Help India beat Lyme Disease

My name is Nathaniel and I am raising money for my girlfriend India's Lyme Disease treatment program in Germany.  She has been suffering from this horrific disease for over 6 years and we need your support to get her life and independence back. 

 

 Lyme Disease is an extremely debilitating chronic illness that often goes unnoticed due to the lack of medical knowledge and research. Unfortunately, if not treated in the early days Lyme disease can become chronic, at which point treatments and recovery become extremely complex...and VERY expensive! The spirochetes can spread and may go into hiding in different parts of the body. Weeks, months, or even years later, patients can develop problems with the brain and nervous system, muscles and joints, heart and circulation, digestion, and skin. Symptoms often come and go and appear at different times, mimicking other illnesses. It is incredibly difficult to diagnose and known as the ‘great imitator’.
 
On average most Lyme patients have to fork out thousands each month on treatment. Sadly the NHS doesn’t recognise the chronic form of the illness, so the only treatment option available is a 3-4 week antibiotic course of doxycycline, which only treats the acute form. To add to this testing we have in the UK is hugely unreliable and out of date compared to European countries and America.  

200 FOR LYME

On the 14th of May, I will be walking 200 miles in 7 days, from my front door in Leeds to my girlfriend India’s front door in Bath, to help raise money for her treatment costs. 

I met India 6 years ago. We were both backpacking through Southeast Asia, enjoying life as any 18 and 19 year old should be. I was drawn to her and quickly learned what a funny, beautiful, and charismatic young woman she is. After a few weeks, we parted ways and she quickly became very unwell. She was hospitalised in Japan before flying home. We kept in touch and she would tell me about the awful symptoms she was experiencing and voice her frustration that nobody could determine what was wrong.

 

India was due to start university a few months later and was confident she would feel better. Neither of us could ever have imagined that six years later she would still be fighting every single day for nothing but normality. To wake up and feel like the same show-stopping young woman she knew she used to be. I have watched India put others before herself endlessly over the last 6 years. She is an incredible person who never lets her own illness get in the way of her selfless nature and beautiful soul.

 

Although this walk is in no way shape or form comparable to the daily struggles India faces I want to push myself mentally and physically, to try and achieve something good, for a great woman. In my eyes, there is nobody who deserves it more.

 

INDIA'S HEALTH JOURNEY SO FAR:

 

It all started back in 2016 on her gap year around South East Asia. One evening she was bitten by an insect in a local restaurant in Thailand. Not long after, she began experiencing fatigue, a stiff neck, and fever. As it’s common to pick up various bugs traveling she ignored it, and tried to carry on as normal. Little did she know what was about to come next. Within a month her symptoms had spiraled out of control, “I remember waking up in the middle of the night in my hostel in Singapore with blurred and foggy vision, tingling up and down my arms and legs, and a completely numb neck- it was honestly one of the most terrifying experiences of my life.” Over the following weeks, more and more debilitating and bizarre symptoms developed, including seizures, waking up with my whole body paralysed (sleep paralysis), sensitivity to noise and bright lights, and all over body pain. “I would wake up every morning with a new strange symptom to add to the already lengthy list.”

 

Back in England, the saga continued, and these horrific symptoms quickly became India’s version of normal, in other words living hell. As the weeks and months went by the pain, fatigue and debilitating symptoms worsened. In total India has easily suffered from over 80 different symptoms. “I would cry myself to sleep only to dream about what was going on in my body. It felt like my tingling nerves were being electrocuted and in turn would make me feel spaced out and give me headaches. I began to notice body parts weren’t moving as they should; my legs would take time to register what my brain was telling them, causing me to trip and stumble. I struggled to string a coherent sentence together, it felt like my brain forgot how to speak and understand English as if it was covered by an unmissable fog. Constant air hunger caused me to feel as if I was suffocating from the inside out. My list of symptoms was and still is endless.”

 

India was referred to almost every medical consultant under the sun, with a different diagnosis each time but with the same end result. She saw neurologists, rheumatologists, tropical disease specialists, and ophthalmologists to name a few. “My diagnoses varied from suspected MS, Chronic fatigue syndrome, to thyroid dysfunction. I had many different neurological disorders- fibromyalgia, neurological functional disorder (a poor excuse for unexplained symptoms), and my personal favourite, psychosomatic disorder. I would have frequent seizures and bell's palsy (a syndrome where part of my face would be paralyzed and slump to one side.) I was prescribed antidepressants and told my pain and symptoms were all in my head, that it wasn’t ‘real’.

