L’s story of living with Lyme Disease

I got sick with Lyme Disease in 2012. I did get bites and presented to a doctor with the bulls eye rash, they gave my a week of standard antibiotics and a steroid cream and sent me on my way. I knew nothing about Lyme Disease at the time and unfortunately neither did the doctor I saw. I wish I knew what that rash meant at the time and got a course of doxycycline and would have been spared the complete misery that followed. It is also unfortunate as I was one of the lucky ones to even get the rash, a lot of people never know they got bitten or never develop the bulls eye rash. Unfortunately the obvious presentation didn’t save me either.
My first symptom was a nasal infection, it was pretty bad but I didn’t feel sick so I never went to a doctor and ignored it, from then on different symptoms started slowly over a period of months, it started in the sinuses and then I developed awful throat symptoms that persisted for a long time. I went to a doctor and got a diagnosis of “globus hystericus” an anxiety disorder where you feel a lump in the throat. I knew this wasn’t right and had to persist and try find answers. I was eventually sent to an ENT Doctor, and when they put a camera down my throat they saw adenoids and they were very very inflamed. They brought me in for biopsy of them pretty quickly but that was clear. At this point I was wondering had I been exposed to something as from what I had looked up, the swollen adenoids suggested an immune response. The doctors were happy with my tests results and reassured me I was okay.
I think this is the reason this issue needs to be highlighted, most if not all of the standardised tests will come back normal, and even though I knew something was very wrong since the initial nasal infection, all the tests were coming back normal so I understand why the doctors assumed it was an anxiety disorder and weren’t concerned. I had signs of infection but I never became acutely very ill for the first few years so it was difficult to understand for both me and my doctors. I do remember around this time my GP saying I had slightly elevated white blood cells but only slightly so they weren’t worried. Looking back I know now the Lyme was slowly invading my body, my immune system was strong enough that I didn’t become very ill but had all these awful, strange, changeable symptoms that continued.
The next few years I just developed so many symptoms that would come and go and alternate. I developed numbness in my legs, strange tingling sensation and pain in my middle back area, strange sensation in my temples, air hunger, palpitations, chest soreness, awful pelvic pain, bladder issues, rib soreness, liver pain, several rare skin rashes, gastro problems, carpal tunnel, knee pain, joint pain..the list really could go on.
I had a difficult time during this period as I knew something was wrong and it was making my life miserable even though thankfully I could function and work for most of it. My doctor kept reassuring me all the tests were good and I’m fine and suggested antidepressants. I knew this wasn’t the problem but I started to doubt myself at this stage as it did look like I was a hypochondriac as there were constant new symptoms I was presenting with and then my tests were always normal. I couldn’t understand this myself so I thought maybe it is psychological and tried the antidepressants. I wasn’t on them long as nothing changed and still had all the symptoms so I came off them. I think this is a very common problem with Lyme, because so little is known about it and the tests are usually normal, most people end up with psych diagnosis.
At this stage, I was incredibly frustrated, I knew there was something medically wrong with me. I started doing my own research and initially thought I had Chronic Fatigue Syndrome or Fibromyalgia as these conditions matched up with a lot of my symptoms. I eventually came across Lyme Disease, I had never heard of it but once I started researching it I knew straight away that’s what I had, it matched up perfectly with my experience.
I had to beg my GP to test for it, and she was very reluctant and assured me there is no way I had that. Thankfully she listened to me and tested me for it. She sent my bloods to a local hospital first, I tested positive but she said that lab isn’t great and is most likely a false positive. She sent another sample to a UK lab, this also came back positive. I remember being so relieved when she rang and told me. I wasn’t upset I was so happy to finally have an answer and finally know what the problem is.
I thought it would get easier from there, unfortunately I was wrong. From day one with Lyme right up until now, everything has been a battle with this disease, it’s completely exhausting. My gp sent me to an Infectious Disease doctor after these blood results. This was in 2014, two years after becoming ill I finally had my diagnosis. The ID doctor prescribed me six weeks of doxycycline. At this point I didn’t know that much about Lyme. I asked about what I had read, which is if its not caught in time it becomes chronic and standard antibiotic therapy will not work. She assured me this was incorrect and that I would not have any residual problems after the treatment. Unfortunately I did and things just went on for years the same way.
