Shaking Hands With Lyme.

 On October 24th while showering I felt what felt like little skin tag from a cut high up on my inner thigh. I looked down and saw a red spot with a little darker spot in the middle where I had felt the 'raised skin'. My first thought was that my big exuberant 90 lb. dog Ringo must have nicked the place with his huge toenail while jumping up on me. Something he's still having a hard time with.  For some reason I brought the "piece of skin"  into my line of vision instead of letting it go down the drain. I don't wear my glasses in the shower but as I thought I saw movement I picked them up from the edge of the tub, put them on and saw several tiny black legs waving at me from the alleged "skin"...

I got out - found a jar to put the tick in and finished my shower. Although I've always been a health nut I never read much about ticks or Lyme Disease because I had left Connecticut around age 18 and settled in Vermont. Lyme was not thought to be a problem in Vermont. Hell, Lyme has been downplayed in every state of the Union, even in Lyme Connecticut. I, unfortunately was in the middle of switching from one insurance to another so I didn't go to the doctor until 10 days later when I woke up to a huge tomatoe red swollen spot 8 to 10 " in diameter on the inside of my leg. Being as I'd  been on a photography kick, and taking a lot of photographs lately and I didn't know how soon I'd be able to see a doctor I took some photos of it.

I was able to get an appointment for that day. The doctor, a new one in town impressed me with a lively intelligence, respect for the patient, and a down to earth empathetic approach. She said that since I didn't have the bull's eye rash she believed I didn't have lyme but an infection from the tick bite...   She put me on Doxycycline an antibiotic used for lyme for two weeks.  I'm not sure why she prescribed an antibiotic routinely used to treat Lyme, except maybe her intuition knew it was lyme.

Two weeks according to those medical practitioners who are what is described as an lld (lyme literate doctors)  is not enough at all. When I went home I took my first dose and as the day progressed Began to experience the worst chills I've ever had,  a fever, (which I rarely have as I have hypothyroid (Hashimoto's Disease and have always had sub "normal' temperature),  a raging headache which felt like it went from my tailbone to my head, and a deep aching in my joints.
 My son dropped by and stayed home from work because my husband was at work and as my son said later  he had never seen me in such a condition.I had on sweat pants a sweater a bathrobe a coat and several blankets but couldn't get rid of the the deepest most bone rattling shakes I've ever had. I got through that day, and the next day the bite site had turned totally black !  I hardly ever consult with any type of doctor but this was scary shit !

After doing some research and reading and talking to lyme patients I felt that  Samantha Eagle my ND (naturapathic physician may be more lyme literate than a mainstream allopathic physician so I called. She and her colleague had just returned from a Lyme Conference in Boston !!!  Samantha is a wonderful doctor who respects her client's intuitive knowing about their own bodies.When I went in for my appointment I brought the photo of the bite which had improved somewhat. She looked at my photo, examined the real thing, left the room to consult with her colleague and returned to tell me that she and her colleague, who had also attended the Lyme Conference, concurred that the  bite site which had somewhat subsided was a lyme reaction .  So, I was put on 8 more weeks of the same antibiotic, Doxycycline. A long standing IBS, Chron's kind of condition was absent throughout the antibiotic course and returned after it was done. I felt pretty bad while taking the antibiotics otherwise. When I was done with the course the spirochetes resumed their partying in my body with a vengenceand once again I felt lousy , but not in as immediate a crisis mode as right after the reddening of the bite.

Shaking Hands With Lyme is a phrase lyme patients will see in a different  way than others because as the organisms (spirochetes)  which a tick releases into it's host's body through it's bite rushes to it's favourite spots, which include the deep tissues, joints, brain and nervous system lyme  can cause tremors and shakes.

I may change my entire  blog title to this post title,  Shaking Hands With Lyme,  because lyme, once you're diagnosed with it, and even before if you're bitten and don't know you have been , can take over your life.

 I don't want to be a lymey, a lyme sufferer, lyme patient, or lyme survivor.I don't want to define myself by this one aspect of my life. Once lyme spirochetes take over your body, they infiltrate every area of your life and it can become a struggle to have any life other than fighting the diverse and constantly changing symptoms. But it's a struggle worth fighting. Our lives are wondrous gifts, and meant to be lived joyously and I intend to fight for that.

Some of the areas of your life lyme may change (and not necessarily forever - to use one of my favourite phrases around this Lyme situation these are some of the parts of your life which may change "for now":

 Work:  many people become unable to work afraid that their brains and bodies which have become so unpredictable will not hold up.
 Relationships:  unless you're married to Christ himself or Mother Teresa, your relationships will be strained by many challenges. You may confide in some of your family or friends about what you're going through, and find  there will be big disbelieving silences from the other side, or they wont respond to an e-mail where you've answered their query " How have you been?"
Keeping up with your home: Sometimes you'll have to let a let of chores go at home because every move hurts and you keep dropping things or banging into things because your strength and balance are screwed up.
Recreation: ,    Even reading has been compromised and since I'm an ardent bibliophile (book-aholic), that's upsetting. Spirochetes can affect the eyes. The fatigue keeps you from going places and by the time you get what you really need & have to do done (whatever you can manage to do), sometimes you've used up all your zing for the day.

ExerciseMy many daily walks which are like oxygen to me have had to be shortened and cut down some for now.
 Creativity: Last night I took out my guitar  feeling the desire to play some old songs and write a new one.  I hadn't realized all my zing for the day was gone. It felt sad to put her back in the case without having really felt the spark I usually feel when she's in my arms. An the new song that had stirred awake while I was walking with the dogs evaporated... for now... I keep that phrase "for now" alive in my heart because
Emotions: are all over the place. Depressed/hopeful. defeated/determined. despondent/encouraged... There's even an edginess which varies in intensity from individual to individual which has been dubbed "lyme rage".
IQ ! : Your IQ may not change but it sure may seem like it,  if the spirochetes decided to have' Spring Break' in your brain. Things which were your forte, like spelling for instance may go haywire. Your ability to c'connect the dots' so to speak may diminish.
Spiritual: I have always felt a deep conncection to Spirit and my spiritual world but at times, illness can stand between your and your idea of God/ess. It's almost a challenge to your commitment to your connection to spirit

When I was 30 and pregnant with my second child, I was diagnosed with cancer, as I may have written in the "About me" part of this blog. I was 4 and a half months pregnant. A young hotshot oncologist at Dartmouth Hitchcock Hospitel (my 4th opinion) told me if I was his patient he would urge me to treat it aggressively ; abort 'the fetus', (my baby !), and have a radical hysterectomy followed by chemo and radiation. I told him that what he called the fetus, was already "the baby" in my heart, and I was not willing to sacrifice my baby's life for mine. He assured me that if I didn't follow his recommendation "the baby" (said somewhat dismissively) would not have a mother.

He was implying that if I didn't do it his way, I would die. This infuriated me and I basically said "Sayonara" (goodbye in Japanese). My journey back to wellness is the subject of a book which I've been writing for far too long, called Blueprint For joy. I'm lucky to have this experience in my history because it gives me some confidence in this journey through the mysterious abyss of this Lyme Disease.

This blog will be where I explore symptoms, treatments, my experiences and those of the many people who have materialized in my life who also have lyme. It will help me to organize and outline my own custom made wellness plan and to share it with others. As I said to a fellow lyme challenged person - WE SHALL OVERCOME !