First of all I want to say it has taken me a long time to be able to write this blog post. I know this post is different to my usual travel guides but I am writing this one from the heart. I am not writing it for likes or comments or any sort of validation. I am simply wanting to tell MY story. I want to reiterate that this is my personal story and a part of what makes me, ME and everyone’s journey with Lyme disease or chronic illness will be different. Those of you that follow me on Instagram know that we are told to share our WHY on Instagram. The thing that makes us unique and different and like it or lump it this is a huge part of my why. So I must warn you, this was a massively difficult thing for me to go back to and share so have patience. There may be tears on my part and with a story that goes back 18 years it might take me some time to get through it so, go on, pour yourself a large glass of wine and snuggle yourself in for this marathon story.
I still can’t quite believe that I am about to write this story. Every sentence comes from the heart so I am not worried about SEO or good composition. I am hoping that being a journalist’s daughter I have somehow inherited the ability to tell a good story but I guess we are about to find out!
So, let’s start at the beginning. The Tick Bite! My story starts almost 19 years ago in the Summer of 2000. I was in my 4th year of a 5 year degree in Medical Laboratory Science. The world was my oyster. I had a boyfriend of four years that I loved deeply and I knew that I would be walking into a secure, extremely well paid job in a year.
I’ve always had a sensible head on my shoulders but there is that side of me that loves adventure. When my friends told me that they were going to New York for the Summer I knew that I just had to go. So I said goodbye to my boyfriend and flew to The Big Apple for a Summer of fun.
I was lucky enough to have family already living in Queens, so myself and my friends stayed with them until we found jobs out in the seaside town of Montauk, on the tip of Long Island. Let me just say Montauk is heaven! Sandy beaches and long Summer days and hundreds of students working together and living the dream.
I got a job in the infamous Gurney’s Inn working in the health spa. My job began at 7am so I had mornings at work, afternoons on the beach and the evenings to party. How perfect! I could walk to work every morning through the grass and watch chipmunks play right beside me. They even gave us a beautiful house on the beach to live in and Gurney’s Inn hosted many MTV beach parties with the likes of Carson Daly and Jennifer Lopez, so I was living the dream. The soundrack to my Summer was Destinys Child and I could not be happier.
My boyfriend on the other hand missed me terribly and decided that he had to come and spend the last six weeks of the Summer with me. I had to admit I missed him too, but I knew that without a working VISA he could not work in America and Gurney’s Inn would not tolerate me bringing someone into staff housing, so reluctingly I moved back into Manhattan with my relatives and got a job looking after a sweet 96 year old woman in Brooklyn Heights. I missed my friends and wanted to show my boyfriend Montauk so we went back regularly to visit. It was on one of these Montauk visits, shortly before I was due to return home to Ireland, that I got the bite that changed my life.
I think at this stage I need to give you a little history about Lyme disease. Lyme disease is caused by a bacteria called borrelia burgdorferi. The scientist in me is a sucker for calling things by their scientific name but yawn! If you have to read borrelia burgdorferi every five seconds you guys are not going to finish reading this story, so from now on I will call it Lyme.
So Lyme is a spiral shaped bacteria that happily lives in deer, birds and rodents. Ticks need blood to survive so ticks bite the deer and suck in their blood taking in any bacteria or viruses living in this blood. The tick then drops off and looks for its next prey. In this case it was the white freckly legs of an Irish girl walking happily through the long grass. Ticks are tiny when they are not filled with blood so can easily be missed so I didn’t spot this thing the size of a poppy seed making its way up my body to find a nice warm spot in my armpit. I had no idea that when that tick bit me it would firstly vomit up the contents of its stomach…..frickin gross right!…into my blood and infect me with all of the bacteria and viruses that it picked up from the deer. It is this concoction of bacteria and viruses that can make one person’s Lyme disease different and more or less severe than another sufferer and why symptoms vary from one person to another.
So in my case the tick didn’t make any big announcement that it was there. Some people get a tell-tale bullseye rash that literally looks like a bullseye. It only happens in less than 50% of people but if you get a rash that is a red circle, surrounded by a white circle, surrounded by another red circle it means you have Lyme disease and need a minimum of 4 weeks of doxycycline antibiotic immediately. If you get this rash consider yourself lucky because without it you will have to face years and years of having to prove that you contracted Lyme disease. If you get this rash demand antibiotics.
