Growing wings

May 23 10:30 pm
I can hardly stand it, I feel as if my back is going to rip apart on the flanks and grow wings - at least that is what it feels like. I know this is part of the Herx reaction so it is all good - but ....whew ...this can be tough.

May 24 12:57 pm
Wow ... I am not horizontal in bed or on the couch for the moment and I might even try to do a tiny bit of painting. Right now my back is alright so maybe I have popped my wings, I have just a bit more than minimal energy. This is a big improvement!

Starting to Herx

I got my picc-line last week and am starting to get use to giving myself the infusions and see what my limitations are. I am giving myself a little down time for the moment so I can try to heal.

I have been having the Herx reaction (which is what I expected). I have energy from about 7-11am - then I am down for the count. This totally sucks, I have plans of what I am going to do for the day, thinking that I am going into the studio ....but I never seem to make it....I am lucky if I can take my meds, take a shower without getting the bandages wet, wash the dishes, light house keeping, then I am down for the count again.

I figured this was going to happen and that was why I wanted give myself a couple of weeks, and see how the die-off goes before I made new commitments. One minute I am fine, usually from 7-11am I am thinking no big deal - I can take on the world, but at 11:30 everything changes, meaning headaches, large muscle and joint pain, fatigue etc - this is all a good sign, the IV meds are doing their job. The problem with the Herx, is that it goes in cycles every 3-4 weeks and the reaction can last 1-3 weeks itself, when I was really bad in Nov / Dec I had more bad days than good.

Many people once the start reciveing treatment for Lymes (oral or IV) want to stop the treatment due to the fact that the healing process is so tough the herx reaction brings back many of the original symptoms, is also called the Healing Crisis and the trick is not to give up. " Herxing" events have even been likened to an "exorcism" that is "a necessary evil to be endured."
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Wow - it has been 3 1/2 weeks since I have started the IV therapy ..and I really feel horrible . I thought this Herx reaction would be only for a couple of days but from my last ones knew this could happen.

I go between wondering if I am just lazy or really not feeling well, I can't make it off the couch and am sleeping alot again. Mom just called and was complaining about the 90 degree heat, I told her I am wearing a down vest and am using a down blanket....well I guess that answers my question.

May 19 - today is a good day, I actually did a little painting - I am trying to find me again.

The Herx reaction
Herxing

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

Lyme symptoms

Head & face
Headache, migraine
Pressure in the head
Tingling of nose, cheek, face
Flushing
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
Sinusitis
Hoarseness or vocal cord problems
Increase in allergy symptoms
Change in smell, taste; smell or taste hallucinations
Unexplained hair loss

Eyes
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"

Ears
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
Cough
Bronchitis
Chest pain or rib soreness
Night sweats, unexplained chills
Heart palpitations, extra beats or pulse skips (arrhythmia)
Heart blockage, murmur, valve prolapsed, heart attack
Stroke
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
Seizures
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
Agitation
Anxiety, panic attacks
Depression
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
Depersonalization
Increased suspiciousness, paranoia
Hallucinations
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
Endometriosis
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)

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!

My best friend has it too

Just to let you know how prevalent Lymes is, to our surprise I just found out today that my best friend also has Lymes. She was bitten by a tick in December and at that time she described it as black tick with a red hale low around it's rump, I told her that sounded lick the deer tick and told her some of the symptoms to watch out for the next month.

About 2 week later she started with a little nausea, sore throat, sinus problems then fatigue, and she felt as if she had a little cold but it didn't seem to go away. She sounded congested but then it started to hit her jaw, ear, then having slight headaches. She went to the doctors they didn't give it much merit, after watching everything I have gone through and listing to what I have said about the disease she insisted on starting a short coarse of antibiotics - just in case. I then took her to my doctor where she explained her symptoms, they decide to test her through Igenex.

Since so many tests come back with false negative results a short coarse of antibiotics can really help before testing. The antibiotics create a die off which then shows up much better during testing. If you have a negative Lymes test but still have symptoms retesting after a coarse of antibiotics is helpful and may give you different results.

Chronic Lyme Disease does exhist

The Infectious Disease Society’s (IDSA) is trying to say that there is no such thing as Chronic Lyme Disease. This would allow Insurance companies to refuse to pay for treatment of people with Lyme Disease after 30 days.

Please take a Minute and sign this Petition!!
Lyme Disease Association