I am scheduled for an EEG on Wednesday ? Anybody find this test useful? Do Lymies test abnormal . I did have an abnormal brain spect ( hypofusion)
Tony
-------------------- Dx 3/2008 Pos. WB and Bart- igenex Levequin 500 mg March 2008 Amox 6000 mg - May 2008 Doxy 400 mg - June - oct Biaxin and Flagly 1000 each, oct-dec Zitro, Malarone and Flagly Jan - feb Remission for 6 months Relapse Sept 2009 zithro/flagyl Posts: 130 | From canada | Registered: Mar 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Just wondering why you have been referred for this test.
Are you having neurological "events" of some kind.
Normally, I'd suggest getting a QEEG or a "Functional EEG" as they are better at assessing the neuro problems of lyme patients.
But your test is tomorrow, so it's probably best to just go with what is ordered.
It should show brain wave activity and if you have any surges of brain power in a particular part of your brain - or sudden drops, perhaps.
This will not show all parts of your brain but only the parts that the electrodes can monitor. And, if you normally have some surges but do not during the test, that would not show - only what is happening at that time will be recorded.
A QEEG or "Functional EEG" could show the difficulties in thinking - of computer a math problem or processing a question where thought is required.
A regular EEG is usually resting, although they will probably have the electrodes cause flashing of lights in your eyes - but from your brain. There may or may not be some sort of computer checker board that would pulse on a screen.
There is no way, however, that this is do anything to confirm a lyme diagnosis. It may help your doctor understand what is going on with brain function and that may or may not be related to lyme.
Most often, an EEG comes up "normal" - I had several and the doctors all said fine, even with seizures during them.
But I also had 3 QEEGs and all came up very abnormal.
One problem is that an EEG does not concern itself with slow brain waves as a QEEG can. And the slow brain waves are a big problem with lyme patients who have fatigue and brain fog.
Still, your doctor obviously has reason to order the test. I hope your doctor is LL and knows that this won't snow everything. I hope this tells you what you need to know to proceed with getting better.
[editing to add: I misread your statement. After posting all that below, I see now that you said you already had a brain scan and it showed hypoperfusion. So, you probably know all from here on but since I already pasted it all together, will leave if for others who may be interested. I simply must learn to read the questions correctly the first time. ]
About a SPECT SCAN Yes, lyme patients often have hypoperfusion that is usually able to be seen on a SPECT. An EEG will not show hypoperfusion.
With treatment for lyme, the hypoperfusion gets better.
Many years ago, (before lyme dx) I got a copy of this as a handout from our local CFS support group. It is not available to see on the web, but Google books MIGHT have it - or you can call the Nightinggale Foundation to see if they might send you just the page with the SPECT on it.
Note, too, the conditions under which hypoperfusion increased in this exercise intolerant patient:
- through www.Amazon.com about $28.00 Some libraries may have it.
Buying options through Amazon - or Google the book title for others. Amazon has 3 customer reviews.
Book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome (Hardcover)
by Jay A. Goldstein (Editor), Byron M. Hyde (Editor), Nightingale Research Foundation (Corporate Author), P. H. Levine (Editor)
p. vii. Xexon SPECT scans - Has three sets of 3 images each:
1. Resting: `` . . . represent abnormal resting state of an M.E./CFS brain. There is a perfusion defect . . .''
2. Immediate Post-Exercise State: `` . . . significant decrease in perfusion . . . . The functional resting state [has become aggravated]''
3.-- 24 Hours Post-Exercise: `` severely decreased brain perfusion of the same patient 24 hours after the brain has been stressed by physical exercise. This 24 hour delayed effect may explain much . . . . ``
- there is a note to the effect that a normal, healthy patient will probably have increased brain perfusion after similar modest exercise. (Yet, the ME/CFS patient had severe decreases.)
The Nightingale Research Foundation is a Canadian registered charitable organization dedicated to the study and treatment of Myalgic Encephalomyelitis (ME) ... www.nightingale.ca
The book likely is still relevant regarding much. You can obtain the book, or call the Nightengale Foundation for current research regarding SPECT and advice for the most accurate image.
This relates to CFS and I see the connections for those with lyme. However, specifics for lyme would then be discussed with experts who use SPECT for lyme.
-===================
poster's note: This is not to scare people. Not everyone with chronic fatigue will have hypoperfusion - it may be a sub-set of patients (it relates to exercise intolerance).
Recent literature on this by the same authors might be located to see what is new.
posted
This was ordered by neurologist, not my LLMD.
