My Story - Living with Lyme

I have had Lyme disease for 10 years now! It has been a daily struggle to say the least and limits me to do many things that were a big part of my life. Even simple things like general housework can put me down for days. I have always been a stay at home mom to my five wonderful children and now that they are all grown, going back to school or work is not an option because of this life stricken disease I have. I must admit fighting daily chronic fatigue, aches and pains can get you down and you begin to wonder what your purpose in life is anymore, you just simply can’t ‘give’ to others when you’re down, weak and tired. Then I found myself helping friends plan their trips to Europe, the word must have spread because I have spent countless hours since, sharing my insights of Europe. I loved it! My husband saw how happy I was to help people and he recommended that I start a European Travel Blog; my heart leapt for joy! It was something I could do without it being physically demanding and I could take it at my own pace. This website is more than a hobby for me; it has given me a new sense of direction, a reason to wake up every morning no matter what kind of day I face. You’ll have to bear with me, it takes time to research and write about each country in Europe, but what a fun way to fill my days!

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Rewind ten years – December 24th 2003, we had a family over for our Christmas Eve Dinner and Nativity play, we then played games until midnight. I was used to late nights with teenagers, I was only 36; I could handle it. But that Christmas Eve was different, I was tired, a tiredness I had never felt before and it cloaked me fast. Then New Year’s Eve approached, another late night, as we toasted in the New Year once again the same indescribable tiredness hit me like a ton of bricks. I knew something wasn’t quite right. January came and I continued doing my daily 6 mile power walk/jog through the gorgeous German vineyards. I had exercised for years and was quite fit but as each day went by I found myself getting more and more tired at the end of each walk to the point that I would have to sleep after my daily exercise. I was also experiencing severe lower back pain at this point.

By February I was in bed with the flu, or so I thought! Fever then chills, severe headaches, body aches and pains like no other; I had never experienced the flu like this before. I guzzled down bottles of ice cold water so fast and it still wasn’t enough to quench that thirst. I had heard the flu was going around and so I didn’t go to a doctor just so he could tell me to go home and treat the flu like normal. Three weeks later I still had the flu, I had lost 9 pounds and was so weak I could barely walk; it was time to see the doc. He was very concerned and took many vials of blood and told me to go home and wait for the results. By late afternoon I got a phone call from the doctor telling me to go to the Emergency Room, they knew I was coming and were waiting for me (it was just down the road). They needed to take more tests; my potassium level was extremely low along with many other problems (I don’t remember what) and they treated me with antibiotics and I was sent home.

That was just the beginning! I was undiagnosed for two years and during those two years I was in and out of the hospital constantly for dehydration, severe stomach pains, and more tests. I was sleeping all the time, I had major chronic fatigue, I couldn’t even hold up a spoon to feed myself. I started hallucinating; my brain was so fuzzy, sometimes I didn’t even know where I was. I was also dealing with sharp shooting pains in my joints like no other and had rapid heart palpitations which would make it hard for me to breathe at times. I had lower back pain from my kidneys being attacked by bacteria, it was misdiagnosed for a UTI and I was back on antibiotics. Before long, I became very itchy and scratched my body raw; I looked like I had the chicken pox all over my entire body. My scalp became dry and cracked and I started losing clumps of hair, my face shriveled up like a prune, even my kids said I looked ten years older. Life was not good, I was physically depressed and no one could tell me what was going on. Soon my immune system was so low that if I was around anyone that was sick, chances were, I got it. One time I got the stomach flu and was vomiting so violently that it caused a cyst in my throat that later had to be surgically removed. Unfortunately, my voice will never be the same and singing in public is just not an option anymore! 

My family had to pull the load at home.  My husband was a busy LDS Bishop at the time and had to learn to juggle his time at home, work and church.  Our children learned to cook, clean and do laundry, without even being asked, it just became a way of life for them. They became very empathetic and learned some valuable lessons from those years; I don’t think it did them any harm. As a mother though, it crushed me at the time. I was supposed to be doing things for them but the role had been reversed. I spent most of my days in bed or in the hospital and still no one could tell me what was wrong. I was usually given antibiotics and told to go home. In frustration my husband searched WebMD and came to the conclusion that I either had Leukemia, Lupus or Lyme. The three L’s. We took this information to the doctor and he verified that I did not have Leukemia or Lupus and we pushed to have the Lyme test done. It came back positive! Finally we were getting answers. I was back in the hospital to get a Spinal Tap to see if the bacteria had gotten into my spinal fluid, if it had then there were serious chances of becoming crippled or having meningitis which could be life threatening. For some reason the doctor had a hard time with my spine and it took seven attempts and two doctors to get it right. With no pain killers, or numbing me up, they stuck a huge needle in my spine seven times and I was expected to stay perfectly still every time or it would paralyze me. I felt excruciating pain in my leg at one point and in tears I begged them to stop, I couldn’t take it anymore. My husband could see how exhausted I was too, and told them if they didn’t get it on the 7th time we were done, no more. Thank heavens they got the fluid and I was relieved to hear later that the bacteria had not gone to the spine.