Needless to say nothing in my life is ever straight forward and I didn’t get the typical bullseye rash, but that’s ok I’m not weird or anything about half the people that become infected with Lyme don’t get the rash either. Instead , even though I did not know that I was bitten by a tick, I did know that I was bitten. Some people aren’t even aware that a bite occured at all! The area under my armpit became red, itchy and swollen and I just thought “that’s irritating” and flew home as planned to Ireland.
By the time that I got home I was so sick. I was back in Dublin looking for accomodation with my boyfriend for my final year in college. I felt like I had the worst flu ever!! I had zero energy, my joints hurt like hell and I could not stop throwing up. I went to the doctor. She suggested that I had stomach flu and that was that.
I forced myself to go to lectures but 10 weeks later I still was not better and still throwing up so I went back to my GP. At this stage, because I was still throwing up, she decided to run a pregnancy test to rule it out…. but guess what? I was frickin pregnant! So there was my answer. I had no idea what pregnacy was supposed to feel like and was told that everything that I was feeling was normal so I continued my last year in college not realising that it was not supposed to be THIS bad.
I struggled through my college term. This was my dream after all and a career that I had worked so hard for. It was a huge effort but I sat and nailed my final exams and asked to do my degree project in Galway hospital so that I could be close to my mum. Why is it when you are sick all you want is your mum? I started my degree project, which was a huge percentage of my final degree, in early Feburary and by early March I was hospitalised. I was not due my baby until mid June!
I remained in hospital very ill until they decided that the safest thing to do was to induce my baby early on my birthday May 1st. It took two days and I had no physical energy left so by caesaran section they delivered my beautiful son Aaron on May 3rd. I was so happy! My baby was 6 weeks early, but, was big and strong and just gorgeous! But because he was premature and jaundiced he was put in to the neonatal care unit and I was sent to the general Maternity unit without my baby. It wasn’t the incessant crying from other newborn babies that kept me up all night but this horrible cough that I developed when I tried to lie down.
Despite my cough and the fact that I was swollen with fluid ( Lads, I’m not joking I looked like the Michelin man) I was a happy new mum and my baby was my priority. I would walk, with swollen ankles and shortness of breath, up to the neonatal unit first thing every morning and crawl back to my ward last thing at night.
I got discharged from hospital one night before my baby was due to be discharged but there was no way that I was leaving him. I pleaded my case and they put me in the parents room beside the neonatal unit. It was there that one of the neonatal nurses noticed my cough and asked a doctor to come and have a look at me. The doctor assured me that it must have been a painkiller triggering asthma in me, and, not to worry because it was normal.
So I went home the next day a proud mum with my baby and struggled my entire first night at home to breathe. My boyfriend was worried. This took lack of sleep as new parents to a whole new level, because we got zero! We were young student parents and didn’t have a car, so the next morning we walked to our GP because we were worried. My GP was seriously worried about my shortness of breath and sent me to the hospital for review.
We walked the 4 miles to the hospital and when we got there they assured me it was just asthma and sent me home with a prescription for an inhaler. I walked home with a screaming, hungry, baby wondering if this is what motherhood was meant to be like. By the time my parents came to visit that evening my lips had turned blue! My parents were shocked and seriously concerned and insisted that they bring me to the ER.
When I got to the ER I was in seriously bad shape and struggling for breath. I was immediately admitted back into the care of the maternity team and put on oxygen, which made me feel a little better. I was sent for further testing and at this stage my health was obviously declining but they could not figure out what was wrong.
On the night of the Eurovision, May 12th, my stats were that bad that they decided that I needed to be moved to the Higher Dependency Unit. Big Mistake!! I was fully dependent on oxygen at this stage. The bed that they tried to transfer me on had an empty oxygen cannister and all panic ensued when they realised that I couldn’t breathe on my own. At that stage my parents were sharing care of both my baby and I with my boyfriend. Neither of us could be on our own! The night I almost died, my 23 year old boyfriend was with me.
