I am thinking how similar these 2 diseases are in the symptoms -- dry mouth and dry eyes is not a lyme thing though one can have both diseases , as apparently I do...when an infected tick bites you, it may carry up to 5 different bacteria for 5 differing diseases - that is why one would need to be tested not only for lyme but for the co infections --the nymph tick is so tiny like a poppy seed and most will not see it --many as 50% will never get the bullseye rash -- false positives for lyme are rare ---false negatives are the majority! Birds carry ticks so no one is really *safe* from being infected --you can be infected in your own backyard and never know...My lyme was 5 years in progress before any of the many specialists even did a lyme test ! for me the damage that was done is done --what is--is...and I will always live with lyme spirochetes in my system...they are a tough and resilant bacteria to kill off...co infections must be killed off first and then the lyme ---
many of thr doctors that diagnose and treat lyme have had thier offices raided by the college of physicains and surgeons and ended up being legally persecuted and losing thier medical practice...so sad---
is it the same with sojurns ??.....
Symptoms of Lyme Disease
The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
Rash at site of bite
Rashes on other parts of your body
Rash basically circular, oval and spreading out (more generalized)
Raised rash, disappearing and recurring
Head, Face, Neck
Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy, Horner's syndrome)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems (unexplained)
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
Eyes/Vision
Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes
Ears/Hearing
Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears
Digestive and Excretory Systems
Diarrhea
Constipation
Irritable bladder (trouble starting, stopping) or Interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
Musculoskeletal System
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)
Respiratory and Circulatory Systems
Shortness of breath, can't get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, Heart blockage
Neurologic System
Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness
Psychological well-being
Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety
Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks
Reproduction and Sexuality
Loss of sex drive
Sexual dysfunction
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain
General Well-being
Phantom smells
Unexplained weight gain, loss
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.
Low body temperature
Allergies/Chemical sensitivities
Increased effect from alcohol and possible worse hangover
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Yes, many symptoms of Sjogren's are similar with Lyme's...as well as other autoimmune diseases. And your list shows just how extensive the list of symptoms can be.
However, I have been told by my rheumy/neuro (he's both specialties) that false positives in patients with autoimmune disease is not rare, but actually common. I live in the mountains on a heavily wooded property and can pull 4 (attached) ticks off and any given day in the spring (and I look for those pesky nymphs). Heck I just pulled one off two weeks ago (in NOVEMBER for crying out loud) while blowing leaves off the yard. I asked him once if he thought I should be checked (I've never had a rash), just because of all the contact with ticks.
He says false positives are rare in "normal" people. But with the irregular way an autoimmune person's antibodies respond, false positive are so common they are expected. Therefore, he won't do a Lyme test unless a rash is present.
Sorry your diagnosis was missed for so long and now you are paying a dear price. Then to have the Sjogren's on top of it. I'm curious as to where you are (region) and whether you saw the tick or live in an area with heavy tick infestations?
Well, good luck. I hope you have a good team of doctors to help you.
For me it remains a mystery -- as I did not see the tick nor get the rash -- I had been diagnosed as fibro -- but the rhuemy that diagnosed fibro did not do a lyme test and according to my GP that is a no no in Canada --if you are diagnosed with fibro you are to be tested for lyme. Doctors don't follow protical . It is almost impossible to find a doctor to diagnose and treat lye in Canada --our govenment remains in denial regarding lyme and the seriousness of it. -- we have been the the beach and seen ticks crawling in the sand and the seagulls carry them as well. Mind you I was totaly ignorant about ticks and lyme disease until the public health nurse called and said -- we have your blood results and you have lyme disease and that ws the beginning of my journey . A local doctor was bit by an infected tick in the city here while shopping at the local farmers market. I know in Toronto a woman was walking her dog down the sidewalk and found a deer tick on her and it too was infected. A songbird crashed into a highrise building in Toronto and upon examination several deer ticks were found to be attached to the bird.My memory does not always serve me best but I am certain they were all infected ticks on the bird...I will have to try find the newspaper article.
my blood was postive right from the get go --- my cardio doctor sent to to an infectious disease specialst who then told me there is no way I have lyme disease even with my positive blood work and progressively ongoing symptoms --lyme is a clincal diagnosis not based soley on blood work as well.
I had to go online and find the Lyme Disease Foundation and i was fortunate to get one of 2
**Lyme Literate * doctors that diagnose and treat lyme disease. While i was being treated the other doctor was prosectuted for treating lyme. sad-- I know many Canadians had to sell homes , lost jobs went bankrupt -- many travel to USA for treatment.
I live in South Western Ontario -- London region
it must be very pretty where you live in the mountains --it sounds heavenly -- I would freak if I saw a tick on me or near me...lol
thanks for responding :)
I had Lyme in 1994 and I KNEW I was bitten by a tiny deer tick. The area got inflamed, itched and burned. It then turned into an erythema migrans rash. I lived in an endemic area full of ticks. I lived in the woods and spent lots of time outdoors. I did test + at first. Back then they did not test for co-infections, but I know I know carry antibodies to Human Granulocytic Erlichosis. I was seen at a clinic and the entire clinic was called in to 'see a real Lyme rash', as I recall. Initially, however, when I told them I had Lyme, I was laughed at.....when they saw the rash, the doctor was embarrassed but admitted, he was wrong, and that I DID indeed have Lyme.
As far as Sjogren's (which I believe you call Sojourn's?? but are referring to the autoimmune disease Sjogren's?), I had Lyme many years before the onset of Sjogren's symptoms. I am +on ANA, negative on ENA (SSA-B), and +on lip biopsy.
One could have caused the other. I don't know. I think it is important to get the correct diagnosis, because treatment of Sjogren's, could worsen Lyme. I do not immunosuppress myself due to the Lyme diagnosis. I am on IVIG.
Hi Inga,
Thanks for sharing your lyme story.I am happy that you were able to get treatment early on in the easy to treat stage. In the hit new documentary *under our skin * about the horrors, controversy,economics and politics of lyme disease there is a gentleman that is a park ranger and he had both the rash and the tick and suffered horribly, the doctors kept telling him it wasn't lyme and his journey is took him from a situation where $50.00 worth of medicine (doxycycline) would have cured him , to the delay in proper diagnosis and the hundreds and thousands of dollars in medical costs that followed.Lyme disease is growing - people need to be aware.Yes, I often wonder if my Sjogren's is brought on by lyme -- sorry for my spelling error. I been spelling Sjogren's wrong this whole time...lol
Sometimes I still wonder If I dont have Lymes, I test Neg on SSA,, SSB,, ANA,, and neg on Lyme titer,, but I have mentioned in the past that thre are at last count 23 organisms that can be related to lymes,, of course a lot my systems could be from al ot of things,, so who knows
I have had three tick bites in the last five years, none of which left the classic round rashes.
So far I have taken 4 off my doxie,, no idea how many got off,, but I havent been bitten,, its odd,, hes only outside long enough to go to the bathroom,, guess thats long enough,,, no fleas though,, I should kno,w,, they love to bite me,, but they may be biting me and I cant feel it,, SIGH
cinnaman girl~ huh...way back when they were testin' me 4 um EVERYTHIN' my lymes 1 came back positive...
but when the did a more concentrated test...NOT SO MUCH!!!
interestin"
many good thoughts dearheart!
~*flutterfly*~
Some may be interested in this.
http://www.chicagotribune.com/health/ct-met-chronic-lyme-disease-20101207,0,5671843.story?page=1