I am an American who was living and working in Scotland, first as a post-graduate student, and then on a work visa. I love Scotland more than I can express – it is home. In November of 2016, I was living in central Edinburgh, when my flat was infested with mice from the nearby Holyrood Park. One morning, I woke up with something crawling on my scalp. I couldn’t see anything, and washing my hair didn’t seem to help, so I assumed it was just a strange nerve reaction on my head, and forgot about it.
Two months later, after a bad bout of stomach flu and moving to Fife to be closer to work, I was admitted to Ninewells hospital in Dundee with a fever, and sever pain that was moving around my abdomen, back, and chest. The pain was excruciating, it felt like shooting and stabbing, but the consultant said they couldn’t find anything causing it. In addition to the pain and fever, I was vomiting, but could not pass a bowel movement for more than a week. I was bloated, and any bit of pressure on my abdomen felt like a knife. They did a number of imaging tests during my 10 days in hospital, to look at my gallbladder and liver, my intestines, and my stomach – everything was completely normal. By the time I left the hospital, now two weeks after the start of my pain, I’d lost more than a stone in body weight.
They sent me home with a promise to schedule a HIDA scan of my gallbladder – a test that would take several months to schedule, and in the meantime, I was to manage my pain with opiates. Being American and having lived through the opioid epidemic, I knew that long-term pain medication was a dangerous thing, and I didn’t want to take it. I was also in too much pain to do much of anything, and terrified that I was going to die in foreign country, in a new village, where I knew no one, and lived alone.
I travelled back to the US to be examined by doctors. The HIDA scan was done immediately, and it found that my gallbladder was not functioning properly. So, it was removed. As I recovered from surgery, I felt my pain spread. Now, not only was it in my abdomen, back, chest, and ribs, it had also migrated into my armpits, elbows, wrists, fingers, and groin area. It would randomly feel like my joints and bones were broken, a feeling that would dissipate after a few minutes. I noticed that my symptoms were considerably worse around menses, and told my surgeon as much. He sent me for additional testing, said he could find no cause for my pain, suggested maybe there had been nothing wrong with my gallbladder, and suggested I see a gynaecologist. He refused to authorise additional sick leave (signing off sick leave isn’t something often done in the US), and told me to go back to Scotland.
So, I flew over the Atlantic alone, and went back to work. I was in pain every day, often jumping out of my office chair and yelping as it shot across my ribs. I began having unbearable pain in my tailbone that prevented me from sitting down, and that made it difficult to sleep. I was getting weekly episodes of stomach flu, in which I’d get a high fever, nausea, and diarrhoea. I went to the GP multiple times for emergency appointments, and was told various things: it’s endometriosis, you need to see a gynaecological consultant, it’s IBS, you need to see a gastroenterologist, it’s stress, you need to calm down. I was also told, week after week, that I was very unlucky to keep contracting gastroenteritis, or the stomach flu. The pattern wasn’t seen as suspicious, and a visit to an infectious or tropical disease consultant was never suggested. I was never tested for Lyme disease. I was never asked about a tick bite.
Two months after returning, the pain had gotten so bad, that I could do little but cry. I couldn’t walk far without losing all of my strength, I couldn’t focus on my work, and I was regularly calling NHS 24 due to severe chest pain. On one night, in particular, I was terrified that I was having a heart attack. The out of office service agreed to give me an appointment with a doctor at the clinic, but I had no way to get there. I hadn’t yet taken my UK driving test, and there was no public transit in my village after 8 PM. I decided that this was no longer conducive to my health, as I was afraid NHS was going to let me die.
So, I coordinated some specialist visits back in New York, went once again on sick leave, and returned to the US. Shortly after returning, my symptoms changed again. I began having episodes of disassociation – feeling an overwhelming feeling that the world wasn’t real, that I couldn’t process anything that was happening around me, and that I couldn’t do anything but lay down, immediately. I also began having terrifying heart palpitations, racing heart rate, and blood pressure spikes in which I could feel my heartbeat shaking my body. I was having severe stiffness and pain in my neck, and began having day-long migraines, that I’ve never had in my life. And I began getting confused in traffic, trying to turn into the left lane in the wrong country, so I stopped driving.