It was like drowning! That is the only way that I can describe it. My lungs had filled up with so much fluid that I couldn’t suck in a breath. The doctor panicked and jumped up on my bed to bag me. I looked into his eyes and saw the panic and knew that this was it. I felt sad for never getting to know my baby but knew that I couldn’t last any longer and I said goodbye to the world and closed my eyes. A sense of relief washing over me. Everything went black.
I eventually came around hours later with a tube down my throat breathing for me. The doctors stood around my bed in intensive care telling me that I had given them an awful fright……I had given THEM a fright! My heart had stopped and I had died but they had managed to revive me. My parents were called to my side and my boyfriend looked drained. Surely this wasn’t the experience of most new parents?
I remained on a ventilator for two weeks, a machine breathing for me. I didn’t close my eyes for fear that I wouldn’t wake up. If they had to take the ventilator off for a few seconds so that I could suck a drink through a straw, I couldn’t breathe, so as a result I still can’t put my head under water or have my face covered without feeling that immense panic. It took them two weeks to realise that I was in autoimmune heart failure.
Once they figured out that I was in heart failure they could fix it. They didn’t take the time to figure out why a young, first-time mum, aged 23 was in heart failure but they had the drugs to stop it. I told them about my bite a few months before, the microbiology student in me did think about Lyme disease, but they brushed it off. They never even tested me for it.
I wrote my degree project up in Coronary Care and somehow graduated with the degree that I had always longed for. I was discharged, with damage to my heart, under the care of 3 heart doctors. My boyfriend realised that he couldn’t cope with it all so left me as a single mum. My parents brought me home and helped me raise Aaron. I graduated with an honours degree. Three months after giving birth and being released from hospital, and still doing night feeds, I started my career as a medical scientist working in a busy hospital lab. I could not have done this without my parents.
Life goes on
Healthwise, I never felt the same after that. But, I had just gone through heart failure and I was a single mum, I was bound to be tired right? I don’t know how to explain it but I just knew something was wrong in my body.
I remained in the care of the heart doctors for about 5 years. My heart had returned to the upper limits of normal and I was still on medication. I pushed myself hard to do it all. I worked oncall in a busy hospital lab sometimes 7 days a week. I was a single mum to Aaron and spent every moment possible with him enjoying our time together. I travelled with him and spent every free weekend with him, off exploring. I went to the gym every lunch time to keep my fitness up and still found time for my friends. By this stage I had an apartment and a mortgage and life was good.
But something wasn’t right! I could feel it. My energy levels were always low and I constantly felt that I had to push myself to do the things I did. My heart rate was consistently low, about 35bpm (normal is about 70-100bpm) and I would faint regularly. I would pick up every little illness going and they would last for weeks. As a child I had a strong immune system and was never sick. Now I was sick all the time and I just couldn’t explain it.
I would end up back in the ER multiple times over the next few years. My constant symptoms daily were fainting, light headedness, having to go to the bathroom like 20 times a night (no joke!), low energy, pins and needles in my left arm. If you google these symptoms they all spell one thing…heart failure. And I had suffered heart failure so for me it made sense that there was a connection but not for the doctors.
In their eyes my bloods were normal, my ECG was normal and an ultrasound of my heart did show the damage done but it was now considered to be in the upper limits of normal. So I was told they had no answer and that I would just have to live with these symptoms, so that is what I did.
Over the years I would end up with many more unexplained symptoms and having to go to many different doctors. A rheumatologist for my joint pain and right knee that would swell up out of nowhere and go burning hot. A dermatologist for my skin that would just start burning up leaving me looking like someone had thrown scalding water over me. A urologist for my constant need to go to the bathroom at night. A neurologist for my pins and needles and nerve pain. An endocrinologist for my thyroid that had just stopped working and of course a cardiologist for my fainting episodes and low heart rate.
None of the doctors thought my individual symptoms were related and I was left feeling deflated. For a girl that was never sick, how could I end up with all of these individual things going wrong without them somehow being connected. Even I could make the connection to when I became pregnant. There was a moment in time when I was well and a moment in time when I was constantly unwell. I knew the difference between the two. There was a moment in time when everything changed so why could no body help me figure this out. They were all too happy to diagnose me with all of their individual ailments but not happy to look further and figure out why all of this was happening to a young, previously healthy girl.
