posted
I saw a neurologist yesterday - he says my MRI was excellent - not a spec on it and that he does not think I have lyme. He said something always show up on the Brain MRI with neuro lyme. Is this true? Anyone out there have a clean MRI and a positive blood test for lyme?
What is the difference between neuro lyme and regular lyme?
Also, he thinks I am suffering from migraines - I read that migraines can cause problems on one side of the body - which is where all of my symptoms are. Anyone think it's possible that continuous migraines can be causing all of the muscle aches and random pains and joint dysfunction on one side of the body?
Posts: 70 | From Quakertown, PA | Registered: Sep 2005
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posted
Your neuro is wrong. I have a normal MRI and have a VERY abnormal SPECT scan showing major vasculitis from my Lyme.
This is why Columbia University uses SPECT imaging for Lyme. It checks for functionality and blood flow as opposed to an MRI which just checks the structure of the brain. Many of us have normal MRIs and have lyme.
All of my neuro symptoms are on the left side of my body. I hope you are seeing a LLMD, and if you find a LL neurologist let us all know, because I've never met one
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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posted
Thanks. I see an environmental medicine MD next week. They are doing all of the lyme tests. I have had two negative lyme tests elisa and WB showing all bands.
If I am on doxy - which I am right now - 200 mg - will this affect my results?
Posts: 70 | From Quakertown, PA | Registered: Sep 2005
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-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
i don't know what the results were for the WB bands individually - all i was told is that the test came back negative.
i know the doxy won't affect my MRI but i was curious if it could affect the outcome of bloodwork and other tests for lyme? anyone know?
Posts: 70 | From Quakertown, PA | Registered: Sep 2005
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posted
You should be off all abx one month prior to testing. Sometimes it is good to go abx then go off for month prior to testing because it will cause you to start making antibodies for Bb.
If you think it gave you a false positive I doubt it.
Get a copy of your Western Blot, and post all of the bands here.
Do you have other symptoms for lyme? How many on the symptom check list?
SYMPTOM CHECKLIST
This is not meant to be used as a diagnostic scheme, but is provided to streamline the office interview. Note the format -- complaints referable to specific organ systems are clustered to better display multisystem involvement.
Tick infested area ___ Frequent outdoor activities ___ Hiking ___ Fishing ___ Camping ___ Gardening ___ Hunting ___ Ticks noted on pets ___ Other household members with Lyme ___ Do you remember being bitten by a tick? No ___ Yes ___ when ________ Do you remember having the ``bull's eye rash?'' No ___ Yes ___ Any other rash? No ___ Yes ___
Have you had any of the following? CIRCLE ALL YES ANSWERS
Unexplained fevers, sweats, chills, or flushing Unexplained weight change (loss or gain -- circle one) Fatigue, tiredness, poor stamina Unexplained hair loss Swollen glands: list areas _______________________________________________ Sore throat Testicular pain/pelvic pain Unexplained menstrual irregularity Unexplained milk production; breast pain Irritable bladder or bladder dysfunction Sexual dysfunction or loss of libido Upset stomach or abdominal pain Change in bowel function (constipation, diarrhea) Chest pain or rib soreness Shortness of breath, cough Heart palpitations, pulse skips, heart block Any history of a heart murmur or valve prolapse? Joint pain or swelling: list joints _________________________________________________ Stiffness of the joints or back Muscle pain or cramps Twitching of the face or other muscles Headache Neck creaks and cracks, neck stiffness, neck pain Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity Facial paralysis (Bell's Palsy) Eyes/Vision: double, blurry, increased floaters, light sensitivity Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity Increased motion sickness, vertigo, poor balance Lightheadedness, wooziness, unavoidable need to sit or lie down Tremor Confusion, difficulty in thinking Difficulty with concentration, reading Forgetfulness, poor short term memory, poor attention, problem absorbing new information Disorientation: getting lost, going to wrong places Difficulty with speech or writing; word or name block Mood swings, irritability, depression Disturbed sleep -- too much, too little, fractionated, early awakening Exaggerated symptoms or worse hangover from alcohol
When my lyme was in remission, I had alot of symptoms, but not very often.... So ocassionly I would get headaches or swollen glands (for no reason)
posted
Yes doxy (or any abx.) can give you a false negative, but doubtfully a false positive. BUT if you've tested negative in the past, about 36% of people who are retested after at least 1 month of abx. treatment retest as positive (once again must quit abx. for according to Dr. C. 10-15 days prior to testing).
But doxy. big picture wise won't affect your MRI, especially at 200 mg. Long term the goal is that the abx. clear up the infection and that whatever damage is done heals. For example, that the vasculitis on a SPECT eventually goes away, but this takes quite a while and although I'm no MD, I don't see happening on 200 mg of doxy.
Hope this helps!
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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posted
I will try to make this short - I have many of the lyme symptoms - and also have a history of tickbites but never got sick afterwards - all of the bites were years ago.
I was on doxy for 15 months (200 mg per day), prescribed by a dermatologist for complexion - I stopped taking it 3 months ago and within a week I started having problems. I had an inner ear infection which induced anxiety. Now I cannot sleep without a xanax.
The anxiety led to a million other symptoms and doc visits/tests and now I am having a hard time distinguishing if everything I am experiencing stemmed from stress and anxiety, or if I in fact really have lyme.
I have started back on the doxy when I suspected lyme - been on it for about 22 days I think but my LLMD visit is next week. So now are these tests going to be unreliable since I have been back on doxy for almost a month?
Again, I want to stress, the original reason I was on doxy, was not for lyme. I only started experiencing all of my problems when I stopped taking it.
My visit is in 6 days with the LLMD. What do you all think I should do?
Posts: 70 | From Quakertown, PA | Registered: Sep 2005
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