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Sep 03

Living with Lyme Disease, Part 2

Upon returning from the hospital, we got him comfortably situated in bed. He was able to drink and eat a little bit. As time went on, the pain in his head and neck was returning. By 9 pm, the pain was getting bad again. By 10pm, he took an over the counter pain reliever, hoping it would give him some relief.

It was a long night. I slept for a little while, but lay awake most of the night, wondering what could be ailing him, and hoping that the worst was over. He managed to sleep most of the night, but his breathing was really shallow. (This did not help me sleep.) I listened closely to make sure he was in fact breathing, and at times it was hard to tell.

It was a long, restless night. Lyme was about to change our little world forever.

It was a long, restless night. Lyme was about to change our little world forever.


When he woke up Friday morning he was very weak, and did not have much of an appetite. He mentioned the headache was there, but not to the degree it had been. As he described it, “a dull ache in comparison”. He stayed in bed until mid-morning. He had more of a fever than the day before. He got up and stayed vertical for a little while. The baby was happy to see him home this time of the day. She was accustomed to just she and I being at home weekday mornings; when he was at work, and her big brother was at school.
The silver lining to the Lyme cloud... week day baby snuggles.

The silver lining to the Lyme cloud… week day baby snuggles.


It was another beautiful, sunny day. He took a few minutes to go out in the garden, and enjoy the sun and the flowers. It wasn’t long though, and he was ready to rest again. We got him situated in the recliner in the living room. I made him a light lunch, and lots of teas, and lemon water to drink. He spent the remainder of the day in that comfy old chair. His symptoms worsened over the course of the day. He took over the counter pain reliever every 6 hours just to be able to rest. His symptoms were not improving.
Monarch Butterfly in the garden, taken by my partner.

Monarch Butterfly in the garden, taken by my partner.


This night, he was very restless. At 11pm he jolted awake in intense pain! It startled me, but I cannot remember if I was actually asleep. He was having lots of pain, and body aches. His eyes were very blood shot. His fever went up to 102 degrees. The headache wasn’t going away either. More pain reliever. When he was graced with sleep, his breathing was shallow. I lay awake again, listening for anything alarming, or to be at the ready if he needed something. He was so ill, I just could not imagine what was wrong, and dreaded the idea that we may not be through the worst of it. Fortunately, when our son got home from school that afternoon, he went home with my mom for the weekend.
Lyme can cause neurological damage, and varying degrees of body pain.

Lyme can cause neurological damage, and varying degrees of body pain.


The next morning, Saturday, did not go as smoothly as the day before. He was obviously getting more uncomfortable as time was moving on. He got up with me, to relocate to the recliner in the living room. I got him as comfortable as possible, and continued to give him healthy foods and lots of liquids. He did not have an appetite. He let me know he was having a lot of pain in his hips. It was painful for him to sit, stand, or walk. He said his neck was very stiff and achy, and the headache was trying hard to come back full force. I did everything I could think of to help keep the pain from getting worse. I made him a rub for his neck, applied cool and warm packs. Whatever made him feel any better, or kept him from feeling so badly. The fever was hanging on, too. By lunchtime it was becoming clear that things were not improving. Before lunch he decided to get up and move around a bit. When he passed by me, I noticed a red blotch on his neck, behind his left ear. When I mentioned it to him, we both looked at each other with expressions of wonderment and concern.
Rash caused by Lyme Disease.

Rash caused by Lyme Disease.


The mark was the size of a nickel. In the next few minutes that he was up, he discovered he also had a red blotch on his stomach. He pulled his sweatshirt up, and upon examining his torso front and back, he had a total of five, weird looking blotches. He said they did not itch, or feel irritated like a rash. They were warm to the touch. At this time we discussed what we were going to do next… he decided he may need to go back to the ER if things did not start improving. So, I made sure I had the baby’s things ready, and her bag filled with snacks and books, and other things to distract her, if we did have to go back to the hospital. I got myself ready. He got back in the recliner. He didn’t want to eat. At around two that afternoon, he was in serious pain, and the headache was getting worse. I packed both of them in the car, and we went back to the same hospital.
Lyme Disease contributes to thousands of ER visits in the US.

Lyme Disease contributes to thousands of ER visits in the US.


