Our story

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Our family's story with Lyme disease and coinfections is still unraveling. But, it began in February of 2018. This is when the mention of this disease ever came to our minds. Our 20 year old healthy, active son became acutely ill.  He was in and out of the hospital and sleeping on our living room floor. Nothing seemed to help! 

It was February 1st and our son, Ethan, had already moved out of the home but he worked with his father in our family business. He came to our house one morning, as he always did, but this morning he complained of a sore, stiff neck on the right side. I mean, this is normal, right? I told him that perhaps he slept on it funny and needed an adjustment.  If it was bothering him too bad then I encouraged him to take a dose of an over the counter anti-inflammatory.  By that evening he was so much worse! When he arrived home he had a fever of 101, his neck was warm to the touch, tight, puffy, he had enlarged glands and he had a severe headache. He refused to go to the emergency department and wanted only to go to sleep.  The anti-inflammatory barely kept the fever at bay.  He was fevered, clammy, & having uncontrollable chills. In the morning, I drove him to the emergency department  fearing he may have Meningitis due to his symptoms.  We were told it was Cellulitis (even though there weren't any visible signs indicating such), Adonitis, & Leukocytosis.  He rec'd a bag of IV Clindamycin and was prescribed Clindamycin 150mg two every 6 hours, Vicoden 5-325 (which he chose not to use), and Prednisone 50mg one once a day for 6 days. He felt a bit better for a few days then felt as if symptoms were returning.  We stopped the Clindamycin on February 8th due to severe abdominal distress.  He felt somewhat normal and chose to go hog hunting the next evening. He realized that he had no stamina, felt light headed, short of breath, and he was having chest pain.

Sunday, February 11th the headache, neck pain, stiffness, and fever were back with a vengeance! The fever was climbing and the anti-inflammatory wouldn't bring it down all thru the night. The next morning was our second emergency room visit. Ethan's Left side of his neck hurt worse this time. He was diagnosed with a "viral infection". After three failed lumbar punctures, too much pain medication, a bottomed out blood pressure, and his feet and legs going numb they finally did a guided lumbar puncture with success. After all of this then they finally admitted him. However, now, unfortunately, he was in excruciating pain in the lower back and he couldn't handle the lights being on due to the headache and sore/stiff neck.  

They did regular labs and focused heavily on searching for STD's no matter what I suggested. Due to the amount of acetaminophen he received in such a short amount of time he had induced jaundice. The doctor determined he had an unknown virus and discharged him on the 14th.  During his stay an infectious disease doctor saw him (for less than a minute mind you and signed off on him).  When asked he said, "there is no Lyme in Florida nor Georgia". He also stated that they didn't have the resources to look into a rheumatoid illness.  He was sent home with a prescription for pain.  Two days later he developed a rash that worsened over 24 hours.  It was prickly, red and pink, and did not itch nor burn. On the 18th the rash was lighter but had areas of petechiae. Even with my medical background I was so perplexed. My son was sleeping A LOT!  Ethan had moved down the street from us to help take care of his grandfather's place but from the first day of illness stayed at our home.  We had to purchase a blow up mattress and keep on the livingroom floor.  He would sleep most of the day and that wasn't like him. It honestly was very scary. The fevers came sporadically, he would have sweats then chills, and burning in his hands.  

On February 22nd He said he felt 90% better.  This was great! He just complained of a scratchy throat. However, the next day he had a fever again and what looked like Strep throat and thrush.  He started on a supplement from our Chiropractor called Viral RMor.  His neck was still achey.  On the 24th I had him restart the Clindamycin because we thought he had Strep.  He also was having the sweats, chills, and Fever of 100. By that night a new rash appeared. What was going on?

February 25th was our 3rd emergency visit...thankfully, this time he was seen by a very nice doctor who was new to SWFL and a little bit more familiar with Lyme disease.  He immediately thought that that's what Ethan may have and he prescribed Doxycycline for one month as well as a SoluMedrol Dose Pack (which we later learned the prednisone was not a good idea for Lyme).  He also advised us to find a primary doctor. All of the ones he suggested couldn't see Ethan due to insurance conflicts. Two days later we seen a nurse practitioner at a small clinic in the Cape. Her only concern was  his weight. I was beside myself! She did, upon my begging, order the two part Lyme test and a few other repeat labs from a well known lab. Ethan went back to his follow up appt by himself and again her main concern was his weight and that he start breathing exercises and yoga. 

Thankfully, he progressively got better.  He gained a little more energy each day but never quite got back to his full self.    However, he did continue to suffer with stomach distress. 

Fast forward to April 14th and guess what? You guessed it! He started getting sick again. He had a sore throat, fever, body aches, headache, sore stiff neck, and swollen glands.  He was at our place in Georgia for the weekend and returned home to work on Monday. He felt horrible but tried to work anyways. By 4pm his fever was 101.  Fearful that it was all coming back again I took him to the emergency room for our 4th trip on April 18th.  The physician assistant was extremely unprofessional and I even feel that he was downright rude. He prescribed another Solumedrol Dose Pack and we were sent on our way.  

That's a lot for how it began isn't it? I then went with what I felt like the Lord was impressing on my heart and searched for Lyme support groups on social media. I quickly found one and was connected with someone that recommended a Lyme literate practitioner in our state. We were finally getting somewhere. It felt so good to be heard and understood. I finally felt like after 3 months someone was going to help my child. Believe it or not, this time period was extremely short for what most Lyme sufferers experience. Many go years and see 15-30 doctors before they get help. We were so very blessed. At this new practitioners office he was greeted with respect, properly evaluated, properly tested, started on both an oral and IV medication regimen, and began to heal. 

This is how our Lyme journey began...