Chronic Lyme Disease &
Tick Borne Disease Symptoms List
Parts 1of 3
Note- Patient was ill for more than thirty years from Lyme and multiple tick borne infections and kept track of some of the presenting and progressing symptoms. (Posted with permission of the patient.)
SKIN and Lyme ACA Skin Presentations
Itching, extra dry or oily patches
Bumps- unexplained, just under the skin surface
Varying shades of red patches on ear lobes
Rash acrodermatitis chronica atrophicans (ACA) on left foot and ankle
Rash ACA on right foot and ankle
Rash ACA on right hand and up right arm almost to elbow
Rash bumps (white calcium (?), here and gone later) under top layer of skin near ACA areas
Rash white bumps on chest along breast bone and below
Blue, yellow, green discoloration on palms of hands
Blue, green discoloration on ankles and lower legs
Pink, yellow and blue discoloration on feet and lower legs
Pink knuckles and hands
White shinny fingers with abnormal swelling
White shinny feet with swelling
Fish net rash on lower legs
Fish net purple/blue rash on thighs
Fish net rash (pink and purple) on breasts
Lyme rash reappeared (ECM/ACA) on breast/stomach/side above rib cage (up to 10 inches)
Smaller ECM (up to 5 inches) on left side ribs reappear (bright red, raised, warm, slightly scaly, well defined edges)
Pinkish rash which looks like tiny spider webs but it is underneath the upper skin layer
Pink rash across butt looks like a faded bulls eye rash
Bruising easily and/or lots of bruises with no explanation
Bright purple/red thumb print sized (almost looks like blood) spot appears on chin just below the center of bottom lip.
White blister-like bumps on palms of hands
Hands turning bright red all over, mostly on palms
White scaly patches on elbows and running down the forearm along bones
Multiple red rashes on arms and across belly the size of a silver dollar, slightly raised, slightly warm
Veins coming to the surface with blue and pink tinting around them and what appears to be blue pools of blood
Cancer Diagnosis- Multiple Times
1. Diagnosed with breast cancer due to "lumps" seen on mammogram. Ignored radiologist and I insisted it must be related to Lyme. He told me I'd be dead within two years if I didn't do what he said. 25 years later- I guess he was wrong- but the trauma of going through the experience took a lot out of me.
2. Twenty eight years later was diagnosed with a rare form of breast cancer that, according to the NIH literature required immediate surgery- a double mastectomy- and chemo and radiation. Survival rate was only 20% at the one year mark if treatment was immediate and complete. Given RX's, tests to do, lab slips and went home. Decided to not put my weakened, infected self through all that and tossed the paperwork and prescriptions in a file. Told absolutely no one about it, held it all in and thought about it constantly, and prepared for the end. At the one year mark I was still alive and have since been trying to forget about it. Obviously they were wrong too.
3. Diagnosed with colon cancer about 3 months after the one year mark of the second breast cancer scare, just out of the blue. Doctor had no tests to indicate cancer or anything else, and I had no symptoms to indicate there was a problem. I even checked to see if he had the wrong chart because he seemed so off-base. Finally, after the worry and scare ate at me long enough I decided I just had to try to forget it and wrote him up as another nit-wit.
4. Diagnosed with uterine cancer. Doctor claimed I had a tumor the size of a grapefruit and ruled out everything else. After spending weeks horribly upset because I'd been very ill and had not been diagnosed with Lyme yet, I was told by another doctor that my uterus was "tipped backward" and there was no tumor. The first doctor was wrong. He put me through the worst scare of my life.
5. Diagnosed with bone cancer- tumor picked up on dental x-ray and doc was sure it was cancer. Tumor was eventually removed with surgery and was not cancerous. The waiting to find out yes or no nearly killed me.
6. Diagnosed with cancer because of a large (size of 1/2 an orange) cyst on my shoulder. One doc said cancer, another said not cancer (they didn't think), another said cancer- surgery immediately, another said no cancer and don't worry about it. Finally had surgery to remove it. It was not cancer, but it grew back.
