Struck: Learning to Live with Disease

Without lost there is no found. 

So I tested positive for Lyme's disease at the beginning of last month after being sicker than I have ever been in my life.  From the researching I have done; it doesn't seem that it ever totally goes away.  There is no definitive "cure."  It's basically an organism that you live your life with.  I did a month of antibiotics and am taking a huge amount of herbs and supplements.  I am not better.  The symptoms change, they come and go, but they are not anything that is normal for me, and there are lots of them:  (following list from this site)

Symptoms of Lyme Disease

The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
Rash at site of bite
Rashes on other parts of your body
Rash basically circular, oval and spreading out (more generalized)
Raised rash, disappearing and recurring

Head, Face, Neck

Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell’s Palsy, Horner’s syndrome)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems (unexplained)
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes


Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears

Digestive and Excretory Systems

Irritable bladder (trouble starting, stopping) or Interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

Shortness of breath, can’t get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, Heart blockage

Neurologic System

Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness

Psychological well-being

Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety

Mental Capability

Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Reproduction and Sexuality

Loss of sex drive
Sexual dysfunction
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain

General Well-being

Phantom smells
Unexplained weight gain, loss
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a “flu-like” illness, after which you have not since felt well.
Low body temperature

Allergies/Chemical sensitivities

Increased effect from alcohol and possible worse hangover

I've had or have most of these.  I'm the kind of person who didn't even have an OTC painkiller in my house.  I don't get headaches.  Now a headache is almost constant, usually mild, sometimes severe.  Mostly it just feels like my head is stuffed with cotton.  My joints feel like they are made of steel wool.  Sometimes they ache so much they wake me up.  Sometimes shooting pains go through my bones.  My muscles feel burnt.  They're weak.  My brain isn't working like it used to.  I struggle to focus...

I do what I can and then I try to ignore it.  Sometimes I can, others...  well, it's persistent.  So I find myself in the deep pit of darkness at times dealing with it.

Anger led to contemplation, frustration to gumption.

If crisis means opportunity...

I've been working all this out with movement.  Bellydancing to Fever Ray.


  1. I wrote this a few days ago but didn't post. I'm happy to report that the head is feeling better - for now...maybe if I'm lucky, for good. Will keep posted...

  2. Brother. I am so sorry to hear about this development (Lyme)in your life..I will be sending up thoughts and prayers for you, dear one. I'm sure you have the books already; but you know there are several very good ones on herbalism. Sounds like you are doing all the right things..
    Love you! --Sidney

  3. Thanks Sidney! I have Buhner's book and one on MCM by Zhang. Are there others specifically on Lyme you know about? Btw, my head has been feeling better; mostly it seems to be in my joints...am going to acupuncturist tomorrow...