Emily & Oliver Battle Lyme Disease

The Short Version

Myself and my five-year-old son are battling Lyme Disease and the associated co-infections and are appealing for help to allow us to access urgent medical care. The NHS do not have an agreed treatment plan for Post Treatment Lyme Disease meaning that there no support in any form for us. If you present at A&E/GP with a tick or a rash, you will, at best, be prescribed 3 – 6 weeks of doxycycline. If your symptoms persist after this point, you will be classified as a person with ‘Post Treatment Lyme Disease’ and will be told that there is no further support which can be provided.

Late-stage Lyme Disease is a chronic condition which robs you and the people around you of any joy or happiness. Lyme Disease and its associated co-infections are caused by bacteria and parasites which evade and suppress the immune system allowing the disease to take over your body. There is not a single part of the body that it doesn’t touch, and the results have devastated my family.

Oliver and I are infected with the following;

Emily Blood Work and Active Infections;

Low Erythrocytes Count

High MCV Count

Immune suppression

Borrelia

Bartonella

C. Pneumoniae

C. Trachomatis

Yersinia

Oliver Blood Work and Active Infections;

Low Lymphocyte Count

Excessive levels of B12 without supplementation

High Haematocrit

High MCV

Low White Blood Count

Low Reticulocyte Count

Immune suppression

Borrelia

Bartonella

Babesia

Ehrlichia and Anaplasma

C. Pneumoniae

C. Trachomatis

I have been on treatment in Ireland for 17 months and Oliver 8 months, but the medication hasn't successfully treated all of the infections resulting in us having to look elsewhere for the final stages of treatment.

The Germans have great experience in the treatment of Lyme Disease and Coinfections so we would like to embark on treatment at a place in Augsburg, as I have a friend who had success at this clinic. Failing that, there is another clinic southeast of Munich called the St Georg Klinic which also has great success treating Lyme Disease.

To date, we have done all of this ourselves and we simply cannot sustain this level of spending. My husband and I have always worked and lived well within our means which has allowed us to save money in the event that we may need it. I have never believed in chronic illness and still, despite living this horror, struggle to get my head around how there is no support for patients suffering with Lyme Disease on the NHS. My opinion has always been ‘go for a walk, have an apple and you will be fine’; for this to have happened to us has been degrading, humiliating and very very stressful.

We have spent around £40,000 in the past four years with over £25,000 being in the past 12 months, on various treatments and supports. This cost is excluding the tests, consultations, MRI’s etc which were originally covered by our medical insurance.

If someone had said to me five years ago that I would be on the internet begging for money I would have laughed and thought that they were mad. I could never imagine being in this position because we have lived with the understanding that if you can’t afford it, then you don’t have it. Unfortunately, I didn’t consider a time where we would be fighting a disease whereby you need rockstar wages to be able to access treatment.

We are asking for a contribution to our treatment to allow us to both access the medical help that we so desperately require.

I have gone from a person who was always busy, out and about and fun to being a shadow of my former self. I rarely leave the house (other than the school run and medical appointments) and am living in fear of my condition. I go to bed between 1830- 1945 as I am so exhausted from being awake and if I exert myself too much then I know that the next day will be unbearable.

Oliver struggles with the most basic of tasks and it is very sad to see a child unwell and abandoned by the healthcare system. Oliver is unable to attend fulltime education and spends most of his days stuck in the house with me. Due to his condition, people tend to stay away, and it is incredibly isolating for him and for us as parents. It is heart-breaking to hear him continually complaining about being in pain and knowing that as each day passes, he is getting worse.

We no longer ‘live’ as a family, we do whatever we can do just to survive each day.

A huge part of having an invisible (to an extent) illness is that you carry on. If we had cancer, we would be given treatment on the NHS and would have a clear plan as to what would happen. There would be support groups that we could access, and people would be on hand to help us manage the disease. In our world, we have no idea what each day (sometimes hour) will bring and, as well as fighting the physical pain and worry, I also have the constant fear of how am paying for this.

I am very confident that with the correct treatment we will make a recovery, but we need the funds to help us get there. I am not asking to be fully healed or pain free, but to be in a stable state where I can safely leave the house and not worry about ending up in hospital. Given Oliver’s age I am positive that we can get him to a level where the infection is under control and his brain can function as normal.

