My Lyme Disease Story That I Wish I Didn't Have..

I believe I may have had Lyme disease for many many years, maybe as far back as 1986. In 1986 I lived in a town in rural Georgia that was overrun with ticks. I remember pulling ticks off my then two-year-old son. I don’t remember finding any on me but that was a long time ago. That same year I developed about 200 mouth ulcers that covered the inside of my mouth, down my throat, and on my gums. I also started getting very very tired and suffered from debilitating fatigue. I got pregnant in 1988 and the fatigue , paradoxically, became somewhat better. But was that the start? I'll probably never know. 

Fast forward to 2001. I received a Hep B vaccine on Feb 14, 2001. About two weeks after I received the vaccine I noticed quarter-sized bald patches on my scalp. About two weeks after that I woke up one morning with severe pain in my sternum like I had been hit with a fast pitched baseball. Over the next few weeks the pain spread and became more severe. Eleven days after the pain started I started breaking out on my hands and feet with small pustules. They would pop and then the skin would die off on sheets. My hands and feet started looking more like raw hamburger meat than human appendages.  

Meanwhile the pain in my sternum spread into my entire rib cage and into my hips. I could barely endure the mattress touching my torso and I started sleeping in a recliner. I started getting painful, crippling hips spasms that would make me scream and writhe in agony. It got to the point where my legs were so wobbly and weak it was sometimes difficult to walk. I started sleeping sixteen to twenty hours at a stretch. It took eight months for me to get a diagnosis of psoriatic arthritis. I started on enbrel and methotrexate.  The pain never went into my fingers, hands, feet, or toes. I never got the bone deformities that psoriatic arthritis can cause, but I did have some of the spinal issues. I often wondered if I had received the correct diagnosis.

Eventually the pain amped down a bit and my fatigue got a tiny bit better; enough for me to work. I maintained for a few years, but always had bouts of days when the pain and fatigue would hit all over again and I’d be sucked back down into periods of intense pain in my rib cage and sternum. I had about one, or maybe two (if I was lucky), good weeks a month where I wasn't in pain or just in mild pain. 

Since 2005 I have been hospitalized twice for lung infections that would not go away; cytomegalovirus, that made me extremely ill for two weeks; and I tested positive for EBV (Epstein Barr Virus). I was teaching in a juvenile justice detention facility and was exposed to TB at some point, so I also went on lsoniazid monotherapy for nine months through the local health department. I never stopped taking my Enbrel injections or my methotrexate. My rheumotologist said it was fine to keep taking auto immune suppressant drugs while I was in TB treatment. So, my body was under a great amount of physical stress from many different internal avenues. 

In 2010 the periods of pain started progressing and coming closer and closer together and I was having fewer and fewer good days. I developed a feeling like I couldn’t get enough air in my lungs and I also developed anxiety and heart palpitations. I was still teaching full time though. Around this time my rheumy said I had fibro as well as PsA (psoriatic arthritis). In November 2011 I had cervical spine fusion surgery. Pain had started radiating into my skull and my neck popped all the time like a bowl Rice Kripsies. The doctor recommended surgery and I jumped at the chance to actively DO something that would make me feel better.  

It took me a long time to recuperate from the surgery. The pain in my sternum and rib cage was intensifying, so in desperation I went to the Mayo clinic in Jacksonville, Fla. as soon as I could travel in the Spring of 2012. The doctors there put me through test after test but they could no find reason for my chronic rib/sternum pain, shortness of breathe, heart palpitations, anxiety, and chronic fatigue other than  psoriatic arthritis (which there is no test for).  

I was fortunate  in that I had a very good internist doctor in my hometown and he (the most caring doctor I have ever had), at my behest, kept me working full-time with help from Ritalin for the extreme fatigue and pain meds for the bad, bad days of rib/sternum pain.  This was in addition to the weekly Enbrel injections and methotrexate (both which lowered my immune system responses) prescribed by my rheumy.  I wanted to work. I wanted to teach. I was fighting every single day to stay in the game.  When I was given the chance I even took a teaching job overseas, but two things: my father’s worsening Alzheimer’s and the very real possibility of my not being able to continue receiving my Enbrel in the Middle East, forced me to return stateside after five months. Back home I was lucky and got a teaching position in a small school in South Georgia, which I came to love. Truly a teacher’s dream job.

In June 2014 I went to Arkansas to visit my son and on June 21, 2014 I was bitten by what I thought were ticks, but then again I thought it might have been spiders. I just knew the bites were painful, red, angry looking and took weeks to heal.  I knew very little about Lyme disease. 

