Topic: Headaches - Lyme Brain - MRI or Spect Scan?
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
The constant headaches and other strange symptoms worrying me enough to ask for tests.
Was thinking to ask for MRI with contrast.
Reading here I see folks have done Spect scans.
I have had brain MRI's. I don't know anything about Spect scans.
Is one considered better? Tks any help.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
The brain spect scans will find something called 'hypoperfusion', which I believe shows lack of blood flow through the brain. This is very common with neuro lyme.
An MRI with contrast may show some 'lesions' that could be indicative of Lyme Disease and MS (some other things too - such as venous malformations and more - I know there is a thread on this here).
A study recently published shows that long term ABX has reversed hypoperfusion in the brain by taking brain spect scans before treatment and following treatment.
posted
Very few studies using brain imaging have been done. Columbia has used both SPECT and PET with some success. MRI's look for damaged tissue which is a fairly crude method for Neuroborreliosis. It costs about $500 if you get a competitive price. SPECT and PET scans look for function. SPECT shows blood flow which is indicative of functioning brain cells need for O2.
Pet scans use a radioactive glucose (FDG) and can detect the uptake of glucose which also indicates the functioning or activity of brain cells. If you can find a neurologist willing to look at a scan for Lyme, you can get competitive pricing on all scans.
I paid $1800 for 2 PET scans which would have been over $10,000 had I just walked into Stanford or UCSF. The cost range for scans can be as bad as 5 to 1.
So in general, MRI shows serious damage while SPECT and PET show the more subtle level of funtion in parts of the brain. Its difficult to find a neurologist that would recognize the fingerprint of Neuroborreliosis in any of the scans since almost non have seen it and all I have seem dismissive of Lyme.
MRI's appear useless for Neuroborreliosis. I have had all 3. I have had an MRI with contrast 4 times since I believe my infection began. They all show small white hyperintensities which can be caused by many things so are considered non-specific plus they move around on each scan.
My SPECT at Amen Clinic had severe abnormalities but they were unfamiliar with Lyme's effects. It did show many hypo-profusions or area's of under-activity. It cost $5000 because they have a package which in my view is worthless for Lyme problems but the results were interesting but no other neurologist gave the results any credence.
My 2 PET scans, one that looks for FDG glucose uptake and the other which is new and can detect Alzhiemer's plaques. They were $1800 for both and were negative. So I feel I learned almost nothing. Unless you can find a doctor familiar with Lyme and brain scans, its a waste of time and expense. I would recommend talking with Fallon or Britton at Columbia since their group is one of the few competent groups that have used both SPECT and PET with Lyme and know how to interpret the results along with the neurological brain testing. The problem with Columbia is they are expensive. Try writing to Dr Fallon or anyone in his group and ask advice. I believe they feel the SPECT is the most useful for Lyme and the most cost effective.
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Excellent info Elara.
Thank you.
Susan,
CT with contrast is for vein abnormalities in the brain and is useless with a non-LL neuro interpreting the results also
Plain ol' brain CT... Well didn't pick up on my retinal or brain swelling... So useless as two *** on a you-know-what.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
elera,
That is interesting.......why do you think the doctors did not give creedence to the Amen clinics results?
I have heard much about this center and ADHD issues in kids. I had thought about it for my son, but didn't want the contrast....I think they use that too with that test. Also, it is expensive.
Plus, I wondered how established the data was. In addition, he gives meds or supps which always make me suspicious when there's more money to be had by finding problems.
What are your symptoms, if you have "hypoperfusion", if it's ok to ask?
Thanks-
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
I believe Amen is considered to use their SPECT scan without any validation or studies to backup of what they claim. I was pretty disappointed as they told me their doctor in LA was familiar with Lyme but when I met him at the end of the testing process, he knew almost nothing about it. I felt conned. Even though my SPECT showed what seemed serious hypo-fusion according to him, he just wanted me to take anti-depressants and Neurontin and sent me home with prescriptions. My sense is its a fancy psychiatry mill... They just use the SPECT and other tests to charge more money and provide what seems like "Evidence" but in the end, nothing is different from a regular psychiatrist except the price....
I don't think their TV infomercials help their credibility... I went to Columbia for their second opinion service for Lyme and they really do understand Lyme and treat real people and do real studies and are not IDSA cronies...
Posts: 53 | From Jupiter | Registered: Aug 2013
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
For me, the symptoms of hypoperfusion seem to be fuzzy, wobbly head with buzzing sensations. I have 'whooshing' and sizzling tinnitus as well. Sometimes there is mild burning and tingling, and bug crawling sensations.
I have had this for a long time. It did get better for a while, but is now back. I wanted to have another brain spect scan but my insurance would not cover second time around. I think it would have been almost $5000, so I opted out.
Oddly enough, my insurance will cover an MRI of the brain because of that one lesion that showed up when I initially lost hearing in one ear. It has always showed up in subsequent MRI's. They think it is a veinous malformation that I was born with because it never seems to change in size or go away.
I don't want anymore MRI's at this point. They hurt my ears and who knows what all that contrast dye has probably done to me?
Posts: 2387 | From New England | Registered: Aug 2011
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