When Life Gives You Lyme... Make Limeade!

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

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

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

My doctor called Tuesday with some exciting news… My lab results were in! My parents and I met with her that afternoon… 11 pages of results - 4 1/2 hour appointment! Lordy lordy! I was finally receiving confirmation of my diagnosis! Just as my doctor suspected, but now with verified proof, I am positive for Classic Lyme, Babesia, Bartonella and Rocky Mountain Spotted Fever.  My blood sugar levels are low, my eosinophils are elevated, my carbon dioxide levels are low, my immunoglobulin subclasses are deficient and I have vasculitis. Have I lost you yet? Enough medical talk! I won’t bore you with the details.   So now it’s “go time” with a plan! I am getting a port implanted Monday. The port will host my daily IV infusions. Along with the antibiotics, I’ll also be receiving anti-malarial infusions. Babesia is a cousin of malaria - pretty fascinating, huh? Just wait, it gets better! I’ll be injecting myself up to 6 times a day just like your average junkie! Holla at your girl if you’

Thursday morning, my alarm rang at 6:00 AM. Shortly after, my mom came in the room with all my morning meds. I took my medicine and went back to sleep. I woke up around 9:00 feeling somewhat normal. My sister and I met at Tomahawk Trail and walked before taking a noon Fusion class. I knew I was doing a lot but I didn’t care. I wanted to go to Fusion. I needed Fusion. I used to go to Fusion every single day. Fusion has always been my outlet - my happy place - my therapy. No longer having Fusion in my life has been a big ass bummer! BIG ASS - as in, my ass is getting huge! The noon class was only 45 minutes long. I lasted 30 minutes… I left the studio with purple lips, purple fingers and purple toes. I cried the entire way home. Where did my energy go? What’s happened to me? I’m so disappointed.  I spent the rest of the afternoon in bed. I had plans to meet friends at North for dinner but I had to cancel. I couldn’t move… My body ached and it hurt to breathe. I was slowly fading. I

I met Doug at YaYa’s Wednesday afternoon for lunch. My parents accompanied me. We were connected through a friend of my sister’s husband’s sister’s brother. Did you get all that? Anyways, Doug is a competitive fisherman and an avid hunter. He said he’s likely had over 500 ticks in his life. He said he would have loved to have had the bulls-eye rash, as would I, but most Lyme patients never recall one. My nerves mimicked the nervousness I felt right before teaching my first Fusion class - holy anxiety! Where’s the Xanax?  Doug found out he had Lyme Disease 4 years ago. He went to Washington, DC and saw Dr. Joseph G. Jemsek. Dr. Jemsek is an Infectious Disease Specialist in Lyme Borreliosis and Tick-Borne Infection. Doug’s treatment plan lasted 6 months. He had a port implanted and received all medicine through an IV. For maintenance, one week each month he takes a variety of antibiotics.  I left lunch feeling optimistic about my situation. Doug knew everything about this horren

Tuesday, my doctor called to tell me I tested positive for Rocky Mountain Spotted Fever. Since RMSF is active - my doctor is required to report my case to the CDC. She added another antibiotic to my treatment plan along with additional supplements and homeopathic detox drops. RMSF causes a skin rash - usually a red or purple spotted rash - but atypical rashes are common too. A skin rash is an indication that the disease is more severe. RMSF damages the blood vessels which can cause clotting in the brain or other vital organs. Loss of circulation to the extremities can be a problem too.  Multiple times throughout the day my lips, fingers, knees and feet turn purple. I lose entire feeling of my legs and feet regularly. I constantly have a skin rash. I would be the perfect RMSF model!  I’m anxious to get the rest of my lab results back. I need clarity. How many co-infections do I have? What co-infections do I have? How long is treatment? Is this limited, debilitating and shat

