What's in a Name?

This is long. You might want to pour a glass of wine, get a snack, go potty first. But it's important, I promise.

Lyme. It used to be that the first thing I thought of when I heard that word was the fruit; shiny green and tangy and sweet, and wonderful with a little cane sugar and water over ice. Maybe better if you took out the water and poured in Cointreau and a nice Anejo Tequila, bonus points if you slap salt around the rim. If I saw the word I thought of coastal Connecticut, or the Cobb, in ye olde country, for which I carry a deep fondness despite having never crossed the Atlantic. Excessive consumption of Jane Austen can do that to a girl.

But that's all over now. You say Lyme or even lime and I think, hear and see only one thing. Lyme Disease. I think ticks, doctors, lab work, and antibiotics. I never had a rash. I don't think I've ever seen an actual deer tick, although I've pulled many dog ticks from myself, my pets, and my family and friends. I didn't have a sudden onset high fever and malaise and joint pain. But I do have Lyme. Looking back over the last years, I can see a pattern forming; a pattern of symptoms ranging in severity generally coinciding with or immediately following stress or illnesses. Yet in my 20's, when I was rearing germy small children and babysitting for other people's germy small children I was mostly healthy. Why would a healthy woman in her 30's suddenly develop an inability to fight off even the slightest cold? And be exhausted and unable to keep her eyes open much past 9pm? Gene and I hiked a lot on the weekends back then. I lost the stamina for hikes and we regressed to 'walks', eventually dropping that entirely. Paddles were short, an hour or two in the early morning. There was always something I could pin the pain and lack of energy on. I never went to a doctor. Instead I researched the new symptom of facial numbness until I found a probable cause (other than MS). I lived on Diet Coke therefore it must be Nutra-Sweet. I stopped drinking Diet Coke and the symptoms mostly resolved, returning if I accidentally ingested anything containing Nutra-Sweet. Well, or if I were under stress, or caught a cold, but of course I discounted those times as flukes and "all in my head". Stresses came and went, colds, flu; each one a little harder to kick than the one before, each taking a little more out of me. But I pressed on, and assumed it must just be me.

Shortly before my 40th birthday I'd had about enough. Armed with a list of what I called "whines", I headed to my regular doctor for a physical. They could not find my chart - an indication of how often I visit them; it had to be dug out of an "inactive file archive". I walked in armed with my list and started asking questions. I asked for things. Embracing middle age, get it all out on the table.

I am pretty sure my doctor thought I was a hysterical female. I came to this conclusion because after refusing to order even a mammogram, she offered me no explanations for my various "whines" (for a complete list of all the symptoms I've had in the last ten years, please see the list at the end of this post) and in fact glossed over most of them. She asked if I thought I was having panic attacks, or if I thought I was depressed. I said no, and was taken aback. Well maybe panic attacks, but I wasn’t depressed. She asked if I wanted to try some antidepressants anyway ("Would you like some Skittles, little girl?"). I declined the candy, and she sent me on my way. I internalized this. Whatever it was or wasn’t it was obviously 'all in my head'. Germophobic since microbiology class, it must be neurotic little me. I stopped riding on the bike trainer as much. I was too tired, and it hurt. I did more yoga. But nothing else changed.

I finished the manuscript for "2-at-a-Time Socks" in February of 2006. It felt very good to be done, and I'd been looking forward to some breathing time. I wasn't to get any. I delivered the manuscript on a Monday, the same day that I bought a new car, and then raced to Baystate Medical Center where my mother had just undergone an emergency cardiac catheterization after a Sunday heart attack. Formerly estranged from her, the stress involved in her very dramatic return to my life combined with finishing up the book put me in a pretty depleted place. I was, I said, run down. The symptoms increased. Exhausted all the time, painful joints; I often referred to it as “feeling autoimmune-y” for lack of a better explanation. It seemed connected to stress and illness for sure, whatever this “all in my head" thing was.

