I Will Beat These Beasts--Lydia Niederwerfer:Part 1

The Story Begins

After a gorgeous day of picnicking and canoeing, I discovered a tick buried in my shoulder. Who knew that this small insect would change my life? I went to the ER and was given 10 days of Doxycycline just to be cautious. A couple days later, I had the Bull’s Eye rash, mild headaches, minor flu-like symptoms, and a stiff neck. The standard regimen seemed to help because I felt better.

A couple weeks later, I began getting stiff knees. Besides my stiffness, I was experiencing headaches, hot flashes, chills and fatigue. I asked for another treatment of antibiotics and was refused, not only by one doctor, but many. The Western Blot and Elisa tests were defined as negative, only 3/5 bands positive with others described as IND. Despite the tick, all the early clinical symptoms and some positive bands, the doctors refused to think Lyme was to blame. It had to be something else.

After numerous tests to rule out ms, lupus, meningitis, rheumatoid arthritis, celiac disease, etc., my central nervous system functions began to go awry. Quickly, I became completely debilitated. It was as if someone poured a bucket of symptoms over my body all at once. The list was endless: severe nerve pain, one stiff hip, uncontrollable shaking of hands and arms, constant low grade fever, peripheral neuropathy, temporary loss of sight, tunnel vision, chest pains, severe pain all along my spine, flu-like symptoms, loss of night vision, loss of speech, loss of motor functions, loss of coordination, difficulty walking, numbness and tingling of head, hands and feet, arthritis, short term memory loss, loss of hair, loss of cognition, inability to hold urination, diarrhea, and severe migraines. With each breath my entire body burned. I hoped each breath I took would be my last. I became bedridden, severely depressed and unable to do any work. I had to endure the indignity of having to be bathed and clothed by my husband.

Yet, the doctors would not acknowledge the possibility of Late Stage Lyme. It had to be just a coincidence that these symptoms all began since I discovered the tick, waned while I was on antibiotics, and continued to escalate shortly after I finished my treatment. A thought was that I became re-infected with Lyme while my body was still recovering from an initial infection, and that is why I was affected so quickly and intensely. Of this I’m not so sure, for I was very careful after I found the tick earlier.

Finally, an open-minded and thorough neurologist performed an LP (spinal tap) as well as many other tests. The Lyme bacteria was present. He was surprised that I was diagnosed with rheumatoid arthritis despite the negative tests results for RA. He was also surprised that the doctors didn’t factor in the gray chalky pallor of my skin, the fact that I was quite debilitated, and many of the early clinical symptoms of Lyme which were clearly present at the onset. Immediately, an in-home IV antibiotic of Rocephin for 28 days was prescribed; my neuro followed the guidelines as were set by the CDC. By the end of 28 days there was some improvement. I was no longer completely debilitated where I had to have someone bathe and clothe me.

I still looked like a cancer patient undergoing chemo, still had gray, chalky pallor and only half my hair. I still had absolutely no night vision, uncontrollable shaking of my arms, not to mention barely being able to stand upright or walk. It was suggested that I go to Shands Medical Center, which I was told had a reputation like Mayo Clinic in the Midwest. My medical records were sent; I was notified that I would have to undergo all the tests that I had already done again because Lyme disease did not exist in Florida. Then, it was suggested by my neurologist that I see a doctor who was familiar with Lyme disease.

After signing off several medical waivers, I saw a doctor who conferred with Lyme specialists from three different states and began an agressive18-month antibiotic treatment. For twelve months, I endured all the horrible side effects of the antibiotics. In my opinion the puking, diarrhea, constant nausea, migraines, etc. were my cross to bear so that I could become healthy again. Plus, after being entirely dependent on someone else for a while, this was so much better than being completely bedridden.

After a year there was some improvement. My vision had improved a bit, the gray pallor had begun to disappear, and I had a few more good days than bad days. It wasn’t until a Chinese herbal treatment was added to the conventional, antibiotic treatment that I saw quite a bit of a difference within a week. I continued the herbal treatment for approximately another year, working with a NY doctor who specialized in Chinese Medicine and treating Lyme. This alternative route played an immense part in helping me handle a majority of the symptoms and recover from some. This was a new beginning for me; I would actually get my life back. So I thought.

It wasn’t until a few months later that I realized I was left with some residual damage. My mind was not the same. I could not recall a few years of my life. The more I tried, the more frustrated I became. I decided to continue in my financial and banking career, only to find that I could not remember some of the most basic concepts and math problems I had used over and over for years. I found it difficult even managing my budget, checkbook and investments. I was particularly proud of my grammatical and writing skills, which for some reason didn’t come easily any more. I had to relearn and practice some of those skills once again.

If the CDC guidelines set by the Infectious Disease Society of America (IDSA) allowed more accurate tests--which are available--for Lyme outside of the standard Western Blot, and if they were more flexible in giving additional antibiotic treatment beyond their set guidelines, I may never have come to that bedridden state. I may never have experienced the long lasting effects of Lyme. If more doctors were familiar in the treatment of Lyme, I may have been able to continue with my passion for teaching and informing people about their financial goals. I would have continued to work as much as I wanted to without repercussions and without experiencing minor flare-ups. The possibilities that--before I became ill with Lyme--were endless.

Six Years Later, Battling Lyme Disease Again

After almost six years of doing well, I had surgery in April 2009 and was given steroids. Steroids suppress the immune system. A simple and typical surgery ended up with several complications. I had lost complete hearing in one of my ears, and the ENT had no explanation. A simple surgery. I should have recovered in three to four days, but the days became weeks. 

A week after my surgery, I was progressing poorly. After another week, the suggestion of placing me in the hospital was mentioned. I refused. My experience with the medical community left me with distrust, and I’d have to be on death’s doorstep before I'd allow anyone to take me to the hospital. I could sense something was seriously amiss. A few months passed and I refused to even consider Lyme disease again.

Some of the Lyme symptoms such as the nerve pain and stiff knees returned. Then began the drenching night sweats. Shortly thereafter, I awoke to find that I could not hear a thing. The ENT still had no explanation, and inner ear surgery was suggested. Since my earlier experience with Lyme and its many complications, I set out to look for a doctor who would consider testing me for Lyme and other tick-borne illnesses.

Boy, was I surprised--any mention of the word Lyme, and I was immediately turned away. I set out to find doctors who were treating patients with Lyme. I made a list of five in my area, ranging from three to five hours away. I came up with dead-end after dead-end. They were simply too overwhelmed with patients seeking medical attention for Lyme, or they stopped treating them for fear of losing their license. I came to the last name on the list. He was a two-hour drive from home. His fee began at $220/hour and was not covered by insurance. I was so frustrated. How in the world was I able to afford his fee?

Part 2 Friday.