And still no Lyme test! I was 7 years sick like this, going from doctor to doctor for answers and still trying desperately to live a normal life. My blood tests at this stage always showed inflammation in my body and that I was now producing autoantibodies. Autoantibodies are when your immune system messes up and instead of producing antibodies to attack foreign invaders, it produces antibodies against your own healthy tissue. It is the basis of Autoimmune disease and why I went into heart failure in the first place.
Remember how I told you that Lyme is a spiral shaped bacteria. Well it is designed that way for a reason. Lyme doesn’t want your body to know it is there because your body will produce antibodies to kill it. Instead it likes to use its spiral shape to corkscrew its way inside your body’s tissues and organs and hide from your body’s defences. Instead your body knows that there is something there but can’t quite get at it, so it gets confused and starts attacking the organs where the bacteria are hiding. In my case my heart, thyroid, blood vessels and joints. I had autoantibodies to them all and I was attacking my own body but nobody seemed very concerned.
My knight in shining armour
I was still struggling to do it all on my own when I met Mister Lavin. Aaron was 7 at this stage and he just came into our lives at the most perfect time. I hadn’t been dating at all in that 7 years so when we met I just knew it was meant to be. Three months after we began dating I introduced him to the most important man in my life, Aaron. I still remember my 7 year old’s first reaction to meeting Ronan. On the way home in the car, Aaron turned to me and said “Mum, he’s going to fit in just fine”.
A few month’s later Ronan moved in and life was perfect!
We didn’t have much time together before my health took a serious downturn. I had been complaining about a pain in my jaw and the fact that it was locking really badly on me so I went to the dentist. I didn’t know it at the time but the Lyme bacteria likes to live in the joint of your jaw and the roots of your teeth. It is also notorious for causing TMD (temporomandibular joint disorders), the condition that I had now also developed. The dentist recommended that I see an Orthodontist immediately to fix it so that’s what I did.
The treatment involved having to break my jaw and put in a metal expander that had to be turned by a key every day to widen my jaw. I came out of that surgery a completely different person. It was the final hit to my immune system and it just couldn’t cope. My symptom list got bigger daily and over a two year period I struggled even to go to work. Any physical or mental exertion would leave me bedbound for a week or two. So if I wanted to do anything, like even something simple as going to the cinema or for a coffee with friends, I would have to rest for a week before hand and then stay in bed for two weeks after to recover.
This period was particularly difficult for me because on the outside you look completely healthy and normal but on the inside you feel like you are dying. People only see the outside so you get very little understanding. You end up putting on this persona that everything is ok because people don’t like to hear you talking about being sick all the time. So the mantra becomes “How are you?……I’m fine”.
I even got married during this stage which is stressful enough for even the healhiest of people. I tried to do the normal things not wanting to admit even to myself that my life was falling apart. It was a struggle for Mister Lavin too watching me deteriorate.
Things got so bad I had to admit defeat and give up work. Saying goodbye to the career I loved, not knowing if I would ever make it back there was so hard. I was so sick that I could no longer disguise it. Mister Lavin became my carer. I eventually found a fatigue specialist and after 9 years of being sick I got my first diagnosis of ME (myalgic encephalomyelitis). This illness has one of the worst stigmas attached to it. Commonly called “yuppie flu” or “chronic fatigue syndrome” sufferers are often seen by society as being lazy and doctors treat you like it is all in your head. You end up having to fight the battle with this illness on your own.
I also had my first Lyme test. Nine years after being sick. And it is no surprise that it was negative. The test looks for your body’s antibodies againt the bacteria but as I explained previously the bacteria hides away in your organs so after a few months your body doesn’t produce antibodies to the bacteria in large enough numbers to get a positive test and you get a false negative. This is one of the biggest problems with Lyme disease. I didn’t know then about this issue with the testing and I accepted the negative result and focused on fixing my initial diagnosis of ME.