Any – and they were very few as my still-thin chart illustrates - visits during this time to doctors for help or advice yielded the same response. More pats on the head and offers of antidepressants which I always refused. Sometimes I wanted to scream “I AM A HAPPY PERSON!! I SWEAR I AM NOT F&^%ING DEPRESSED!” but I suspected this might have an opposite effect. It did not help that I went in saying that I was sure it was all in my head. But shouldn't a doctor question that? Isn't it part of their job, to look at a patient and say "Yes, these symptoms taken separately might indicate a response to stress. But all together, having this much impact on your life, maybe we should look for a physical cause?" Because I am a nurse, and because I can get wrapped up in the science of things, I wasn't willing to push doctors in the absence of documented physical symptoms like fevers or grotesquely swollen joints. I made it too easy for them. I felt as if they were not listening anyway; as if they'd made a decision and a probable diagnosis within 10 seconds of walking in the door.

In the fall of 2007 I had surgery for a "woman's problem". It was a problem that would have hindered my ability to travel, shall we say, "safely" and it needed to be resolved. With the impending release of "2-at-a-Time Socks", it was vital that I be portable. The surgery was uneventful and my recovery rapid. But afterwards I just couldn't get back on the bike. I tried doing yoga, but kept falling over. I had no balance and not a lot of coordination. I tried the treadmill. If I walked for 20 minutes on Monday morning I'd spend the next day and a half exhausted. It wasn't worth it. I conserved energy for when I needed it. It was during this time that I first noticed some changes in my brain. Things didn't work quite right. My memory had gaps. Everything was harder, every interaction became effort. I felt absent in my own mind at times, as if I was missing out on my own experiences, my own life. It felt like filters were gone on everything - hearing, speaking, as if someone had just reached in and shut off the part of my brain that filtered what I said and heard. Noise made me crazy. But I could cover most of it up. Cheery blog posts, and continual refusal to see a doctor. It worked for a while.

When "2-at-a-Time Socks" came out and was the hit I'd secretly hoped it would be (thank you all very, very much for loving my little book!), my stress level stayed high. Any symptom could easily be explained by stress. The exhaustion, the air hunger (which I did not fully understand until it was gone) were asthma and stress. My odd brain moments, also stress. I just carried on in complete denial about what was happening to my body, and to my life.

In January of 2008, with the book out and thriving we took a long-planned anniversary trip to our favorite place on earth, Walt Disney World (yes, I know. Princess Chicken Farmer? It’s just who I am, man). We added on a Disney Cruise. The time on land wasn't great, and the time on the boat was mostly wretched. I'd have moments were I felt good, and then moments where I just wanted to throw up, lay down, anything but walk or stand. My ears felt weird. I took a lot of naps and slept in more than any other vacation. Before we even got on the boat it felt like the ground was moving, rolling under my feet. Sometimes in a ride queue I’d have to hold onto the railings because I would get dizzy. I tried motion sickness medicine. Everything hurt, randomly and intermittently. I had no energy by fits and spurts. On the cruise I was sick pretty much constantly. I attributed it to the motion of the ship. I decided my ears had fluid in them. It didn’t explain the joint pain, or the muscle aches, but I figured those were stress. By the time we got off the boat I had a fever that I blamed on sun. I had joint and body aches that I insisted were stress (because riding a bike around a tropical island and sitting under an umbrella knitting while watching the water and sipping a Mai Tai is so stressful?). I began to forget what “good” felt like. The bar got lower.

The possibility of my having Lyme disease had been discussed by different people over the last few years. My mother-in-law was the first to mention it. I looked it up and decided I didn't have that, since it was a real disease and mine was "all in my head". Other ideas were thyroid, but that was normal too, and a few autoimmune diseases that I didn't really fit and were not reflected I lab work.