The full costs of our treatment are still unknown, but based on the information that we have been given, it will look as per the below;

Estimated Costs for Oliver

Armin Labs Testing Every 8 weeks £10,500

Consultations/Letters Every 8 weeks £1,575

Flights/Trains/Taxis Accommodation to Germany TBC (our last visit was £900) £1,800

Antibiotics/Herbals/Antivirals Every 8 weeks £14,000

Probiotics/specific vitamins/infusions and binders Every 8 weeks £1,050

Estimated Total Cost for Oliver Annual £28,925

The antibitocs were not strong enough on the original regime meaning that antibitotic resistance is a possibility. The sole use of antibiotics may not be the only route of choice for us going forward and will instead have to embark on alternative treatments such as Hyperthermia, immunotherapy, Ozone Therapy etc (all of which have shown wonderful results in other patients).

Estimated Costs for Emily

In Clinic Treatments due to Antibiotic Resistance

The St Georg Klinic has indicated the below costs;

Two-week Borellia Package 18,500 Euro

Accommodation at the Hospital 67.85 Euro per night (*21 for treatment = 1424.85 Euro) Please note, I would travel alone as the cost for another person is too great.

Third week of detox therapy 6,500 Euro

Two-week Co- Infection Package 14,000 Euro (this also incurs an additional 14 day hospital stay which equates to 949.90 Euro)

Armin Labs Testing Every 8 weeks £10,500

Antibiotics/Herbals/Antivirals Every 8 weeks £14,000

Probiotics/specific vitamins/infusions and binders Every 8 weeks £2,500

Total Cost for Five weeks of treatment 40,424.85 Euro

Total Cost for the remaining treatment £26,500

Estimated Total Cost for Both to be Treated £91,425

The Doctor advised that we require a minimum of 12 months of treatment but that she was confident that she could help us.

I feel an obligation to share our story with as many people as possible with aim to hopefully help people to not suffer in the way that our family has. Our lives have become defined by our disease, and we have been unable to focus on anything else. If our concerns had been caught earlier our treatment path could have perhaps been simpler. As with every illness, time is of the essence. The quicker that suitable treatment can start, the higher the chance of success.

We understand that times are difficult for a lot of people, so even if you are unable to make a donation, we would be grateful for you to share our story in the hope of raising as much awareness as possible.

If you have a range of seemingly unexplained symptoms which are cyclical and progressive in nature, think Lyme Disease. Don’t rely on UK testing and do your research. The sooner you get the correct diagnosis, the sooner you can start the correct treatment plan.

The Long Version

In hindsight, I believe that I have suffered with Lyme disease for at least twenty three years, but I wasn’t debilitated by it until after the birth of Oliver where my health took a decline. Given that I was a new mum and breastfeeding, I put down a lot of my symptoms to adjusting to a change in lifestyle. In 2019, two years after the birth of Oliver, my symptoms were becoming extreme. I started to feel nauseous a lot of the time, I had excessive thirst, regular bouts of fainting, migraines and extreme fatigue. I started having blood tests done, but everything came back as normal.

By 2020, my symptoms were progressing, and life was becoming increasingly difficult. My visits to the doctor were becoming more regular but I wasn’t given any answers.

By late 2020 my symptoms were as follows;

•Nausea/vomiting

•Migraines

•Weight loss – my weight, despite eating high calorie meals, dropped dramatically

•Facial palsy

•Tingling in the extremities, numbness, pain in legs meaning that I was often immobile

•Fainting

•Day and night sweats

•Inability to maintain warmth through the day

•Hair loss

•Raynaud’s – so extreme that black marks appeared on tips of toes

•Nails on feet turned black and feet became so swollen and sore that the continually burst and were infected

•I started slurring my speech and was confused most of the time. I was displaying the classic signs of dementia

•Extreme thirst/urination. On one 24 hour urine sample I collected over 17L of urine

•Difficulties with movement, walking and struggle to grip

•Anxiety and panic attacks

•Yeast infections across the body

•Inflammation across various parts of the body making me look swollen and blobby

•Decline in vision resulting in the need to wear glasses

I was told by the NHS that I was merely depressed and that there was no physical basis to my symptoms.

Thankfully, we had private medical insurance at the time, and I had access to a private GP who was a shining light in what was a very dark time.

