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Chronic Lyme Symptom List

Chronic Lyme & Tick Borne Disease Symptoms

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 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


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.


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.


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.


What meds are you taking?

How long before herx?

Worse than last herx?

Fever or chills?

Depression, wimpy, whiny?

Sleep more or rest more?

More pain and where?

Problems that were the worst?

How long did it last?

Did anything help it?

Any functioning during herx or bed/home bound?

Did you stop medications at all or back off?

Allergic reaction to any meds?


Bladder hesitancy

Bladder frequency

Loss of bladder awareness

Urinary retention

Incontinence, dribble

Symptoms of UTI

Blood in urine- visible- or by test

Dark colored urine- like cola

Dark colored urine- like strawberry soda

Urine foamy- like soapy

Strong smell of ammonia in urine

Strong smell of urine


PMS symptoms exaggerated- ver much so.

Early menopause symptoms that lasted for years.


Irregular time, early or late

Irregular amount of flow- flooding


Disturbed estrogen and/or progesterone levels

Loss of sex drive


Moodiness, wimpy, whiny

Missed periods

Flooding 10 days to 14 days

Flooding month round- non-stop for months to years

Very high estrogen levels, very low progesterone.


Pain in stomach or intestines

Abdominal bloating

Abdominal pain and cramping. like perhaps ulcer pain

Nausea, gagging


Spastic and painful colon and muscles inside colon painful

Colon spasms- pain strong enough to wake me up from sleep

Stomach acid reflux- burning

Indigestion and burning not caused by food

Loss of day time appetite

Every few weeks vomiting spells with headaches for a week or more

Eating barely anything for days- then like a light bulb went off- I feel starved and eat anything and everything around me


Photosensitivity to certain kinds of light, such as: 

A.  Flickering light by fluorescent lights- causing seizures, panic attacks, misery, violent behavior, craziness, crying, or other inappropriate responses

B.  TV or computer screens sensitivity to where I can’t watch or use them

C.  Headlights of oncoming cars or shining reflective lights hurt eyes and confuse me

D.  Halo’s around lights, especially headlights, and reflective street signs

E.  Moon- see double or triple moons

Swelling around eyes and eye lids

Eyes water for no reason and light makes them water more and hurt 

Blurry vision

Double vision

Floaters- triangle shaped or rectangled shapes- dark box with dots inside on clear background- white, silver or black colors  

Yellowish, greenish, or white discharge from eyes 

Eye pain

Eyes aching

Eyes itchy

Eyes burning

Foggy covering over eyes

Can’t focus far to near or back again- sometimes all day long

Like looking through a white film over everything I see

Left eye can’t turn to the left

Dark circles (sometimes purple) under eyes and swelling or puffy   

Black eyes

Purple/black eyes with yellow skin on the inside corners

Black eyes with blister-like bumps at edges

Transient blindness or blind spots in center of vision

Sensations that the light is fading out or getting dull

Argyll-Robertson pupil- left side

Unequal pupils

Pupils don’t close together at the same time

Sunlight hurting eyes to the point of pain, tears, dizziness, and nausea


Blood pressure too high or low  (max and min- 240/140 high to 40/nothing)

Irregular heart beat or skipping beats

Fast pulse, weak, thready

Thudding or thumping heart beats here and there, especially laying down at night

Squeezing chest pain or like someone is standing on my ribs feeling

Like bra is too tight feeling

Skipping beats or dancing

Heart beats hard and thuds with light activity

Fluttering fast heart while laying down at night or while trying to get up in the morning- like heart is trembling

Must move by holding onto things and only from chair to chair and heart is acting up


Food allergies from leaky gut- different ones- any better/worse

Sinusitis and clogged up

Postnasal drip- constant

Allergic or chemical hypersensitivity's problems

Soaps, gas, fumes, pine trees, perfumes, new car interior, new clothes smell, candles, etc make me feel very sick

Overly dry sinuses

Very thick and sticky phlegm (clear).