I knew I wanted to do a second book. Storey did as well, so we began to prepare for the sequel, if you will, to "2-at-a-Time Socks". Toe-up socks this time (coming in April 2010 to a bookstore or website near you, watch for it, because it's going to be a DOOZEY!!) and with more, lovelier patterns. In the same time frame my mother became more ill, and my involvement in her life accelerated. I began work on the second book in the summer of 2008.

This past fall and winter were little more than a personal hell for me. I insisted that once we put the second book to bed, things would get better. The stress would be off. I delivered that manuscript in January of this year, 2009, on the same day my mother went into the hospital for major and rather dangerous spinal surgery. Her recovery was prolonged and complicated by an undiagnosed seizure disorder that has left her with permanent deficits. Although I knew I was getting sicker, I also felt that I did not have time to see a doctor. I started making driving errors, wrong turns, misreading traffic lights.

The medical establishment has its head so very firmly up it's (pardon, please) ass where women's health is concerned and where Lyme is concerned so generally a woman heading into a doctor’s office with vague complaints of joint pain and fatigue will likely be offered something for depression. Some of this to sexism to be sure. It is also due to the abject failure of the medical community to properly educate itself about Lyme, and many other diseases. Dear doctors, if you are reading, please. If you do not know the answer, and you can’t find an answer, refer your patient to someone who can in a timely manner (less than a month, say). If you don’t believe that your patient is experiencing physical symptoms when they say they are, retire and take up something less harmful to humanity. Try knitting. I know a great little sock book. You'll love it.

In May I glossed over here on the blog that I'd recently been diagnosed with Lyme disease. I never said what it took to get the diagnosis. The driving factor in my decision to seek help was my husband. He never once faltered in the belief that there was something physically wrong with me, even when I didn't believe it myself. My mother-in-law was the first to encourage me to find a Lyme specialist. Carol very generously shared information and time, directed me to LymeNet, and agreed that a Lyme specialist was needed. I, of course, insisted my primary could "handle" it. I went to see her.

She listened and said she did not think I was nuts. I had not put together the whole pattern yet, only the past 6 months or so. I left out a lot of things that I had decided were "no big deal" or "not related", or things that were just so scary and strange that I was embarrassed by them. "Patients...", as the fictional Dr. House so succinctly puts it, "lie." This is true. Not intentionally as a rule, but by omission, yes, we do. She seemed quite 'Lyme literate'. She thought I had Lyme disease and said she would do some lab work to rule out other things; autoimmune diseases, for example.

After a two week delay from that first visit I returned to my doctor confident that she'd give me a prescription for antibiotics and in a few days this would all be behind me. She said that the test for Lyme was negative. I asked which test it was. She said it was the (notoriously inaccurate, carrying a 56% false negative rate in clinical research studies - results LESS successful than a coin toss) ELISA test. I asked for a Western Blot. She said the practice relies solely on the ELISA and will only order a Western Blot if the ELISA is positive. She requested that I see an infections disease specialist and a rheumatologist. She said she suspected that I might have fibromyalgia. The key diagnostic criteria for Fibro involves a series of points on the body that are painful to pressure. I hurt pretty much all the time not only when squeezed or poked, and not in the pattern of Fibromyalgia.

I should probably send her a thank you note. Her denial of what I by then believed to be the obvious, her unwillingness to go with her gut and make the clinical diagnosis of Lyme based on symptoms, my location in the country, the location of my home, and my rather outdoorsy lifestyle pushed me down a path that ultimately got me treated properly. She handed me a prescription for an antidepressant, asked me to make an appointment at the desk for the rheumatologist and have some more blood drawn on my way out. Could I, I asked, see the infections disease guy at the same time? No. She wanted me to wait, one at a time. I was to trust her. Stunned, I took the script. At the desk I took the first available appointment at the end of June, more than a month off. I had my blood drawn. I went to the pharmacy and filled the script for the antidepressant. Once home, I sat and pondered. I knew in my gut that I was really sick. I knew it wasn't all in my head. I knew I was scared for my life, and I knew I needed to get better, soon. I knew I didn’t trust her any more. I believed ME. And I knew that I did not need an antidepressant. I stuck them in the back of a cupboard.

