With permission and edited for misspellings:
A Life-Changing Year
I am a 45-year-old wife, mother of three, and professional. I had always been the most optimistic, joyful, and healthy person as I journeyed through my very happy life. I had encountered some minor trials in my life, but nothing like what I encountered in October 2011. October 27, 2011, is the day that I knew my life would never be the same.
However, October 27 wasn’t the beginning of this very long journey. I need to go back three years prior to that. In the summer of 2008, I started feeling like I had bugs crawling across my forehead. I started experiencing a racing heart – even though I worked out every day by running four miles per day and doing kickboxing four days per week. I also started having abnormal hair loss. I had my PCP run blood work, and it always came back perfect. There was never one test that came back abnormal. These issues were annoying, but nothing that I couldn’t get through on a day to day basis. The following year, I started experiencing white, squiggly lines through my vision. Again, nothing that was really affecting my day to day living. I chalked all of these annoying symptoms up to “getting older”, and pushing myself harder than I knew I should. I am a Type-A personality type, so I really never gave my body a change to rest, relax, and rejuvenate.
On October 27, 2011, I was grocery shopping in Wal-Mart when I literally got electrocuted in my right eye. This happened two times for about 10 seconds each time. These shocks in my right eye literally dropped me to my knees. After the shocks, I became very nauseous and disoriented. Somehow I made it out of Wal-Mart, drove home, told my husband what happened, and lay down on the couch the rest of the day. All day long as I lay on the couch feeling sick, I knew something bad had happened to me. However, I had no clue of what was to come the following weeks and months.
For the next two weeks I felt somewhat weak, but again, nothing that I couldn’t fight through. On Veteran’s Day Weekend the same shocks happened again. I knew that I needed to call my doctor and schedule an appointment to discuss this. My doctor ran blood work again, which came back fine, and said I was experiencing abnormal migraines. During the next week, I developed a very strange eye pressure, dizziness, numbness, neck pain, and a feeling that my legs and arms were not connected to my body. I scheduled appointments with an ENT, optometrist, rheumatologist, and my PCP again. These doctors found nothing wrong but said to take some antibiotics for a possible sinus infection. Little did I know that these antibiotics would make me so sick that I thought I was going to die (which we know now was a herx from Lyme disease). These antibiotics are used for Lyme disease treatment, but my ENT had prescribed it for the sinus infection. The last day that I worked was November 16, 2011.
I became so sick I ended up being admitted to the hospital for three days. I had every blood test done that they knew of (including Lyme), CT scans, X-rays, and heart tests. The doctors could find nothing wrong, and discharged me with a diagnosis of fatigue. I went home and continued to get worse. My husband took me back to the hospital the following week and was admitted again. This time, they did a spinal tap, MRI, more CT scans, and more blood work. Again – nothing showed up showing anything was wrong. A counselor came in and saw me and let me know that “women my age often have nervous breakdowns and need to re-evaluate their lives.” “Perhaps that is your situation,” she stated. I let her know that a few weeks ago I was living a very happy, fulfilled life and that MOST DEFINITELY was not my problem. I was discharged this time with a diagnosis of “stress.”
By this time I was so weak that I needed help walking, could not drive, and had lost my short term memory. My husband called his mom, and she came down to stay to help with our children, as I could no longer take care of them. My family googled my symptoms, and the only illnesses that kept popping up were HIV and Lyme disease. However, these tests had both shown up negative in the hospital. My sister said that someone she knew had a relative with Lyme disease. It really was the only disease that seemed to fit my case. We contacted this person, and she referred us to an LLMD in California. My PCP and this LLMD corresponded by telephone about my case and determined that I just may, in fact, have Lyme disease. I started on antibiotics on December 14, 2011.
I became even sicker once I started on my antibiotic regimen and my homeopathic protocol. I could not get out of bed for days, I had panic attacks which lasted for three days and became suicidal. I could not be left alone, as I could not take care of myself or my family.
After about three months I started to pull out of this nightmare. I could think again, was no longer suicidal (I had been on antipsychotics during this time), and my pain had dissipated. I still had neurological symptoms eye issues, brain fog, dizziness, and fatigue/weakness. However, I could take care of myself and family again, although it was not nearly at the level I had prior to my Lyme diagnosis. I was functioning at about 50% of what I used to, but at least I was no longer bedridden.
During the spring and summer of 2012, I did not work. I did not have the strength or energy to go back to my job at the University. I was fortunate to have had enough sick leaves built up over the years to be able to take a year off with pay. However, in August 2012 I did not have an option and returned to work. It was a hard transition. There were days when I didn’t think I would be able to make it through to the end of the day. It is now May 2013 and I have only missed one day of work since returning.
I see my LLMD every three months, switching medications each time. I also see a naturopathic doctor who has me on an amazing protocol of supplements. I believe that these two doctors saved my life and have helped me through this journey. I am still taking antibiotics every day, doing Rocephin injections, and taking 72 pills per day, as well as over 40 tinctures.
I am a changed person because of Lyme disease and the co-infections I have (Babesia and Bartonella). I no longer push myself to the point of exhaustion, have learned to lighten up, and enjoy the small things in life. I know that the only important time in our life is right now. I know now that I can’t predict the future.
The only reason I survived this experience is thanks to my amazing, loving family and friends who never abandoned me throughout this ordeal. I am living at about 95% of normal now. I am able to work, exercise, take care of my family, and laugh again.
I do not remember getting bit by a tick. I did have“ringworm” a few years ago…which may have been a tick bite. I have hiked in the Redwoods in Northern California before but don’t remember being bitten. My mom has been sick her whole life and they think that perhaps she has Lyme as well. So maybe she transmitted it to me and it lay dormant for a long time. I don’t think we will ever know for sure how I contracted Lyme disease.
There is hope for everyone out there who is living with this nightmare of an illness. Please do not give up. Please hold on to every bit of hope you have. With the right doctors, you will be able to receive the care you need.