don’t think we even would have considered it.
But we were and we did. A small seed of hope was planted as we watched that documentary. People were getting dramatic results with this plant and there were simple ways to prevent the psychoactive effects the drug is known for.
I kept telling Brett that I didn’t feel like I could make it through another day. So, as quickly as we could get everything together, we were on a plane headed to Colorado where we stayed with Brett’s college roomate’s parents for a few weeks.
Medical Marijuana, Where Have You Been All My Life?
I started on the marijuana oil and low and behold, no dangerous side effects! I didn’t even get high once! After a few weeks I started to feel much, much better. It was amazing! The best I had felt since this whole sickness started. How could it be that there existed a far safer and more effective medicine all this time?!
I was doing so well in Colorado that we decided to get a puppy! Woohoo! It was a childhood dream come true. I named her Ramona and spent my days training her.
Unfortunately though, I had been off of Lyme treatment for far too long. First because the pain was out of control and then because my symptoms of autonomic nervous system dysfunction were acting up and the Jemsek Clinic wanted me to see a cardiologist.
After 6 months of daily walks in sunny Colorado and playing with my beloved new puppy. My health crashed again.
Dr. Jemsek had said months before that he thought my gallbladder needed to come out but I stubbornly refused. Until I was again in bed, barely able to eat from the nausea and unable to sleep because of the gallbladder pain. Needless to say, I had Brett schedule the surgery as quickly as he could. It was somewhat traumatic but very successful. Once I had recovered from surgery I was able to start oral antibiotic treatment again. My symptoms spiked terribly in response to the dying infection and it again became very difficult for Brett to care for me on his own.
So we moved back to New York to live with my family and back to bed I went. Only this time I had a happy little puppy to distract me with her antics. Progress was very slow and hard to see in the day in and day out battle. The joint and muscle pain and the sound sensitivity were probably my worst symptoms during this time. But looking back I can see that my neurological and psychiatric symptoms were greatly improved already. I think the IV antibiotics really did kill off a lot of the Lyme in my brain.
Hyperbaric Oxygen Therapy
In 2015 we were cleared to try Hyperbaric Oxygen Therapy. We both knew we wanted to try it once enough Lyme had been killed off because it greatly accelerates tissue healing. At the time we believed that most of the infection had been dealt with and that many of my continuing symptoms were just residual damage from the Lyme and the harsh treatment. The Jemsek Clinic advised us to start slow and stop if symptoms worsened. We chose to disregard that advice and sign up for the full 40 dives (treatment sessions) that was the standard for Lyme patients at the HBOT facility we were going to in Ohio.
I can’t say for sure if that was a mistake or not but it sure felt like a mistake when it was all over. HBOT is very effective at breaking up the biofilm communities that the Lyme bacteria make to protect themselves. This can be good but can also overwhelm your system if you have a lot of biofilm, as all the Lyme bacteria are being released and then killed. It was intense and I left feeling much worse than I did before I started HBOT. Only now we were $7,000 short.
I had put so much hope in this treatment and was devastated when I returned to my parent’s home only to crawl back into my bed in that same sickroom. I had visions of how HBOT would finally be the turning point where I’d start to feel better, my pain would be gone, I’d have energy and be able to start doing normal things again. I cried for days and slowly came to the realization that maybe I wasn’t at the point I thought I was in my recovery journey. That there was still a lot of infection left to kill.
I took a long break from treatment to try to calm down all the inflammation caused by HBOT, but was eventually able to start oral antibiotic treatment back up. Slowly, I began to make some improvements. When I say slowly I mean really, really, really slowly. Like barely even notice it slowly, over many months. Still, this improvement is why I’m not sure if HBOT was a mistake. It was grueling for sure but perhaps it accelerated the process of killing a lot of the remaining Lyme.
Eventually, Brett and I came to realize that the 100% recovery celebration that we all envisioned would bring closure to this traumatic season might not be coming for a long time, maybe even years. We started to think that maybe we needed to try to figure out how to live on our own again and start the process of finding a new normal.
