December 4, 2011, I experienced one of my many Lyme related Muscle Spasm Seizure Episodes. These episodes had started to occur more and more frequently, causing concern and fear by not only myself, but my family as well. Because my previous Lyme Doctor recently had his license revoked for treating Chronic Lyme Patients, I was in between Lyme doctors and had no where to turn. My appointment with my new Lyme doctor was not until early January which was the soonest I could get in to see him. So, at this time, my family and I thought the Emergency Room was my only option.
Muscle spasms and deep muscle pain are very common in Lyme afflicted patients. Muscle Spasm Seizure Episodes are not related to Epileptic Seizures. When I experience a Muscle Spasm Seizure Episode, all of the muscles in my body, simultaneously spasm so tightly , as if in a vice grip, my body completely shuts down. I have never lost consciousness. My symptoms include a tightening up of the entire muscular system. If I am standing, my legs can not hold me up and I stumble to the nearest chair or fall to the ground. Quickly, my body begins to shake uncontrollably and tremors set in. The necessity to close my eyes helps to keep the room from spinning and blocks out the bright lights. I immediately get a indescribably painful migraine. My body temperature drops very low. As if being plunged into a frozen pond, ice cold chills take possession over my entire body. Once the spasms diminish, deep, excruciating pain and nausea set in.
I decided I would go to the hospital I was familiar with. I had seen the first doctor who treated me for Lyme Disease in 2004 there. I had my hysterectomy there. In the past, I had seen several doctors associated with that hospital. I had many, many tests done there to try and ‘find’ what was wrong with me. Of course, as my story is known to those of you who have been following my writings, throughout all of those tests, ”Nothing was ever found WRONG with me!” However, my decision to go to that hospital was due to the fact that all my records would be on file there. Unfortunately, you will soon read, my previous records did not help in any way to receive proper treatment for Chronic Lyme Disease and Co-Infections.
Upon entering the Emergency Room wearing sweatpants, a sweatshirt and slippers; my face gray as a ghost and my body still trembling from the ice cold chills, the staff was more than welcoming and very concerned. Since it is a teaching hospital, I was asked permission to have Students, Interns and the Senior Resident Doctor be included in my case. I agreed to this request. The ER Doctor was fabulous. When I told him I was in treatment for Chronic Lyme Disease and the whole story that goes along with it, he was very concerned. I then told him I had seen a doctor, years ago, associated with the same hospital who flat out told me, “Debbie, you can’t have Lyme Disease. You live in Wisconsin.” He looked at me, shook his head and said, “That is absurd.” I felt a small glimmer of hope that something good would come out of this visit to the ER. The ER doctor quickly ordered a CAT Scan of my brain to rule out any problems there. The CAT Scan came back clean. I was not surprised. Still concerned, they wanted to keep me in the hospital under observation. Knowing the cost of the ER visit, staying in the hospital for observation, the CAT Scan and the possible upcoming tests, I was reluctant at first to be admitted, but then decided it might, just might, be a good idea.
Early that evening, my first nurse came into my hospital room. Very young, cheerful but also concerned, she said to me, “Just recently, I was researching Chronic Lyme Disease because I believe I have it and have passed it on to my two young kids. I was reading a story that reminds me so much of what you are going through.” I smiled at her. Then asked her, “Do you remember the name of the website you read the story from?” She responded, “No.” I asked her, “Was it by chance called, “My Blind Spot Journey?” She looked at me in amazement saying, “Oh my gosh… it’s YOU!” Yep…. it’s me alright. We got into a deep discussion. Again, I felt a sense of relief that maybe, just maybe, I would get somewhere during this hospital stay. The students, interns and Senior Resident Doctor were more than phenomenal. They visited me quite often, asking detailed questions about this ‘mysterious disease’ I had. Later that evening, they visited me again comforting me they would be researching this disease throughout the night. YES! I had opened up some minds to this ‘mysterious disease’ that few people- even DOCTORS know about or will agree to learn about!
