Our Lyme Story: Mandy and Steve Morris

My story goes all the way back to the 1990s.  I had my first bout of severe vertigo in summer 1994; my GP at the time diagnosed Labyrinthitis and slowly the symptoms subsided, but I did then suffer repeated bouts over subsequent years, and the symptoms really ramped up after pregnancies in both 2000 and then 2002. After much investigation, balance tests, and several MRIs and paying privately to see a neurologist I was diagnosed with BPPV and advised to follow a low salt diet.

My symptoms continued to wax and wane, and I always felt exhausted and lived with extreme insomnia. I also started to develop various allergies and food intolerances over subsequent years but thought this was just the way I was. I don’t recall any specific bite with a rash that far back, because I sustained lots of insect bites, and went on several holidays abroad in Europe, so anything that may have happened went unnoticed by me.

Fast forward to 2016 and my daughter returned from her school Prom in the July with the smallest black mark on her foot, and we couldn’t work out what it was. A local pharmacist advised us to just apply hydrocortisone cream as my daughter refused to see the GP. A few weeks later she developed a red ring on her foot corresponding to where the mark had been, and we put it down to pressure from her trainers. She then had a strange flu type illness early in the September, and we made no connection with all these events.

Life continued and then in summer 2018 my husband, Steven, sustained a bite on his knee in our back garden in Worcester of some type with a black centre; he simultaneously developed horrendous hip pain around the same time. Where we lived back then, on the outskirts of the rural City we were right besides fields and where there is much wildlife activity. The GP advised him that the bite was a spider bite and referred him to Rheumatology. The Rheumatologist diagnosed hip impingement and thought it was caused by being a cricket wicket keeper years ago.

The next summer in 2019 my husband sustained a further bite on his knee in our Worcester back garden and he simultaneously developed excruciating knee pain. A locum GP again said it was a spider bite and that the knee pain was unconnected – despite his whole knee joint looking visibly swollen. I was starting to think by this point, after doing lots of research that this could be Lyme Disease, so I persuaded my husband to return to see another GP for a second opinion. The second GP agreed that the rash around the bite was diagnostic for Lyme disease and diagnosed Doxycycline for 21 days. However, I knew that this most recent bite was the exact same scenario as the year before. Tinnitus then started to horrifically affect my husband.

After much more research and fact finding, I realised that my husband and I both potentially were living with long Lyme disease, and there is the chance that our adult children could also be affected as over the years they have displayed some recognisable “markers” for the disease. However, they have chosen, to date, not to seek any diagnosis or treatment.

In autumn 2019 my husband was seen by 2 different Infectious Disease consultants at our local hospital who treated my husband with disdain with regards to any suggestion of chronic Lyme disease, and this possibility was totally dismissed and not further investigated. The fact that he had diagnostic Erythema Migrans rashes on 2 occasions were ignored.

Further research by myself, and much questioning and soul searching, we realised that the only way to improve our health was to explore diagnosis and treatment via a private route with Lyme literate medical professionals.

By now I had also been investigated by gastroenterologists for stomach issues and was diagnosed with acid reflux. I had also been seen by Rheumatology who could see some arthritis in my spine.

In February 2020 we arranged for testing of our bloods at a private clinic in Germany. Our tests returned indicating that we were both positive for Lyme disease and some co-infections too. These blood test results were also provided to a leading Infectious Disease consultant in Dublin.

Then the pandemic struck, so our hope of travelling anywhere and receiving any treatment privately had to go on the back burner for some considerable time.

In the meantime, despite the pandemic, I was seen by various NHS specialists and consultants for further issues that were presenting themselves. I was developing multiple different eye conditions and problems, and my husband had to have physiotherapy for frozen shoulder and was starting to develop Dupuytren’s Contracture in both his hands too.

I was investigated by Neurology, and had more MRIs carried out. Despite seeing white lesions on my brain, I was advised that these were in congruence with my age. I was, however, diagnosed with spondylotic disease in my spine and neck, along with a split at L4/L5 in my lower back.

My GP also referred me to a different health authority Infectious Disease consultant (due to the way my husband had been treated at our local hospital). Unfortunately, I received a very similar dismissive attitude about Lyme Disease as my husband had.

My husband and I were finally able to visit to Dublin to be seen and assessed by a private Infectious Disease consultant in August 2021, and both prescribed an intense protocol of antibiotics, which we remained on for 12 months. Our symptoms became much improved, and we then changed onto a herbal anti-microbial protocol which we both still follow today.

Whilst we do still live with some symptoms and issues, we are so grateful to the Lyme Literate medical professional who treated us, and we agreed to be and are now part of a 10-year study at Trinity College, Dublin, into Lyme Disease. He enabled us to achieve a better level of health, to how we had been living, and we are able to return to him if we have any major relapses.

We even managed to downsize property towards the end of 2022 and move county to semi-retire so that we could have a more relaxed lifestyle and slow down more.

Unfortunately, shortly after arriving in Shropshire, I sadly sustained another nymph tick bite to my face. It was only because of our history and awareness that we suspected and subsequently knew what it was. Fortunately, our GP in our new town, maybe because it is such a rural area was much more understanding, in comparison to our previous experiences, and it was already on my medical notes that I had already been treated extensively for Lyme disease in Dublin. Our new GP took bloods from me for Elisa testing and prescribed me with Doxycycline. However, I started to become very ill with intense stomach pains in January 2023 and drenching sweats so I had to be seen as an emergency at Hereford General Hospital; I was screened for ovarian cancer and tested for virtually every infectious disease known, including Lyme disease (which was negative), and the only thing they could establish from testing was that I had “acute” Glandular Fever, though strangely I had no throat problems at all. My GP continued to treat me with Doxycycline for a total of 6 weeks.

Due to this most recent bite and reinfection I also returned to see the doctor in Dublin in February 2023 and was put back onto an intense protocol of antibiotics for 3 months to attempt to knock the extreme symptoms I was suffering from back into submission; again, further to treatment my symptoms massively improved, and I returned to my herbal anti-microbials.

In August 2023 I was seen by Rheumatology in my new health authority area. The understanding Rheumatologist listened to the long story, investigated and assessed me and my NHS further diagnoses to this are fibromyalgia and CFS. I continue to live with several issues and problems with my eyes.

My husband and I continue to live in semi-retirement, with some residual health issues which we are aware are most likely to be as a result of Lyme disease. What the future holds nobody knows, but we have no regrets about seeking and having treatment privately via a Lyme literate professional, because it has enabled us to get some of our life back again. We are also fortunate that we now have a very understanding, proactive and forward-thinking GP practice, who help us to look after our ongoing general health.

We are always keen to build awareness about Lyme disease, the signs, the symptoms, the treatment, and how the disease can become chronic, and if by sharing our story it helps just one person then we will have achieved something and that can only be worthwhile.