(MY) SYMPTOM CHECKLIST

Cover of "Beating Lyme: Understanding and...

***The following are possible indicators of Lyme. You may have one or more symptoms, but having them does not diagnose Lyme. However, the list helps those who may have been exposed to the disease to consider what they are experiencing. Symptoms can then be brought to physicians for evaluation of the illness.

From the book ‘Beating Lyme‘  2008; Constance A. Bean with Lesley Ann Fein, MD, MPH

-I am going to put next to each symptom what I’ve had, have, or don’t have along with some details. **DO NOT USE THIS SYMPTOM LIST OR MY SYMPTOMS AS A CLINICAL DIAGNOSES FOR YOURSELF!!! I AM NOT A DOCTOR, THANK YOU!!!**

1. Unexplained fevers, sweats, chills, or flushing~  HAVE DAILY; EITHER COLD OR HOT FLASHES, I ALSO GET SEVERE NIGHT SWEATS, BASICALLY DRENCHING MY BED (I SLEEP WITH A TOWEL) AND SOMETIMES A LOW-GRADE FEVER WITH THEM WILL OFTEN WAKE UP TREMBLING IF I HAVE THEM NIGHT BEFORE.

2. Unexplained weight change-loss or gain~  HAVE HAD OFF AND ON SINCE AGE 17 (Once gained 25lbs in about 2 months after Seizure; Another dropped almost 30lbs to a scary weight of 101 at age 15yrs old, height 5’6.)

3. Fatigue, tiredness, poor stamina~  HAVE DAILY; ONE OF MY FIRST SYMPTOMS BACK WHEN I WAS 12YRS OLD, I COULDN’T STAY AWAKE IN CLASS FELT DRUGGED, HAVE TO TAKE A NAP WHEN I GOT HOME FROM SCHOOL OR IN THE NURSES LOUNGE

4. Unexplained hair loss~  YES BUT SURPRISINGLY WHEN I FIRST STARTED TREATMENT. I ASKED MY LLMD AND SHE SAID IT IS FROM HERXING

5. Swollen glands: list areas~  HAVE HAD ALMOST EVERY DAY SINCE A YOUNG AGE

6. Sore Throat~  SOMETIMES

7. Testicular/pelvic pain~  SOMETIMES, MOSTLY DURING SEXUAL INTERCOURSE

8. Unexplained mensutrual irregularity~  ALWAYS, SINCE I WAS 14YRS OLD. I SOMETIMES NOW GET IT TWICE A MONTH, NEVER ON TIME. SEVERE PAIN AS WELL DURING CYCLE. HIGH HORMONE BIRTH CONTROL PILLS NEVER HELPED REGULATE EITHER, MADE ME SICKER DUE TO SPOTTING.

9. Unexplained milk production, breast pain~  VERY OFTEN HAVE HAD BREAST PAIN INBETWEEN CYCLES, SO BAD NEEDED PAIN MEDICINE, I’VE EVEN A WORN BRA TO BED TO HELP AND I’M NOT VERY BIG TO BEGIN WITH SO ITS SHOCKING THE PAIN I FEEL.

10. Irritable bladder or bladder dysfunction~   CONSTANT UTI’S, PRACTICALLY MONTHLY; SO SEVERE ENDED UP IN THE HOSPITAL SEVERAL TIMES. WOULD WAKE UP MORE THAN ONCE IN THE MIDDLE OF NIGHT. ALSO HAVE WET THE BED, AND NO IT WASN’T WHEN I WAS YOUNG BUT IT IS SIGN SOMETIMES WITH CHILDREN WHO HAVE LYME.

11. Sexual dysfunction or loss of libido~  LOSS OF SEX DRIVE AND PAIN DURING, GOT INCREASINGLY WORSE OVER THE YEARS TOO. WENT FROM HAVING HIGH LIBIDO TO NEVER CARING ANYMORE.

12. Upset Stomach~  WAS MISDIAGNOSED WITH IRRITABLE BOWEL SYNDROME IN MY TEENS ALTHOUGH MY MOTHER CLAIMS I COMPLAINED WHEN I WAS IN THE FIRST GRADE WOULD BE SICK FOR HOURS BEFORE SCHOOL EACH DAY LOTS OF ANXIETY TOO; BEEN BETTER NOW SINCE TREATING CO-INFECTIONS OF LYME.

