posted
My pcp called in biaxin until i get to a lyme doctor. Anyone ever take this...i dont know why he didnt do the doxy.
Also saw neurologist yesterday who was no help. I described my head pressure symptoms and stiff neck...and he said this is not neuro lyme. He offerred to do a brain mri, but said it will be negative. Not sure if i should go forward with it. Anyone gain anything useful from a brain mri? He said my neurological exam was fine.
Posts: 66 | From Memphis | Registered: Feb 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
biaxin is commonly used. by taking doxy first you know you are getting erlichia which is also often in the ticks
what is important is the dosage for now...something is better than nothing. hope you get to a good llmd soon.
most neurols are worthless.
a brain mri is probably a good idea to rule out bad stuff(tumor) and even if the neurol will probably read it wrong...even if it is lyme he will say it is something else or nothing.
but often the radiologist will say lyme is suspicious. or they will way probable ms and that can mean lyme too
id get the mri...you will have info and access to report and films for your llmd who can understand it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I have the horrible head pressure... and a CT, MRI and MRA showed nothing and it all came back clear. It just doesnt detect anything. If you have good insurance that will cover it, get it.
Posts: 251 | From Baltimore | Registered: Oct 2012
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gmb
Unregistered
posted
In my opinion a SPECT scan is of more benefit than an MRI. It tests for function.
posted
I forgot to add that a recent ct of head was negative. Wonder how much better mri is?
Posts: 66 | From Memphis | Registered: Feb 2013
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posted
no real head pressure symptoms and my husband presented a "tumor" on his MRI. it is watchful waiting right now.
not sure the difference in results of a CT and MRI. if your insurance covers it i would get it to have the information.
Posts: 274 | From United States | Registered: Feb 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I would be more likely to submit to an MRI than a CAT, (Magnetic resonance vs. radiology) but there's no guarantee either will show anything.
LLMDs seem to be going the route of the SPECT scan. Do you have a Lyme Literate doctor?
I agree with others here who say most neuros are worthless. My mom saw at least four of them, over 10 years, before one even suggested she might have neuro Lyme - her spinal tap proved it. An earlier CAT only produced an opinion from the radiologist that it was "possible MS."
I'd say don't waste your time with expensive "mainstream" specialists - they are often more clueless about Lyme than a GP.
Have you tried taking fish oil or coconut oil (for EFAs); or Tumeric/Curcumin (the yellow spice used to make mustard)? Some folks get relief from inflammation symptoms with one or both of these. Couldn't hurt to try it.
Hope you'll be feeling better soon!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
If you get an MRI which will rule out things like tumors, make sure you get one with and without contrast. I had fluid filed lesions in the white matter of my brain which showed up on the MRI. These areas are also seen in depression and aging. With treatment (antibiotic) these lesions went away, but they were seen. I also agree with the non-effective neurologist consult. Get to an llmd. My brain problems were discovered after my pituitary quit and had the whole head MRI-ed.The SPEC scan will show functioning and decreased function is important in empirical evidence of an infection. The problem is that the neurologist and clueless docs will try and make it something it isn't like MS, Parkionsons....
Posts: 482 | From Oregon | Registered: Feb 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
-spect scan is best...but when i got mine-awhile ago-it was strongly advised by llmd to go to columbia in nyc. there may be other good places now-but that is probably still the best
-i agree stay away from injections if you can
-also-be very careful if they say it is a tumor...sometimes lyme looks like a tumor...and you do not want brain surgery if abx will take care of it
-also-if they say brain tumor it can be worm...remember that video? yuk. but i guess in that case you would want to get it out. but for sure get a second opinion.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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