Through the windows we could see they were packed, and very busy. He just looked at me, bewildered. We parked under the marquis and I went in to retrieve a wheelchair. I got him out of the car and wheeled him into the entry way. After finding a place to park, the baby and I went back to get him checked in. We sat for over an hour in the waiting room. “I can’t do this right now” he said. “I’d rather be at home, and fight the pain than deal with sitting in that waiting room for hours”. Feeling defeated in a way, I agreed, and we went home, hoping he would be able to get through the night okay; still not knowing what was wrong with him. I got him as comfortable as possible, and he took over the counter headache medicine. It really didn’t do much for him. It was a long night.

Sunday morning, the blotches were still on his front, back, and neck. He seemed a little better than the night before, but there was no marked improvement. Again, he got comfortable in the living room recliner. He always loved reading the Sunday paper. This morning he could not. His eyes hurt, and he was unable to see the print clearly. He put a movie on TV, but mostly he just listened to it, rather than watch it. It distracted him from how badly he felt. The headache was making it difficult for him to do anything that required his eyes to focus for any length of time. He was a bit light sensitive, as well. (Sound would also become an issue in the days to come.) He went downhill as the day progressed, and before evening, he was ready to try going back to the ER. We went to the same ER as before, and again, it was a mob scene. I suggested we go to the other hospital in town, and see if it the situation looked any better.

The blotches had gotten bigger than the day before. On his torso, they ranged from 3" to 6" in diameter.

The blotches had gotten bigger than the day before. On his torso, they ranged from 3″ to 6″ in diameter.


I pulled up under the marquis at the second hospital, and immediately someone asked if we needed a wheelchair. They helped me get him situated, and wheeled him into the corridor, and sat with him while I parked the car, and got our little one situated in her stroller. When I walked into the emergency department, he was in front of the receptionist’s desk being signed in. We didn’t wait very long and he was seen by the triage nurse, then within minutes was being wheeled back to a room. As we passed through the double doors into the emergency department, I felt like a warrior preparing to battle an unknown enemy. I took a deep breathe, and prayed the entire walk to the treatment room.

A nurse got him onto the bed, and covered him with warm blankets. She told him the first thing she was going to do was have the doctor get him something for the extreme pain he was experiencing. He looked terrible. His color varied between grey, yellow, and white. His eyes were still very blood shot. He was getting sick to his stomach again. They worked quickly to help get him comfortable, and hooked up to an IV line. The doctor appeared, and was very thoughtful, and very serious. He just put off a vibe of intense intelligence and knowledge – and he knew it.

My partner was very fortunate to get very good care at the onset of this ordeal.

My partner was very fortunate to get very good care at the onset of this ordeal.


This doctor was not one for conversation, but very matter of fact, and timely about the task at hand. He did not ask very many questions, but the questions he asked were very specific. He ordered more blood tests. In my great concern, and feeling of helplessness, I needed to tell him all the details. He was very gracious understanding this and humored me. This put us at ease, because though he seemed rigid, and arrogant, he listened, really listened, to every word we said. Before finishing a very thorough and methodical exam of my partner, he said flat out – “you have Lyme Disease”. Both of us were surprised. “Really” was all my partner could say. We asked about the blood test from earlier in the week with the negative result for Lyme. The doctor did not reply to the question, but asked my partner to expose his torso so he was able to take a picture of the big red spots that were still there. He took one picture with his phone and said, “I am emailing this to the Infectious Disease Specialist to see what she thinks”. Then, he explained to us that he grew up in Lyme, Connecticut during the initial outbreak of the Tick Borne disease, and its discovery. Therefore, he was very confident about this.
The first cases of Lyme Disease were discovered, and diagnosed in Lyme, CT.

The first cases of Lyme Disease were discovered, and diagnosed in Lyme, CT.


Within the hour, we received word back from the Infectious Disease Specialist, and she agreed with the ER doctor my partner did absolutely have Lyme. She immediately prescribed an IV dose of antibiotics for him. The ER doctor recommended my partner also have a spinal tap to see if the bacteria was in his spine/spinal fluid. He agreed, and I talked the doctor into letting me stay in the room during the procedure. He explained that normally he would not allow family members to remain in the room when performing this procedure. He decided after I convinced him I could handle this, and the baby was snoozing in her stroller, I could stay. He made me assure him I understood the protocol for maintaining sterility in such an environment prior to proceeding. It was very interesting to watch, as I mentioned the doctor was very methodical, and extremely thoughtful in his manner. (That being said, the next family member that ever needs a spinal tap is flying solo!)