13. Change in bowel function-constipation or diarrhea~  HAD BOTH BUT MOST OF THE TIME CONSTIPATION (sometimes not going for as long as six days)

14. Chest pain or rib sorness~  I GET BOTH ALMOST DAILY. FEELS LIKE I’M HAVING A HEART ATTACK AT TIMES OR AN ELEPHANT IS SITTING ON MY CHEST; CAN NOT WEAR UNDERWIRE BRAS DUE TO THE RIB SORENESS.

15. Shortness of breath, cough~  COUGHING EVERY NOW AND THEN, GOTTEN MORE  SHORTNESS OF BREATH WITH THE SIMPLEST OF ACTIVITIES SUCH AS CLIMBING MY STAIRS IN MY HOUSE. I REMEBER BACK IN SCHOOL THAT WAS ONE OF MY FIRST SYMPTOMS, I COULDN’T KEEP UP WITH MY CLASSMATES IN GYM AND  I HAD A HARD TIME AT CHEER-LEADING PRACTICE OR DANCE CLASSES.

16. Heart palpitations, pulse skips, heart bloc~ ONE OF MY VERY FIRST SYMPTOMS AS A CHILD AND GOT INCREASINGLY WORSE OVER THE YEARS; GOT TESTED AND DIAGNOSED WITH POTS SYNDROME HAVE A HEART RATE BETWEEN 135-145 BEATS PER MINUTE. THE NORMAL FOR PEOPLE IS 80 BEATS PER MINUTE; FEELS LIKE I’M HAVING A HEART ATTACK , MY BLOOD PRESSURE DROPS TOO AND I WANT TO PASS OUT.

17. Any history of a heart murmor or valve prolapse~  NO NEVER

18. Joint pain or swelling: list joint~  YES, PAIN IN ALL OF THEM, ANKLES, ELBOWS, HIPS, ETC. ESPECIALLY KNEES AND THEY WILL REALLY SWELL, HURT TO TOUCH IN BACK OF KNEES (Hot to touch) AND MAKES BENDING LEGS IMPOSSIBLE (they will get as big as baseballs)

19. Stiffness of joints, neck, or back~  YES PRACTICALLY DAILY. CRACKS EASILY TOO.

20. Muscle pain or cramps~  YES, IN LEGS, ARMS, & BACK, SPINAL PAIN CAN BE SEVERE TOO. ESPECIALLY LOWER BACK.

21. Twitching of the face or other muscles~  YES, MY EYES HAVE TWITCHED AT TIMES, HANDS AND LEGS

22. Headache~  YES, STARTED AT AGE 11 WITH SEVERE MIGRAINES, DAILY ALL MY LIFE

23. Neck creeks and cracks, neck stiffness, neck pain~  HAVE ALWAYS HAD, AND HAVE ALL THREE ALMOST DAILY

24. Tingling, numbness, burning, or stabbing sensations~  HAVE ALL FOUR THROUGHOUT ENTIRE BODY DAILY. WILL GET IT IN MY FACE AS WELL.

25. Facial paralysis (Bell’s palsy)~  WILL SLIGHTLY GET EVERY NOW AND THEN ON A BAD DAY, USUALLY IN THE MORNING WHEN I WAKE UP OR HAVE A HEADACHE, SEVERE NUMBING AND TINGLING WITH ACCOMODATE IT. SOMETIMES WILL GET SO SEVERE WILL BE HEARD TO OPEN EYE UP.

26. Eyes/vision: double, blurry, floaters, increased light sensitivityHAVE HAD ALL, IN FACT OVER THE YEARS MY VISION EACH YEAR HAS GOTTEN  SEVERELY WORSE WHEN I’VE SEEN MY EYE DOCTOR; WITHOUT MY CONTACTS AND MY GLASSES I’M BLIND AS A BAT; I OFTEN WEAR SUNGLASSES INDOORS AND OUTDOORS, SUPER SENSISTIVE WITH A MIGRAINE. MY NICK NAME BY MY FAMLY IS ‘RAY CHARLES’…Lol, I DON’T TAKE A OFFENSE, YOU GOTTA LAUGH! WHEN GOING OUTSIDE  THE SUN CAN BE UNBEARABLE.  INDOOR LIGHTING, ESPECIALLY FLOURESCENT, THATS THE WORST!! I SOMETIMES WILL GET FLOATERS, DOUBLE VISION, AND BLURRINESS DURING OR ON THE ONSET OF A MIGRAINE. 

