Wendy’s story of living with Lyme’s carditis and POTS

It was autumn 2015, and I didn’t realise anything was wrong until I woke up from what I can only describe as an ‘absence’; I was lying on my side, on my sofa, and I was confused, disorientated. I didn’t feel ‘right’. I wasn’t myself. Emotionally, I was numb. My behaviour had been erratic recently; that week I had literally pulled the hair out of my head in rage, and then spent several days staring into nothingness; I didn’t eat, barely drank, barely moved, and all the while, the head pain was there. That was the only thing that seemed to exist in me.

A week previous, I had been enjoying all that make up my regular lifestyle; walking, running, I was progressing well with my kettlebell’s, and I’d received a note from a student of ours, thanking me for encouraging her and supporting her in my partner’s martial arts class. My partner runs his own school; a school I helped build. I am a student of the martial arts; BJJ, wrestling, MMA, full contact kickboxing and Urban Krav Maga. We also teach children which is my favourite thing to do, beaten only by the fact I’m also a devoted mother of two boys who are autistic. They are entirely dependant on me, and I have fought very hard to ensure they have received the right support in life. As a family, we had overcome many obstacles and we were working together to help support others. I was studying Sports therapy, and Indian Head Massage, and was training to become an instructor.

I was happy.

That week in my spin HIIT class, for the first time in my whole life, I had to stop mid-class. Never before had I ever had a problem with my heart, and yet now, it was pounding so hard, so quick. A sudden occurrence with no warning. I felt it in my throat, in my back. I was alarmed, and knew I should go to hospital, but I didn’t. I am afraid of hospitals. My heart struggled like that for around an hour.

The next few months were a downhill spiral. I was experiencing hallucinations; hearing things. I had completely soaked my bed from sweating so much. I had fevers that came and went. Chest pain that radiated down my arm. Pins and needles that was agonisingly painful.

Quitting training never once occurred to me at first; it’s too important, but my performance was terrible, I was fatiguing so quickly and my muscles were not recovering from the workouts. Before I knew it, I was sitting out of class, unable physically to join in, and one by one, I dropped a work-out.

That year, I was slowly unable to get out of bed at all. I would force myself to get to one class, and then spend a whole week in bed, writhing in agony recovering from it. Completely fatigued. My whole body hurt with various pains, I couldn’t stop sleeping. The weakness was so bad, I couldn’t hold a pen to write, nor a cup to my lips.

I had been diagnosed with depression, although I didn’t believe I was depressed. I was then told it was suspected M.E, but we would need to rule out other things, and so the long, long road of testing and hospital visits ensued. My GP had noted my heart rate was low, indicating I was previously fit and healthy. All my blood tests were coming back like I was in optimum health, and my NHS lyme ELISA that I had later on, was negative.

A rheumatologist thought I had fibromyalgia, and the first cardiologist I saw had picked up SVT on an ECG. I called my GP in a panic when half of my face went numb and sagged, but A&E confirmed it wasn’t a stroke. My right eyelid drooped so much, and my body was constantly in a state of pins and needles/numbness. Still, I wasn’t getting anywhere with answers.

My gums bled, my nose bled, I was experiencing what I still think are seizures upon waking up. I had a very visible tremor, sometimes it was so bad it was more a convulsion that lasted anywhere from 10 seconds to a minute. My legs shook as I tried to support my own weight.

Still, I tried to carry on, but I had pushed myself to get to class one time too many, and when I went to bed one day in June 2017, I didn’t get back up for 7/8 months. I couldn’t see, my head was agony, I couldn’t move to turn myself over, paralysed. I couldn’t tolerate light, sound or touch. I was absolutely convinced I was dying, as I felt so ill. I was dizzy the whole while, like I’d been poisoned, or spiked, and on a hell of a nasty, nasty trip. I forgot my children names and birthdays, my cognitive ability was on the decline, and I was suffering with many neurological issues.

Admist all that chaos, a chance article came up on the M.E support Facebook group, talking about how Lyme disease can be mistaken for M.E and other illnesses. I was in disbelief; April/May time, 2015 I was snowboarding with my family in the Scottish Highlands. We had broken down next to a sheep farm and I waited with my son in the lay-by for a few hours. We were throwing grass at each other for entertainment.

I then fell ill with the ‘flu’ and blamed it on the stress of breaking down. I had fever, the shakes- and then found 3 ticks embedded in my stomach, which I removed, badly.

A&E had said that I might’ve had an allergic reaction, but just to be sure, they gave me 2 days of Doxycycline- I now know that dose was insufficient, according to the Nice guidelines.

The ‘flu’ eventually subsided, but a month or so afterwards, my initial symptoms started; fever after exertion, ‘absences’, fatigue, poor sleep, personality and mood changes. That’s when I was first diagnosed with depression.

I did not have a rash this time, but it got me thinking to a few years back when I lived in Yorkshire, and always in the woodland- I had ring rashes that expanded outwards across my knees. It was diagnosed as ringworm, but the cream I was prescribed had no effect.

Desperate for anything that helped, I tried Hyperbaric oxygen therapy. An hour later I had a drop seizure and almost choked on my vomit. I tried sauna therapy, which made me almost faint, and I swelled 3x my normal size, and my legs went blue around my ankles.

