Lyme disease: Where am I at?

Ten years have now passed since the initial onset of my Lyme disease symptoms, and I’ve been on a learning journey since I discovered its presence early last year. Lyme disease and the complications that have arisen from it have monopolised my entire twenties; a whole decade of my life. But I’m finally treating it now so there is light at the end of the tunnel – it just happens to be a very long tunnel.

Receiving the right treatment from the NHS has been difficult; they are working with outdated treatment guidelines and a serious lack of Lyme knowledge. My GPs have been helpful in making referrals and doing what they can within guidelines, but I’ve had a nightmare elsewhere with unreliable consultants and insufficient appointment systems.

I did make it as far as the Infectious Disease Clinic at Hammersmith Hospital though, and was offered a lumbar puncture to look for Lyme antibodies in my spinal fluid.

This procedure is invasive and unhelpful, often producing false-negative results in Lyme disease patients. I’m riddled with symptoms and already have proof of exposure in my blood, so a lumbar puncture seemed like a huge waste of time and resources.

I asked the Infectious Disease Consultant several questions about the procedure but he was unable to answer them (!) so I cancelled the lumbar puncture and haven’t heard from them since. Not even a discharge letter.

Amongst all the other infuriating things us Lyme patients have to deal with is that anyone with a bit of acne can access long-term antibiotics through their GP, but if you have Lyme disease, a bacterial infection known to cause actual death, there’s very little help available.

We have to be our own advocates and our own doctors; researching useful information and seeking guidance from each other. Luckily, there are some wonderful practitioners from other countries who are happy to share their knowledge with the chronically ill community, providing brilliant resources and educational tools.

Over the last year or so I have altered my diet, sought out the correct supplements, addressed genetic imbalances, and had more than 20 oxygen therapy sessions. I started Tai Chi and found a great myofascial massage practitioner too; all of which have helped me along.

At the start of August I began taking a high strength antibiotic, prescribed through a private clinic in the North of England. They have experience treating Lyme patients, and are the most affordable option I’ve come across. It’s not a magic pill and there are no guarantees, but it’s worth a try. My GP is happy for me to see the clinic and has kindly agreed to run kidney function tests when needed. It looks like I’ll be taking the pills until my symptoms improve or worsen; right now I just feel an extra bit shit.

Lyme

There’s so much to take into consideration, it’s not just Lyme. From parasites (yes, we all have them) to EMF, we’re a generation of sick people, and once our immune systems take a knocking it can be a super long journey back to normality.

‘Fun’ fact: WiFi can cause the release of 600 x more biotoxins than normal. Make sure you’re turning it off at night! Dr Klinghardt also states in this video that “The amount of cell phone radiation in a cubic inch of air is several MILLION times higher than it was ten years ago” which he has linked to many health conditions, including the high rise of autism cases.

The information made available to the public with regards to the dangers of tick bites and tick borne disease is seriously lacking, which is why organisations like LDUK exist. We’re run by volunteers working remotely throughout the UK. We work hard to help others, make change, raise awareness and prevent even more cases of Lyme disease.

Public Health England state that there are 3,000 new cases of Lyme each year, but research from Caudwell Lyme suggests the figure is much closer to 45,000 people. Astounding then, that just last week a woman was told “There’s no Lyme in the UK” by her GP – an actual qualified doctor who probably earns in excess of £60,000 a year and has access to the FREE RCGP Lyme disease course. It’s almost laughable.

So please help us to spread the word about ticks and Lyme disease. Protect yourselves, your children and your pets, all year round. Read this leaflet for prevention methods and visit the LDUK website for awareness materials.

Thanks for reading!

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Author: Rachel

Communications Exec by day, TV show addict by night. Fighting #LymeDisease 24/7. Postgraduate student at Brunel University, writing my way to a Master's degree in Creative Writing.

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