Chronic Lyme & Tick Borne Disease Symptoms
Part 1- https://sites.google.com/view/symptoms-of-lyme/chronic-lyme-symptoms-example?authuser=0
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 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
TEMPERATURE
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
SWELLING
Feels like a balloon is in my skull instead of a brain. Seems to feel swollen and “bulging” and as if it pushes my head bones from the inside and there are bubbles trying to pop out but they can’t
Swollen jaw and sinus area on right with extreme pain. Hurts to touch even lightly
Swelling and pain behind the ears, mostly right side
Jaw bone areas swell with fluid pouches and feel raw
Super tight bathing cap feeling across entire head causing tight, skull crushing headaches
Swollen foot- elephant size...not normal edema... so bad that toes disappear in swelling
Legs swell from knees down and turn very white
Ankles and feet swell
Nothing swells and feet turn very white with a bluish tint in places
One arm ice cold and tingling or numb- especially right upper arm on the back side.. other arm not as cold and numb, sometimes even warm while other one is cold
FATIGUE/TIRED
Weak and unable to stay up for more than 2 hours at a time
Extreme weakness in body
Hard to hold head upright- no neck strength
Moving around means going from one chair to the next before exhausted and having to sit down
Can’t seem to catch breath
Part 1- https://sites.google.com/view/symptoms-of-lyme/chronic-lyme-symptoms-example?authuser=0
Last Updated- April 2019
Lucy Barnes