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Story 127

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life? What inspires you?

This could happen to anyone of any age. Fighting the UK system that doesn’t believe that chronic Lyme exists, even though the scientific evidence is overwhelming, when the rest of the world seems to have it dialed, makes being sick that much harder. There is still no 100% cure for everyone and most treatment is mega expensive, but there are treatments that help you feel better. If you get Lyme in England don’t let doctors fob you off, it’s not their fault they have to follow guidelines or they get in trouble.

Guidelines that say 1 course of antibiotics fix you even though there are thousands of us still struggling with Lyme symptoms. Even though the medical world has recognized and proved this bacteria is a persister. But according to the NHS you coincidentally get MS or fibromyalgia or chronic fatigue syndrome or rheumatoid arthritis or lupus or Hodgkins lymphoma at exactly the same time. 

Luckily had the tell tale erythema migrans rash which is a given, so they say I definitely had it but now it’s gone.🤣😂🤣 You tell my muscles that when they twitch and cramp all night or my glands when they swell every other day, or my head when it hurts so bad I can’t speak, or my joints when they swell and click or when my kidneys start hurting so bad I want to cry. And when the brain fog hits it’s hard to understand anything you get so confused. This bastard bacteria fucks with every little part of your body.

As soon as I am strong enough, I am going to fight this inadequate outdated protocol to get better testing currently 15% (I think) reliable. And help to get at least one Lyme specialist in the NHS. Approximate figures are 30,000 people suffering in the UK alone but not one specialist, not one research centre that I know of but would love to find one.

It has ridden me bedbound, it has taken me out of life, it has given me more pain and discomfort than I ever thought possible. But it has also made me appreciate my life and my body. Lyme sucks, it’s hard to endure, it is like going to hell and back and then some.

If you are suffering from Lyme disease hang in there. And read ‘Why Can’t I Get Better? Solving The Mystery of Lyme and Chronic Disease’ by Richard Horowitz an actual expert on Lyme and other co-infections the tick gives you. You will stop feeling like you are losing it. There are so many of us just like you.

Where there is a will there is a way.

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