Looking back, I believe that I had an old Lyme infection that dates back at least as far as 2001 when I first became so deathly ill, and while in Arkansas I was re-infected which caused a major shit storm in my body. By late August, 2014 I was noticing more intense pain that was harder and harder to get under control, neuropathy in my hands, gastrointestinal problems, and some cognitive difficulties. At my doctor's appointment in late August I informed my rheumy  that something was going on and I was very concerned. Her solution was to suggest a new psoriatic arthritis drug medication, Otezla. I took the new med for four weeks and had to stop due to awful side effects. 

By October 2014 I was hearing soft music in my right ear whenever I tried to go to sleep; my brain started getting foggy like I was thinking through a wall of mist; my emotional state got to where I had a difficult time dealing with my high school students; and the pain in my rib cage was, on some days, so bad that I would sit at my desk at lunch and cry once the students left for the cafeteria. I would forget to do tasks that my admin had told me to do (it's not like I forgot and then remembered when I was told- the information was simply not retrievable). I started crying easily over nothing and I became very depressed. I have always read voraciously, but all of a sudden I was having trouble comprehending long passages of texts. Never a great typist, my typing skills became even worse. I think the depression was secondary to the fact that, by this time, I was in pain almost 24/7. Constant pain will break even the strongest person. My right leg and left arm started going numb and throbbed and burned. I was still stubbornly walking three miles about three or four times a week, and I can remember several of these late night walks where I sobbed in pain with each step as tears rolled down my face. But I kept pushing myself.

 I started seeing a chiropractor on a weekly basis, but it did little to help my pain levels. I developed left lower lid eye twitches and deep muscle twitches in my abdomen. I also started having awful stomach pain that felt like pen knives were being driven into my stomach and into my right side under my ribs. My insomnia became much worse and I was maybe sleeping four hours a night. I would find myself nodding off at my desk in the day time. I bought a broom and dust pan and started sweeping the class room in an effort to stay awake, like a mad woman, while the students did their class work. Then, like a cruel joke, when I got home in the evenings I couldn't go to sleep no matter how hard I tried.

That was my life. Now, imagine that every single day this is YOUR life from the time you wake up until long after you fitfully fall asleep. Imagine that after year and year you have no idea what is really wrong with you. No medication helps. You feel your body unraveling like a corded rope and you are helpless to stop it.  No one will listen. No one will or can help you. All that is offered are Band-Aids that don’t work. And all the time you are silently screaming, “SOMETHING IS WRONG WITH MY BODY!”, and you are scared. Very scared.

On December 4, 2014. much to my shame,  I finally completely broke down in the class room. The ongoing relentless pain and fatigue, the insomnia, the emotional stress of dealing with pain on a daily basis, and the demands of a normal high school class room, along with brain fog and memory issues slammed me face first into a proverbial brick wall.  I waved the white flag and went out on medical leave, determined to find out once and for all what in the hell was wrong with me so I could fight. It’s almost impossible to fight a faceless, nameless monster. I needed to put a face to my adversary.

 On Jan 28, 2015 I had another appointment with my longtime rheumy and she told me I was having a "spell" and I would come out of it because I had come out of them before.  I don’t even think she looked at me when she uttered the all profound "spell" pronouncement.  There I sat in her office crying my heart out while my left hip muscle spasmed painfully, and she was telling me I was having a "spell". She seemed in a hurry to get to the next patient and I left feeling as if she hadn’t heard a word I had said. I walked out of her office, demanded copies of my medical records for the past eight years, and the next week I found a rheumotologist in Cumming, Ga. I saw him for the first time on March 2, 2015. Unknown to me at the time he tested me for Lyme disease and the test came back positive on band 23 (a Lyme specific band) with a high Lyme Ab/Western Blot Reflex IgG/IgM and a high CCP antibodies IgG/IgA.  I had never, in fifteen years of being ill, been tested for Lyme disease. When he told me on March 17 that I had Lyme I was speechless, and this ole gal doesn’t do the speechless thing often. It wasn't even anything I had considered. 

Meanwhile I had been subjected to tests for nerve damage to my leg and arm (negative) and an MRI (normal) by a neurologist, and I had a CT scan on my stomach (inconclusive) ordered by my internist. In fact, three hours ago I had an ultrasound on my abdomen. Something has to be causing the awful stomach cramps I get after I eat, but all in all the stomach issues aren't the worst symptom I have and I could easily live with it if I could clear up the sternum/rib pain and the constant fatigue. Just one more piece to a puzzle that has become increasingly perplexing as the years have passed.  If anything else in my body starts going haywire I’m going to lose my shit. Literally and figuratively speaking.