The results of the test came back negative for Lyme in the spinal fluid. The results for the bloodwork had not come back yet. We were released after 9pm with an oral antibiotic to be taken for thirty days, beginning the next day, and instructions to call and make an appointment with the Infectious Specialist. He was told to return to the ER if his symptoms worsened, and they gave him some pain medication to take home.

Large doses of antibiotics, over extended periods of time are often used to try and treat/cure Lyme Disease.

Large doses of antibiotics, over extended periods of time are often used to try and treat/cure Lyme Disease.


By 11pm that night, the bad headache was returning, his body and hips were in a lot of pain, plus he was healing from the spinal tap. He had to take pain medication, but shortly after he did, he was able to sleep. I slept a bit more than the previous nights, too. I felt a small sense of relief now, knowing what we were battling. However, neither of us knew what our expectations should be going forward.

The next day was Labor Day. He did not do so well. He could barely get up and walk around. His headache was not being helped by the pain medication as it had been before. The fever was not letting up, and was hovering around 101. He just laid in the recliner, motionless, with his eyes shut. I kept the curtains drawn to block the light. He was very sensitive to sound. No TV or music in the background. He had no appetite. He was unable to take the oral antibiotics because of his ill stomach. It was back to the ER in the afternoon.

By this time, the baby was (unfortunately) getting used to this routine. She was so sweet through the entire ordeal, and really provided relief from the heavy emotions we were going through. My son was enjoying being spoiled at his grandparents, as it was a long holiday weekend.

Lyme Disease contributes to thousands of ER visits in the US.

In the first week of his illness, we made many trips to the ER.


When we arrived back at the same ER, my partner was immediately wheeled into triage, and then a treatment room. The baby and I got situated while the nurse got my partner situated, and inserted an IV line. A different doctor than the day before entered. He was very outgoing and jolly. After some brief questions, and reviewing the chart/file from the day before, the doctor ordered pain medication, and medication to help stop my partner from vomiting. It was explained he would receive another dose of antibiotics via IV during this visit. This is what the Infectious Disease Specialist ordered. We asked about the blood work from the day before and if the results for the Lyme test had come back from the lab. “Oh, nobody told you?” asked the doctor. “Told us what?” we replied simultaneously. “Oh yeah, you definitely have Lyme Disease. The results are positive!”, he said. My partner and I just looked at each other. Needless to say we had numerous questions about his treatment. How long would it take? How much worse would things get before they improved? Where did we go for information, or assistance? No one could give us any definite answers. He received his antibiotics, and we were sent home late in the evening.
Lyme bacteria are spiral shaped like a corkscrew, and can bore into connective tissue, and organs of the body, making it very hard to treat.

Lyme bacteria are spiral shaped like a corkscrew, and can bore into connective tissue, and organs of the body, making it very hard to treat.


Tuesday morning, I called the Infectious Disease Specialist’s office as soon as it opened. The staff worked to get him in to see her the following week. Until then, she wanted him to take the oral antibiotics. My partner seemed to be looking and feeling a little bit better. He was more talkative, and had a little bit to eat. His color looked better. We both felt a bit encouraged by this improvement, and hoped the second injection of antibiotics would make a difference.

After lunch, he took his first dose of antibiotics. As the afternoon went on, he was going downhill, again. The pain in his head was coming back and he was sick to his stomach again. He couldn’t tolerate light or sound, and the body pain was worsening. He was unable to get relief from pain medication, because he couldn’t keep it down long enough. It was a tough night.

The next day we found ourselves back at the ER. it was an ordeal getting him there. He needed help to walk to the car. Between the front door and the car in the driveway, we stopped three times to sit and rest. He was violently ill. The car ride was absolutely nerve wracking. Once he was checked in, the same doctor who had seen us on Monday was there, so he was familiar with us. My mom came to the ER to get the baby. She brought her to our home for the day so she did not have to be at the hospital. My partner was given more medication to stop him from being sick to his stomach, and more pain medication. It was decided he was also allergic to the oral antibiotics, and could not take them. The Infectious Specialist then ordered thirty days of IV antibiotics. We were instructed to come back to the hospital the next day so he could have a “pick line” inserted, which would be the means for getting the IV antibiotics into his blood stream. We would have to go to the hospital for him to get the antibiotic injections each day until our insurance approved in home care. We were released early in the afternoon, and again told to come back to the ER if need be. When the school bus dropped our son off at home, my mom took him to her house for the night. She made sure we had supper, too. The baby kept us distracted.