It seemed to ease off at times and then come back through out the next few years, the symptoms started to get very intense and in 2017 I decided to start one of the herbal protocols for Lyme. This was the start of the worst of it, within two weeks I developed a rash, which spread and was eventually diagnosed as Lichen Planus (an immunological rash). It was very upsetting as it was awful to look at and kept spreading over a period of months. I thought initially it was an allergic reaction to the herbs but it was the treatment itself. I then saw another Infectious Disease doctor in January 2018 and started long term multiple antibiotics. I was warned you get worse before you get better as treatment with Lyme is horrific due to the Herxheimer reactions (Die off toxins from the pathogens). I accepted this and proceeded. Even though I was warned, I had no idea what I was in for. I’ve always been lucky that I was a very healthy person before all this. I never thought I could or would become so ill. It’s a strange thing to say but you never think it will happen you. From January 2018 to present, I experienced what can only be described as hell. It’s actually a very difficult thing to even articulate and even to write about it now, as it was an incredibly traumatic experience and it’s still hard to even think about. The worst of all of it has been my cardiac symptoms which started three months into treatment, with a literal bang. Last year involved countless trips to the ER and cardiologists. I got diagnosis of Pots, Inappropriate Sinus Tachycardia and Ectopic beats. These conditions and symptoms are all very common with Lyme.
Thankfully I was assured that my heart was structurally normal and that these were benign conditions, even though they felt anything but benign. I know these are common conditions and people can have them without Lyme, but in my case and Im sure there are a lot more cases… I know Lyme is the cause of mine, either directly or indirectly. I believe Lyme is an overlooked cause for a lot of health conditions. The whole of 2018 was a total nightmare. There was war going on inside my body and it shattered me to pieces. I really thought I was going to die, I lost almost three stone, stopped being able to eat, couldn’t sleep or rest at all, my body was in such distress all the time, it felt like my nervous system had completely collapsed. It really is difficult to explain and the diagnosis I received didn’t seem to reflect what I was experiencing. For about nine months I prayed the nights I could get sleep that I wouldn’t wake up, not because I wanted to die, I just couldn’t bare being in such physical and mental anguish all day every day. It was a very isolating experience also, my family, friends and doctors all seemed to be at a loss as to how to help me. It’s a difficult disease to understand and can be very lonely. I dreaded opening my eyes when I woke up in the morning knowing I’d have to try survive and get through another day. This has been difficult to write, but it is the reality of Lyme Disease.
I wanted to write this for a few reasons. One is to raise awareness for prevention purposes as people don’t know how much of a threat this, and how debilitating it can be. There is still a perception that it is uncommon and this just isn’t true. It’s also for people who have Lyme and don’t know it. Lyme mimics a lot of other conditions, and I feel so sad for people who may have Lyme and don’t know it, as in my case if I didn’t figure it out myself I might never have known, as awful as it’s been at least I know what the problem is so I have hope that I can fully recover with enough treatment.
I am now off the antibiotic treatment. Am currently on another herbal protocol and doing biomagnetic therapy. I have tried to attack this from all angles, the treatment itself and lifestyle changes such as diet and managing stress. I am finally seeing improvements, and am so happy and grateful I am out of that very dark place. The problem with Lyme is it’s a very individual disease so different treatments work for different people. It’s a lot of trial and error finding what works for you, and it can be very difficult even getting a diagnosis in the first place. As I said previously, everything with this disease is a battle. In my opinion, recovery involves a combination of treatments, lifestyle changes and a lot of time and patience.
To anyone in that very dark place, just hang on!! It will get better, believe that. I couldn’t imagine having a good day ever again after the last year, I felt like a completely different person, I didn’t recognise myself. I am finally starting to feel like myself again, I still have a long way to go but I believe I’m starting to repair and recover finally. My advice to anyone with this is to do your own research if you can, trust your instincts, take control of your own health, be patient and don’t lose hope in getting well.

About the Author:

Dr Sanjay Gupta
I'm Dr Sanjay Gupta, a Consultant Cardiologist with specialist interest in Cardiac Imaging at York Teaching Hospital in York, UK. I believe that high quality reliable jargon-free information about health should be available at no cost to everyone in the world.

One Comment

  1. Avatar
    Joyce 21st May 2019 at 5:39 pm - Reply

    Amazing story.
    Thank you.

    I have a friend struggling with MS.
    Some say it mimics Lyme disease and vice versa.

    A proper, correct diagnosis is the place to start. Sometimes hard to get.

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