I am much better now even without the proffered antidepressants. What happened? Well, in a moment of clarity I took the advice of my mother in law, and friends Rue and Carol and acceded to the demands of my husband and called an ILADS certified Lyme specialist. Unable to remember my telephone number while making the appointment, the receptionist said "…sounds like Lyme." Sounds like Lyme, she said. Just like that. And an appointment in less than a week from the day I called. "My God, I can't remember my phone number, and someone agrees that this sounds like Lyme" I thought. I swallowed hope quickly, stuffed it down, because I wasn’t sure there really was any and I didn’t want to be disappointed again.

On the evening before the appointment I tried desperately to weasel out of it. I was panicking, or maybe the spirochetes (bacteria!) were getting nervous. Gene insisted. I met Rue in the parking lot of Big Y and we headed south, a 2-hour drive to see an out of network (read “cash on the barrel head, baby, no insurance accepted”) doctor. By this time in addition to migrating joint pain and a host of other “little” things, there was a constant low, humming vibration and buzz in my head that made me crazy. It wasn’t particularly loud, just dreadfully annoying. Teaching, which I love, had become a nightmare because I could barely stand the chaos of voices in the classroom. Shopping trips were hell. Everything was hell.

In the office of Dr. Zijad Sabovic, I spilled my guts. I love that office by the way – it’s in a house, and takes me back to childhood visits to Dr. Low or Dr. Flo, when doctors still used their heads and didn’t function solely on “guidelines” and insurance policies. He asked all the right questions, and I told him things I hadn't told anyone before. He tested reflexes and neurological responses. I could not count backwards by 7's from 100. I couldn't even try. I bluffed with “I am lousy at math”. I could not walk with my eyes shut, heel to toe, without falling over. I could barely do it with my eyes open. I had very little muscle strength in my fingers. Remember what I do for a living. My fingers should be, given their daily workout, pretty strong. Nearly every joint hurt when given a gentle squeeze. He looked me straight in the eye and said very clearly "I think you have Lyme disease." He did what in-network, insurance and practice-restricted ‘doctors’ cannot do. He practiced the art and science of medicine. He spent time with a patient and made a diagnosis based on what he saw and heard. He drew blood, and I assumed there would now be a two week wait for the return of lab results, which I prayed were positive so I could get some kind of treatment. I was wrong. I left with prescriptions. By evening I'd started taking them. Three days later I felt quite wretched, which I now know to be a Herxheimer reaction. Five days after that it was as if a veil had lifted, and my life started rushing back at me. Yesterday I rode my bike for 45 minutes. Today I was able to code the html for this post without having to use blogger’s link button. In fact I composed this in Word, including the html. Sounds like no big deal? Nine weeks ago I was ready to die. Trust me. Some html and a bike ride mean I am alive.

Will this diagnosis make me thin and pretty and tall? Somehow I doubt it. Will it solve all of my life's problems and woes, making me rich beyond my wildest imagining? I think not. What it has done, however, is offer me hope in what had become a hopeless existence. I don't think I can ever put into words properly what it felt like to be in that place, that awful scary horrible place that I was in a mere 9 weeks ago. Nine weeks. It seems like another lifetime already, yet it's barely been any time at all.
I am relieved and grateful. I think I can relax a little, and trust that it won’t come back, or that if it does Dr. Sabovic will not let me down, and will not hand me a prescription for bloody frelling Paxil. I am beginning to feel alive, and safe.

