When Late Stage Lyme Disease Feels Like a Game of 'Pin the Tail on the Donkey'
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.
AHHHH!
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
I'm searching for the words to try to explain my journey fighting Lyme Disease and all that go along with this life-altering diagnosis. In 2010 my world came crashing down when I was told those earth shattering words that many of us live to fear, “You have cancer.” I was in Washington state at the time and thankfully my mom was able to fly in and join the support system I had there. From there we came back to Mississippi and was seen at West Clinic and after two biopsies determining that they believed I had Non-Hodgkins Lymphoma. By the grace of God my tumors disappeared. I can remember being in the hospital and asking about Lyme disease. It was brushed off and treatment for histoplasmosis began. Several PICC lines and countless vials of IV medicine over an almost year and half process that round of treatment was ended. The next few years were spent in and out of the hospital and emergency rooms. A list of specialists a mile long diagnosed me with a list of diseases and disorders equally as long. With each new diagnosis or symptom, a new medication was added. It was only a matter of time before my body crashed under the weight of all the medications. In 2013 I was diagnosed with late stage neurological Lyme disease. The tests showed that I was undiagnosed for over 7 years. The crazy thing is that Lyme can mimic or cause Lymphoma so all those years I spent treating something that was caused by my Lyme disease. I started the first round of antibiotics via a PICC line in late 2013. By March of 2014 I had endured six PICC line infections, removals and replacements when the doctor's decided to put in a portacath. After nine months of IV antibiotics treatment twice a day of 3 different medications my body was falling apart. In the process of trying to kill my Lyme and coinfections the treatment was unfortunately killing me. I was bedridden most of the time and unable to enjoy life or even participate. It was after a very honest talk with my doctors that we realized this was not the path for healing. I worked hard over the next year and a half to try to rebuild my body after the havoc of Lyme and treatment. I lost 120 pounds, started eating healthy and exercising and took myself off every pain medication/ pharmaceutical that were flooding my body. It was during this time of sickness and hope for recovery that I found my true passion in life and enrolled in college to one day become a pediatric oncology nurse. Sadly, this window of health was short lived and by the end of 2017 I was beginning to show symptoms of my disease no longer being in remission. In early April of 2018 I was forced to face the truth and resigned from my job and started the process again of IV antibiotics treatment. Within the first dose of treatment the side effects began, chronic nausea and vomiting for hours on end. Excruciating pain and migraines coupled with severe muscle spasms and the loss of any muscle control at times. I don't know how to explain to someone that hasn't been through a life changing chronic illness what it is like to feel yourself slipping away. Or the overwhelming fear when you stare down at your own legs and your unable to stop the violent convulsions. Or the heartbreak that comes with discovering your teeth are breaking off because of the acids from throwing up so much and so often. And in the midst of all of this turmoil, knowing if you could only have access to higher qualified doctors and healers that you could return to a better quality of life; not confined to the four walls of your bedroom which has now transformed into a mini hospital unit. As it stands now, my doctor has informed me that I am out of options for beating this disease. The ONLY next available step is to check into a treatment facility that is designed to treat the disease and heal my body. I've been blessed in my life to have experienced some amazing and miraculous events. I'm truly grateful for having some of the kindest and most compassionate people sprinkled in throughout my life and over the years with this gruesome journey of living with a life-threatening disease. My fear is that at only 33 years old, after overcoming every struggle so far that this disease will rob me of so many more life experiences that were once in store for me. Or that even worse, I will continue to slowly deteriorate until I'm no longer myself or unable to recognize those I love or them me. In the meantime, I want to raise awareness about this disease and what it truly does to someone.
lymesouthernbelle