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When Late Stage Lyme Disease Feels Like a Game of 'Pin the Tail on the Donkey'

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I think the cold hard truth with chronic late stage Lyme is that no one really knows what to do. Seriously. It’s become this terrible twisted game of pin the tail on the donkey – but instead, it’s a dangerous game of pin the treatment on the patient.

Treat it as autoimmune disease like lupus, no wait – it’s more like cancer. No, maybe reacts in the body’s T cells like AIDS, or maybe it’s neurologically linked like multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS).

I’ve seen everything from encouraging years of IV antibiotics to no antibiotics at all. Coffee enemas, drinking turpentine and even low grade chemotherapy!

And the diets. Eat sugar. Don’t eat sugar. Don’t eat anything white. Blood work is showing very low glucose. So, add some sugar back into your diet – just not refined sugars. Gluten and dairy are enemies, or wait – is it now you’re being told you need the good bacteria in yogurt to restore your gut?

And of course everything must be all organic, farm raised and hand fed by a loving farmer that personally blessed each animal before slaughter…or wait, no that’s wrong. It’s no red meat. Chickens must be free-range and have at least an acre each of rolling hillside to roam. But don’t eat the eggs. Or the chickens, just in case.

Then you get into herbal protocols. You can go with Buhner, Rawls, Cowden, and I’m know there are more – which all come with their own rules and ideology on how to cure Lyme.

Don’t forget to hydrate! You have to drink your gallon of water a day and it has to be extra high pH level with real lemons in it, or was that cucumber or turmeric? Anyways, it at least has to be an ounce for every pound you weigh. Wait, that doesn’t seem right.

Despite the fact that you’re probably throwing up even the cucumber-lemon-turmeric water, here’s some huge diet changes you should make too: try “Keto,” “Paleo,” “South Beach,” low fat, no carbs, vegetarian, vegan, raw foods, whole foods….

Oh, and then the supplements that get thrown at you too. This juice, that cream, these patches they all are miracle workers for low energy and fatigue. You should try these too.


It’s no wonder most people with chronic or life-threatening disease are so anxious! It’s all so overwhelming and you feel like people assume you don’t know about your disease. I assure you, living this life has given me a whole other knowledge set that unfortunately did not come with a degree.

However, I have lived this!

Believe me when I say I’ve tried most of the above mentioned remedies and treatments. Honestly, I will keep trying until I find something to help take even a few inches off this Lyme giant inside of me. And that’s how every person with late-stage, post-treatment, chronic or whatever other description that particular ideology deems correct for your stage of Lyme feels every single second of every single day. I’m sure it was even hard to follow along with that train of thought, let alone imagine living it.

It’s exhausting! Overwhelming!

And most of all, frightening.

Please know I’m not saying any of this about the people that personally contact me because I know that comes from a place of love.

All of this is geared towards the medical field and where patients usually turn to for answers when their bodies breakdown. The doctors and specialists that I’ve personally looked at with tears in my eyes and test results in my hands, without one real answer from them. It’s always, “Let’s try changing ____,” or, “Why don’t we see how you do on this medication?”

No thanks.

I was a medical guinea pig for years. I followed every doctor’s recommendation and all it got me was a two page long list of medications to treat the side effects of the previous medication and lead to me literally filling out my will. I’m not interested in that! I will weather these terrible symptoms from my disease with as little medication as possible.

I’m not seeking treatment for symptoms…I’m yearning for healing!

So let’s start there! There has to be a cure and the only way for anyone to find it is to start at the source, not the symptoms. Until then, it’s welcome to “Lyme Wonderland.” Where up means left and negative means maybe.

Doctors are more like Mad Hatters, and you definitely are Alice. Looking around wondering, “Have I gone mad?”

Getty Image by bortonia

Originally published: July 20, 2018
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