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

Reappearing, crusty light brown/red rash on forehead between eyes- slightly painful and slightly itchy (pic)

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

Skin tags

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 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


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 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.


Part 2

Part 3