I am trying to understand my headache issue and head pressure issues and possible treatment options
Thanks for the information on QEEG
-------------------- Dx 3/2008 Pos. WB and Bart- igenex Levequin 500 mg March 2008 Amox 6000 mg - May 2008 Doxy 400 mg - June - oct Biaxin and Flagly 1000 each, oct-dec Zitro, Malarone and Flagly Jan - feb Remission for 6 months Relapse Sept 2009 zithro/flagyl Posts: 130 | From canada | Registered: Mar 2008
| IP: Logged |
posted
I had an EEG done before I was diagnosed, but had been sick for over a year. I'd been getting progressively worse and at the time of the EEG, I had an incredibly bad headache, and many neuro symptoms such as droopy eyes, numbness in all of my extremities, sleep paralysis, and weakness to the point that I couldn't walk without help.
All of the tests that had been run on me were negative until the EEG. (well, I did have white spots on my CT [or MRI?] but they said that it was "normal for your age".) Mine was ordered by neuro also.
I was so relieved to have an abnormal EEG. It at least proved that there was something organically wrong with me, although the neurologist said that the pattern of the waves was not something that she recognized. They thought it might have been due to an antidepressant I was on at the time, but I knew it wasn't.
I knew it was abnormal while the tech was running the test, bec she asked me "Do you have a headache?".
Anyway, that's my EEG experience. If your EEG is abnormal, it might be interesting to see if we can get someone to see how they compare. Then we could see if there might be a specific pattern for Lyme disease.
Patti
Posts: 975 | From California | Registered: Apr 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
If the lab techs can report on all that they see - especially if they see slow brain waves, that might be good.
Two of the techs who did 2 different EEGs for me both told me that I had slow brain waves but that the report would not show that. One went on to say that the doctors don't consider that to be relevant but that he thought it was in my case.
The techs both also said they were not allowed to tell me these things but that they felt I deserved to know since the report would say all was fine and I, clearly, was not.
The were right, the reports were "normal"
- but if you can ask if ALL the information is conveyed, that may be of help.
Slow brain waves are common in some lyme patients, meaning elevated readings of delta and theta and lower readings for alpha and beta.
posted
I completed the EEG today and the tech's were not suppose to tell me the results. While not telling me directly, she eluded that the results are normal. She did ask me if I was asleep during the test,I was not.
So I have an abnormal Spect, normal EEG and still have my headaches. My next step is a another Brain MRI. The last one in May 2007 was normal.
One my last remaining symptoms are stiff neck, headache and head pressure. I see my LLMD on Feb 12th and trying to get as much information as possible for the next phase of my Lyme Recovery journey.
I think IV or high dosage of Doxy may be my next phase.
thanks to all
-------------------- Dx 3/2008 Pos. WB and Bart- igenex Levequin 500 mg March 2008 Amox 6000 mg - May 2008 Doxy 400 mg - June - oct Biaxin and Flagly 1000 each, oct-dec Zitro, Malarone and Flagly Jan - feb Remission for 6 months Relapse Sept 2009 zithro/flagyl Posts: 130 | From canada | Registered: Mar 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Glad to hear the test went okay. I wonder, though, if the tech asking if you were asleep during the test was an indication of heavy brain waves of delta and theta. During daytime, those are indicative of brain fog and trouble staying alert.
That happens frequently with lyme patients.
-
If you do get an MRI, you might do a good search on Chiari malformation and have the MRI image the base of your skull and neck precisely according to how it would be to rule out Chiari - that can cause neck and head symptoms - or it could just be that treatment for lyme needs to be adjusted.
The thing is, though, that you were just dx last May and it does take a while after not having treatment for the first 2.5 years after exposure. An MRI may show some things, maybe not.
Symptoms are there and are troublesome, so your LLMD would normally go with that. It's good to rule out "other stuff" sometimes, but lyme certainly does not show as you might expect on imaging tests all the time.
For the kind of pain and dysfunction most of us deal with you 'd think the tests would come back with flashing neon signs.
Good luck with however you decide to proceed but pulling out the big guns sometimes is no faster than just staying the course. I hope you have a good LLMD who has treated lots of other patients with TBD.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tony,
Glad the test went smoothly, but I too would wonder why you were asked if you were sleeping. Does that mean they weren't getting an expected response at certain times.
Let us know how the doctor reads it.
My only experience with an EEG was BEFORE my lyme diagnosis and when they were still sending me to all the various specialists to find out what was causing all of my symptoms.
For me, the doctor told me that the EEG showed that I was having "mini seizures" which he also said was probably "migraine disease". I really wasn't having headaches at this particular time and that's when he said it's "migraine disease" and not the same thing?????????
Then he followed it up by saying that something else is definitley going on and sent me back over to the endocrinologist and around and around I went.
I hope you can get this all figured out and on a good treatment plan for how ever this turns out. Good luck to you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/