Tuesday, April 28, 2009

Got the picc-line today

Finally had the IV picc-line today April 28 2009. I was so not looking forward to this but since no improvement in my CD57 numbers I finally felt resolved and went through with it. The toughest part up until now is the emotional roller coaster, were on then off, thinking I was doing better and finding that I wasn't really. Since my CD57 numbers did not improve there were not many other options for improvement, I could have opted for the painful injections but after talking to many nurses they all suggested a picc-line would be best and less painful.

Emotionally it is pretty hard not to be freaked out, imagining a line is going into a vein on your arm then threaded through your chest into a main vein just above your heart. The advantage of having the rocepcephin administered this way is that I will benefit 100% from the antibiotics instead of only partial absorption. 12 hours old - so far so good

The procedure was done in ICU, everything was sterile, I had a GREAT nurse (Val) she studied at Stanford and now teaches other nurses how to apply picc- lines. The only thing I felt was the Linacane to numb the area, it was no different than having my other IV's with the advantage of this one being much more effective. The hardest thing about this was the emotions leading up to it and the unknown limitations, how to take a shower, how much time would be involved taking all of my other drugs along with this IV, fear of infection etc.

After it was done I felt like I was released from a leash and since I feel so good I just have to remember I do have limitations and there is quite possible an upcoming Herx reaction. Meaning a die off of the bacteria that can make you feel horrible. But today is good and if anyone else is in fear about having one of these, it is not as bad as it has been built up to be. - (so far)

Picc-line information

Saturday, April 11, 2009

Lyme symptoms

Head & face
Headache, migraine
Pressure in the head
Tingling of nose, cheek, face
Twitching of facial or other muscles (motor tics)
Jaw pain or stiffness (TMJ-like problems)
Difficulty chewing, swallowing, speaking
Facial paralysis (Bell's palsy)
Sore throat, swollen glands, phlegm
Runny nose
Hoarseness or vocal cord problems
Increase in allergy symptoms
Change in smell, taste; smell or taste hallucinations
Unexplained hair loss

Double or blurry vision
Oversensitivity to light
Floaters, spots, flashing lights
Phantom images in corner of eyes
Decreased perception of light or color
Vision changes incl. blindness, retinal damage, optic atrophy
Eye pain
Wandering or lazy eye
Drooping eyelid
Swelling around eyes
Red eyes
Conjunctivitis or "pink eye"

Decreased hearing
Plugged ears
Pain in ears
Ringing, buzzing, tinnitus
Oversensitivity to sounds

Digestive & excretory systems
Diarrhea or constipation
Upset stomach (nausea, vomiting, pain)
GERD (gastroesophageal reflux disease/acid reflux)
Irritable bladder (trouble starting or stopping)
Unexplained weight gain or loss
Loss of appetite

Musculoskeletal system
Bone pain, joint pain, joint swelling, or stiffness
Shifting joint pains
Carpal tunnel syndrome, tennis elbow
Neck is stiff, painful, creaks or cracks
Muscle pain or cramps (fibromyalgia)
Burning sensation in feet
Shin splints
Plantar fasciitis
Drooping shoulders
Poor muscle coordination
Muscle weakness
Loss of muscle tone

Respiratory & circulatory systems
Shortness of breath, can't get full/satisfying breath
Chest pain or rib soreness
Night sweats, unexplained chills
Heart palpitations, extra beats or pulse skips (arrhythmia)
Heart blockage, murmur, valve prolapsed, heart attack
Swelling or enlargement of heart
Diminished exercise tolerance

Neurologic system
Burning or stabbing sensations in the body
Peripheral neuropathy
or partial paralysis
Weakness or paralysis of limbs
Tremors or unexplained shaking
Loss of reflexes
White matter lesions
Numbness, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Light-headedness, wooziness, brain fog, fainting
Meningitis (inflammation of the protective membrane around the brain)
Encephalopathy (cognitive impairment from brain involvement)
Encephalomyelitis (inflammation of the brain and spinal cord)

Psychological well-being
Mood swings, irritability
Anxiety, panic attacks
Overemotional reactions, crying easily
Disorientation: getting lost or going to the wrong place
Aggressive behaviour or impulse violence
Obsessive-compulsive behaviour
Bipolar disorder, manic episodes
Schizophrenic-like states
Personality changes
Increased suspiciousness, paranoia
Suicidal thoughts
Feeling as if you are losing your mind
Eating disorders, anorexia
Difficulty falling or staying asleep, too much sleep, or insomnia

Cognitive symptoms
Forgetfulness, memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration, reading, or spelling
Word retrieval problems (can't remember words, stop at mid-sentence)
Dyslexia-type reversals, difficulty with writing
Problems with numbers
Difficulty with speech (slowed, slurred or stammering)
Forgetting how to perform simple task
Attention deficit problems, distractibility
Difficulty with organization and planning
Difficulty with multitasking
Slowed speed of processing
Poor school or work performance

Reproduction & sexuality
Loss of sex drive
Sexual dysfunction
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge
Extreme PMS symptoms
Miscarriage, stillbirth, premature birth, neonatal death, congenital Lyme disease (passes from mother to foetus)
Testicular or pelvic pain

General well-being
Extreme fatigue, tiredness, exhaustion, poor stamina (Chronic Fatigue Syndrome)
Unexplained fevers (high or low grade)
Low body temperature
Narcolepsy, sleep apnea
Swollen glands, swollen/painful lymph nodes
Continual infections (sinus, kidney, bladder, eye, ear, etc.)
Chemical sensitivities
Symptoms seem to change, come and go; pain migrates to different body parts
Early on, experienced a "flu-like" illness, possibly not feeling well since
Exaggerated symptoms or worse hangover from alcohol
Increased motion sickness
Decreased interest in play (children)

Skin problems
Livedo reticularis
Benign tumor-like nodules
Acrodermatitis Chronica Atrophicans
Erethyma Migrans (rash)

Other organ problems
Liver inflammation
Enlarged or tender spleen
Dysfunction of the thyroid (under or over active)
Bladder & kidney problems (including bed wetting)

Friday, April 10, 2009

Got the IV appoinment

I am on a break with the Ceftin for about 6 weeks trying to wake up the limes again, so we can then blast them with IV antibiotics. Don't know how long that will last - at the minimum 2 months but more likely 4-6 months. I'm still on the Azithro and Mepron for the coinfection while on the brake. Got a call yesterday that they weren't going to schedule my IV do to not having enough picc nurses in the county. Got another call today have an appointment for the IV on the 28 what a roller coaster, one minute upset not having an appointment the next the reality of it happening and just wanting to break. Humor is what keeps me going, I found when talking to someone that is unreasonable just say picc line and they run away how amazing is that!