In the fall of 2006, I was working in Clemson, SC, when I started experiencing some unusual symptoms and fatigue. I gradually got worse until in December of 2007 I could not hardly get out of bed. I continued to get worse and felt so bad that I felt like I was being tormented physically and mentally. I was not able to work. I went to many different doctors for years before I found out what was wrong. I was finally diagnosed with late-stage lyme disease.
Lyme disease is caused by a bacterial infection that if not caught right away and treated properly can spread to any organ of the body and affect any body system including the brain, muscles, nervous system, and heart. It also suppresses the immune system so that other parasitic, viral and fungal infections can and do occur. This disease and its coinfections can cause many different symptoms.
I experience many symptoms at different times including severe weakness and fatigue so that most of the time I am not able to walk to the mailbox or even stand up. Most days I do not have enough strength to take a shower. I am often so weak I can hardly move and have to just rest in bed. My physical and mental energy levels are very low most of the time so that I am not able to get out of the house very often and at times do not even have the strength to talk. I also have muscle aches, joint pain and stiffness, dizziness, balance problems, ear pains, eye pains, sharp pin and needle nerve pains in different places, chest pains, vision problems, chills, depressed lungs with trouble breathing and air hunger, upset stomach, abdominal pain, a lot of trouble being able to sleep, unusually low blood pressure, cold hands and feet that hurt sometimes they are so cold, neurological problems where I have trouble being able to control and move my muscles, general flu-like feeling and malaise, and other physical symptoms. All 11 organ systems in my body have been affected by the disease.
Because the infections spread to the brain, the disease has caused me to have difficulty concentrating, thinking and being able to read, along with memory problems, depression and unusual anxiety. Most of the time, I am unable to do simple mental tasks such as making phone calls or making out my grocery list.
My digestive system has also been greatly affected. Due to the damage to my digestive tract, there are many foods that I cannot eat now, and I must follow a strict rotation diet so that my body won’t start reacting to more foods. I have lost weight, and every time I eat or even drink water my body has a reaction where I get weaker and have worse brain fog that usually lasts for 2 hours after I eat.
Tests also show that I have a high level of the toxic heavy metals lead and mercury in my system that also must be treated and is very related to recovering from the lyme and other infections.
I am very thankful to have a knowledgeable doctor at a clinic in Seattle, Washington, that specializes in treating this complex disease, and she has said that I can recover and get my life back. I have experienced slow steady improvements overall and more relief with the treatment I have been able to do. However, since I found out I have lyme disease there have been very long delays (years) in doing some of the recommended treatment due to lack of finances and other circumstances out of my control. This has delayed my recovery, prolonged my suffering and allowed more damage to be done to my body.
Insurance does not cover my doctor visits or medicines, so I have not been able to take all of the medicines I have needed to or follow up with my doctor regularly like I am supposed to, which has caused me to have more problems. It has been 3 years since I have been able to go to the clinic to see my doctor and have needed testing done. I have followed up with my doctor some on the phone but not as often as I have needed to. When I am able to do all of the recommended treatment I feel more improvements more quickly and experience more relief.
The past 10 years have been very difficult and full of tremendous suffering. It has been more severe and worse than I can express in words. It has been hard being homebound and alone. I have missed out on so much of life and relationships with people. It has been hard not being able to do things, take care of myself or eat foods I enjoy. I am very thankful for the improvements and relief I feel compared to how I used to feel. Every day is hard and a struggle to just be able to do the basic things I have to do to survive, but I am encouraged to know that when I am able to do the recommended treatment I continue to feel improvements.