The realization of my diagnosis is starting to settle in and I’m finding myself feeling deflated and anxious. This disease has affected more than just my health. My mom has taken over a large amount of my mommy duties. My girls go to my mom before they come to me if they need something. Any relationships that were “in the making” before my illness plummeted are obviously “no longer”. My friendships seem to be on hold these days. I’m no longer on the call list when a friend wants to go out and be social. Everyone assumes I’m sick in bed… And to be honest, they’re usually right.  This disease is isolating and helpless. There’s no pattern to the symptoms, no warning signs before you turn into a puny, miserable person incapable of doing anything but lie there and breathe… It’s the disease’s world and you’re living in it. You have no idea what the next hour will bring. You live in the now and take full advantage of the good days because you never know how long it’ll be until you get an

According to CDC (Center for Disease Control and Prevention), Lyme Disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. If left untreated, infection can spread to joints, the heart, and the nervous system. Most cases of Lyme Disease can be treated successfully with a few weeks of antibiotics.  CDC does not acknowledge Chronic Lyme Disease as a true condition. If symptoms last for more than 6 months, CDC calls it Post-Treatment Lyme Disease Syndrome.  According to International Lyme and Associated Diseases Society, there are 5 subspecies of Borrelia burgdorferi. Testing for Babesia, Anaplasma, Ehrlichia and Bartonella should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these co-infections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme Disease. Like Syphilis

   

         

April Rash (open skin lesions) on face and hairline  May, June, July Multiple visits to dermatologists 1st visit - Doxycycline 2nd visit - Amoxicillin, Prednisone, ANA lab test  Lupus? 3rd visit - Fluconazole 4th visit - Bactrim 5th visit - Valtrex I was told I had staph even though lab results showed I was negative. The final dermatologist I went to see advised me to follow up with my primary care physician. The dermatologist believed the rash was auto-immune related and told me they could no longer help me.   August Rash (open skin lesions) Stiff neck Swollen lymph nodes around neck Headache Blurred vision I was admitted to the hospital for 2 days. The infectious disease doctor visited me during the night. He told me I should visit him outpatient for acupuncture. I was told to follow up with my primary care physician.  2 weeks later in August, I was admitted to the hospital, again, for 2 days. They did a lumbar puncture and a CT scan and MRI of the brain.

Long story short, I went to my appointment at Mayo on October 4th. It was with the dermatology department since my symptoms started with a rash. The dermatologist referred me to infectious disease and neurology. Mayo was unable to diagnose me with Lyme Disease because, despite the fact that I tested positive for Lyme and have all the symptoms, I do not fit CDC criteria (total IgM/IgG bands). I'm ONE band short.  My last time at Mayo, I was told it was probably fibromyalgia, chronic fatigue syndrome and migraines. Really?  I saw a Lyme specialist in town and spent 6 hours with her during my first appointment. I was extremely impressed with her knowledge and proficiency on the disease. She was like a mad scientist - full of facts. The Lyme specialist showed true compassion and was positive about treatment options and getting my life back.  I want my life back. I miss the old me. I want to have morning to bedtime energy. I don't want to feel like I'm always &q

My symptoms “started” in April but let’s quickly fast forward to Friday, September 30th. I was frequenting the nail salon every 5-6 days at this point in my life. The nail technicians and I were best friends! They knew I was more interested in getting an hour long leg massage and less concerned about the polish change at the end. I was experiencing the most intense leg pain and found having my legs rubbed was the only way to cure my aching limbs.  My legs weren't the only body part with piercing pain. Lately, all of my joints ached.  So I'm getting my legs massaged and my phone begins to ring. It’s a Minnesota area code so I figure it’s someone from Mayo calling about my lab results they did in the ER last week when I was there with my mom and aunt. I had an appointment to be seen at Mayo, October 4th, and tried getting seen earlier by going to the ER. I had spent the previous week in bed, convinced I was dying, and insisted my mom drive me to Minnesota.  I answered m

I am mommy to Avery and Addison. Avery is in the second grade and Addison is in preschool. We currently reside at my parents house - I know, I know.  I taught two years in early childhood before choosing to pursue a career in fitness. I became a fitness fanatic after years of taking Fusion Fitness classes. When I left the school I was teaching at, I auditioned at Fusion Fitness and was later given the opportunity to train and join the Fusion Fitness team. Unfortunately, I haven’t taught many Fusion classes because I’ve been sick.