Sea Glass & Healing
"Since I was infected with Lyme it seems like nothing is fun anymore. I am frustrated and get very depressed, I mourn fun, I mourn energy, I mourn the old me. My spirit is crushed by sadness. My only comfort is my weekly beach walk by myself. I hunt for sea shells and sea glass and for that short time I feel 5 years old and a little happy. I am safe by myself, no performance, no forced smiles, and no uncomfortable conversations. I sing songs, I pray, I cry. The lord always meets me there and fills my empty spirit with his love and hope."
Elizabeth Neal - 48 -
Santa Cruz County,
California
My life before Lyme was just beginning to get simple. In April 2000, I retired from a 25 year career as a hairdresser. I kept busy with my son's school activities and sport schedule. I was playing on a softball team and I enjoyed snow skiing in the winter time. Hiking in the mountains became my daily exercise. I/we, my husband Mike and I, enjoyed an active social life. We enjoyed going to and having parties with our friends. I was also very active in my church, teaching Sunday school and going to weekly bible studies. I was involved in a food outreach program where we brought food to an impoverished area of Santa Cruz once a month, but I could no longer carry the bags of food and I was too tired to go any longer.
I was 41 when I was bitten by a tick in April 2001. I picked up the nasty little bug on a hike near my home. It went to sleep with me that night and the next morning I discovered it in my chest. I pulled it out with my fingers and went straight to my computer and did a search on photos of deer ticks. I was sure it was a deer tick so I took it to my local GP's office that morning. He looked at the tick and said it was not a deer tick and that we did not have Lyme disease in our area. I told him that I had looked on line that morning and the photo of the deer tick on the Internet looked like the one I brought in. He grabbed his magnifying goggles and took a close look at the tick. He said with complete confidence he was sure it was not a deer tick. I was not convinced. I continued to research on line about Lyme disease and knew what symptoms to look for. I noticed a ring around the bite. Four days after being bitten I developed the classic flu-like symptoms starting with fatigue, a low grade fever and muscle ache. On the fifth day, Easter Sunday, I developed a severe stiff neck. I knew it was Lyme! I called my GP the following day and he told me I was just being paranoid that only 1% of people in Santa Cruz County who have been bitten by a tick get Lyme. I continued to get sicker, muscle and joint pain increase, fatigue, brain dysfunction. I saw my GP several times before he finally agreed to test me for Lyme. He and his nurse were agitated with me because I continued to insist I may have Lyme. My GP told me at one visit that I had fibromyalgia and depression and gave me a prescription for Paxil an anti depressant and Valium an anti anxiety medication. He continued to deny it could in any way be Lyme from the tick bite. I tossed the Paxil, took the Valium. I was coming undone physically and mentally.
It had been 2 months since I was bitten and I was getting seriously worse. I had been on line researching about Lyme from the first day I was bitten and I was sure from what I read I had Lyme disease. There was no doubt in my mind I was moving into the next stage of Lyme. I was relieved that I would finally be tested. Little did I know at that time, the ELISA test he was going to give me was highly unreliable, but by the grace of God I did have a positive result. Four days after my blood test my GP calls my home. He said "guess what?" I said "I have Lyme don't I." He said “How did you know?" How did I know!! Also little did I know, it was too late. I would be sick for years to come. In two short months, the bacteria and parasites had already made its way to my brain and my tissues, organs and blood cells. If only my GP would have believed me and given me antibiotics from day one. I would not be sick today. I still get angry when I think about how I was treated. I learned from my research that I should have not removed the tick with my fingers. I squeezed the tick's stomach contents which carry the bacteria and parasites right into my system.
My GP sent me to another Dr, a rheumatologist, Dr P, who said he was 99.9% positive I was cured after only 3 months of antibiotic treatment. My original GP only wanted to do the standard 2 weeks doxycycline, but I pushed to stay on longer. I told Dr P I had researched Lyme treatment on line and read that I needed much more treatment than 2 weeks or three months. He told he used to teach physicians about Lyme and that I should not believe everything I read on line. He was wrong! I stayed on doxy for 5 months and went off on my own. It was not long when I had a return of the symptoms. I heard of another local GP who was supposedly Lyme savvy and saw him. He gave me prednisone which immediately caused a very serious reaction in my body. Overnight I was in massive pain all over my body, developed bells palsy, severe head pain and I was walking lame. I learned later that Lyme patients should never be given steroids because it crushes the immune system and makes the Lyme infection much worse and can even lead to death. I believe to this day that the prednisone made the Lyme so much worse that it made healing impossible. 7 years later I still have the bells palsy.