27. Ears: buzzing, ringing, ear pain, sound sensitivity~ I GET RINGING IN THE EAR QUITE OFTEN, POPING SOUNDS TOO. SOMETIMES  IT GETS SO LOUD I CAN’T EVEN CONCENTRATE ON MY THOUGHTS. ITS ALMOST LIKE COMING OUT OF A CONCERT OR NIGHT CLUB. THE EAR PAIN I WILL GET  WITH THE ONSET OF A HEADACHE OR BRAIN SWELLING OTHER TIMES FOR NO REASON AT ALL..ITS LIKE HAVING A TERRIBLE INNER EAR ACHE. I WILL GET SOUND SENSITIVITY AT TIMES WITH THE SIMPLEST OF THINGS SUCH AS MY MOM’S DOGS BARKING EVEN AT TIMES HANGING OUT WITH SEVERAL FRIENDS THE LOUNDESS OF THE CONVERSATION CAN BE OVERWHELMING. ITS GOTTEN MUCH WORSE OVER THE YEARS THAT IT MAKES IT HARD TO GO OUT TO PLACES LIKE THE BARS AND NIGHT CLUBS WTH FRIENDS.

28 .Increased Motion Sickness, Vertigo , Poor Balance~ YES, I’VE HAD ALL THREE SINCE ABOUT AGE 16. IM TOLD ITS FROM LYME AND THE ENCEPHALITIS IN MY BRAIN I ALSO HAVE LOW BLOODPRESSURE AND ANEMIC SO I KEEP UP WITH MY IRON AND MY IV SALINE BAGS AND THAT SEEMS TO HAVE HELPED A LOT. ALTHOUGH THE POOR BALANCE JUST COMES WITH THE TERRITORY OF HAVING LYME, I CONSTANLY HAVE BRUISES ON ME AND HAVE FALLEN DOWN THE STEPS AT MY PARENTS HOUSE AND OTHERS MORE TIMES THAN I CAN COUNT ITS GOTTEN TO THE POINT WHERE MY FAMILY DOESN’T EVEN ASK IF I’M OK, THEY’VE COME TO EXPECT IT LOL.

29. Lightheadedness, Wooziness~  YES, BOTH, LIGHTHEADNESS I GET QUITE OFTEN WITH THE MIGRAINES AND AT TIMES WHEN MY  HEAD FEELS SUPER HEAVY I GET WOOZY.

30. Tremor(s)~ YES, MINE STARTED WHEN I WAS IN JUNIOR HIGH, JUST MY HANDS. OVER THE YEARS ITS NOW ESPECIALLY SINCE TREATMENT I GET OUTBURSTS THAT CAN LAST FOR 5 MINUTES TO 20 MINUTES, PART OF THE BODY OR THE WHOLE BODY, SOMETIMES EVEN FEELING LIKE I’M TREMBLING INSIDE BUT NOT COLD. ALSO HAVE EXPERIENCED EPISODES OF WHAT IS CALLED LOCKED IN SYNDROME. MY LLMD SAID ONLY A HANDFUL OF HER PATIENTS HAVE EXPERIENCED THIS.

31. Confusion, difficulty in thinking~ HAVE HAD BOTH, I WOULD GET DISTRACTED LIKE I’D ALMOST FEEL  LIKE I COULDN’T  UNDERSTAND THE SIMPILIST OF TASKS EVEN THOUGH I KNOW I DID..I STILL GET THAT! 

32. Difficulty with concentration, reading~ YES HAVE HAD BOTH, THE BASIC REASON WAS SCHOOL AND SPECIFIC STUDIES SUCH AS MATH OR EVEN JUST READING A BOOK CAN BE HARD. SOMETIMES IT CAN MAKE YOU FEEL STUPID, BUT YOUR NOT! ITS YOUR BRAIN MISBEHAVING;-) THE THINGS I DO AS A WIFE NOW IS LIKE PUTTING THINGS IN THE FREEZER THAT SHOULDN’T BE IN THERE, OR PUTTING A CUP OF TEA IN THE MICROWAVE WITH JUST THE TEA BAG AND NO WATER. I’VE DONE THIS SEVERAL TIMES. 