Hair loss in circle patches or general thinning

Hair growing faster than normal

Fingernails break easily and lose strength

Fingernails growing fast and strong

Body hair growing faster or slower



Ice pick type pain in one ear or the other

Jaw pain like a severe tooth ache

Clenching teeth day or night or both 

Jaw popping out of joint

Jaw overlapping at joint

Jaw pain R or L

Tooth pain- upper- lower- right- left

Lip numbness or tingling or half of lip numb

Tongue- loss of strength or movement- paralyzed on one side

Difficulty swallowing or chewing food or liquids- choking often

Gums swelling and fluid filled pouches along bones and gums

Ear and face pain from jaws hurting

Continual accidental biting of tongue (ver hard) when talking or trying to chew

Jaw bones pop out of joint and that hurts


Water on the knees, swelling, or knee pain

Bone pain anywhere (especially very tender shins, arm bones, leg bones)

Gout-like pain in toe- sharp stabbing pain

Dislocating shoulders without reason other than from muscle spasms

Pain in hip bones (pelvis bones and edges) and tender to touch

Sharp pain in tailbone when trying to sit

Feels like one hip is fused with the other.. not two separate ones

Swelling over the bones in elbows

Arthritis pain in joints

Fluid filled lump at the base of my tailbone- size of a golf ball- eventually breaks open and drains internally.

Very painful shin splints- not just in front, but sometimes on outsides of calves, inside calves or in the back of lower legs.  Too painful to walk for weeks at a time.  Repeated episodes.


Swollen glands in neck or behind or below ears

Swollen lymph nodes and extremely tender along breast bone

Swollen nodes in groin area

Swelling nodes in groin and infected/draining

Swollen nodes in arm pits                                    

Other swollen lymph nodes/glands

Swollen, puffy, painful spleen. (Yes, I CAN tell Dr. Dummy- had it before several times)

Kidney pain on either side


Light cough

Pressure in upper chest, below the center of  the neck.  In upper sternum and across, from shoulder to shoulder.

Noticing VERY shallow breaths, like I am hibernating

Difficulty breathing.  Shortness of breath feeling, like not getting enough air when I breath.

Feeling like diaphragm is not wanting to move on its own

Hyperventilating spells if sitting or standing upright that are severe enough to seek medical assistance

Shortness of breath- panting

Rib soreness and pain or muscle spasms

Burning pain between ribs.  VERY painful making entire rib cage hurt badly.

Feeling as if I have to remind myself to breathe.  Many episodes of it.  Very scary. 

Ribs twisted out of place from muscle spasms or inflammation and they become very painful.  Like a stabbing pain.

Rib muscles spasm and shift ribs out of place so they overlap each other.  They also twist out of place along the sternum causing sharp pain when ribs meet sternum.



ALL noise startling and annoying to the point of maddening 

When phone rings I jump, badly startled

Ringing in ears

Buzzing in one or both ears

Pain in and behind right ear.  If I lightly pull on the outside of my ear- something breaks loose and drains inside my head.  Like ice pick pain accompanies it- shooting and stabbing.  Extremely bad pain.

Off balance- walking sideways when trying to go straight and legs crossing over each other instead of moving forward

Can’t watch TV or understand it or I don’t have the attention span to follow it

Strain to see TV and it hurts eyes and/or ears

Furnace running and refrigerator humming noise sounds very loud and makes me lose focus and be unable to think right

Can tell music is on, hear it, but don’t “absorb” it.  Sounds like annoying noise sometimes.

Can’t listen to the pitches in women’s voices sometimes without wanting to scream

Voices sound faint or distant or muffled

Can’t pick up voices if there is any background noise

Hypersensitivity to sounds

Noises are loud and echoing

Loss of hearing and must have things turned way up to hear them.

Use of phone causes ears to turn red and burn badly

If wind blowing across ear (like window down driving in car) it makes me very ill.


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


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


“Instant” memory problem, forget in the middle of something

Do not think of things in advance of doing something that would be normal to most

Run into walls or doorways, misjudge spaces and distances

Tip or fall over while walking or standing

Misjudge distances to place items on something 

Get distracted and wander away from tasks- and start new tasks

Repeatedly bumping into things with the left side of the body

Dropping things from hands for no reason

Forget something is being carried in my hand till hand is needed again for something else

Lost in my own neighborhood area or going to wrong places when I know better   

Distraction or loss of focusing- the “duh” attacks 

Feels like I have to tell my arms to move when I need them to do something or reach out

Feels like I need to tell my legs to move and in what direction to be able to walk

Delay in “thinking... and then doing”- Slow response time

Not recognizing that colors are all around... only seeing shades of black, gray, and white

Seeing a color totally different than the actual color- (see green phone and it appears purple)  

