Chronic Lyme Disease
Chronic Lyme Disease
Patient's Symptoms
Patient's Symptoms
CONTINUED- Part 2
CONTINUED- Part 2
HEAD/NECK PAINS
Every few weeks to a month the brain swells – bad headache- lasting many days or longer
Face droops on one side, on/off- right or left or both sides
Bones in neck make a dry clunking sound if and when muscles give out, especially on the left side deep into the chest area
Neck swollen and tight/hard and very painful
Can’t turn head from side to side without a lot of pain, and it gets stuck and won’t turn
Hard or impossible to lay ear down towards shoulder- neck locked
Crushing pain in head in the outer layer of skin and just below it
Squeezing pain in head- feels like the 2nd layer inward is screaming and painful
Hard knots along the base of skull- right or left side or both
Twisted and pinched muscles on head- so tight they feel like a taught banjo string
Tender or sore spots on head (often in the top center area)- VERY painful
Bulging on top of my head in “soft spot” area- like a balloon is in there and is on fire
Hard tight knots on skull- above jaws and ears
Ice pick in the ear sensation- very sharp stabbing pain
Description of headaches- I get headaches, and the list is long, from lack of Progesterone- they are the worst. It took me years to figure out what was causing them. I use natural progesterone cream (at one time a capsule because I was so deficient) to combat these headaches. Dixie Health makes the best transdermal cream.
I get headaches when my Babesia acts up, which is pretty much all the time. Only treating (Mepron) helps knock them down. They are more like a pressure (bathing cap) feeling. I don't like the Babesia herxes- and that makes me much worse cause I can't detox, so I rarely treat.
I get headaches from TMJ and jaw/teeth problems from the Lyme arthritis. Ibuprofen (800 mg) helps some, but not all the time.
I get headaches almost daily due to sinuses for which I take sudafed, which also helps drain fluid so my head isn't so swollen.
I also get headaches from a smouldering Lyme encephalopathy. When at their worst, they cause the soft spot on the top of my head to hurt like the dickens and my whole head feels like it is swelling so much it will burst. I hurt around my ears and neck- even the pressure of wearing a barrett in my hair feels like I have been hit with a hammer, and my glasses feel like they weight a ton and pinch me and cause indentations above my ears cause my head actually is swelling- bulging.
Then there are the eye problems. Don't know if they are causing headaches, but tossing it in here now just for fun!
Then there is my neck, bones and muscle spasms, and needing a chiropractic adjustment. That helps a lot, but I've not been able to go for a long time.
UNCONTROLLED MOVEMENTS
Whole body feels numb or disconnected from brain and there is no pain during that time
Tremble (mild to severe) if trying to move faster than a snails pace.. an internal type of trembling
Vibrating feeling in the head and back of neck as if a jack hammer were there
“Jolts” of something (feels like lightening) which thrashes body upwards and wakes me out of a deep resting state, usually just as I am falling asleep
Poor balance, or tipping over sideways for no apparent reason
If closing eyes or lights go out I fall over or fall to the floor in a pile- not knowing which way is up or down
Leg thrashing or jumping for no reason- sometimes with pain
Loss of coordination- like swimming with all limbs
Clumsiness, stumbling, running into walls- especially hitting door ways going through them
SLEEP PATTERNS
Late to bed because I can’t sleep
Sleep too long once asleep
Waking too soon
Waking up repeatedly at night for no reason
Feel drugged or paralyzed upon waking and can’t move my body. Need to lay in bed until movement returns- sometimes for an hour or more- sometimes for two hours.
Don’t feel rested after sleeping
Two hour minimum of the “dead brain” feeling upon wakening. Not able to think clearly or remember things.
Sleeping strange hours and not being able to sleep “normal hours” Sleeping usually 4-5 am till 9-10 am.
Napping in the daytime- overwhelming exhaustion hits.
Totally exhausted feeling, day in and day out.
Feeling some energy for a few hours- then suddenly it feels like the energy door closed and I am drained totally.
Insomnia
Complete reversal of internal clock. Sleep during the daytime and awake at night- for years at a time. Nothing helps reverse it.
Head gets super hot while laying on pillow.
Chest cavity feels crushed when laying on one side. Feels as if the chest and contents detach from what normally hold it together and contents drop to lower side as if gravity made the contents move.
A lot of wild dreams- frightening dreams sometimes.
A lot of arm and leg movement when sleeping, so violent it wakes me up.
Wicked Charlie Horses in legs when sleeping that wake me and make me get out of bed to walk to release spasms.
Once awakened from sleep can not go back to sleep- allowing only a few hours of sleep a night.
Laying for over an hour in bed and just can't fall asleep. Try again later to sleep and same thing happens.
Talking in sleep. Been told some of it is total gibberish as if in a foreign tongue.
Waking up with music running through head over and over as clear as if it were playing somewhere.
SPEECH
Stammering speech
Slurring speech
Open mouth to speak- no words come out as if they were lost somewhere.
Can’t follow more than one person talking to me, or me trying to talk to more than one person at a time.
Mouth does not co-ordinate with words
Refusal to speak because it is too difficult at the time.
Big delay from having question asked and responding to it. Have to think of an answer or possible answers and see a picture, then describe the picture.
Lose track of thoughts while speaking, often in mid-sentence.
Can’t understand simple questions and sound stupid or as if I am lying trying to give answers.
Not knowing if answers are appropriate to questions asked when done responding.
Forget what I am saying or thinking about in mid-sentence and can’t recall it at all.
MEMORY AND COGNITIVE
Long term memory loss- noticed more things missing from past things I have done
Short term memory loss noticed more or less problems
Problems with numbers and sequencing them or counting
Can’t remember my phone number
Can’t remember phone numbers or addresses of regular people I call or write
Can’t remember how old I am
Don’t know the date.. month, day, or year.. at any given time
Forget to check mail for more than one week at a time
Forget list to go to the store. If I take it I forget to bring it in the store.
Get so I don’t know where I am and have to really try hard to figure it out
Forget where vehicle is parked or what door I went in- totally unfamiliar
Lock keys in the car more than 8 out of ten times
Forget to take shoes or necessary items in the car when going out somewhere
Forget coat, sweater, or clothing when going out.
Get to town and forget why I’m there. There is a long re-orienting time to get the job at hand completed
Can’t go from here to there without starting from a familiar place (must go the long way or start from scratch to think how to get somewhere)
Rambling on in great detail while talking and skipping around subjects- like there is no control
Short attention span while doing things and wandering off task
Short or no attention span while listening or trying to read
Agitated at others while they speak, for no reason except that I have to listen to them. Listening is difficult because I must try to absorb everything that is said, mix it up so I can understand it in my own way, then try to find a spot to “store” it so I can respond. All the trying in the world doesn’t help the situation a lot of the time.
Part 1- https://sites.google.com/view/symptoms-of-lyme/chronic-lyme-symptoms-example?authuser=0
Last Updated- April 2019
Lucy Barnes