I am going to approach my doctor to see if he will order a SPECT scan. I have been treating lyme for 10 months and still have neurological symptoms. I kind of want the scan just out of curiosity sake. My question is do most people have this scan prior treatment, or have some had while under treatment.
Thanks Tracy
Posts: 41 | From Singapore | Registered: Jan 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I haven't had one myself.
However, it is typical to do one in the beginning of treatment (or even prior); documenting the hypoperfusion that is usually seen with lyme.
Then, you have a "baseline," so that hopefully your SPECT would improve a lot following treatment.
posted
Don't do it! I thought I would need one to prove I had Lyme, but my Lyme came back positive through IGeneX anyway.
I regret having one though because I'm electrosensitive.
As soon as the girl turned the machine on, I had the urge to urinate, and it did not let up until she shut the machine off 45 minutes later. I think it cemented my nerve damage, too.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I think the best reason for the test is for personal safety. If hypoperfusion (decreased blood flow) is a problem that is vital to know regarding how much you can exert yourself right now.
(Although a stressed liver can also result in exercise intolerance as can other factors.)
The SPECT might have other information so you and your doctor can better target tx.
I had one done about '95. Although by then I had some chemical sensitivity, the lyme tests had not been done. I was fine with whatever they injected and the test was not loud or uncomfortable.
Knowing what I know now though, I'd have a plan to know what they will inject and then have carrot juice and water ready afterward to help flush it on out. You'll have to ask someone who knows about how to do that effectively and if any residue is left in the body. that would be a consideration.
My SPECT seemed to show nothing. Although I'd been passing out about 3 x a day and severely ill, the neurologist said "nothing is wrong with you." I wonder had I been able to exercise the day before if it may have been a different scan.
I wonder had a lyme expert ordered or read the test if they would have the same conclusion.
Personally, I've had too many tests that were done the wrong way to gather the necessary information. Hopefully, you can have a true lyme expert order the test with any specifics AND also read it.
Regarding what the authors below found in a CFS/ME patient, If we set aside the lyme dx, the authors here are looking at brain changes in a fatigued brain. There tests may be relevant to lyme.
- 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 bain 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. However, specifics for lyme would then be discussed with experts who use SPECT for lyme.
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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.
Recent literature on this by the same authors might be located to see what is new.
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[ 29. February 2008, 01:38 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I had a brain spect scan a couple of years ago at the start of treatment. Having the test was no problem for me. I was glad I had it done because my blood tests were never very clear and this was. My doctor explained that the reason to have the test was to be able to tell how well treatment with abx was working. In other words test again after abx. Not something I plan on doing. Karen
Posts: 82 | From east hampton ny | Registered: Jun 2006
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Cobweb
Unregistered
posted
I had been treated with orals for several months with some results-but no significant improvement.
A SPECT scan really helped open the doors for insurance to approve of IV treatment. After 8 months of IV rocephin I have had significant improvment.
Having a SPECT scan ,I feel, was a pivitol point in my treatment. It really was no big deal having the test, and I had NO residual after effects.
I think I owe my life to having a SPECT scan, which confirmed the need for IV Rocephin.
I have not scheduled a follow up SPECT scan-to me ,the proof is in the level of functioning I have regained.
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I had a brain SPECT scan done for Lyme disease after being in treatment for 9-10 months.
I'm very glad I had this done, the results showed to be consistent with LD.
While I've heard not everyone gets positive results, I would recommend this personally.
Mine showed several problems- lesions, white matter, poor blood flow in my entire brain...this explained a few things, as my primary symptoms left are neuroligical and cognitive in nature.
Something it did that was unexpected for me. Even after positive western blot, getting better with treatments, and having a great LLMD....The thought STILL sometimes goes through my mind...."its all in your head".
I think this is a symptom itself! Anyways, after the SPECT results It was "hard evidence" that yes it was in my head, but physically, not imaginary! I no longer have trouble with these thoughts.
This also gave the lawyer handling my disability appeal more "objective" evidence, very important.
As mentioned above in another post, it was also useful to my LLMD and the LD specialist I was seeing to make decisions in regard to my treatment.
The entire procedure was fine, no problems at all. To me it seemed much esier and more comfortable than MRI's (which never showed anything wrong with my brain....Hmmmm).
Anyhow just in my opinion, I thinks it was well worth it, of all the tests I have had in the past 4 years it yeilded the most iron clad evidence and for me was the most worth while....and as all who have gone undiagnosed, I've had many, many tests.
BJK
PS- I had this done in the boston area and can give you the doctors info if you send me a PM.
-------------------- 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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posted
Thanks for your replies, they have been very helpful. I am thinking going ahead with the test. I have had some much test done, MRI's, CT scans, the test itself does not scare me. Right know it is find a place to get it done. Have talked to GP and he is tracking down a place to have it done.
Tracy
Posts: 41 | From Singapore | Registered: Jan 2008
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posted
Interesting. I wasn't aware that an MRI would not be just as efficient. My neuro wasn't testing specifically for Lyme, when he ordered the MRI. He was mostly eliminating other things such as MS, ALS, etc. I don't have any muscle weakness or typical symptoms, so he felt I was clean of the other dreaded diseases.
I wonder if any of the facilities in my area perform the SPECT. I will have to ask my GP. Meanwhile, I am doing something, so hopefully it improves my situation [if in fact it is Lyme].
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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lymeparfait - Thanks for the detailed info.
I have a few more questions:
1. were you instructed to exercise, not to exercise - or neither -prior to test ?
2. Do you know if it can show the auditory / vestibular system itself ? I'm sure parts of the brain where those processes would occur would show, but I also want the inner ear stuff. (No more MRIs for me: too noisy).
3. Do you know if the Columbia radiologist or whoever read your SPECT - or someone else - would be able to talk with my local neurologist so that a SPECT could be done to specific measures ?
4. Might there be a medical paper on this ?
I need more information to best address the sound/light/motion triggered seizures as well as vertigo, tinnitus and severe hyperacusis. I know the inner ear tests I had point to many reasons, but I think my brain is more involved than ears.
I'm thinking the SPECT may help with some things, although I know it may not give all answers, it could also rule out something else (something easier, I'd hope).
I am just too tired to try to do any more researching. Maybe someone has a few key pieces I can show the neurologist ordering this.
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