posted
Has anyone had debilitating neurological side effects (i.e. loss of short-term memory, emotions, appetite, terribly slow-thinking, etc.) and had a spinal tap done and/or MRI, which came back "NORMAL"?
I had a tap and MRI done-both of which were NOT abnormal; however, I have been suffering from very real neurological symptoms for 9 months now. Can anyone relate?
Posts: 98 | From WI | Registered: Feb 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
yes, i had SEVERE, unrelenting neuro symptoms that left me completely bedbound, yet my MRI was 'normal.' go figure.
posted
Don't have a spinal tap done. Its risky, painful and doesn't really show them anything.
Columbia is recruiting right now for a study on spect scans.
They want to find a way to teach doctors to tell the difference between lyme and everything else.
Obviously they haven't started yet, but it makes me really hopeful that something is coming down the pipe.
Posts: 102 | From ny | Registered: Feb 2008
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adamm
Unregistered
posted
Spinal taps are all but useless in the diagnosis of Lyme.
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Yes terrible and Horrific, I thought they were Lyme related although I recently changed LLMD's and found they are Bartonella related.
posted
With chronic Lyme disease, scary, debilitating neurological things are standard.
Many of the co-infections (other diseases passed on by ticks, even at the same time as Lyme is injected) cause brain infections, as well.
Chronic Lyme disease (after one year of signs and symptoms, it's called that) is defined as being a neurological disorder: neuroborrelliosis, a brain infection of the Lyme pathogen.
For a list of signs and symptoms--for adults and unique ones of children--see a book, Coping With Lyme Disease, by Denise Lang. There are current books on the market as well, with patients' stories.
See also www.ilads.org, Dr. Burrascano's 33 pages of tips for 2005--there is a list and a beginning way of telling if Lyme needs to be properly assessed, using a form.
Seeing a good list of the neuro signs and symptoms was comforting, for me. I'd come home: "Yes, I feel very strongly that I have chronic Lyme disease," I'd thought.
posted
Oh Yeah! I had severe neurological, cognitive, and other multi-system imparments/symptoms.
My spinal tap (the worst experience of my life) was normal except for non specific elevated iGg antibodies (neurologist had no idea what this was caused by)
All scans and MRI's were normal; all blood tests were normal; I even had a false negative Lyme test that said normal.
I had a stack of normal test results that when compressed is about 1-1.5 inches thick, but my brian was turning to mush, my body convulsed severly, every muscle set spasmed and twitched, I could barely walk and was in constant pain with other bizzare symptoms.
I thought I was dying and no tests showed a reason why I was in this condition. According to the tests, all I had was proof to the contrary, they looked healthy!
Then, online, I found Lyme disease and discovered what I had, regarless of the first test...see my story link below.
recently after being formerly diagnosed by an LLMD last march I had a SPECT scan done (I think in January) for lyme (different from MRI)and it showed many different forms of brain damage from the disease. I have heard not everyone has good results from a SPECT scan for Lyme but mine showed damage in my entire brain.
If you send me a private message I can tell you where and who did the scan. The doctor that ordered the scan only trusts 2 places to get accurate results consistently.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Yes, sadly I had horrid neurological symptoms shortly before I got my lyme diagnosis. My "duck" felt for sure I had had a stroke since I couldn't walk, was jerking around on one side of my body but numb on the other. And I was slurring words. It was HORRID HORRID HORRID.
He did yet another MRI at this time. Had had other MRI's, CAT scans etc looking for anything like M.S. etc, years earlier. But with this last test, the MRI came out CLEAN yet again.
So with that, the doctor felt these symptoms obviously were all in my head and felt I needed psychiatric evaluation. I was blessed that I had started seeing a N.D. and when he heard this, HE ran the Igenex and the rest is history.
But sadly, many of us are having some pretty rough neurological issues but nothing shows up on MRI's or anything which has doctors questioning our sanity. Good luck!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I had severe depression, anxiety, brain fog, inability to concentrate. I was unable to work, read the paper, work on the computer, etc.
Before I found my LLMD I found a Psychiatrist who said my physical symptoms of pain, etc were not in my head and believed me that there was something really wrong. I cried just at the thought that someone believed me!
Of course, she didn't know what was causing the symptoms but she did have me try Cymbalta to help with the mental symptoms and hoped it would help some with the pain too. Cymbalta has been found to help diabetics with neuropathic pain.
Well it worked. Helped a ton with the anxiety, depression and brain fog. Happily it took the edge off of my fatigue too!
I was able to go back to work after starting Cymbalta. It's not a cure all but it really took the edge off for me and got me part of my life back.
It is so difficult to stay positive with the constant pain of the this disease. I am very grateful to have found something to help me cope while I recover.
Posts: 23 | From East Coast | Registered: Feb 2008
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