Life Beyond Lyme – Patients Share their Stories of Hope

We recently invited our patient community to share their experiences of being diagnosed and treated for Lyme disease. We encouraged patients to remain anonymous to allow them to speak freely about their experiences.

We hope that these submissions from patients, in their own words, provide an authentic insight into how it feels to experience Lyme disease and demonstrate that, with treatment, recovery is possible.

Thank you to everyone who has taken part in this project so far. (*We have not contacted you directly as we did not capture any contact details on the online form you submitted to ensure total anonymity.) We will continue to share patient submissions as they come in over the coming weeks. If you would like to share your experience of Lyme disease, please send in your story by completing this online form.

‘Early diagnosis and treatment helped me’

‘My Lyme disease story is pretty brief which is great as I followed the right procedure and was luckily clued up before it happened.

I first noticed there was a problem when I got infection symptoms like a fever. I had hot sweats and chills, a high temperature and a racing heart rate. After a day of this I noticed a bull’s-eye rash forming around a bite. Immediately I called 111 for advice, saw a pharmacist who was really helpful, and went to the local out of hours service at my local hospital.

I gave a clear description of my symptoms and got on to the right antibiotics the same day. After a few days, I felt much better.  I occasionally feel a little ‘extra’ fatigue but I’m lucky to catch it when I did.’

Doxycycline capsules

‘I’m grateful to have my life back’

‘I thought my life was over after having become so unwell over a two year period. I was off work long-term sick, I had been labelled medically anxious by my GP, and honestly felt like my life was over. I had three children to care for and my husband was terrified watching me decline physically, mentally, and emotionally. I couldn’t drive due to pain, or even lift a pan of potatoes to cook for my family. I became depressed on top of all of my other symptoms.

Fighting against the NHS for any real help was a breaking point. I went private for treatment over 18 months and I have my life back. I am working full time, looking after my family and enjoying life again. I am no longer depressed and just grateful to have my life back. I’m not 100%, but compared to where I was, I’ll take it. Yes, I have to be careful with myself and listen to my body, but I’m so happy to be me again.’

‘Changing my diet helped me’

‘My doctor said that I had Fibromyalgia because they didn’t know why I was so ill.  I had difficulty walking and working and I had no energy. l read about someone who had Fibromyalgia who changed her diet cut out foods with high oxalates. l stopped drinking tea and coffee and cut out sugar. l do now have coffee now and again, I do have treat now and again. l take vitamin B12 tablets as well and I eat healthily. l did get better and could not believe l could walk without pain. l knew l had Lyme disease as I had 2 tick bites years ago, and is has the same symptoms as Fibromyalgia. I hope this helps someone.’

‘Am I cured? I wouldn’t know… I am in a better place’

‘During our visit to London in 2018, we were fortunate enough to visit the beautiful deer park in the Richmond area and spend precious time with our dear family. A day later I noticed that both legs were covered in a rash, which lasted for quite a number of days. I popped into a chemist and was given a cream. I thought nothing of the rash and continued my holiday. I soon developed a cold, or what I thought was perhaps a severe allergy reaction to the summer pollen count. I tried everything under the sun, but to no avail.

Life initially continued as normal on my return home, but within three months, I was having digestive problems and bladder infections and experienced a ‘burning’ feeling in my mouth. Tests showed no abnormalities in the digestive system. Doctors visits became more frequent with unexplained pain in my joints and various parts of my body.

I felt like a hypochondriac as pain seemed to jump around from one joint to another. Soon I was struggling at work and desperately tired by midday – I am a teacher. Visits to the GP did not help, I mentioned to various medical practitioners that I had been overseas, had had a rash, but to no avail.

Teacher in despair

Fifteen months down the line, I was experiencing excruciating pain as muscles on the one side of my body went into a spasm, from my neck down into my arms and leg. I’d basically have to ask whoever was with me to take whatever was in my hand while it passed. I visited doctors, specialists, physiotherapists… I seemed to have one infection upon another.

Eventually I researched and found a doctor in South Africa who was familiar with tick-borne diseases, had tests which showed that I had been infected. I started treatment and continued for about 6 months, left off, and started again. My GPs do not support the diagnosis, which makes treatment difficult as I am never sure if the different medications will react with each other.

I am definitely in a far better space than previously. Am I cured? I wouldn’t know. I still experience some crazy days of burning sensations, cramping, inflammation and extreme fatigue but hey, I’m blessed to be here. Each and every day is a gift. We each have a cross to bear on this journey of ours, and from reading other stories, know that I’m one of the luckier ones, I’m forever grateful to the doctor who treated me as well as my Creator.

If, through my experience, my family, friends and acquaintances are more vigilant with regards to the complications caused by tick-borne diseases and more protective of their children and my grandbabies, my journey is worth it. Whatever challenges come my way, I pray that I shall always remain positive and grateful for the blessing of another day.

I’m currently on a lot of medications, relapsed a bit and tried building up my immunity. I bought a heated blanket and had several sessions in a hyperbaric oxygen chamber. Both have helped me, especially the oxygen chamber. I would encourage everyone to try it out.’

‘My road to recovery took 18 months’

‘Now that I don’t suffer the symptoms of Lyme, I can work again, albeit part time. I can walk, swim, and attend social events as well as have a drink, without crushing fatigue. I can sleep well again at night.  My road to recovery took eighteen months using consultations with a herbal practitioner knowledgeable about Lyme and the use of antibiotics according to the NICE guidelines, although this occurred late in the development of the disease.

I implemented changes in my diet to reduce inflammation in the body including going gluten-free, reducing sugar and caffeine and cutting out alcohol. Use of turmeric, Epsom salts, and magnesium supplements helped.  I discovered the benefits and my love  of cold-water swimming and cold showers which I still continue to do.

Getting better took sheer tenacity, sticking with treatments, and also a willingness to try new things. It was a lonely journey at times but I am grateful to have my life back.’

Woman walking in the woods

Finding purpose and knowing my own limits

‘I found myself on incapacity benefit following a twelve month delay from infection (in 1996) to a positive test and being extremely ill. I had previously enjoyed a very active life in Country Sports, being self employed as a shooting instructor and a regular competitor at clay pigeon shooting. The thought of being on benefits, perhaps forever, was not something I could live with, so with the help of the benefit system I was allowed to try to go back to work part time and continue with my claim in 1999. The support from my GP at this time was basically nil apart from the medication for joint pain.

I found working for one day would mean the next two or three days required complete rest, but I was determined that Lyme disease was not going to beat me. I also tried to go back to competitive shooting but soon found out that being unfit and still suffering from brain fog, it was not going to work.

In 2005/6 I was given the chance to run a fishery and was now off benefits, but luckily I had others to do most of the manual work. I had reached a stage where I knew what I could do and what I could not manage. In 2009 we made a move to Scotland, and I found that my new GP was very helpful and interested in Lyme disease.

Still suffering from many setbacks, and at times feeling like I had started the disease all over again, I was re-treated several times with antibiotics and other medication. I soon found some clients for shooting instruction but limited the amount of work to suit how I was feeling, and what was manageable. After the statutory residential two years’ wait, and competing at a few shoots, I tried for the Scottish International Team and was successful at the first attempt. It was hard work and I spent hours trying to keep fit enough to shoot well in two-day events, but it was worth it, and perhaps my greatest achievement since getting the disease.

Now mainly retired, I fish, clay shoot and work in the garden when my body tells me I can do it.’

Man fishing