Not seeing 3 dimensional, things appears flat, or one sided

Ground feels like it is moving, rippling, swaying- or like I am walking on a boat

Words on written page look like this :   word   (The end of the word looks like the print is smaller than the beginning)

Words sway or bulge out from the page and wave up and down or move on the page

Problem with multiple concepts or doing two things at once

Inappropriate words.. say “pink” when looking at a “blue” object

Inappropriate words when speaking- like saying tomorrow instead of yesterday

Saying words messed up, like Sountain Foda

Personality changes- better or worse

Hostile for no reason or fits of nasties or yelling

Crying for no reason or too much

Handling stress poorly- stop the world I want to get off feelings

Saying numbers wrong or not being able to say/write the name of the number being seen

Word, letter, or number reversals when writing

Writing letters or numbers backwards

Abnormalities of taste

Abnormalities of smell

Heightened sensitivity to vibrations or movements

Sensations of falling forward or backwards

Walking with an unsteady gait, stopping to be balancing along on table edges, walls, etc

Walking stiff legged and like a monster or a severe waddle

Legs giving out while walking

Knee buckling for no reason

Emotional disaster days

Feeling apart from everything

Intrusive obsessive thoughts

Intrusive images or sounds

Trouble finding words needed to communicate

Trouble reading and understanding what was read

Feel like my mind is gone or going fast

Panic attacks

Obsessive- compulsive stuff

Severe anxiety

Constant anxiety

Objects seem distorted, side ways or misshaped

Can’t make a straight line and lines appear slanted when they are straight

Vivid nightmares or repetitive thoughts at bedtime

Hallucinations during the day

Loss of drive and “want to”

No imagination or “sparks”

Perceived alteration of limb size and shape- jumbo or tiny, long or short- circus mirror

Feeling like there is a delay between an event happening and knowing it happened

Feels as though time is standing still

Feels like there will be no future or “later”

No idea if I have responsibility of anything other than what is in my face at the time

Forget family exists unless they are there in front of me

Feels like sinking sensation as though legs (or car wheels) are beneath ground level

Feelings are dull and blunted

Capacity to experience most emotion is lost

Having to act as if playing a “part” to get something done

Ideas are in my mind but I see them from an outsiders view and deal with second person

Withdrawn and anti-social

Tunnel/corridor vision

Suicidal thoughts

Thoughts of wanting to quit

Thoughts of wanting to die but not have to kill myself and make a mess

No smiling or fun in my life

Fear that is not justified and blown out of proportion 


Fix food and forget to eat it

Miss meals totally because of forgetting

Very thirsty

Weight gain or loss

Chocolate, salt, sugar, or other cravings

Food restrictions

Tested and had developed 49 food allergies.  Before Lyme there were none.

Eat all day some days and barely at all other days- either very hungry or not at all hungry.


Yeast infection in mouth

Tongue splitting open

Not able to taste food or smell food

Vaginal yeast infection

Skin yeast infection


Sore or scratchy throat, especially one-sided

Voice changes while speaking

Voice is gone sometimes.

Hypoglycemia like feelings

Flip back to southern accent, especially when tired because I can’t control it.


Holding arm out to tune radio.. arm gets stuck.. tingly.. numb and painful.  Try to use the phone and arm and hand goes numb holding the phone even for a couple of minutes.

The toaster incident... Holding a small toaster that needed to be mounted to a section underneath upper cabinets.  Holding it for no more than 60 seconds at a time, maybe 3-4 times so it could be attached by someone.  Several hours later the muscles in my upper right chest felt as if they had been through a meat grinder and were bruised and had a mushy/swollen/bloated feeling.  Later neck spasms and off balance.  This is typical.. and happens often... but this incident explains it pretty well.  I try hard NOT to let this happen by not doing things I think will cause it.. but I can’t always tell.

Many days it is a major effort to cook an egg, or put ice in a cup and get a drink. 

The sandwich story:  I need several things from fridge to make a sandwich.  Instead of being able to go to fridge and get all the things (or several at one time).. I make one trip for mustard then go sit it down, one trip for cheese and go sit it down, one trip for bread and go sit it down, and one trip for meat and go sit it down.  (Weird I can say it and write it in logical form.. but when it comes to doing it.. it is all separate steps, one at a time.. and I don’t know why I can’t get that fixed or straight!)  