7. Diagnosed with ovarian cancer. Woke up one morning out of a deep sleep with severe pain in my belly/chest area and had trouble breathing. Went to doctor (on way to ER, but stopped at docs office first). Tests showed there was a 19 pound tumor growing in/on my ovary that had gotten so large it was pressing against my rib cage and hindering my breathing. Refused chemo and radiation, only agreeing to surgery so I could breath and reduce pain. Refused a total hysterectomy so surgery went through belly to remove tumor. Excellent doctor. Recovered without incidence. Tumor proved to be not malignant.
MUSCLE PAIN IN BODY
Muscle pain or spasms/cramps in head
Muscle pain or spasms/cramps in neck or very stiff neck
Muscle pain or cramps in upper back
Muscle pain or cramps in low back
Muscle pain and/or cramps in lower arms or upper arms
Patches of burning pain along outer sides of legs- very painful
Inside of knees- soreness and pain- too tender to put knees together
Connective tissue pain or soreness in arms
Connective tissue pain in legs
Connective tissue pain in trunk
Elbows, above and below, painful and very tender
Blisters and peeling skin where clothes rub against body (pants on knees, long sleeved shirts on elbows)
Red bumps scattered at various times- disappear on their own
Delayed response to external temperature changes. Example: After being in very hot weather no reaction to the heat, then after 20 minutes in air conditioning start sweating as if THEN it is an appropriate time to do so.
Fever noticed- relapsing
Lower body temperature generally- 96 degree range is normal now
Cold hands and freezing feet in a warm environment
Night sweats- drenching
Day sweats- drenching
Inordinate amounts of sweating- pouring fluid
Sweating on left OR right side only
Mini-sweats on face and upper body only
Feeling the cold once out of the cold environment- delayed reaction- 20 minutes normally
Top 1/2 body (head to toe) very cold while laying on left side
Top 1/2 body (head to toe) very hot while laying on right side
Sudden rise in temperature- high fevers- fluctuating up and down
NUMBNESS, TINGLING, PAIN
Extreme sensitivity- Can’t lay on wrinkled sheets without it being very painful and feeling like I’m being bruised by laying on rocks. Princess and the pea syndrome?
Need pillows between legs, knees, and ankles so they won’t touch at night, and under my arm so it won’t rest against body and cause a lot of pain
Wicked buzzing/tingling all over body, sporadically
Lower arm hurts where arm isn’t (Phantom pain?)
Pain in right and left sides just below rib cage, tingling and burning, very severe at times
Entire rib cage pain (severe) - the tissues in between the ribs burning like on fire
Neurological pain (burning hot “cheesecloth” pattern pain) along left trunk, outside of left leg, left side of face and neck, left rib cage, left shoulder and left arm- sometimes switches to right side- then later back to left side
Painful to touch skin anywhere, can’t put on clothing without pain if it touches body
Face numb on left side and won’t move properly or react. Droops on either side at various times. Right side won’t react to movement commands.
Lower lip numbness and tingling...like numb with Novocain
Left side of face numb and tingling- annoying and painful
V-shaped crushing pain from both ears to back of lower neck
Knots in muscles along both arms and legs..too tender to touch even lightly
Knees tender and stiff or sharp pain in the back knees
Creaking pain and tightness in knees as if they are stuck or locked in a certain position and need oil to loosen them up.
Numbness in arms, right or left, or both
Tingling in elbows- right or left- like funny bone has gotten “stuck” in a bad place
Stabbing pains random, sharp, violent, sudden
Pinprick pains, random
Twitching of facial muscles, eyelids and eyes
Tingling and sharp pain in the nose (usually one sided), cheek, ears, or face
Drawing up of arms towards chest- as if they are locked in that position
Tendonitis type pain in and around elbows, wrists
Pain in elbows (one at a time or both) that feels like someone has drilled a hole through them and set them on fire
Pain in elbow(s) and or knee(s) for 5 days or so- then the upper layers of skin feel like they are separating from the lower layers. It fills with fluid in between the layers then the upper layers peel off like a large blister had been there.
Large patch of fluid filled skin (?) on left side under my arm and down across rib cage- very tender to touch- and mushy with fluid
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.
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
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.
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.