I just recently joined Face book,in April and dropped a note to a few of my HS classmates. A fellow classmate contacted me and is very concerned over a family member possibly having Lyme’s disease and needed some information. That is why I am sharing my story with you since then I have been contacted by a few more.
My experience with dealing with Chronic Lyme’s Disease (CLD) or Late Stage Lyme’s Disease affected my life tremendously. Big controversy exists whether there is such a thing. In the summer of 2002, I discovered a tick buried in my shoulder, the 4th of July week. I went to the ER. The standard 10-day antibiotic was prescribed immediately before the results of the Elisa and Western Blot tests were known. The Midwestern ER doctor knew these tests were only accurate approximately 50% of the time. We were told taking antibiotics before the tests could sometimes provide a false negative (antibiotics could cause the disease to go dormant). I had the Bull’s Eye rash (only shows about 50% of the time too), mild headaches, minor flu-like symptoms and a stiff neck; I felt better when I finished. On a road trip to Wisconsin for my 20th High School Reunion the end of July, I began getting stiff knees on the way there. While in WI, besides my stiffness, I was experiencing hot flashes, chills, stiffness, and fatigue. When back in Florida, I asked for another treatment for Lyme’s disease. The doctor stated that the Western Blot and Elisa in July were defined as negative (based on the CDC requirements that define Lyme disease) even though there were some hints of a positive, it had to be something else. After numerous tests to rule out ms, lupus, meningitis, rheumatoid arthritis, etc., my central nervous system functions began to go haywire. It caused a debilitation to my body quickly. Here is a general list of how I was affected: severe nerve pain, one stiff hip, constant low grade fever, peripheral neuropathy, temporary loss of sight, tunnel vision, severe pain all along my spine, flu-like symptoms, loss of night vision, loss of speech, loss of motor functions, loss of coordination, loss of hair, difficulty walking, numbness and tingling of head, hands and feet, arthritis, short term memory loss, loss of cognition, inability to hold urination, diarrhea, severe migraines. Finally, I was bedridden, severely depressed and unable to do any work. The worst times would reoccur about every 40 days (a supposed symptom of the bacteria life cycle). Yet, the doctors would not acknowledge the possibility of CLD. It had to be just a coincidence that these symptoms all began, waned, and continued to escalate at the time since I discovered the tick. I want to add that a couple of CLD specialists thoughts of a possibility that I was reinfected with Lyme’s while my body was still recovering from an initial infection and that is why I was affected so quickly and intensely. Ultimately, I found a very open-minded and thorough neurologist that someone recommended. An LP (spinal tap) was performed as well as other non-standard tests for Lyme’s Disease. The bacteria were discovered in the spinal fluid. An in-home IV antibiotic for 28 days was immediately prescribed; there was not any improvement. I was referred to someone that was dealing with CLD; I immediately began working with her young, open-minded doctor that conferred with CLD specialists (from different states) to continue with treatment. After signing off several medical waivers, I began an agressive18-month antibiotic treatment, the first twelve months there was very little improvement. The next six months, a Chinese herbal treatment was added to the conventional, antibiotic treatment and within a week, I saw some remarkable results. I continued the herbal treatment for approximately another year working with a NY doctor that specialized in Chinese Medicine (a certified doctor in US and Chinese medicine). In my opinion, the Chinese medicine played an immense part in helping me recover from/handle a majority of the symptoms, not cured, from CLD. During my battle with CLD, I interacted with approximately four other people who all were dealing with CLD and knew of others too. None of us had the standard symptoms and was affected the same way. Here is a description of some of each of their symptoms: (1) Confined to a wheelchair, left-side paralysis similar to someone with MS; (2) Severe peripheral neuropathy (limiting clothing that touched and/or limited the contact with the skin) and was very muscularly weak; (3) Severe chronic fatigue, no joint pain, migraines, poor comprehension and cognition; and, (4) Chronic fatigue, flu-like symptoms, and poor joint mobility and stiffness. Occasionally, I will contact one of them to see how they are doing. I spoke with one recently who stated she is “fine” (but when we saw her in 2008 she appeared to be struggling); the others I am waiting to hear from. I only hope that they share some of my same success. Be proactive with your doctors and health care providers. You are the one that knows your body the best. CLD is not a terminal disease or as dramatic as other diseases; however, at times, it can affect your life and your long-term health just as significantly. I have to continue to monitor my lifestyle to ensure I remain well and use extra caution when using antibiotics, choosing elective surgery, using vaccinations and receiving shots. As long as I remain vigilant, I can continue to enjoy my wonderful life.
An early diagnosis has the potential to reduce or even eliminate the longer-term problems that Lyme disease can cause. This is just to add awareness not to offer any medical advice, so that you can protect your family, friends and pets. Enjoy outdoor activities. Be safe.
Please remember this was my personal experience.