The next 48 hours were very difficult for my partner and I. He was so ill. At times I wondered if he was going to need an ambulance. It was that severe.

Thursday morning, we returned to the ER for his pick line to be inserted. It took a while as he had an X-ray before and after the procedure, and the procedure itself took a little time. We were both amazed and grossed out by the whole affair. He did very well.

The "Pick Line" used to administer IV antibiotics for thirty days.

The “Pick Line” used to administer IV antibiotics for thirty days.


Friday morning, he was a little bit better. He was not sick to his stomach when he got up, and he managed to get himself ready for his appointment at the hospital. However, once we got in the car, the motion was too much for him. He was fading. When we arrived at the hospital, he had all he could do to walk. I could not find a wheel chair. We went through the main entrance. They were renovating and things were rearranged. By the time we took the elevator up to the third floor, he was lime green, light headed, and ready to blow!

The first person I saw when the elevator doors opened to Day Surgery was a tall woman in OR cap, gown, booties, and mask. I ran to her and asked for her help. She took one look at my partner and ran for a wheel chair, and grabbed a container. I checked him in for his appointment as he sat on the edge of the corridor, hunched over in the wheel chair. The woman that first helped us came back, and said they had a bed for him. She said “follow me”. By the way, yes, the baby was with us this trip. (Our son was at school.)

He was wheeled into the Day Surgery Recovery room where we were introduced to the nurse who would be giving him his antibiotic injection. He was so ill, she wanted to wait before proceeding. They got him onto a gurney. At that time there was not a doctor on the floor that could order any meds for him. I mentioned the ER doctor told us to contact him if Gary needed anything before getting in to see the Infectious Specialist. I told the nurse I would go see if he might be able to give my partner something to help his symptoms. The baby and I raced downstairs, and fortunately the same doctor was on duty. He wrote me a prescription for pills to make my partner stop throwing up. I don’t think the doctor understood the urgency and that my partner was upstairs. I went back up to Day Surgery and the nurse told me she would take good care of him and to go get the prescription. The baby and I went to the pharmacy and filled his prescription. Upon returning to the hospital, the Infectious Specialist happened to walk through while I was away, and the nurse had her get him an injection to stop him from being ill. They were just giving him a little while to recover before giving him the IV injection. There was nowhere to sit, and barely standing room. I was so focused before, I never noticed how packed the room was with people. I stood with the baby on my hip for what seemed like a very long time.

Prior to insurance approving in home care, we had to go the Day Surgery daily for my partner to receive the prescribed injections.

Prior to insurance approving in home care, we had to go the Day Surgery daily for my partner to receive the prescribed injections.


After a while, he looked and acted like he was feeling much better. The nurse gave him the antibiotic injection, and had us wait another thirty minutes. We were then able to go home, but would still have to come back the next day. This went on for a couple of days until in home care was approved by our insurance. I was so thankful when we stopped having to transport him to get the antibiotic injections.

For the next eighteen days straight he was bed ridden with head pain, attributed to encephalitis. For one month, an in home nurse came by once a week, and a courier delivered the medications, and supplies to care for the pick line site. I administered his antibiotics every day. The kids were very mindful of his condition, and thoughtful most of the time. However, his sensitivity to sound made it tough some days for them to just be kids. It was a big adjustment. None of us were used to him being home all the time. He’s a very on the go kind of guy. Always busy. He worked full time for the same company for more than fifteen years.

He spent most of the month in bed, or the recliner. Once he stopped feeling like he was dying, he hated that he was unable to be active. His eyes hurt and could not focus for some time. This prevented him from reading or watching TV. He had no energy, was very weak, and experienced a lot of pain. He could no longer work full time, or participate in life as he had before. This effected his mood, and outlook on things.

When he was done the antibiotics, he still did not feel completely recovered. He didn’t look the same. He lost a lot of weight. When he was discharged from the care of the Infectious Specialist, not one of the doctors could say with confidence he would not have further issues from this experience. To this day, we are still adjusting to the way it has changed life for us and he has not fully recovered. It has been four years.

You can find more information about Lyme Disease, and a list of resources here http://www.lymebuddies.com/online-resources