Our plan when we got engaged was to eventually settle in Portland where Brett’s family is located. We started looking at that idea again and felt strongly that having access to medical marijuana again would greatly improve my quality of life and allow me to get off of a lot of my medications.
A New Normal?
In September of 2016 our dream finally became a reality and we moved into a beautiful apartment in the same building as Brett’s father. It seemed perfect. With the medical marijuana I was in less pain and was able to start reducing my medications. I started taking short walks with Ramona and we both loved the city. I would say by this point I had made about a 50% recovery with Lyme treatment.
I met some new people and started to reconnect little by little with my in-laws. My badly injured social confidence began to heal.
I was wearing makeup and shaving my legs again. I actually felt like a woman!
I was filled with hope for the future and felt like some of my dignity and independence had been restored. It was freeing to live in a city where people didn’t recognize me as the sick girl and I would never run the risk of running into dancers I used to know who would be shocked at how fat a ballerina could become.
A New Problem
There was only one new problem. Some pesky hives started showing up on my arms and legs every morning. That and a nearly constant low level nausea. It wasn’t long though, before I started having worse headaches too. I took Benadryl for the hives, and tried cutting out a bunch of different foods. I was left with a diet even more restrictive than your standard elimination diet.
Still I could not control the symptoms and I started breaking out in hives during the day too. I kept a food journal as I tried to identify what was causing the reactions. No clear patterns emerged. It seemed I was reacting to everything except for this one chicken veggie soup. I also started reacting to chemicals both manmade and natural, cleaning products, essential oils, and my natural beauty products.
The Jemsek Clinic suggested an issue with excess histamine in the gut could be at the root of the hives and nausea as a small subset of their patients had developed histamine intolerance. I immediately cut out all the high histamine foods I was still eating but didn’t really improve much. I also started reading everything I could about histamine intolerance and ordered some expensive supplements that were supposed to help.
In spite of my efforts, the reactions kept getting more severe. The hives were spreading to new places on my body, my lip started swelling up and my throat would tighten. The worst reactions came in the middle of the night and I started to suspect the root cause wasn’t really a food thing after all.
In retrospect I probably should have used my Epi-Pen on at least one of those nights when I could no longer swallow. But the truth is that I’m terrified of the ER because of some bad experiences and I couldn’t get past the idea that using the Epi-Pen meant I would have to go to that awful place again.
The reactions went on for nearly three months before we found out that there had been a major leak in our apartment building. It turned out that there was water damage in our closest when we first moved in, yet the landlords never did anything to fix it!
By this point my normal symptoms started getting worse too. I was so exhausted, unable to do much, and I kept having episodes where my brain fog would come back with a vengeance. I felt like things were starting to fall apart again and we needed to do something fast.
Slowly we began to realize that maybe the water damage in our bedroom closet was contributing to this unexpected decline. We remembered how we’d heard that many Lyme patients have problems with mold toxins and where there is water damage there is usually mold. We tried sleeping in our living room and I improved a tiny bit. But the big wake up call came when our sister-in-law, who is also sensitive to mold, started reacting in our apartment.
Thankfully, we had a two week trip to visit my family coming up in a few days and it was perfect timing. The hope was that our landlords would be able to schedule repairs while we were gone and we could return to our lovely new home as though nothing had happened.
Still, I couldn’t deny the fear that history would repeat itself and that we’d end up losing this place just like we had lost our first place. Sure enough, the landlords decided to fight us instead of helping and it soon became clear that we would not be able to go back anytime soon. I wanted to sue their pants off!
Back in NY I continued to get worse. The first week was manageable but by the second week my pain started creeping up. I no longer had access to medical marijuana because chronic pain is not a qualifying condition in New York State. I was spending most of my time in bed. Strangely, I was still breaking out in hives daily, but now the antihistamines had nearly stopped working. The hives were spreading to even more parts of my body and the facial swelling was happening more often. It became clear that this was becoming dangerous, life-threatening even.