Hooked up to an IV, several different monitors and on strong pain medication throughout the night, I tried to sleep as best I could with nurses coming in to check on me and take vitals just as I would doze off to sleep. Thoughts and questions whirled through my mind, “What would their reaction be after they researched Chronic Lyme Disease further?” ”Will they believe it exists?” ”They are still young and WILLING to learn…. will they do so?” ”What will tomorrow bring?”
“Tomorrow” quickly arrived along with my typical early morning killer of a migraine. My nurse knew of my migraine and gave me my medication for it. I asked to keep only the small light above the sink on because anymore light would only increase the pounding sensation in my head. I also had an ice pack on my head. The Senior Resident Doctor was the first to arrive in my room. She was also aware of my distressing migraine. She, being soft spoken and kind, told me they had all done quite a bit of research on Chronic Lyme Disease overnight. Then, with concern in her eyes, she said, “Debbie, I am fearful that you should not be taking your Lyme medication until you see your new Lyme Doctor in early January.” I expressed my concern back to her, stating “No disrespect to you, however, Chronic Lyme Disease IS a serious disease that has reeked havoc on my body and my life. I have been studying it for years. It would be like taking a cancer patient off of chemotherapy or an AIDS patient off of their treatment. You can not just take a Chronic Lyme Patient off of their treatment.” She then mentioned in a few minutes the doctor doing rounds that morning would be visiting to talk to me along with the students, interns and herself.
The door opened abruptly. All the bright lights were quickly flipped on. I shaded my eyes from the blaze of lights penetrating my pounding head. A doctor who I had never seen before walked quickly up to the side of my bed. He looked down at me and said, “Hello Debra. What are you in here for?” I looked around the room. There stood the students, interns and Senior Resident Doctor all in deep silence. I recognized immediately the Code of Honor they were abiding by: ”Do Not Speak Unless Spoken To.” While shading my eyes, I looked up at the doctor and tried to explain the disease that has taken over my life. This disease that has taken a whole person and cut it into pieces. I tried my best to explain in detail my knowledge about Chronic Lyme Disease but to no avail. He looked at me in a rude way stating, “Debra, you do not have Chronic Lyme Disease. You have Fibromyalgia and you need to see a Psychiatrist.” I should not have been shocked by his words. I had heard them numerous times before by other doctors who had not taken the time or energy to learn about this disease that is quickly taking the lives of many people around the world. I sunk my head down, ready to burst into tears, then regained composure. Looking back up at him, I intensely responded, “I was misdiagnosed with Fibromyalgia for many years. I have been on every medication for Fibromyalgia known to mankind. None of the medications worked. Yes, I was given the standard test for Fibromyalgia, but if my rheumatologist would have touched me on any other part of my body, I would have stated that I am in pain there as well! I do NOT have Fibromyalgia. I have Chronic Lyme Disease. I do NOT need to see a Psychiatrist. I am NOT crazy. I have Chronic Lyme Disease. I NOW have Chronic Lyme Disease because a doctor associated with this hospital treated me back in 2004 for Lyme Disease but did not keep me on treatment long enough all due to the CDC guidelines that he was following.” My words obviously broke the ‘Code of Honor’ with him, however, I was NOT one of his students! He abruptly said, “Well, then let’s get the doctor who treated you for Lyme Disease in 2004 in here to see you!” I disapproved that option stating it would be a lost cause because he follows the CDC guidelines and does not believe Chronic Lyme Disease exists. Then he said, “Well then, let’s get the rheumotologist involved that you were seeing!” Again, declining that option, I mentioned, “I do NOT have Fibromyalgia!” I looked around the room again waiting for someone….anyone….. to speak on my behalf, but all lips were zipped shut….but not mine! Again peering down at me with his horrendous bedside manner, he said, and not quietly I might add, “I want her checked for HIV!” Finally, I heard a soft voice from the corner of the room. ”She was tested.” He looked up at the soft spoken young woman saying, “WELL? What were the results?” Obviously, upon entering my room, this doctor did not even take a glance at my chart. She responded, “Negative.” I was TICKED at this time. I was beyond TICKED. I looked at him, with the back of my hand wiping across my forehead I said sarcastically, “WHEW! That’s wonderful news!” Ok, so maybe I was a tad bit out of line, but I was so angry with this doctor. His lack of knowledge about my situation upon entering my hospital room. His beyond poor bedside manner. His disrespect for me. His rudeness at ignoring and dismissing all the knowledge I had tried so eagerly to share with him about Chronic Lyme Disease went in one ear and out the other. His own frustration set in. He told the others in the room he wanted some neurological tests done on me. He reached out to shake my hand. I was hesitant to shake his. However, I removed my hand from underneath hospital blanket and shook his. He left the room.
