On January 14th I woke up vomiting, low grade fever and the worst muscle and joint aches of my life. For the next 7 days the vomiting, fever and diarrhea subsided, however, I continued to have crazy joint and muscle aches and extreme exhaustion. I also contracted the weirdest red, web-like rash all over my body and it was very itchy. I went to the doctors and they said it was all viral and to give it some time. By day 8 I felt normal, energized and back to myself. By day 9 I started with painful joint aches in my knees and hips. By day 10 I woke up and the joint pain was also in my wrists and elbows so I took some Motrin and went to work. This was the last email I sent just seconds before my wrists and fingers gave out…
Tuesday, January 24th at 7:36 am
Hope you guys had a great weekend. Marcia, I love your facebook pictures with Mark. You guys look awesome together. How is it going with D. Is he still with you.
Sarah, how are you doing?
Sorry I have been out of the loop. This flu bug has been awful. I had it for 7 days. I only made it to work 1 day last week. I felt amazing Sunday and Monday and then yesterday at the end of the day I was doubled over in pain and had more diarrehea and nausea last night. I woke up this morning and I can barely move my two elbows, left wrist and left knee. I know I am an odd duck lol, but I am convinced that this viral thing is in my joints today. This is just too weird. I know that you had it twice Marcia. Did you have any of these symptoms.
Sarah is anything like this going on with friends of yours? Sorry I am such a struggling person lately, but when I feel better I would love to get together J
By my lunch break, my right hand was swollen, numb and tingly and I could no longer move my arm or hand. I went to the doctor during my lunch break and he said “I am not going to do blood work because your hand and arm are presenting like someone whose potassium has been wiped out by the virus and you need to eat bananas”.
A few hours and 18 bananas later (lol), my left hand and arm started to do the same and my legs collapsed and I had a shooting pain in my lower back/spine. My husband brought me to the ER. By the time I got to the ER I could walk, but my legs were weakened. SNHMC med flighted me to Mass General. I spent the next 5 days having blood work, CT scans, MRI’s, EEG and EMG/nerve conduction and spinal tap, I was given the ELISA test for lyme and that was negative. One of the blood tests came back showing I had inflammation in my blood, but everything else was normal. (Ironically, my potassium level came back normal lol.) I was given neurontin for the excruciating nerve pain and two rounds of IVIG (plasma exchanges because they thought I had GBS). On day two I woke up at 4:00am and I felt “the virus” or whatever “it” was spreading and numbing and tingling my body. I was petrified; I wanted to scream and cry, but a wonderful calm came over my body instead. I took a deep breath and I prayed “Lord I can handle this as long as “it” does not go to my bowel/bladder, heart/lungs and my smile”. I closed my eyes and instantly God gave me a vision of what looked like a blueprint of my body and his hand was taking a brush and dusting (almost like dusting for fingerprints) over my bowels/bladder, heart/lungs and my mouth. I opened my eyes to find my husband searching for a text that my friend, Suzan, had sent to me. The text read Isaiah 40:31 “but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.. I smiled and knew that whatever “this” was, God had “it”, and I completely accepted “it”.
On day 3 I felt horrible. I felt like I was going to throw up and pass out. Apparently, my eyes rolled into the back of my head and every monitor attached to me was blinking and beeping because my heart rate went down to the thirties and I passed out. I was rushed out of the room for a CT scan. I do not remember this time, but my husband will never forget. He thought I was dying and he spent a good hour wondering if I had died in the CT scan. But true to God’s promise, I woke up with the worst migraine of my life and I do not remember much of the rest of the day. On day four I had more testing and by day five they stopped all medicine and said I did not have anything life threatening, and therefore I would be sent home…
I was so confused and I had so many questions. One of the neurologists decided to take the one opportunity (that my husband briefly left my side) to talk with me. She sat beside the chair I was propped up in and began to ask me questions that were totally unrelated to arm paralysis. Her questions became more and more condescending, so I continued to keep my calm and grace and answer them respectfully. She said, “Thank you for answering my questions. I feel you have post viral chronic fatigue and I need you to get a full psychiatric evaluation”…At this point my head was spinning, I was so confused. I thought, how did I think up arm paralysis in the middle of teaching circle time? How did I almost die 2 days ago and now I am going home? Even the OT was adamant that I be sent to inpatient rehab, but doctor insisted it was not worth it, because, I would be better in one week so how and why am I going home? And then this doctor did the unthinkable! She stood directly in front of my chair, completely overpowering my personal space, shoved her hand in my face and stated “I am not leaving here until you shake it”. I fell to the floor trying to shake her hand. At that moment I felt completely humiliated and traumatized and I wanted to get out of there as fast as I could. I kept my mouth shut about the incident until we were halfway home and then I burst into tears and told Josh everything that happened. HMMMMMMMMM………………………………..
Unfortunately, I now know it is almost a “rite of passage” for a person suffering with Chronic Lyme disease to be told they need a psychiatric evaluation and that they have chronic fatigue syndrome. Please pray for the day that this disease is recognized, this “psychiatric rite of passage” can end and patients can get the appropriate treatments that are needed!
Here is a website that lists symptoms of Lyme Disease and Tick Borne Infections (If only I had known!)
I have also included a website that describes how to prevent Chronic Lyme Disease. Please read!