After I showed positive for Lyme disease the doctor started me on doxycyline, but after five weeks it was apparent it wasn't working (I had taken doxycycline for years for acne cyst breakouts and had apparently built up an immunity to it). The doctor switched me to amoxicillin. The first two weeks on amoxicillin I thought I was dying. I mean I really thought I was dying, this is not some sort of writing-for-shock-effect hyperbole. I later found out that this process is called a “herxing” reaction and that it occurs when the Lyme bacteria start dying off. That was a helluva two weeks in which I didn't even have the energy to walk across my backyard.  I now take amoxicillin twice a day, and except for having to take a four day break recently and then going back through three more days of herxing when I started back on the antibiotic, I am really not much better off than when I started treatment in March.

 I am now able to function at about 40% to 50% of my normal level.  The extreme fatigue is often off the charts (think of how washed out you felt when you had the flu and you have an idea of how very very crippling the fatigue can be- it’s not just being “tired”) and many nights I cry myself to sleep from the constant pain in my sternum and rib cage. It hurts to breathe and I become frustrated after a few days and have to let off steam so I can keep going. No medication or pain pill or hot shower makes the pain ever go away- it only dulls it enough so I can endure.

So, after all this time I am nowhere near well and it’s going to take tweaking my treatment and medications maybe several more times in order to kill as much of the bacteria as possible, but I am determined to get my life back. I have to. This can’t be my life forever and ever, amen.

How do I feel emotionally? I am angry. I am angry at the medical community (some of the so-called best) who never thought to test me for Lyme all those years. I am angry at the doctors who tried to make me think that my being sick was somehow my fault, and at times, even insinuated that it was all in my head. I am angry at medical colleges who aren’t teaching upcoming doctors about Lyme disease and what to look for.  I now have a lot of issues with trust when it comes to the medical profession.  What is it going to take before the medical community starts listening to Lyme patients? What is it going to take before people with Lyme don’t have their entire lives stolen because the medical profession doesn’t want to admit that Lyme is as prevalent as it is?

 Doctors who specialize in Lyme disease are far and few between due to CDC and insurance restraints on treatment methods. The closest LLMD (literate Lyme doctor) I have found is a doctor who comes to Savannah from Maryland every six weeks. Then there is a LLMD in Franklin, North Carolina. 

Due to the absence or presence of co-infections, how long the patient has had Lyme, and various other factors, treating Lyme disease can be extremely tricky and vary wildly from one patient to another. There is no one-size-fits-all medical protocol. I have not gotten to the point where I am quite ready to see a LLMD ( I really do like my rheumy and I can see where he is trying to help me), but if I don’t see some improvement by September I may have to consider that option.  It would mean traveling and incurring a great deal of expense, but my health, my peace of mind, and having my life back would more than balance out the inconvenience and costs that are not covered by insurance. 

What makes Lyme disease so difficult to detect and treat? Let’s look at the statistics;  they aren’t confidence inspiring: Fewer than 50% of those infected have any recollection of a tick bite. Last year there were over 300,000 new cases, more than West Nile virus, more than new HIV cases. That’s 25,000 new cases a month. Lyme has six times more new cases a year than new cases of HIV, yet Lyme research only garners 1% of funds for research and study. Lyme disease is the Great Imitator and can mimic M.S, ALS, Parkinston’s, fibromyalgia, arthritis, and chronic fatigue syndrome, among others. (http://lymediseasechallenge.org/the-facts/ )

 I am thankful for the few doctors who have tried to help me and were compassionate, but, in the end, they weren't trained when it comes to Lyme disease and the co-infections that oftentimes come with Lyme disease. As for the doctors who plainly didn't give a shit that I was so sick and who told me there was nothing wrong with me or that it was "just" fibro, I wish for them to be visited by some health issue that will enable them to become more compassionate practitioners. I think that's fair. 

Lyme disease can carry a life time of serious implications for people affected by it, especially when the disease is not treated in a timely manner. Lab tests now available for Lyme are, at best, only about 60% reliable. That’s not good enough. Not when it’s people’s lives that are being gambled with. I was lucky, in a way. When I was finally tested my results showed Lyme immediately, but I often wonder what my life would be like if I had been tested in 2001. Would I still be teaching? Would I be this sick? Would I have so much day to day pain? Lyme disease is the fastest growing vector borne infectious disease in the United States. 40% of people with Lyme disease end up with long term health problems. (http://www.ilads.org/lyme/about-lyme.php).

I don't know if I will ever be able to go back into teaching, and I am in mourning for that part of my life. I was a good teacher and dearly loved my profession.  Now the future is murky and here I am still fighting, trying to get well, trying to find my way out of this bad dream.