posted
My new LLMD has given me an order for either a PET or SPECT, which is to be done through my primary care physician. Does anyone know whether one is more beneficial than the other? I know I can get a PET here at the local hospital, but I'm not sure about the SPECT.
Anyone?
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
isn't PET is very expensive? i'm surprised it's being offered...
in research that uses scans, SPECT using the HMPAO radiotracer is what most lyme related research and a lot of neuropsych/cognitive research is based on i think.
edited to add: did you know that there is a scan for parkinson's? only a european would. general electric, an american company, makes a SPECT radio tracer that binds to the dopamine transporter called DaTSCAN. either the only place they are selling is europe, or only europe is buying. in north america, it is treated as vastly preferable for someone to go undiagnosed for as long as possible, and indefinately if possible. hoping patients' families and the public will take on the attitude that "oh, they're just being an old person."
Posts: 244 | From Ottawa | Registered: Dec 2005
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Cobweb
Unregistered
posted
I've had both.
The PET scan though was for further diagnosis of cancer. A radioactive isotope was injected into my system. Cancer "feeds" on these, so after the injection my body was scanned from pelvis to shoudlers for any "hot spots".
I was a wreck going into the test- probably because I was so scared of what they might find. I had already had two surgeries for cancer.
I literally prayed for God to hold me during the test I was so scared-and guess what- I became so relaxed I fell asleep during the scan!!!!! It is not noisy like an MRI.
The technician said they wouldn't charge me extra for the nap.
Anyway-No further hot spots- hip hip hooray.
Just to clarify-I credit my prayers with the ability to help me relax.
I credit the "all clear" report to the doctors who treated me. _________________________________________
The Spect Scan of my brain was done specifically for Neuroboriolisis, or however you spell it.
Another injection of a different type of dye. And the machine that scans feels more like a small UFO hovering around your head. Not scary to me, almost comical.
This Spect Scan was especially helpful in diagnosing my Lyme Brain-my treatment changed course from Orals to IV's and consequently my recovery changed from slow go to noticable improvement.
I will never regain all the cognitive and mental skills I had pre-lyme-but at least now I have a shot at life with reasonable abilities.
Wanted to add-both tests were covered by my insurance.
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My husband's new LLMD also recommended a SPECT scan of the brain for the same reasons that Cobweb mentioned. His thought is that it will help determine the effects of the neuro-lyme. The goal is both to help decide on whether neuro-lyme is still a major treatment target (versus co-infections), and also to build a case for insurance covering possible future IV treatment.
I was able to locate the nearest SPECT facility by going to our university medical center website's "find a doctor" page and typing in "SPECT." Perhaps you can do something similar?
Husband has not been scheduled yet, so I can't comment on the utility for us, but Cobweb's post makes me feel very hopeful.
And Cobweb--what wonderful news about your PET scan. Husband has been through cancer treatment, and a PET as well. There's just nothing like getting that "all clear" afterward. Congratulations!!!!
Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
The consensus seems to be SPECT, which is good news, since my hospital does perform the SPECT rather than the PET. I was misinformed. I'm covered through my insurance for the SPECT, as long as my primary care approves the order. I think he will, if my LLMD pushes him for it.
Thanks everyone....
-------------------- 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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about hypoperfusion (basically decreased circulation) and how a SPECT may be helpful in that regard:
My local CFS group reprinted, with permission, a handout of this page in '93, but I did not see it until a few years ago.
The images [on the page] speak for themselves. Hope you can locate the book or other works by the authors. 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 for those with lyme. However, specifics for lyme would then be discussed with experts who use SPECT for lyme.
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