My symptom list grew daily. It is impossible to list them all but some of the worst were:
- extreme pain
- brain fog (do you know what it feels like not being able to formulate a thought)
- memory loss
- paralysis of my stomach muscles
- oesophageal spasms that are more painful than I could ever begin to explain
- paralysis episodes (even the stimulation of watching TV could trigger a paralysis episode where I was fully aware but couldn’t move a muscle. I could hear Aaron crying with worry but I couldn’t move or speak to let him know that I was OK. When I would eventually come around my speech would be slurred like a stroke victim)
- fainting (Mister Lavin used to find this one so hard. He would worry all day at work that he would come home and find me at the bottom of the stairs)
- extreme fatigue but constant insomnia
- severe muscle weakness
Things became so bad. It felt like I had the worst flu and worst hangover of my life combined, daily. A simple trip to the bathroom felt like I had just climbed Mount Everest. Noise and light sensitivity meant I had to lie alone silent in a darkened room. I became isolated. The fatigue was so extreme that Mister Lavin would have to carry me to the bathroom. I didn’t have the strength to hold a toothbrush or a spoon so he would have to brush my teeth for me and spoon feed me. He was, and still is, my rock.
This period of time was the darkest time of my life. I was simply existing and I wasn’t living. Life was going on for everybody else and all I could do was watch from the sidelines. The pain was so bad that I often thought about giving up. My symptoms were so bad that I thought about suicide daily and that is nothing to do with a mental health issue. The pain and torture and hopelessness were too much to bear. There was no-one coming to help me, I only had my husband and son and my husband had to work to provide for us.
At some points I needed 24 hour care but we didn’t have that luxury or anyone helping us and I just wanted it all to stop. If Mister Lavin didn’t have the time to feed me that morning he couldn’t just leave it there for me to eat myself. Firstly I didn’t have the strength to feed myself and even if I did there was the risk that I could choke because my swallow reflexes were so poor. So I would have to wait until 7pm, when he got home from work, until he could feed me. He would then have to cook, clean and get Aaron ready for school so I would again be alone until it was time for bed and I would lie awake all night with pain and insomnia until it all started over again the next day.
As terrible as it sounds and I respect all life, I wasn’t living anyway. I was hidden away in a room in intense pain with a million other horrific symptoms. I had no life and I didn’t want to live this one so I guess that it is normal to think of suicide. You don’t want to hurt anyone, you just want it to stop. But, I never, in a million years would have done that to my family and as hard as it was (I still can’t fully talk about that time) I know that I am made of strong stuff.
It was during this isolation that I turned to Instagram for inspiration. I looked at the feeds of travel bloggers making a mental list of all of the places that I wanted to see when I got better. There is so much beauty in this world and I knew that some day I would be well enough to explore them. I kept this belief strong and never gave up hope.
Another trip to the doctor for extreme headaches led to an MRI that showed up another problem. Idiopathic Intercranial Hypertension which meant I had too much fluid surrounding my brain and putting pressure on it. At first I was so disheartened but this diagnosis led me to the doctor that would eventually help me. He was a neurologist and could tell that I was severely ill.
He admitted me to hospital to give me strong IV steroids to help me regain some energy and get out of the deep crash that I was in. I reacted so badly to the steroids that he knew that I had Lyme disease. It is known as a “Steroid disaster”.
Corticosteroids supress the immune system, the last thing a Lyme patient needs is to lower immunity. So I literally felt like I was dying.
The doctor advised me to get my blood tested elsewhere. He knew of a lab in Germany that tested specifically for the Lyme DNA, so I paid over €1,000 to send my bloods to Armin labs. I just needed answers. After all of those years knowing that there was something wrong, I finally got my answer. I had the Lyme bacteria DNA! I had Lyme disease and the American strain of the bacteria picked up in Montauk all those years ago. Finally all of the pieces of the jigsaw fell into place. I could now connect the dots. I wasn’t unlucky enough to get all these random diseases. I had been infected with bacteria that triggered them all.
I actually had a glass of champagne to celebrate the diagnosis, not realising the uphill battle I now faced getting conventional doctors to accept my results from another country. They would rather believe that I suffered some monumental stressful event in my life and developed illness beliefs than admit that the bacteria was there. I mean, I had no antibodies to the bacteria so, according to them I couldn’t have it and chronic Lyme disease does not exist.
I’m not going to go into the politics of Lyme disease here. I’m exhausted just thinking about it and this post is already long enough! But having to fight this battle on top of being unbelievably sick was the hardest thing I will ever have to deal with.
I will say that once I knew what I was dealing with I could try treatments to get better. Believe me I tried everything. From a year and a half on antibiotics, to Paleo diet, to Juicing, to herbal supplements known to kill Lyme, to biofilm busters and bone broth diets. If you told me that there was a chance to get better I would try it! If you had told me to eat poo I would, I was so desperate to get better.