I was referred to a disease specialist, where more blood work was done and was told that my body had built up enough antibodies to the disease that there was nothing more they could do for me. Antibiotics were not the answer anymore. If they had caught it at the beginning they would have put me on intravenous antibiotics for 60 days and I would have been cleared from Lyme. But it was too late! Fortunately, all the small doses of antibiotics I was given over the past two years had suppressed the bacteria at times relieving me from Chronic Lyme Disease; I was not in a wheelchair like some. I asked the doctor what I should do about all the pain I was in and was told to take Motrin. I did and ended up in the hospital with a hole in my stomach. Too much Motrin! I was back to dealing with the aches and pains again along with chronic fatigue.

We moved back to the States to try and get some treatment for my Lyme disease but it turns out there are not many doctors who know a cure, at least the ones I went to. I have come a long way since those first two years, diagnosing myself with certain vitamins but still never know what kind of day I will have when I wake up. The aches and pains come and go, the chronic fatigue and brain fog flare up and then I have some good days too. I take it as it comes and feel blessed that I am not crippled by it. I’m grateful for an understanding husband and family who have supported me over the years and have put up with a very tired, worn out wife and mother.

After ten years of coping with this I have found a doctor who is concerned and listens and has helped me gain some energy and vitality back. I still get very tired and weak at times, but I seem to have more good days than bad. I have gone from crawling across my bedroom floor just to go to the bathroom ten years ago to walking five miles a day again, a miracle! The exercise releases endorphins and helps me have good days, it’s not easy exercise by any means, my muscles cramp up, I ache but by the time I’m done my muscles have loosened up and I’m actually not as tired for the day. Who knew? -------------------------------------------------

About Lyme Disease

“Named after the town in Connecticut in which it was first discovered in 1975, Lyme Disease is an infectious disease caused from a bacteria known as B. burgdorferi that has entered into the bloodstream. Although it was known to be tick related, it wasn’t until 1981 when the cause or bacteria of the disease was first discovered by Willy Burgdorfer.

"Transmitted to humans via the bite of an infected tick, Lyme disease is the most common tick-borne illness in the U.S. Though cases have been reported in all states within the U.S. except Montana, 99% of all reported cases come from the Northern Hemisphere. Connecticut, Delaware, Maine, Maryland, Wisconsin and Minnesota are among the most common areas of infection. Not all ticks carry the bacteria known to cause Lyme disease however, only a few species of the genus Ixodes or 'hard ticks' are considered carriers.

Early Symptoms

"The onset of symptoms, usually characterized by a circular skin rash with a red dot in the center, occur in approximately 80% of patients, accompanied by fever, headache, fatigue, and depression. Most cases are successfully treated with antibiotics. If left untreated however, symptoms may become more serious, affecting the joints, heart and central nervous system. Early detection is crucial to successful outcomes in which the standard treatment of antibiotics is prescribed. However, only in rare cases are the side effects of Lyme permanent, or show little response to various forms of treatment. Unfortunately, early detection of the disease while favorable, can be challenging. Tests for Lyme often show false negatives up to 3 or 4 times before patients actually test positive for the disease. Additionally the symptoms are so widespread it is often overlooked as a possible cause”

(www.sunridgemedical.com )

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“Lyme disease is caused by Borrelia burgdorferi (Bb), a bacterial spirochete that is particularly adept at dodging antibiotics and evading the best efforts of some immune systems.

"Spirochetes are designed to survive even if we're hitting them with our best shot. The bacteria can evade antibiotics by a variety of stratagems, including hiding behind a cell wall, burrowing into tissues and becoming dormant, encasing themselves in cysts, or forming a conglomerate called a biofilm, an organized group of organisms that are hard for antibiotics to reach. The varying symptoms of Lyme, which can range from "brain fog" to migrating joint pain to migraines to heart and kidney problems, are caused by pathogens that form toxins and trigger changes in the immune system. Immune function can be reduced, sent into overdrive, or driven to make a mistake in identifying a cell as a pathogen and end up attacking the body itself.”

(Dr. Kathy Spreen; www.philly.com )

Comments

Suzy you are amazing woman, and I'm so glad we were able to reconnect a few years ago. I'm so sad you had to suffer this disease and Ive seen how hard it has been for you at times. I'm so grateful for your friendship and I love you like a sister! This website is brilliant!!! So informative and it makes me want to go to all these beautiful places you've highlighted. Ive been to many but not all...thats my goal...You and I need to plan a trip together...I'd love it!!!! ;)

Suzy Rhodes's picture

Sweet Dawn, I so appreciate your friendship too and I'm thankful for your support with this website, it means a lot to me. Europe's Calling has certainly made my days more exciting that's for sure. I think you know Europe as well as I do, what a fun time we would have on a European Vacation together. Hugs!

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