I had now been ill for 2 years, and was begging my partner to help me make an official will; every single night I truly believed I wasn’t going to wake up. The symptom list was growing, and I was living in complete darkness, completely isolated. I had permanent tremors, I was using a wheelchair to get to the doctors/hospitals, wearing sunglasses and earphones. I had to be carried out of my wheelchair into the car- I couldn’t move. I went days without washing, I had to be bed bathed. My heart was getting worse, but by this time my GP was mentioning POTS but it took months and months to wait for any appointments, tests and results. My GP had noted a ‘significant’ change in blood pressure from sitting to standing, and gave me compression stockings. Every trip to the A&E resulted in me being told ‘LYME DISEASE DOESNT EXIST!” and my neurologist took 5 minutes to diagnose me with Functional Cognitive disorder, saying my illness was psychosomatic, and I needed a psychiatrist, as Lyme doesn’t exist in this country.

After a while, I didn’t mention Lyme anymore. I knew this wasn’t in my head, and I was desperate for answers. Answers I wasn’t getting. I felt like a burden to everyone, I felt alone and confused, and considered suicide. Then, my son started to complain with similar symptoms. My son who had been in the layby with me. He is now 13 and struggling attending school from joint oain and CF.

I eventually found the Breakspear clinic, who first diagnosed Lyme neuroborreliosis in November 2017, and I then found a private clinic in Beverley, who have been treating me with pulsed antibiotics, and, although I am still ill, I have made considerable improvement compared to what I was living like.

I have been in and out of A&E mainly for my heart issues- chest crushing and pain, sometimes radiating into may arm and throat. One time I didn’t get turned away, because my blood clot test came back positive, and the doctor told me he had picked up a slight murmur. He told me I may have had a little heart attack, and I went for an xray, which they were worried about. They told me they saw something that resembled a sarcoma. However, the CT came back unremarkable, and I was discharged with no answers.

The next cardiologist I saw told me my heart was a normal size and function according to my scan, and I didn’t need my beta blockers (which were helping me!) and was going to discharge me. I begged for help, and he told me he will send me for a stress test, but if that came back clear, he wanted to discharge me.

I do not know whether I have been left with permanent damage. I do not know if I will relapse, recover, or if it wasn’t Lyme afterall. I do not know if I will get my life back. I do not know what my future holds. I know that infected ticks are in this country, and ticks also transmit bartonella, babesia and other such infections that also are known to cause a whole lot of trouble.

I still suffer, I still struggle with tachycardia, possibly POTs, dysautonomia, SVT, chest crushing, dizziness, weakness and fatigue, brain fog, temperature regulation, mild heat and light intolerances. I get very flushed and feverish if I exert myself. I still live in a state of pins and needles/numbness, neck pain and an inability to hold my head up sometimes. Swelling, sleep problems. Pressure hives, various rashes. I can stand more now, but even just taking a shower some days is exhausting, and I feel faint, weak and dizzy if I stay standing too long- I collapsed in town a month back. That being said, I am managing to walk just that little bit more now, and I try and avoid using my wheelchair- something that wasn’t possible at the beginning of the year.

The tremors /convulsions have improved, the sweating, the light intolerance. For the first time in 3 years, I have held a pen, read a little book, not worn sunglasses outside or inside. The nausea is improving as is the fever spells.

The chest crushing, which was becoming absolutely intolerable, has been made a little better with Ivobredine. But, overall, my heart problems have been getting worse. I always wondered if it was Lyme carditis? How do we disprove that? Or did something upset my autonomous nervous system, affecting my heart? My problem is, ‘Ive never found a doctor who would consider lyme, bar the private clinics.

This journey for answers has been trying, and expensive. I’ve spent over £7,000 in private consultations, testing, treatments, supplements, petrol, travel, and accommodation. I have been on everything from intense antidepressants, amitryptaline, nicorandil, CBD oil, Aciclovir, Artesunate- but I have started to find the right people who can help, the right treatments and i have hope for some kind of recovery now.

I do not know if my heart will get better as a side effect from antibiotic treatment. Maybe the dysautonomia was caused by lyme neuroborreliosis? I do also have a family history of EDS ( and I do have skin issues and joint issues and hyper mobility)

My issue is, there is no accurate test for Lyme that can guarantee to rule it out. The Elisa is notoriously inaccurate. My understanding is that it is political, poorly understood disease. The testing cannot rule it out 100 percent, and so I am left in limbo, not really knowing if this is truly the cause of my many symptoms. All I have is the findings of the ticks, the history of what looked exactly like an EM rash, and the ticks being the significant point for the onset of my debilitating problems.

One thing is for certain, more research into this disease is needed. Meanwhile, my search for recovery for me and my son continues.

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2 Comments

  1. Julia 16th September 2018 at 6:36 pm - Reply

    I’m very sorry. I’m extremely weak and use a wheelchair. I have pots and shaking. The pain in muscles and joints is horrible. I recently lost my son and have worsened so much. I pray we heal.

  2. Julie B 26th September 2018 at 9:06 pm - Reply

    Hello, I can so relate to you. I am also suffering from Lyme disease for many years. Magnesium supplements helped me so much with heart related issues. I first tested negative for Lyme but then a doctor finally agreed to retest me and it was then positive. “ IgeneX “ is the test you want to have done to test properly for Lyme and/or co-infections. Lyme disease has left me debilitated in so many ways. My heart goes out to all who are suffering. There is a great need for doctors who are educated about the long term affects of Lyme disease.

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