What I haven’t touched on here, except with a few mildly sarcastic comments, is the intense anger I feel toward the doctors I did see who so willingly dismissed my symptoms as psychological, or asked me to wait what for me were interminable chunks of time to go through a series of specialists. It is not that hard, as a medical professional, to educate yourself about this disease especially given that we live in Massachusetts, a state that Lyme is considered endemic to. It's unacceptable to me that physicians who live in this area are so woefully ignorant of the many faces of Lyme; of how the lab work can be affected based on length of the presence of the disease for example. Of course I "flunked" an ELISA. The bugs were in my brain for too long. That one test determines if a person gets treated around here. My test was negative. Yet I have Lyme, both by symptoms and by laboratory confirmation. Looking back, I’ve probably had it for around ten years, and probably got it during the peak of our hiking. I can think of a time when the symptoms seemed to begin.

I’ll be on the two drugs I've been on for 8 weeks, plus a new drug and a large handful of supplements for 8 weeks more, and then who knows. Initially I was taken aback that he wanted me to stay on the meds for 8 more weeks, but as time goes by I realize that he’s right. I don’t care how long it takes. I had set the bar for “health” so low, that “alive, without buzzing noise most days or joint pain ever” seemed good enough. I have, I believe, a ways to go. I don't want to be 'better enough'. I want to be 'better', period.

There is something inherently flawed in a system that fails to recognize, diagnose and treat a disease that is so common.

I did say I’d give you a symptom list. This is a list of symptoms that have been associated with Lyme Disease by ILADS doctors. Most are recognized by CDC as well. It is probably not a complete list. The symptoms I experienced are in italics. If you, or anyone you know, is experiencing these symptoms, lives in a high-risk area for Lyme infection, or has visited an area where Lyme is endemic I urge you to find, or help them find, an ILADS doctor using the referral at LymeNet. It is estimated that as many as 40% of individuals with Lyme disease will never see a rash. Very few actually see a tick, even if the rash is present. Some have a rash that looks nothing like the classic "bull's eye" they tell us to watch for. Many have a gradual onset of symptoms, or flu-like symptoms without a rash that's explained away as influenza. Although most physicans will verbalize familiarity with this disease, I have found that most are not nearly as familiar as they could be with either treatment or diagnosis. So here it is, then, my little list:

1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas: neck, underarm, groin
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10. Irritable bladder or bladder dysfunction
11. Sexual dysfunction or loss of libido
12. Upset stomach
13. Change in bowel function-constipation, diarrhea
14. Chest pain or rib soreness
15. Shortness of breath, cough
16. Heart palpitations, pulse skips, heart block
17. Any history of a heart murmur or valve prolapse?
18. Joint pain or swelling: list joints: toes, ankles, knees, hips, elbows, fingers, wrists, neck.
19. Stiffness of the joints, neck, or back
20. Muscle pain or cramps
21. Twitching of the face or other muscles
22. Headache
23. Neck creeks and cracks, neck stiffness, neck pain
24. Tingling, numbness, burning or stabbing sensations, shooting pains
25. Facial paralysis (Bell's Palsy)(note: I did not have paralysis, but numbness and an odd veiled feeling in the same areas affected by Bell's)
26. Eyes/Vision: double, blurry, increased floaters, light sensitivity
27. Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28. lncreased motion sickness, vertigo, poor balance
29. Lightheadedness, wooziness
30. Tremor
31. Confusion, difficulty in thinking
32. Diffculty with concentration, reading
33. Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36. Mood swings, irritability, depression (note: also excessive shopping also known as poor impulse control, thoroughly out of character for me and, well, I do miss the shopping a little!)
37. Disturbed sleep-too much, too little, early awakening
38. Exaggerated symptoms or worse hangover from alcohol

33/38. I think I flunk. Or pass, depending on perspective. From, I suppose, the spirochetes perspective, I pass with flying colors. They're certainly had their fun in there.
"Not Lyme" said my primary care physician, using a test statistically proven to be flawed.
"Lyme" says my ILADS doctor.
What do you think?
Yeah. Me too. Now pass me those pills. I've got healing to do.