Bell's palsy at the onset 12/6/11

Bull's eye rash and flu like symptoms are just the beginning. It is odd to me that what doesn't hit the news much is what happens next after the Bull's eye rash, arthritis and flu like symptoms go away. To stop at those beginnings is like standing in the doorway of a building and not stepping inside. The statistics are iffy, but it is clear that a large percentage of people with Lyme disease did not ever have a Bull's eye rash, or at least that they remember. A woman not far from me remembers being on a camping trip and getting sick, and then never getting better. Raymond Anderson cut himself while cutting up a deer that didn't seem to be acting right, and the next day he got sick, and then he didn't get better. I think the lucky ones get the rash. That way they know that something happened, and if they get sick at least they have that in the back of their minds---- "Oh, I wonder if this might be the Lyme disease."

I had early symptoms back in 1974, long before Lyme disease was discovered in Lyme, Connecticut in around 1985. I had spent a weekend on Long Island that summer, and then in late summer I traveled with my family up to the Georgian Bay in Canada for a week of camping. Swimming is my passion. I loved hiking, camping, a fire at night. At that time I was only 24, slim and active. I probably dove off the granite rocks with my brother and sister into the shimmering bay 30 times or more, scrambling out of the water and back up to dive again, before we built a fire and made dinner.

Next morning I felt cold and listless. An egg like lump on the top of my head had formed overnight, like somebody had whacked me with a baseball bat. The area was sore. Mom and Dad were sure the lump and listlessness were due to a concussion. I told them that it wasn't a concussion because I hadn't hit my head on anything. When I sat up, however, I cried. Which supported their concussion theory. It wasn't anything specific just chills and a vulnerable weak feeling. I dragged my sleeping bag down to the beach each day and laid it it while the others swam. I was used to getting strep throat fairly often back then, before they took my tonsils out, but I didn't have anything specific like that. Nothing came to mind to explain how I felt. It was like my energy was too low to participate in anything. Mom wanted to know "Aren't you your father's daughter?" Usually, "yes," I'd be climbing the highest hill, trying to make the top with the best of competitors, but that week it was enough to raise my head.

Next day after we got home was windy and stormy. The air had the heaviness of a major low pressure area, and I felt awful. I laid under my favorite flower garden quilt and looked through it at all the colors from underneath, and listened to the thunder. It didn't take long before I noticed something was wrong with my face. I screamed to holy heaven when I felt that it was paralyzed on the left side. I screamed some more as I ran down the hall, and when I saw myself in the mirror I dropped to my knees and howled. My mouth hung slack on that side and my eye was wide open and wouldn't blink. My howl pulled the lifeless corner of my mouth to the midline under my nose, and the right corner almost to my ear. I could see my wisdom teeth. It was a gruesome sight, punctuated by a long sliding glob of saliva that slipped out of my mouth and off my chin.

Bell's palsy is a symptom of Lyme disease, but nobody knew what caused it back then. They thought it was from traveling in the car with the windows open, our 4/70 air conditioning, four windows open at 70 miles per hour, supported that conclusion. I stood in front of the doctor's bookcase feeling miserable, with a tissue to my mouth to hold in the drool. The blink-less eye had to be blinked manually, which I did with one finger. "This is classic Bell's palsy, "he said, and he took photographs, front, right side, left side. I felt stupid and ugly standing there with his camera on me.

Bell's palsy wasn't horrible in that it was painful, but the disfigurement stunned me. I was used to be looked at and admired, and men wanted to kiss me, but I wouldn't be kissing anyone for quite some time. My face felt like a thick blob, and I couldn't close my mouth, and my tongue had a thick cloddiness as well. I wanted to hide my shameful looks. Emotionally I couldn't face the reaction others had to me. The first day I had the nerve to go out, a good friend suggested I see the movie 'The Freaks, then a little toddler pointed a finger at me and tugged at his mothers skirt, a look of horror on his face. I went home and slept off the bad feelings.

Doctor Afnan put me on prednisone to reduce the inflammation of the nerve, which also compromises the immune system, which is not good for Lyme disease, but they didn't know that back then. It was the treatment of choice. I had no feeling or movement on that side. Complete paralysis. Doctor Afnan wanted to operate and open the ear canal to the brain to relieve the pressure, but I read that 80% of Bell's palsy gets better on its own. "No way," I said, "I'll take my chances without surgery." That cock sure attitude changed when six weeks later I still couldn't move a muscle on that side, or feel anything, and my social life was pretty much a big blank-ity blank, blank, zero. Mostly I slept and drank coffee, and stayed home at Mom and Dad's house where no one could see me.