The private GP said ‘I have no idea what is wrong with you as your symptoms are so vast, but my job is to engage various consultants and go through a process of elimination to get you to an appropriate diagnosis’. She was a key part of helping me gain some answers.

Over the period of eight months, I saw two neurologists, a rheumatologist, three endocrinologists, a cardiologist, a dermatologist, a geneticist, and an infectious disease consultant, unfortunately all through the private sector. These specialist appointments were all over the UK resulting in use of holiday entitlements, travel costs and policy excesses.

I was found to have lesions to the cerebellum but given no reason as to why they were there. This was put down to the reason why I was struggling with balance and my gait.

My pituitary gland was enlarged and perhaps could account for the hormonal disturbances.

My heart was found to be enlarged/inflamed which would account for the tachycardia, swelling of legs, tingling in arms, shortness of breath, hair loss etc.

My adrenal glands had been under so much strain that my cortisol output was abnormally low, and I was suffering from adrenal fatigue.

Ehler’s Danlos was given as a suggestion due to the breakdown of connective tissue, something which is common in Lyme Disease. As there is no test for the hypermobility gene, they have made a clinical diagnosis of Hypermobility Spectrum Disorder.

My blood tests also showed issues with my electrolytes, low sodium and high potassium, low iron and megaloblastic anaemia. At my lowest point my sodium was at 117 and I was hospitalised for three days.

I have regularly attended A&E with varying issues. I have been told that my case is ‘too complex’ to be dealt with on several occasions and ultimately sent home.

I was in so much pain and my life was falling apart with no answers.

In February 2021 I had a chance meeting with my neighbour. She had said, “I hope that you don’t think I am rude, but we never see you anymore and you look like a shell of your former self”. I explained to Rebecca that I had all of these weird symptoms and every test that I do doesn’t account for what is happening to me. Rebecca went very pale and invited me to her house where she started talking about Lyme disease. She shared her folder where she had documented every detail of her journey. She explained that the testing and treatment isn’t unavailable in the UK and Lyme treatment isn’t covered by insurance. Despite her story baring so many similarities to mine, I was reluctant to spend the £645 for the Lyme test. The company that I worked for paid for our medical insurance and they had an Infectious Disease consultant who was covered and based in Harley Street. I met with the doctor who suggested that it was more than likely, given my symptoms, that I had Lyme disease. He arranged for more blood tests, and I had sixteen vials of blood taken several weeks later. I was confident that I would test positive and that I would be able to start treatment, but, to my horror, the test results all came back negative. The doctor prescribed 6 weeks of doxycycline as he still felt that I had Lyme disease but did explain that he was bound by the NICE guidelines and was unable to do any more.

I continued to be unwell, so bit the bullet and spent the money on the Armin labs test. Within a week, the results were back. I tested positive for Borrelia (Lyme Disease) and co-infections. Bizarrely, I was elated. I had answers. I knew that it was going to be a struggle mentally, physically, and financially but I was so happy to finally know what I was fighting. I started my research into which clinic I was going to use. There are many amazing clinics in America and Mexico, but the cost is too great, and we were in the midst of the global covid pandemic, and there are other options closer to home that I wished to explore. Rebecca had successful treatment at the BCA clinic in Germany, but she said that the language barrier was a real issue. There was a new clinic which had opened in Dublin and the consultant in charge was a professor of Infectious Disease with a very extensive CV. We had savings and we are very good at budgeting, so I allocated the funds to this. I was angry that we were having to spend the money on something which we pay our taxes for, but I knew that we had no choice and it meant that I would get my life back.

I reached out to a doctor in Ireland that week to book my consultation. Dublin’s borders remained closed due to the covid pandemic, so I had to wait several months before been given an appointment. During that time, I started on herbal medicine that I had bought online and had started to see improvements to some of my symptoms. I went to Dublin in October 2021 and started treatment within days of returning. We incurred huge costs, and I was continually worried, but I knew that we had no option.

I started to see marked improvement in how I felt, with some symptoms being knocked off. I was starting to feel better and that there was light at the end of the tunnel. I am a keen walker, and I was able to manage 30 minute walks on some days which was incredible given where I had been previously!