And then the scientist in me kicked in. I knew that after a year and a half on antibiotics the Lyme bacteria had to be well and truly dead and even if they weren’t people can live with the bacteria and not get sick. Mister Lavin for example has the same American strain of the bacteria as me, as does Aaron. There has been no scientific link to sexual or pregnancy related transmisson but that has to be more than coincidental. This mode of transmisson hasn’t been studied with Lyme disease but the bacteria has been shown to be in bodily secretions. Syphilis, another spiral shaped bacteria has been proven to be passed sexually and is known for causing illness in its host years after the primary infection. Why is it so hard to think that Lyme could do the same!
Anyway, the more I thought about it the more I realised that it was my immune system causing the issues. Think of it this way. Your house is on fire but you manage to put the fire out after a lot of damage is done. You wouldn’t go back living in this house until that damage was repaired. So I knew that was what I had to do, repair my damaged immune system. I needed to clean out all of the junk in my damaged cells and get them communicating again. I needed to fix my nerve cells so that my brain could make my organs function properly again.
I knew that my answer was stem cells. To treat Lyme Disease, stem cells are reintroduced to the body intravenously allowing the circulatory system to carry these regenerative cells throughout your body. Stem cells encourage the repair of affected cells, providing hope for delaying, stopping, or even reversing the effects of Lyme disease.
But this treatment costs money…like a lot of money! €30,000 lot of money and with only one income and doctors bills adding up it was simply not something that we could afford. But I knew that this was what I needed to get a quality of life back so by the sheer determination of Mister Lavin and a very close school friend we fundraised the money that I needed for my treatment. I still get emotional when I think about the way that people pulled together to help me and I will forever try to do the same for those still struggling with Lyme disease.
I flew to Infusio clinic in Frankfurt Germany on September 25th, 2017. After two weeks preparing my body by detoxing and replenishing vital nutrients I was finally ready to have my stem cell procedure. On October 4th my stem cells were removed from my fat cells on my hips in a procedure that is very similar to liposuction. I was dreading this part but it didn’t hurt in the slightest. A short time later Mister Lavin was given the privilege of injecting my stem cells through my IV. To say that we were emotional is an understatement. I think the photos speak for themselves. After 18 long years I now had the chance of getting my life back.
I’m not going to lie, the healing process was tough. There were days when I never thought I would come out the other side. Neurological healing takes up to two years and I’m still in the middle of it. What I did get were glimpses of what life could be like. During these good moments I took my opportunity to travel. I went to India on a blogging trip without having to rely on Mister Lavin to survive. You don’t know how good it felt simply getting my independence back.
The good days lasted longer and longer and finally I was able to return to the career I love. Am I symptom free? Not 100%. That Lyme bacteria had a long time in my body, doing damage, because my immune system couldn’t control it. Any symptoms I have now are mild and the most important thing is that I now have a good quality of life. I am back doing what I love most…..exploring the world!
The thyroid issues and muscle weakness have remained and things like climbing stairs are challenging for me but I have adapted my life around that. I will forever be grateful that this treatment was a success for me. I also think that continuing to have a positive mindset through it all helped me immensely.
If you are still here thank you for reading my story. My hope is that is raises an awareness in you for the struggles of living with chronic illness and that it gives you an appreciation for your own health. I now explore the world through the eyes of a child seeing things for the first time. I will never take a second of my travels for granted again. I still can’t quite believe that I am able to write this post. For a long time I would get panicky even thinking about the bad days. I’m not going to lie there were many tears writing this post and I know that I can never convey on paper just how bad this illness is and what it takes away from you. But I survived and so many others are still struggling. So I will continue to use my voice to raise awareness for this devastating illness.
Lyme disease may have taken away more than a decade of my life and changed the person that I have become, both physically and mentally. I am however grateful for some of the lessons that it taught me. It showed me that I have a strength and resilience that I didn’t even know I had. More than that, it taught me deep compassion and gratitude for even the simplest of things. It also brought me this blog, because in the depths of darkness I needed a creative outlet and All about RosaLilla was born. So while this is MY Lyme story, I feel that my real story is only beginning.
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Until next time you crazy kids!
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