I HAVE BEEN TESTED FOR LYME, COULD I STILL HAVE IT

[CELTIC1888]

I HAVE BEEN TESTED FOR LYME THE TEST WAS NEGATIVE BUT IM STILL SICK HERES MY SYMPTOMS . HEADACHES,PALPATATIONS,FATIGUE,ARTHRITS MUSCLE SPASEMS ,TROUBLE TRYING TO SLEEP WITH TWITCHING AND PALPATAIONS DIZZIENESS POOR MEMORY , TINGLING SENSATIONS ALL OVER BODY ITS WORSE AROUND THE HEAD , A TUMOUR ABOUT HALF THE SIZE OF A GOLF BALL ON SCROTUM, PAIN ORIGINALY STARTED THERE IVE HAD SAME TUMOUR ON NECK WHEN LANCED THEY BOTH EXPELLED THICK WHITE SKIN LIKE TISSUE , ITCHIE SKIN ,EYE FLOATERS ,EXTREME SWEATING SHORTNESS OF BREATH EG WENT FROM BEING HEALTHY TO NOT BEING ABLE TO DO HOUSEWORK, DOUBLE VISION , STROKE LIKE SYMPTOMS ,PAIN IN KIDNEY AREA COATING ON TOUNGUE BLOATED STOMACHE LIKE IM NINE MONTHS PREGNANT AND TERRIBLE SMELL TO MY BREATH ,IT SMELLS PARTICUALY LIKE A SEWER WHICH PRETTY MUCH LEAVES ME HOUSEBOUND . UNBLIEVEABLY THE DOCTOR CANT DIAGNOSE MY ILLNESS NOR CAN HE REMIDIE MY SYMPTOMS IE FOUL SMELLING BREATH IM TOO ILL TO GO TO ANOTHER GP AT THE MOMENT ALL BLOOD TESTS  NEGATIVE  WHAT SHOULD BE MY NEXT MOVE. THANKS FOR ANY HELP. PS PLEASE EXCUSE ANY SPELLING MISTAKES GRAMAR ETC AS MY COGNATIVE ABILLITY IS POOR AT THE MOMENT AND ITS ANOTHER AL NIGHTER DUE TO AILMENTS IT CURRENTLY 5.30 AM AS I WRITE LOL

[gorbybelle]

lyme can't be ruled out just because you live in the city and haven't been around red deer!

I think you should do some research into lyme - it will help you decide if it is a possibility - many docs. do not know very much about lyme - especially once it goes past the initial infection - lyme can lay dormant in our bodies - often showing it's self during times of stress.

[CELTIC1888]

THANKS AGAIN FOR  EVERYONES HELP TO MY POST I WISH YOU ALL A SPEEDY RECOVERY. ITS BEEN SO MUCH HELP KNOWING OTHER PEOPLE HAVE ENCOUNTERED THE SAME PROBLEMS.  IM TRYNG TO ANSWER EVERYBODYS POST HERE . I DO NOT REMEMBER THE BLOOD TEST I WAS GIVEN , I THINK IT WAS JUST A NORMAL SCREENING OF BLOOD AND A COUNT OF MY BLOOD CELLS . I WAS THEN TOLD MY BLOOD TEST WAS FINE AND MY (WHITE CELL COUNT WAS NORMAL ) I THINK . I LATER LEARNED THAT IF YOUVE HAD LYME FOR A LONG TIME MY CELL COUNT WOULD LOOK NORMAL OR NOT OVERLY ABNORMAL. IN 2001 I WAS ONLY 19 OR SO AND IT WAS MY FIRST LONG TERM RELATIONSHIP LIVING TOGETHER ETC SO WITH SAID PAIN I WAS MORE WORRIED ABOUT INFIDELITY . AND THIS WAS ON MY MIND TOBEGIN WITH AND THE DOCTORS EXACT WORDS WERE ITS NOT SEXUALY TRANSMITTED ITS JUST A TICK . WITH THAT I WAS HAPPY AND DIDNT ASK ANYTHING ELSE KINDA IGNORANT. I LIVE IN EDINBURGH SCOTLANDS CAPITOL THE ONLY NATURE YOULL SEE ARE PIGEONS  WHICH I WASNT NEAR . AND WASNT AFFICTED WITH LICE OR ANYTHING . WHEN THE DOC GAVE HIS DIAGNOSES I THOUGHT IT MAYBEE SOME INFECTION BUT HE WANTED TO PUT MY MIND AT REST ABOUT INFIDELITY AND DISTANCE IT FROM INFECTIOUS DISEASE ETC. MY EPIDIDIEMIS SWELLED SO MUCH , IT ALSO WAX AND WANED FROM BEING LUMPY TO SWOLLEN LIKE A BALOON. I CANT REMEMBER THE ANTIBIOTICS FULL NAME ,SPELLED PHONETICALY SOMETHING DOXYCYCLINE I DIDNT FINISH THE COURSE THEN TWO MONTHS LATER THE PAIN RETURNED . I HAD MOVED TO A NEW DOCTORS BY THEN , THEY RAN THE USUAL TEST FOR SEXUALY TRANSMITTED DISEASES AND I WAS CLEAN . THE PAIN WASNT AS BAD AND IT CAME AND WHENT SO I PUT IT TO THE BACK OF MY MIND . YEARS LATER I WOULD START TO GET THE ODD PALPATATION NOW AND THEN ( FLUTERING OF THE HEART ) BUT NOTHING TOO SINISTER .  THEN THINGS GOT PROGRESIVELY WORSE . MY BREATH STARTED TO SMELL BAD ONLY WHEN MY MOUTH WAS DRY, AT FIRST I THOUGHT IT WAS MY WISDOM TEETH COMING THROUGH  AT THIS STAGE IT WASNT TO THE EXTENT IT IS NOW ONLY I COULD REALY SMELL IT MY ORAL HYGIENE IS QUITE GOOD HAHA. THE DENTIST SAID I HAD TO WAIT 6 MONTHS BEFORE REMOVING MY WISDOM TEETH . WHEN THE TEETH WERE REMOVED GUESS WHAT ,I THEN GOT DIAGNOSES OF ORAL THRUSH ,LOTS OF DIFFERENT TREAMENTS LATER THE SMELL IS OVERWHELMING FROM 6 FEET AWAY.AS YOU CAN IMAGINE IM PRETTY DEPRESSED AND HOUSEBOUND. MY CURRENT DOCTOR RULED OUT LYME BECAUSE IVE NOT BEEN IN CONTACT WITH RED DEERS AND MY NEGATIVE BLOOD TESTS . HE ALSO PRESCRIBED ME THE SAME ANTIBIOTICS I RECIEVED IN 2001 , AND DRAWN A LINE UNDER IT END OF. THE REPEAT PRESCRIPTION DID NOTHING AT ALL BUT IF IT WAS LYME I WOULD NEED SOMETHING COMPLETELY DIFFERENT BY NOW . THE PAIN AROUN MY KIDNEY AREAS TERRIBLE AND REALY BAD WHEN I WAKE UP IF I HAVENT MOVED ALOT IN MY SLEEP DOES ANYONE ELSE GET THIS , HAS ANYONE HAD BAD BREATH DUE TO LYME .            PHEW LONG POST , THANKS FOR READING , ANSWERING