I heard of yet another Lyme savvy Dr who tested for co-infections but never looked at the results. He put me on another antibiotic, but when after 2 months I was still sick he said, “I throw my arms up in the air, I don't know what else to do for you." It was years later when I needed to collect all of my old blood work for yet another Lyme Dr, that I learned the test for the co-infection ehrlichia was positive. Maybe he wouldn't have needed to throw up his arms in the air if he had taken the time to look at my results!
I was treated by another Dr in Chico CA with 30 days of hyperbaric oxygen treatment (HBOT.) I moved to a little apartment and had treatments twice a day. Half way through my eyes started to go blurry. After the 30 days of treatment was completed I felt worse and I had to borrow the hyperbaric technicians glasses to drive. I was told it was normal to feel worse. My eyesight was so severely blurry from the 100% oxygen, that I could not drive for a month after I returned home. I was told it would resolve in 2 weeks. At first I went near sided, than as it seemed to resolve, instead it went far sided. Before HBOT I didn't need glasses, now I need them to read. I also found out a couple of years later that if a Lyme patient has the Lyme co-infection babesia, you should not do HBOT. Babesia thrives in oxygen. It seemed like everything I was doing was making me sicker.
I now have a wonderful LLMD that I trust with my life and I am thankful for her. Unfortunately no treatment has completely eradicated the Lyme and co-infections. This is going to be a life time battle. In the 7 years of my battle with Lyme I have been taken to the ER twice with Lyme related stomach issues, IBS and colitis. I had a brain scan called a SPECT that showed I have moderate decreased perfusion in 2 areas of my brain from the Lyme disease. My memory is embarrassingly poor. I have low concentration, low retention. I have dealt with psychological aspects of Lyme, paranoia, severe depression, panic attacks, insomnia and severe mood swings. I am more impatient and have to keep anger in check.
Last year my father was diagnosed with Bb and ehrlichia. Thank God I saw the signs and got him right into my LLMD. On Feb 19, 2008 on our Dr visit together, dad was deemed cured! He was so very sick in the beginning. During that time my mother had a stroke and dad had to have knee replacement surgery. It's wonderful to have both my parents doing so much better! My 18 year old son Ben was also diagnosed with Lyme and Ehrlichia. The test showed it was an old infection. I remember pulling a tick out of his leg when he was about 3 years old. He has not needed treatment, but has to keep a good eye on his health. If he should suddenly develop symptoms he will need treatment. I can't tell you how many neighbors and friends have been bitten by ticks and developed Lyme disease. I feel fortunate that I am available to help and direct them to the best Dr.
Lyme disease forced me to give up my dream of working in the ER as a EMT. I was forced to miss many of my sons ball games, friend's weddings, holiday parties, church, bible study, travel, sports, dates with my husband. I was forced to literally stop life as I knew it. Lyme is the great robber, a cruel and callous thief. Fun seems to elude me now. Lyme has changed me completely. I don't like who I have become. I do not get out of my house much with the exception of my weekly beach walk and I meet a friend for a local week once a week. I attend church when I can manage to wake up before 9am. I have a wonderful husband who puts up with my moods. It kills him to see me so different. I also thank God for my few close friends who pray with me and encourage me. My faith has helped me immensely. But I am deeply frustrated. I have seen the bottom a couple of times and I don't like what I saw, how dark it can be. I live on hope and prayer.
It's been almost 7 years of battling this disease. I am more realistic at this juncture that I may never be "cured" of Lyme. Currently I am battling an intense bout of Epstein Barr Virus which is basically adult mono caused by my suppressed immune system from the Lyme. I had blood work recently that my Lyme Dr feels is indicative of returning babesia. She is putting me back on antibiotics for that. The night sweats have suddenly returned. I am anemic and am getting a lot of headaches, dizzy spells. I woke up gasping last night. I have very little energy, but still get out for my beach walks at least once a week. I don't know what I would do without the soothing sound of the waves crashing, the gulls squawking, a pelican silently souring above, spotting a dolphin and hunting for shells & sea glass! My beach walks are my time with the lord. I sing my favorite worship songs, I pray, I cry and I even indulge in the luxury of day dreaming. I look at all the beach houses and wish I had one. How glorious would it be to have a house right on the sand! I feel moments of joy on the beach, maybe I will be healed I think, and I pray!
