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Guess Who's Back - Back Again. Shady's Back, Tell A Friend!

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After a 5 months hiatus from blogging… this girl is back! Welcome October! We meet again… although, in a much improved condition than the previous year. October 14, 2016, I began treatment through a local LLMD (Lyme Literate Medical Doctor). Initial lab results revealed I had 4 vector-infections: Babesia, Bartonellosis, Rocky Mountain Spotted Fever and Classic Lyme. Additionally, I had several viruses: MTHFR mutations, Parvo B19, Influenza A, Coxsackie A and B, HHV 6, Mycoplasma Pneumonia and Epstein-Barr.  I had my first port placed on November 14, 2016 at Menorah Hospital. November 29, 2016, several medications were added to my treatment plan - sleep aids, biofilm “breaker downers”, antimalarials, human plasma, anticoagulants, anticonvulsants, Glutathione, and an oxygen canister.  December, 2016, I experienced my first port infection. The port was removed and a PICC line was placed. Mid December, 2016, I developed multiple clots in my arm where the PICC
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"We are in this struggle together."

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“You’re shattered like you’ve never been before. The life you knew is in a thousand pieces on the floor. Words fall short in times like these. When this world drives you to your knees; you think you’re never going to get back to the you that used to be.” Who is familiar with the above lyrics? While boarding my 9:30 PM flight from Chicago to Kansas City last week, my phone vibrated, notifying me that I had a text message. My sister, Kim, had sent me a message with an unknown artist and song title. “Tell your heart to beat again” by Danny Gokey. I turned my phone off and buried my face into Blake’s chest. The overhead lights inside the plane faded while everyone prepared for take-off.   First, let’s rewind a bit. Friday, March 24th, marked the last day of cycle 1 for me. The following week, March 27 - April 2, was considered an ‘off week’ - no antibiotics (infused nor orally). The three weeks in March prior to the 27th were manageable. I averaged two bad days a week - not too sh
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New Path

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It’s been a month since I last posted on my blog. Things have been very busy around here!  After continuous Herxheimer reactions and helpless days, I decided a change was definitely in order.  A friend recommended I go to Washington, D.C. to meet with Dr. Jemsek. Dr. Jemsek is an infectious disease specialist in Lyme Borreliosis and tick-borne infection.  I was fortunate enough to talk with Dr. Jemsek at my initial consultation along with one of his nurse practitioners. The doctor and nurse practitioner both agreed I was a candidate for IV treatment. The 6 page list of daily medications I was taking was quickly eliminated. The doctor’s suggestion was to end all medications except Doxycycline. He prescribed Diamox, Klor-Con and Vitamin C to be taken twice a day for headaches. He started me on Neurontin twice a day for nerve pain and Trazodone and Klonopin for sleep aid.  Dr. Jemsek’s treatment protocol is essentially chemotherapy. Considering the current state of my body
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2 Steps Forward - 1 Step Back

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Happy New Year! The slogan this year is “Don’t be mean in ’17.” I like it! As my 8 year old daughter would say, “I dig it.”  One of my all time favorite quotes is, “Be kind, for everyone you meet is fighting a battle you know nothing about.” The first time I saw this quote was when reading the book, Love Warrior by Glennon Doyle Melton. I read the entire book out loud to my mom during our 6 hour road trip from home to Rochester, Minnesota. We were on our second or third trip back to Mayo with high hopes for answers.  Be kind, for everyone you meet is fighting a battle you know nothing about. Ponder that, would ya? I’ve had several people throughout my journey say to me, “Things could be much worse.” You know that horrific sound of fingernails on a chalkboard? That comment is identical to that sound! Make it stop! I’ve never understood why people say that. In my 28 years of existence this is by far the worst thing that has ever happened to me. Things could be worse? I’d say
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December

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Holy smoke! It’s been a chaotic December! The doctor altered my medications and recommended I start detoxing. The 1,000 medications, IV’s and injections have become routine. The black and blue spots on my stomach no longer bother me. I’ve mastered swallowing 10 horse pills at a time. The detox methods that were suggested are all bearable - we can discuss colonics at a later date.  My kitchen pantry looks like a pharmacy. Between the IV tubing, saline/heparin syringes, shots, antibiotic IV bags, lactated ringer IV bags, dressing packages, port needles, medication bottles and other medical related things - I don’t know how we’re able to fit food in there.  I was in the hospital at the beginning of the month because my port was infected. I woke up with a swollen neck and clavicle. I went to the ER and was immediately admitted and put on MORE antibiotics to prevent the infection from getting into my bloodstream. They removed the port and placed a PICC line in my left arm.  Aft
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Jabber

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I’ve had several people reach out to me after reading my blog to send their condolences and I so very much appreciate it. Although, I want to make it very clear that I am, in no way, writing to get attention for my illness. During this strenuous journey, I’ve found that writing is really therapeutic. My initial reason for starting a blog was to document my disease from beginning to end for my own personal records. I later decided to share my blog to the public to keep everyone informed as well as to become a kindred spirit to others.  Writing is not only therapeutic, it’s also a skill that I can STILL perform that Lyme has YET to hijack from me! My brain/mind are slacking. I feel very uneducated much too often. I struggle choosing my words when I’m talking to someone. People probably think I’m a little nuts. Or legitimately stupid. I’m a note taker now. Notes on notes on notes ya’ll! If I’m not taking notes, chances are, I’m not going to remember a darn thing. Brain fog, you m
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Chaos

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It’s been 2 weeks since my last post. Life has been non-stop, I tell ya! My car suddenly died after a fulfilling 9 years of life. After a painful 8 hours spent at the car dealership, I got myself a purrty new car!  The following day, I had my port placement procedure. Holy discomfort! My neck vein was in so much pain afterwards. It still isn’t fully recovered. The home nurse came to my house the next day to go over the “how to’s” on everything. Next thing you know, I’m giving myself my own infusions. I’m PRACTICALLY a doctor now! Ain’t no thang!  The first week with my port in, I had 4 really good days. I took my girls to school, I ran errands, I went for walks, I helped make dinner and I took a couple Fusion Barre classes. I felt normal. I felt good! Things took a turn for the worse last Monday. Sunday, I met with a Fusion client whose boyfriend is battling Lyme Disease. When I got home from meeting with them, I felt like I had been hit by a bus. I anticipated the aching fe
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