I broke down in tears. Can this really be happening…..again???? I used the intercom and requested my nurse to come in. As I was waiting for her, I removed all the monitors I was connected to and got dressed as best I could, being careful not to upset the IV that was still in place. I was going to leave that for my nurse to remove! One of my wonderful nurses walked in, saw me sitting on the edge of the bed without my monitors on AND in my clothes. ”Debbie! What are you doing?”…. “I’m leaving. I will NOT be treated with such disrespect from a doctor who not only dismissed everything I had to say but it was also very obvious he had not read a single word on my chart upon entering my room. I refuse to be seen by this doctor. If there are tests to be done, I will do so elsewhere, but NOT while under his care. His bedside manner was horrific.” She responded, “Debbie, you are very, very sick.” I replied, “I know I am, but this particular doctor does NOT seem to think so!” I had the sense she was ready to sit down next to me and cry right along with me. I sensed she was just as frustrated as I was.
I called my parents for a ride home. They were already on their way, thinking I was going to be having more tests done that morning. They arrived to my room. I saw frustration, anger and concern on their faces as well. My nurse returned with my discharge papers. The discharge papers written up by the doctor were inconceivable. He wanted me OFF of my Chronic Lyme Disease medication AND off of my prenatal vitamins. I take prenatal vitamins because they are easier on my stomach. However, he wanted me to stay on Vicodin, all my other pain medication, all my other supplements and vitamins. Ludicrous!!! Because I had been pulsing my Lyme medication beginning 3 days prior to my hospital stay, I had been without Lyme Treatment now for 5 days. I had a new patient appointment coming up the following week with an Internist. I thought I could make it until then without medication, but I was wrong. Within a short period of time, I quickly relapsed. Fevers, chills, vomiting, excruciating pain, numbness, loss of hearing, blurry vision, etc… all the things I had worked so hard and diligently on to get into remission for the past 17 months had now relapsed. I should have never followed that so-called doctors instructions. I took it upon myself, along with the agreement of my husband, to resume treatment where I had left off. I could not let myself get any further behind or was I already back at square one? You will find that out in my next posting.
It took me a day or two to remember the promise I made with myself to make a positive out of every negative in my life. Although the last doctor I encountered at that hospital had a poor bedside manner, was rude, inconsiderate and illiterate about Lyme Disease, Chronic Lyme Disease and Co-Infections I DID open the eyes of some newcomers to the medical community. I had found out that not only my first nurse read my website and blog but also the interns, students and Senior Resident Doctor. Educating is a MUST if we are going to beat this disease. If we can not encourage the ‘set in their ways’ doctors and medical community, then we can certainly try and help open the eyes and minds of the newcomers.
Every interruption is an opportunity. This interruption was a costly one in the monetary sense, however, if it will help to educate others then it was worth every penny. Currently, almost 18 months into treatment, down 43 pounds, some days with the entire day being spent in bed, no longer driving and a minimal if at all social life; I am beyond grateful to still have the use of my brain so I may continue to share my journey with you. The gratitude I have for my family and close friends is immeasurable. I could not continue on this journey, embracing the positives and dismantling the negatives without you. God Bless You All. ~deb