BUT.. putting away the stuff.. I pick up what I can carry in one trip that all go to fridge and put it all in during one trip.  That is, and comes naturally.. but NOT the getting stuff out!  It makes me crazy because I can see this.. but can’t FIX it.  If I must make two sandwiches.. I do the same thing!  One trip for this, one trip for that, etc.. get it all there.. 

Then make one sandwich at a time, step by step.. then start the second sandwich step by step.  I even complete the first sandwich, go get ONE plate and cut the sandwich... THEN start the second sandwich and finish it the go get another plate and cut that one.  And although I KNOW I do this and it is a waste of time and energy, and does NOT make sense and it makes me NUTS.. I do it EVERY time!  

This happens with many other things I try to do.. but making a sandwich is done more often.. and makes me not want to eat rather than go through this... and is more obvious to me than many of the other things I do.. so it drives me more crazy!

Same with spaghetti sauce.  I can tell you how to make it in about 60 seconds or so.  But trying to make it.. it is a big long drawn out mental nightmare.  I never think of making supper till I am very hungry or it is late.  Bad deal because most of it is frozen so I don’t eat right.  Duh..  I usually.. if alone...  eat one thing for a meal.. a can of green beans for example.. then I go back when that is gone and get a container of yogurt.  When that is done.. if I’m still hungry.. I get something else.

Drive with earplug in left ear or I get very ill.. unless pain prevents me from doing this..  Thought it had something to do with the wind from open window blowing across my ear and noises while window down???  Can’t drive more than about 10 miles most days without problems. When I get to where I am going I sit for a few minutes (up to 1/2 hour) in the car to “re-orient” myself to see what I was going to do, stop swaying, and plan the get out of the car procedure.. get keys, lists, cash, etc.  Can’t do it all right at one time to save me.  Keep 3 extra sets of keys outside vehicle because if I do lock it.. I forget keys are in it.  I lock my keys in the car at least 3 out of 5 times.

Lean on stuff to keep my balance or touch things with my hands as a guide so I don’t fall.  Must turn around slowly or carefully some days or I will fall.

Can’t sort easy things like silverware, socks, papers.. if I do try, it takes a long time.

Can’t do checkbook or write checks.  Don’t have an “understanding” of money.. sort of abstract???  $500.00 feels the same as $500,000,000.00. No real difference???  Cash seems to go fast.  Need money....  spend money.. no planning in advance ability or thoughts.. Mess up with that problem a lot and big time.

Stress/panic severe around several people at a time or while in a store...noises, lights, smells, colors, lots of people moving or talking... Also can’t keep straight with more than one on one conversation.. it is like torture.  So.. that limits parties/friends visiting.

Bridge cross bars.. or traffic cones.. I get a weird feeling, hard to describe.. like I am sinking and low to the ground.  As if the bottom of the car is at road level and my feet will start dragging the ground.

Mirrored walls makes me fall flat out or lose my balance.  Clear glass windows in a wall make me lose my balance/orientation. 

In a shower my balance is lost if printed designs are on the shower curtain.  Can’t stay in shower without getting panicky feeling.  Had to change to opening curtain.. then to solid white walls and curtain.

Upsetting for some reason to look at small patterned designs or stripes.  Get a “hyper” feeling or dizzy or both?

Venetian blinds and sunlight coming through them make me nauseated and/or disoriented.  Feel as if I will fall over.

Being cold, hot, hungry, etc. all make me feel bad in the same way.  No way to tell the difference unless I use a process of elimination.  Heat/cold not “felt” and body does not react appropriately to these conditions.  Internal thermometer “off”.

Shadows on the walls, especially ones that are moving, throw me off balance.  Or shadows on a road- like the tree shadows make me confused and panicky.

If the sun goes behind the clouds.. sort of dodododo dodododo freaky feeling.  I get spacy or something?

Right arm goes numb if held out forward.  Little finger and ring finger go numb first, and the back of my arm....

Barrettes hurt my head after a few minutes (bruised, mushy head, severe pain) and make muscles spasm and neck pull and messes me up for days.  Nickel in my back pocket feels as if I had a poker sticking me in that spot and then that leg cramps, then my back hurts, feet hurt, and muscles spasm begin all around that area.  Same with a belt, bra, anything touching my body.  I call it the princess and the pea syndrome.