 

By the time she was finally diagnosed with late stage Lyme Disease a year and a half later at a clinic in Germany, she had lost all sense of normalcy. The things we all take for granted like reading a good book, holding a conversation, watching a film, going for a walk, and even taking a shower, had become a struggle.

 

Over the years India has spent many hours and nights in A&E due to the intensity of her symptoms. She has also suffered from pancreatitis and developed several autoimmune conditions including daily orthostatic hypotension (extremely low blood pressure), and not to mention her mental health has of course taken a big hit.

 

To put her illness into perspective, India is unable to take part in most ‘normal’ activities and daily tasks most 24 year olds can do without thinking. She feels unwell every time she drinks alcohol, her symptoms flare up massively if she has a poor nights sleep, going on a quick 10 minute run could put her in bed for a week with intense headaches and head pressure, and any form of transport makes her feel spaced out and dizzy, she has to be careful with the food she eats and she can’t focus on things for too long as it causes strange visual and head symptoms (this makes working, staring at a computer, driving and extensive reading incredibly challenging).

 

Six years on, India would argue she is far from better. Although many may not know or realise it because she looks ‘well’, she still experiences a broad range of neurological, autonomic, digestive, heart, and fatigue symptoms on a daily basis.

 

TREATMENT

 

India has spent the last 6 years trying many different recommended Lyme treatments including 2 and a half years of strong antibiotic therapy, herbal medication, acupuncture, nutritional therapy, physiotherapy, chiropractic treatment and osteopathy. All treatments have been self funded by India’s family due to the lack of resources and awareness of chronic Lyme disease from the NHS. Tens of thousands have been spent so far; and though many of her symptoms have improved, India is still suffering on a daily basis and is far from leading a normal life.

 

Through the Lyme community, India has found a promising hope for remission from a clinic in Frankfurt which offers an integrative 12 month Lyme Disease treatment program. India would spend 2 weeks at the clinic followed by a 4-month home program, followed by a 4 day follow up treatment at the centre. After which she would receive an optimised home care support for a further 8 months. Each part of the treatment consists of a number of diagnostics, therapies, and treatments, all with the aim of boosting the immune system, repairing cell damage, and helping the body to heal itself. The whole program costs 20k not including travel costs. 

This clinic and many others in Europe have finally given some light at the end of what has been a very long, dark tunnel. Due to her condition, India has lost her independence, something many of us take for granted.  She may never make a full recovery, but this clinic is the best chance she has at leading a relatively normal life. 

Thank you so much for taking the time to read India's story, and helping us to raise awareness for such a horrific disease. Your support means everything to us, and we are hugely grateful for any donations, big or small. 

 

 

 

THE WALK:

Day 1: Home --> Elsecar, Barnsley (28.9 miles). 
Day 2: Elsecar, Barnsley --> Higham, Alfreton (29.1 miles).
Day 3: Higham, Alfreton --> Tutbury, Burton-On-Trent (26.1 miles).
Day 4: Tutbury Burton-On-Trent --> Deritend, Birmingham (30.7 miles). 
Day 5: Deritend, Birmingham --> Evesham (29.8 miles).
Day 6: Evesham --> Cirencester (30.0 miles).
Day 7: Cirencester --> Finish Line (27.6 miles).

 

Follow @200forlyme on Instagram so you can all follow my journey.

We appreciate any donations and support, and with a combined effort we can hopefully get India to a better stage of health.  "I hope I can look back on my life in 5 years with a glass of vino in my hand and feel thankful for my health."

 

Even if you don't help, and if you've read this far, thank you because even reading helps educate and shine light on a criminally misunderstood chronic illness.

 

Also, If anyone fancies joining me for any leg of the journey, give me a shout! Cheers to a healthier 2022.

 

Here’s a brief interview with india in the early days if you fancy a read. 

https://www.somersetlive.co.uk/in-your-area/the-past-two-years-felt-1692855

Finally I would like to say a huge thank you to: 

The Market Hotel in Elsecare, 
Ken and Slyvia in Higham,
Jane in Tutbury,
Old Crown Hotel in Deritend,
Stuart in Evesham, 
And The Old Brewhouse in Cirencester. 

Without your generosity and good hearts the walk would not be possible. I highly recommend all of their accommodation, not only for their fantastic rooms, but for the kind people that own them.