However, in the December, we received another blow; Oliver had started to display exaggerated symptoms leading us to suspect he too was infected. I had Lyme disease whilst pregnant with Oliver and had unknowingly passed the infection to him. He was displaying the following symptoms;

•Persistent cough (like a smokers cough)

•Rashes and strange marks across his body

•Mottled skin

•Regular sickness and recurring fevers

•Hair loss

•Facial flushing, rashes and regularly bleeding

•Extreme hunger

•Incontinence/Urinating regularly – sometimes four our five times an hour

•Rapid heart rate – often when at rest

•Ear infections/pain

•Stomach aches and pains

•Vomiting and general feeling of unwell

•Pale stools – three to five times per day

•Yeast on tongue (despite a good diet)

•Tingling in feet and hands

•Spacey with inability to focus (like he was heavily drugged)/weak and floppy

•Raynaud’s

•Backache

We paid a further £645 for testing only for the results to come back as negative. This is common in testing due to the bacteria evading the immune system and therefore not giving an antibody response.

I engaged a private paediatrician in the UK. This was covered by my husband’s private health insurance with us just having to pay for the excess. Oliver was assessed, I shared my history and the photographs of the symptoms, but were told that, other than potential ADHD, there was nothing wrong with him.

To be sure, I also engaged a paediatrician on the NHS. By her own admission, the doctor wasn’t aware of Lyme Disease, the symptoms, or how it presented in children. Despite my history, the photographs, and the medical facts of transmission through pregnancy and breast milk, she accused my husband and I of making up Oliver’s symptoms.

I had been through this battle myself so knew that I would be taking him to a Lyme literate specialist, but, I had a duty of care to ensure that I ruled out any other causation to Oliver’s symptoms.

On my next visit to Dublin, I took Oliver with me. Given his symptoms and my medical history, the doctor made a clinical diagnosis of Lyme and agreed to start treating Oliver in July 2022. We have seen stark improvements in his health, and he is a happier and healthier boy. However, the doctor, as with myself, has failed to tackle the coinfections, resulting in bartonella and babesia becoming dominant within his body. This has resulted in Doctors’ here believing that Oliver has ADHD and Autism. There are many studies which show that bartonella infects the brain and causes autistic symptoms. As bartonella is treated these symptoms disappear allowing the person to function as normal. I am confident that if Oliver was to be appropriately treated that he would be able to live as a ‘normal’ child. At this stage, Oliver is not in fulltime education and requires special support and assistance. Despite being almost six years old, his needs are that of a much younger child and his behaviour can be incredibly challenging at times. He lives his life in physical and mental pain, and it is horrible to witness; especially knowing that I am guilty of passing him these infections.

I stopped treatment in November 2022 and my health took at rapid decline. We have reached out to various clinics and read patient forums to try to work out our next move. The BCA clinic in Germany has been renamed to Alviasania and, given my friend’s success here, I think that this is an option for us. We visited the clinic in February 2023 where we met with a very experienced doctor. We were in the clinic for three hours and felt reassured that the doctor was taking a very thorough approach to our analysis. This was a stark contrast to the clinic that we visited in Dublin were the maximum length of our appointment was 20 minutes and didn’t include any physical examinations.

We did testing in Germany, at a cost of €3400, and our results came back showing the following;

Emily Active Infections;

Borrelia

Bartonella

C. Pneumoniae

C. Trachomatis

Yersinia

Oliver Active Infections;

Borrelia

Bartonella

Babesia

Ehrlichia and Anaplasma

C. Pneumoniae

C. Trachomatis

We presented these results back to the NHS and begged for support. As there is no agreed treatment plan for late-stage Lyme Disease, I have been offered diagnosis of Chronic Fatigue and Fibromyalgia, of which there is also no treatment plan. Oliver, despite abnormal blood results, hasn’t been given any sort of plan. In a nutshell, if we do not find the money for private treatment our condition will progress making us more disabled and we will prematurely die.

Our disease isn’t uncommon in the UK, or indeed the world. My aim is to receive the appropriate treatment for Oliver and I, heal and then be able to share our story full circle. I would like to give hope to those who have been diagnosed with MS, ME, Chronic Fatigue, Fibromyalgia, Rheumatoid Arthritis, ALS, Autism, ADHD, POTS, Ehlers Danlos, and many more that there is a treatment plan and the opportunity to get better. Sadly, as things stand, unless you have the funds to pay for it, you will be unsupported.