I visited a gynaecologist, a cardiologist, a gastroenterologist, a neurologist, a ophthalmologist, an infectious disease specialist, an oncologist/hematologist, and an allergist. There were a few issues identified – low IgG levels, changing levels of WBC and abnormal lymphocytes, high incidents of mast cell involvement, bacteria in my urine. Most of the doctors mentioned Lyme disease at one point, but all of my tests returned negative (North American Elisa, c6 Elisa, and North American Western Blot). Nothing, no imaging, no blood tests, nothing showed any cause for my pain or the inconsistencies in my immune system. The consultants insisted that it must be an autoimmune disease, but they couldn’t identify which one. I was told at different points that I had: Functional Abdominal Pain Syndrome, Multiple Sclerosis, Lupus, Leukemia or Lymphoma, Post-septic neuralgia, Mastocytosis, Fibromyalgia, and a host of other misdiagnoses.
By this point, my joints began to hurt, and I had difficulty walking on my knees. They would seize up anytime I sat – I felt much older than my 29 years. I remembered the bite that I had while living in Edinburgh. I started researching Lyme disease, and found information about unreliable testing. I visited with a well-known LLMD in New York, who spent two hours examining me and hearing my story, and gave me a clinical diagnosis of Tick Borne Diseases (he believed I had Lyme and Babesia).
I began taking Doxycycline and Mepron, and after one week, my intestines returned to full function for the first time in nine months. After six weeks, my pain and heart symptoms were decreasing, and I walked two miles. My migraines and neck pain stopped, and my brain felt normal. I gained back 20 lbs of the total 40 that I had lost. But when my menses rolled around, everything returned, and I landed, once again, in A&E.
I decided my LLMD wasn’t a good fit for me, as he couldn’t explain which of the diseases I had, and what my expectations should be in treating them. He was very aloof. So, I switched to a new LLMD, who requested that I stop antibiotics for 6 weeks while completing blood testing for iGenex. As the six weeks went on, my symptoms slowly returned. As I waited for the results of the testing, I was sicker than I had ever been. I couldn’t walk without help, my intestines had seized up again, I was in constant, unbearable pain, and I was torn between being afraid I was going to die, and wishing I would.
My results returned: Three bands (iGenex positive) for Borrelia, including band 58, which is more common in European strains of the bacteria, two positive strains of Babesia, and one positive strain of Bartonella. I felt validated – something WAS wrong with me. So, I started back on Doxycycline and Mepron, and waited to get better. I didn’t, immediately. The first few weeks, everything got worse. I was periodically losing my sight, and the use of my arms. The nerve pain all over my body was relentless, and I would have episodes where my brain went fuzzy, everything slowed down, and I couldn’t form words. But, my intestines started working again.
I am now on my sixth week of Doxycycline and Mepron. I am starting to feel a positive change again. I’m walking without a cane, my brain and speech are back to normal, and I haven’t had abdominal pain in four days – the first time in almost a year. The pain elsewhere in my body is excruciating, but I am holding out hope that this may also fade with treatment. I am incredibly hopeful that this treatment is going to work, but so saddened at everything I’ve lost. I unfortunately lost my job, home, and visa in the UK last month. Because I was working overseas, I am ineligible for financial or medical assistance in the US. I’m living with my family, but our financial situation is dire. My mother is cashing in her retirement to pay for my treatment. If only the NHS, or standard US doctors, had recognised Lyme, had understood that the tests aren’t accurate, and had been willing to treat for longer than 4 weeks, perhaps I would already be back to the life that I love in Scotland, instead of being crippled and destitute in upstate New York.
I have written to my MSPs, my MPs, my congressmen, my doctors, the NHS, the New York State Board of Health, begging them to listen to my story. I continually get the reaction from medical professional and politicians alike, treating me like I’m crazy, and imagining everything. I’ve been told this is just depression, I’ve been told I’m imaging it, I’ve been told I must be on drugs. Before I got sick, I was a well-respected professional, with a post-graduate degree from one of the world’s top universities. I worked in international relations, and have always been an intellectual and high-achiever. If the medical world treats me like this, it pains me to think what other people must experience. We are not crazy, or irrational. Our pain is real, our bodies are sick, and no one is listening.