As we researched mold illness it all started to make sense. Many people who have trouble with toxic mold end up reacting to all sorts of foods and chemicals just like I did. And it’s not at all unusual for a bad exposure to toxic mold to make a vulnerable person hypersensitive to the lesser amounts of mold found in many modern homes and buildings or even to cross contamination brought in on people’s hair and clothing.
I really wanted to get in to see a doctor who understood what was happening in my body. Unfortunately, all of the highly respected mold doctors we were considering were booked too far into the future. But I was in a dangerous place and we needed to act now.
If the circumstances hadn’t been so urgent we would have much preferred to have more time to plan and research. But we had read enough to know that this was an emergency and we needed to get to a place that was considered safe for someone with hypersensitivity to mold.
Finances were tight and we lost most of our stuff along with our apartment during this time. My sweet brother in law, Alex organized a fundraiser to make it possible for us to head to a safer part of the country for me. The response was huge, and hugely encouraging. It gave us a little more courage as we stepped out into the unknown and flew out to the drier and less populated Southwest. Our hope was that the cleaner air would give my immune system a chance to calm down.
After a bit of an adventure, we finally ended up in Taos, New Mexico in an Airbnb. I improved a lot there. The hives and facial swelling stopped almost completely, confirming that mold was really the root of the problem. I had more energy there too.
Thankfully, one of the mold doctors had a cancellation and we were able to go see him in San Fransisco. The appointment went well and the doctor’s words assured us that we were on the right track.
He ordered lots of blood tests and prescribed a medication that binds to biotoxins so that the body can eliminate them. But he told me not to start the medicine until I was in as close to a 100% mold-free environment as possible.
He said that could be something like a CampLite Camper or an apartment that has been thoroughly tested. He explained that for a patient as sensitized as I am the standard for “safe/mold-free” is way higher than it would be for a healthy person. The process he requires for finding a safe apartment is pretty complicated and overwhelming. It’s not unusual for biotoxin illness sufferers to have to move several times before they find a tolerable place.
We spoke with a patient advocate (who is a recovered biotoxin illness sufferer herself) on the phone however and she strongly suggested to us that we should try tent camping in a really pristine location, like Death Valley National Park, before making any decisions about our long term living situation.
There were many good reasons for this, the number one reason being that even if we did land on the perfect new “home” right away, there is a good chance we might cross contaminate it if we don’t get some experience with extreme mold avoidance under our belts first.
We decided that what she was saying made a lot of sense and that we’d take her advice. So, when our reservation in Taos ended we hopped into our rental car and drove to Death Valley California for our first ever experience of camping as grown-ups. We stayed in Death Valley for 11 extremely hard days before deciding to head to Elko, Nevada.
And thus ends the story of how two young twenty-somethings ended up tent camping in the wilderness in the middle of a horrible disease. But really it is only the beginning of a new chapter and we can only imagine where it will take us. The happy part is, now that this blog exists, you can come along for the ride with us. I hope you decide to join us and that our story will encourage your heart in some way.
A Note About Caregiving
Condensing 5 years of chronic illness into a short story is not easy and by necessity some very important details will be left out. The fact that Brett and my mom cared for me around the clock, especially during IV therapy, is one such important fact that I couldn’t quite fit into the story but didn’t want to leave out. They brought me food, administered my IVs, made sure I had my meds on time, washed my hair, helped me walk to and from the bathroom, held my hand while I screamed in pain and tried to calm me during panic attacks. I will never be able to repay them for what they have done but I wanted to at least recognize them here. Caregiving is suffering in its own right and yet often most of the support and attention is directed toward the sick person. It is easy to grow weary in well doing but both my husband and my mother never gave up on me. I just want to say to any caregivers out there who serve with love… You are a superhero! And your side of the story matters too!
By the way, Brett and I made a beautiful PDF of my favorite resources for suffering souls. I created the content and he made it look fancy with his superduper graphic design skills. It’s available for free to my email subscribers. Click here to sign up and receive 5 Resources for the Suffering Soul.