33. Fortgetfulness, poor short-term memory~ I HAVE ALWAYS CONSTANTLY LOST THINGS SO FRUSTRATING, EXPENSIVE THINGS OF COURSE TOO. YOU COULD TELL ME SOMETHING AND 2 MINUTES LATER I WOULDN’T REMEMBER (DRIVES MY HUSBAND CRAZY, LOL) THE SAD PART IS THERE ARE MORE THINGS FROM MY PAST THAT I FORGET, LIKE WHEN I WAS A CHILD AND WHEN MY HUSBAND AND I DATED, THATS BEEN HARD TO ACCEPT.

34. Disorientation: getting lost; going to the wrong places~ THIS HAS ONLY HAPPENED TO ME ONCE  SCARED ME SO BAD!! I CALLED MY HUSBAND IN A FRANTIC STATE, I WAS LOST IN MY OWN HOMETOWN WENT IN CIRCLES FOR AN HOUR TRYING TO GET TO A GIRLFRIENDS HOUSE WHOM I’VE BEEN TO BUNCH OF TIMES. I LIVED IN THIS TOWN MY WHOLE LIFE, TO FEEL THAT WAY WAS SO SCARY..THAT WAS AROUND THE TIME I KNEW I WAS COMING OUT OF REMISSION AND WAS GETTING TERRIBLY SICK AGAIN.

35. Difficulty with speech or writing~ BOTH, MY FAMILY SAYS I MUMBLE AND I GET MY SENTENCES MIXED UP, ALMOST  LIKE MY WORDS BACK WORDS. I WILL THINK SOMETHING IN MY HEAD BUT IT DOESN’T COME OUT THAT WAY. I ALSO FORGET WHAT I WAS GOING TO SAY MID-SENTENCE. THE ONLY TIME WRITING BECOMES DIFFICULT IS WHEN I HAVE A BAD DAY. I’VE BEEN TOLD I HAVE NICE HANDWRITING, IF I HAVE A BAD DAY, FORGET IT!!

36. Mood Swings: irritability, depression~ LETS PUT IT THIS WAY I’VE BEEN ON ANTIDEPRESSANTS SINCE I’VE TURNED 14, I’VE TRIED GOING OFF AND I’M A MESS. I’LL EVEN THROW TEMPERS “LYME RAGE”, ITS LIKE AN OUT OF BODY EXPERIENCE BECAUSE I’M THE MOST LAID BACK PERSON EVER. BUT, EVEN THE SOUND OF MY MOM’S DOGS BARKING, MY HUSBAND’S VOICE OR PEOPLE TALKING ‘NOISE’ IN GENERAL BOTHERS ME…ITS A HORRIBLE FEELING NOT HAVING A SENSE OF CONTROL OR OF MY SENSES. I’VE HURT MANY PEOPLE IN MY LIFE BECAUSE OF IT AND LOST SOME TOO. I ALSO GET ANXIOUS EASILY AND HAVE PROBLEMS WITH MY PATIENCE TOO AT TIMES.

37. Disturbed Sleep-too much, too little, early awakening~ I GET ALL THREE, AND ANYONE WHO KNOWS ME KNOWS THIS IS TRUE DUE TO THE VERY WEIRD TIMES I SEND OUT EMAILS…LOL. I USUALLY GET NO MORE THAN 3-4HRS ASSLEEP WITHOUT WAKING UP. SOMETIMES I’M UP BY 6AM FOR NO REASON AND WILL GO BACK TO BED AT LIKE 11AM. OTHER TIMES I MAY SLEEP OVER 10HRS A DAY. I HAVE INSOMNIA VERY BAD TOO.

38. Exaggerated symptoms or worse hangover from alcohol~ OH GOD YES, FOR ME ONE SIP OF ALCOHOL GIVES ME A HUGE MIGRAINE, CAN’T EVEN DO CHURCH WINE FOR COMMUNION, ITS INSTANT PAIN. ONE BOTTLE I’M COMPLETELY DRUNK AND WITH A HANGOVER FOR 5 DAYS TO A WEEK…SO NO, DO NOT DRINK…JUST MY CLUB SODA PLEASE:-)

(Source: International Lyme and Associated Diseases Guidelines, 2002, Joseph Burrascano, M.D., http://www.lymenet.org).


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