posted
I just had a PET scan this week and it was ordered by my LLMD. He feels sure I have Lyme Encephalopathy and it is my understanding that he is using the brain PET scan to help measure its severity. Don't have the results yet.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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bettyg
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my brother-in-law NOT dx with lyme disease had one done.
he was 1st diagnosed with: frontal lobe temporal dementia by PET scan; then changed to bipolar...may have been changed again.
i feel too he has chronic lyme but have never pursued this because he is so manic depressive and has a large amount of guns/rifle collection!
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SPECT scan is much cheaper and I think there is more medical literature to support its interpretation.
If at all possible Columbia in New York or possibly Kansas University are the best places for a SPECT. I have heard that KU has a 3 dimensional scanner which is very advanced technology.
If your neuro is not Lyme literate even if the test is done at Columbia and is abnormal you might get the usual comments such as, "SPECT scans are functional tests and are not diagnostic."
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I did have a SPECT done at Kansas that supported info for my LLMD but I can't afford LLMD anymore and am not actively treating the lyme disease....I get the sense after a certain amount of time it's best to stop the antibiotics because it is merely chasing the stuff into cyst form and creating other imbalances.
The Neuro is aware of my Lyme and has been with me since diagnosis in 2005, but really seems to think MS is possible so wants to do MRI first and PET to check for Alzheimers, Parkinson's type ugliness due to my continued memory and cognitive problems.
My vision has been bad and lots of other things to suggest to him MS, but we have gone down this road before and at this point,
I truly don't know what to believe or what to do.
It's hard to imagine succumbing to this quality of life I have gotten used to.
My neuro observed that he thinks I am getting worse and I didn't think so, I thought I am just journaling the symptoms so have a better idea and ability to express what is going on.
Lyme and MS are so similar I don't know how anyone would really tell them apart anyway.
I did antibiotics for approx two years and they got me a long way but at this point, really,
I'm completely on my own with it and am only seeing neuro because he treats the migraines and is covered.
Thanks for the feedback all....any further would be appreciated.
The only thing is I didn't know you can get joint pain with MS.
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