[gorbybelle]

considering the doctor gave you antibiotics when you first got sick - 2001 wasn't it? [just read your MS post] - and the fact that you didn't finish the course  also you haven't been well since that time - it sounds a lot like lyme to me .  You mention 'flare - ups' of your symptoms - many people with lyme notice their symptoms flare every 4 weeks or so .

Did the doctor say that the 'original pain' in your groin was caused by a tick-bite?

As 'Patsy10' said above - you need a Lyme literate doctor - known as LLMD's. - with the blood tests for lyme being so unreliable - an LLMD. makes a diagnosis based on symptoms/history etc; I myself and others here are being treated for lyme without ever having a positive blood test - it is possible to have co-infections along with lyme - you need a doctor who knows the 'whole picture' of this disease - symptoms and treatment .

If I were you my next move would be to locate an LLMD. - it may not be lyme and/or co-infection but it is definately worth an appointment with a knowledgeable lyme doc.

Many folks with lyme are told that it is 'all in their head' - when tests come back negative - anxiety is a symptom of lyme - in my experience - G.P's/M.D's. - know very little about lyme especially once it goes past the initial phase of the standard treatment.

gorbs.

[7thStranger]

Hello, I have much the same probs and you do and i am very sorry for that. Can i ask what tests you have had done included blood tests?

[CELTIC1888]

HI PATSY ,THANKS FOR REPLY . IN 2001  I HAD TERRIBLE PAIN IN MY GROIN I WAS KINDA WORRIED THAT IT COUDVE BEEN SEXUALY TRANSMITED . THE DOC REASURED ME IT WASNT . HE DID SAY A TICK . I WAS JUST HAPPY IT WASNT SEXUALY  TRANSMITED  INFIDELITY ECT . I LIVE IN SCOTLANDS 2ND BIGGEST CITY AND HAD NOT BEEN CLOSE TO NATURE SO THOUGHT NOTHING OF IT BUT I TOLD MY NEW GP ABOUT THIS YOU WOULD THINK HE WOULD PUT 2 AND 2 TOGETHER . ALSO CAN LYME END UP TERMINAL , AS IN THE PAST I WOULD CALL EMERGENCY SERVICES WHEN I HAD  A FLARE UP  IM SO WEAK NOW AND ANXIOUS OF THE NEXT ONE . BUT MY MEDICAL RECORDS PORTRAY ME AS  A STRESS HEAD SO THEY OFFER LITTLE HELP , AT THE SAME TIME I DONT WANT TO BE NEAR DEATH AND STUBOURNLY REFUSE TO CALL 999 , DOH THANKS AGAIN FOR ANY HELP

[patsy10]

Much of what you described are lyme symptoms.  Were you bitten by a tick?

Testing for lyme is not very accurate so it is possible to have it and test negative.

An appt. with a doctor who specializes in lyme may help you find answers as to whether you have lyme or another disorder.