"Training regarding Lyme disease"

I have wanted to write for some time now regarding my experience with ill health, dismissive doctors, Lyme disease and the behaviour of health professionals within the NHS.

I want to give you a background of what was happening with me.

My health problems started in Spain 2009, general fatigue, brain fog, problems thinking, having to take naps, investigating for anemia or other deficiencies which may explain it. My health gradually declined to more serious issues in 2013 after contracting parasites in Guatemala, and at this point I was having regular feverish episodes, diarrea, nausea, vomiting, muscle pain and weakness, insomnia, hypersensitive senses (light and sound), emotional disregulation, swinging from anger to grief, unable to eat or digest food, throwing it all up. I finally hit rock bottom in 2015/16, with the addition of panic attacks, acute anxiety and rage, regular hallucinations, night terrors, insomnia, fatigue, body dysmorphia and varying mental disorders, regular feverish episodes, night sweats, nerve twitches hands, and face, heart palpitations, air hunger (feeling of not getting enough air), and body temperature dysregulation (switching from very hot to very cold throughout the day), bipolar symptoms and regular suicidal thoughts. These are only a few of the terrifying symptoms I endured every single day for a few years.

At my GPs surgery in Edinburgh I was never taken seriously, I was told I should take antidepressants and was even laughed at by one GP, when I couldn't get my words out properly or make sense. I was asked what I wanted them to do about it? I told this clinic I had been feeling suicidal and was living alone. Still no help. I told them I had physical and mental problems and had no support from anyone at that time and was finding it difficult to even go to buy food let alone cook. I missed appointments as I did not know what day it was and was unable to understand time, yet I received angry letters about missing appointments. I was asked by the practice to write down why I thought I was bipolar, or had mental problems, so I wrote pages and pages of my mental issues yet absolutely nothing was done. After these incidents I changed practices to meet kinder doctors who listened yet still did not offer much help.

Privately I sought out help, somehow in the midst of my madness, and found two helpful therapists, both who suggested my symptoms sounded like Lyme, and had other patients with the disease, and asked me if I had ever had a tick bite. I remembered that in 2009 before my health started to decline I had been bitten by a tick whilst living in the forest and this had indeed left an expanding bulls-eye shaped rash. All of my symptoms fit into place.

Back at the NHS, I was finally referred to infectious diseases, after a year of asking . Bear in mind I had been in in Central America for 3 years before to returning to Edinburgh ill, I feel should have been referred on much earlier after presenting symptoms after returning from travel. I had requested a stool sample be taken and tested for giardia yet when the sample was sent off I was informed that Giardia was not on the list of things it would be tested for so it came back 'all clear' after being tested for only 4 things.

At Infectious diseases in Edinburgh, I saw two doctors who said things like:-

- No infectious disease can cause mental health symptoms, you need a psychiatrist. I think this view is wrong.

- You have never been to a country that has Lyme. I am in Edinburgh, Scotland where I believe Lyme is present. There were no questions asked about my extensive travel history which includes many countries where Lyme is prevalent.

- They don't believe in Chronic Lyme. My understanding is that an untreated infection which shows gradually worsening symptoms, can be called a chronic condition. I believe Chronic Lyme exists.

They did not run any tests despite my long list of symptoms and travel history, they did not ask about my travels not did they appear to show any interest in asking about my symptoms. I felt like they only wanted to belittle me, and tell me it was all in my head.

After a year of avoiding the NHS (each visit gave me a setback due to the rage it awoke in me) and treating myself privately I went back to my GP about my issues, which I could no longer afford to treat privately.

My GP has said he will not discuss Lyme as he ''doesn't know enough about it''. I think this is an unacceptable answer from someone practising as medical doctor in 2018 in a country where Lyme is a growing problem.

I gave up on the NHS and began to look for private help, which I have found in Ireland and in Germany. I have paid (over £800) for private test results which confirm Lyme disease and co-infections, along with a chronically suppressed immune system while the staff I am seeing in the NHS are still claiming there is ''nothing wrong with me it must be in my head''. Still I cannot afford treatment.

Adding insult to injury. I have had to stop discussing lyme with my doctors for the benefit of my own emotional health.

This disgraceful behaviour cannot be allowed to continue. It has taken me around 2 years to write this as I have not been able to formulate a letter until now (my mental capacity was severely impaired).

The NHS is struggling, I know, they may not have the appropriate tests or medication or knowledge to treat lyme, and they may feel we are 'too complicated', and not want to admit failure/lack of treatment. However the least they could do would be to acknowledge the condition and validate the patient, and support them in any way they can, this alone would help the patient overcome much of the fear of being ill and unsupported, and anger at denial of their condition.

No matter If I had Lyme, giardia, syphylis or anything else, I should have had tests run for tropical and local diseases, I should have been taken seriously and helped, instead of being ridiculed by the doctors for the state I was in.

My mother was present with me at Infectious diseases and was witness to the above statements.

I understand there is more awareness now, even the BBC documentaty saying GPs were being sent letters about guidelines, but it appears the message is not getting through.

I implore you to take this matter seriously and see that the training regarding this disease, the NHS standpoint, and the behaviour of professionals be reassessed