More than six weeks into it, I woke up one night with little zings of electricity streaking across my face. I couldn't stay in bed and kept leaping to my feet and running down the hall to check the mirror--nothing, nothing--then by morning although I couldn't move anything I could feel the tiniest spot on my lip. The nerve wasn't dead! That meant that the pressure hadn't been strong enough to kill the nerve. I jumped around for joy. Everyday after that I could feel more; then move my mouth a little bit; then the eye could slowly drag downward to close in a retarded blink. But it took about four years for my face to recover completely and not droop, and even today driving in the car with the fan blowing in my face or a low pressure storm will cause those nerves to ache.

Looking back, I think that either the Georgian Bay or Long Island was the likely source for my Lyme disease. Long Island became known as a hot spot for it, and still is. Canada has come up with beaver pelts with Lyme disease from back to the turn of the 20th century, so it was around, at least, that's what I've read. So, I'm guessing, likely one of those two spots. If so it was probably treated on several accounts with antibiotics because of my recurring strep throat. But I never had a noticeable bull's eye rash only the mysterious lump, which could have been a bite site lost under a mass of my curly 'wild and wooly' brown hair, and the chills, and weakness and listlessness, and most importantly the oddness of it all.

12/5/11

I met a man yesterday who's sister was treated for two weeks for Lyme disease, and that was a number of years ago. Now she is sick and can barely eat or walk. She can read a book in a day, but doesn't know anything about what she read the next day. Her husband is fed up with her. That's all I know about this young woman, but my heart goes out to her, because I was there.

What I want you to know first, and most importantly, is that Lyme disease is treatable with high doses of antibiotics even in late stage. I am living proof of it. I went undiagnosed in late stage for seven and a half years, in terrible pain, with fatigue that sucked the life out of me, until I didn't recognize pictures of my children. Then I was treated for twelve years before the Lyme finally went into remission. Now I am medication free.

It was life in hell, and yet I looked good. I have photographs of me with my daughter of five, where I look happy and perfect, when in fact I could no longer read and lived with excruciating pain and fatigue. How do you explain that to doctors? How does a husband or wife make sense of that? They don't and they can't. It takes faith to understand and treat a patient with Lyme disease, unless the individual is partially paralyzed or completely debilitated, because it can't be seen, and lab tests are often unreliable.

It wasn't until I had the sweetest, tiniest, ferrel baby kitten that I had an epiphany about what happens in the body with Lyme disease. The kitten lived in the woods behind my daughter's apartment. The mother cat had begun bringing her kittens down to the parting lot where people brought them food. Somehow this kitten's tail had been denuded of skin and hair, and my daughter caught it and took it to the vet. He removed the tail and sewed her up, and then my daughter brought her to me for care. The kitten was covered in fleas! And it was too sick and fresh from surgery to have a flea bath.

My youngest daughter was still home at that time, and we began to pick fleas whenever we had a free moment. We laid the kitten on her back, on the palm of my hand, and chased fleas through her calico fur. By the third or forth day the kitten began to relax and sometimes fell asleep. When that happened the fleas rose to the surface of her fur we assumed to leave the body and lay eggs but it gave me an idea about Lyme disease.

Lyme bacteria can attack the body and then withdraw. When the body is under attack there can be all kinds of symptoms depending on where the attack is being made. When it withdraws the symptoms leave, or at least improve, depending on the damage done. It made such sense of something that was very hard for me to understand over the years, because I could be so sick that I could barely move at times and in terrible pain after awhile, and then the fatigue would lift and I could get up and go about my life, or go to a party or whatever. How do you explain that?

I believe that Lyme is not like other illnesses that descend and wage battle until either they or the survivor win. Think of the body as the world during a world war, battles going on here and there, moving, changing tactics. Lyme is like that. It can be in a joint or the bladder, and then it might be in the brain or leg bone. It can affect the heart and the rate of digestion one day, and cause vertigo the next.

The spirochete, Borrelia bergdorferi, that causes Lyme disease does not travel through the blood stream like most bacteria. It taps it's way through the cell wall and moves through the tissue, even bone and ligaments. It actually felt like my bones and tissue were being drilled through, especially at night, or even while watching a movie or at rest. Once I reached late stage what I assume was this movement created terrible pain that could descend or withdraw with stunning quickness.

A number of years ago, I interviewed a Lyme support group about their late stage symptoms. One thing they had in common was restless leg syndrome. They kept an eye on fellow parishioners for those who couldn't sit still in church and took them aside afterwards to see if they had other Lyme affects. They used a good check list. I recommend going to the website Lymepa.org and reading the article 'The Basics.' It concludes with an excellent check list. Do not be concerned about having all the symptoms. It took years before I had a large number of the listed symptoms manifest in my body.