Earrings make my ears feel as if they are on fire and lopsided.

“Stuff” needed all over the place or I feel lost.  Keep several of everything... to be sure I can find “one” of that item when needed. 

Keep anything that I could possibly need while out somewhere, in my vehicle.  If I don’t have those things I won’t go out.

I can drive vehicle with shift knob.. and am often holding onto it all the time to keep more level or balanced.  Difficult trying to drive an “automatic” vehicle... or any vehicle other than my own.

Use an ear plug in left ear and don’t remember to down shift gears when needed.. and I don’t know where the gears are located if I can’t hear.  That really doesn’t make sense???  I must use “hearing” as an “automatic” guide as to when and WHERE  to shift?

Forget to remove foot from above the clutch pedal for a long time after being on straight roadway. 

Now it really hurts and throws my elbow “out”.. dislocates it.. if shifting gears... Makes arm “rubbery feeling” and numb. 

Move in tiny mentally thought out steps- touching objects and touching the next item before releasing the first, as if they were connected. 

Will wander around with something in my hand until my hand and arm hurt with pain and spasm because I just forgot to put whatever I was holding onto, down.

No facial recognition.. no math skills.. cognitive testing.  Drop in IQ over 20 points?  Organic brain disorder is what it was called from the test results.  And dementia.  And mildly to moderately mentally retarded. 

I can remember words to songs better than most people... comes naturally.  Can’t remember events earlier in the day.  Must think hard to remember how to tie my shoes. 

Get discombobulated if “things” are done out of sequence.  There is a “way” to do things now.. before it was natural.  Now I must concentrate on doing the task in the right order.. or I have to start all over from the beginning.

Lurching forward feeling.  VERY unbalanced feelings.  Like I am going to fall over in the sink while doing the dishes.  I lean on the counter to stay upright and not tip over.

Vehicle seems to wave back and forth after being stopped and turned off.  It doesn’t really move, but I feel the wavy side-to-side motion.

No holding the pillow under my chin when changing pillow cases.  No strength to do that any more.

Burn myself just about every time I try to cook.  Getting REALLY tired of that.  And I burn the food too, which I rarely did prior to being sick.

Clenching steering wheel while driving.  Holding items in hand too hard and cramping hands and fingers.  It is as if pressure doesn’t have a limit or I don’t have any control over pressure I put forth?

Seem to be able to write fairly well with keyboard (slow but manageable).. but verbal is not good sometimes.  Takes lots of time to write and review and rewrite and focus.. but I can sometimes do it with enough time.  Can NOT write on demand or with any distractions at all.  Must be total quiet.

Must be quiet in the room when I am eating or I get distracted and will choke on my food.

Need at least 3 pairs of glasses for different distances and then 3 more for light/dark use.  Eye sight now down to 20/80.  It was 20/10 prior to all this.  Very “fuzzy” vision this past two weeks.  Can’t focus my eyes if even a tiny spot of dirt is on the windshield or on my glasses.  Keep window cleaner and towels in vehicle to constantly clean windshield.  My eyes will focus on the spot rather than what I am looking at... and then go back and forth.. like a camera while trying to focus on a close up flower and the background scene.  My eyes will zoom in and out and in and out... fuzzy close or fuzzy far away.. constantly moving.

If laying on my side I must sleep with a pillow between my knees and another one between my feet and ankles... or it feels as if there is a duckpin bowling ball sitting between my knees and a concrete block on top of the upper leg weighing it all down.  I must have another pillow under my upper arm and between it and my chest so they don’t touch or the same sensation happens.

I had to wear a sweater one day this week because it was cold.  Within a half hour I felt as if I had on a coat that weighed about 30 pounds... and I was about three feet tall due to the weight of the sweater pulling me towards the ground.  I also felt like the ground was coming up to meet me and/or I was walking an incline up a hill.  I got so freaked out I started sweating and felt very ill and had to stop getting groceries and leave to go home.

Require Assistance with:

Book keeper to pay bills, write checks, mail payments, make deposits and do bank statements

Assistance to clean home- floors, vacuum, bathroom, change beds, laundry

Yard work help- cut grass, rake leaves, rotor tiller, mulch, etc.

Pain management- chiropractor, physical therapy

Shopping assistance- load groceries onto check out line, carry groceries and load, unload and put away groceries, drive to store on bad days.