So I have Lyme Disease

So I have Lyme disease. I know.. you’re thinking what really is Lyme disease? or OMG this poor girl is going to have a horrible life. Perhaps, you are a fellow newcomer to the disease and are here for support and assurance that you’re not alone. Well, you’re definitely not alone! I mean heck, I have it.

Up until suffering from this disease, my knowledge was also somewhere in between what is Lyme and those who have it must live uncomfortably for the rest of their lives. It wasn’t until I started developing symptoms that I couldn’t understand that I recognized there was a deeper issue at hand than the multitude of diagnosis’ that Doctors were giving me.

I felt as though the world was moving in slow motion, and I was standing completely still. It felt as though I was trying to walk through cement during these episodes and as though the left side of my brain had been replaced with a brick. I felt heavy and bogged down, causing my thought process to come to a screeching halt. I have difficulty getting words out of my mouth, or making sense half of the time. I’ve said things like can you buy a jalapeno onion instead of a green pepper. I even replaced the word rectory with rectum. I was having difficulty swallowing, what felt like bee stings or electric shocks sporadically throughout my body. My ears were constantly ringing or in pain. On many occasions the volume in my ears would shut off and turn back on again. These episodes would last for hours on end.

In November 2015, I started experiencing knife stabbing pains on my skull and as time went on they became more frequent and would last for longer periods of time. By the time February 2016 came, these debilitating pains were all day, every day. I experience extreme fatigue all day and insomnia at night. I experience muscle stiffness, abdominal pain, and joint soreness. I feel bone pain around my ears, jaw and shins. I hear vibrations through my ears..Regardless of the number of hours I sleep, I experience extreme brain fog in the morning that lasts for 2-3 hours. I can’t handle multitasking during this time period or handle anything that revolves much of a thought process during it. To give an example, I put milk in a cabinet and iced tea in my coffee

I was put on seizure medication, migraine medication, pain medication and muscle relaxants but nothing was working. However, their diagnosis never wavered. Up until recently I had been diagnosed with post concussive syndrome with migraines and seizures. The thing is none of these explained half of my symptoms.

I’ve seen three neurologists, an ENT, a primary care physician, the emergency room.I had MRI’s, EEG’s, CT’s, VNG’s and lab work done. Everything came back normal, including the Lyme tests that my physician had previously ordered. Which by the way, is total crap. The CDC’s mandated lab exam for Lyme disease is rigged for anyone to fail, and are only 30% accurate. I’ll get more into that at a later date.

I finally took the advice of my Chiropractor after many failed medications, and visiting multiple Doctors over two years. I had a Lyme test done through a specialized lab called Igenix. Igenix is the leading laboratory in the world for Lyme disease testing. They test for multiple strands of the disease and (from my knowledge) are around 95% accurate. Low and behold, the results came back positive for chronic Lyme disease and all of my symptoms had an official answer.

Now I am facing a long road to recovery. Yes, I said recovery. People with Lyme Disease, even chronic Lyme Disease, can live a normal life. However, it can take a very long time to get there. Today was day one of my treatment. I am starting with 200MGs a day of Minocycline, probiotics and detox. I’ve also began removing all of the toxic junk from my fridge, freezer and cabinets. No gluten, no sugar, no coffee, no alcohol, no processed foods, no more fun food. But — all of these things will help limit the pain that comes along with Lyme Disease treatment, also known as Herxheimers reaction.

Stay tuned for more updates. I’m going to document my journey through this disease in the hopes to spread awareness, and to give hope to those going through it.

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11 thoughts on “So I have Lyme Disease

  1. I’ve been in treatment for 3 years now but I was sick for about 3 years before being diagnosed. Like you, I had to go to several different doctors to get a correct diagnosis. I tested CDC positive for Lyme in March 2013 and then again this past February. Same infection. We are fellow travelers on this road of Lyme. I’m here! 😊

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  2. Stay strong and keep fighting! I have been on antibiotics for 6 months, and I am much better than I was. I remember driving my daughter somewhere, and suddenly having no idea of the location of my destination. I still have good days and bad days, but the bad days are not nearly as bad, and I am better about taking care of myself. SLEEP is a big one for me. Tough to get enough. Have you also been tested for co-infections? You might also want to look into support groups in your area. You are not alone. Hugs! -Suzanne

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    1. Thank you! I haven’t been tested for co-infections yet, but my Doctor is pretty confident that I have 1 if not 2 co-infections based off of my symptoms. They’re waiting until I’m through my first month of antibiotics before becoming more aggressive. Sleep is definitely a nightmare. I’m up until 1-3am every night and then sleep all day and am still exhausted. I’m glad to hear that I’m not the only one with moments that I can’t remember what I am doing or if I did something. Stay strong as well, Suzanne! – Kelly

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  3. Stay strong kid!! You have much love and support from us all. This is a journey you will not travel on your own. Love you SIS!

    ” She is clothed in strength and dignity, and she laughs without fear of the future.”
    Proverbs 31:25

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  4. Wishing you all the best Kelly! If anyone can beat this it’s you! I think it’s wonderful that you are sharing your journey and educating so many of us that know so little about the disease! ♡♡

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  5. Will be here with you always we love you and you are the bravest strongest daughter and women we have ever know you are an insiration

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