I had a nuclear SPECT scan done 2 weeks ago at Columbia U. and got the results. I've been on oral abx for 1.5 years and am seeing a good LLMD.
What do these results mean? They sound pretty bad to me? I called my LLMD and he will probably call and talk really fast. So if anyone else can shed some light, I'd be delighted!
"Moderate to severe, global, cortical hypoperfusion with heterogeneity. This hypoperfusion involves the white matter. This perfusion pattern is consistent with encephalitis or vasculitis, such as from infections (e.g. Lyme disease), autoimmune causes or secondary to some medications."
Thank you all so much in advance!
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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Cobweb
Unregistered
posted
Well, for me "bilateral cerebral perfusion defects in the frontal, parietal and occipital lobes" meant IV Rocephin.
At the bottom of the report it said "information regarding spect brain scans in patients with clinical lyme disease-subsequent reversal(keyword for me) of cerebral perfusion defects after appropriate therapy has been shown in clinical studies to correlate with improved neuropsychological status and favorable response to treatment in cases of neuroborreliosis"
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Allie-
word for word what i saw on mine (before tx)-mine also mentioned i had white matter disease.
hope your llmd helps you with what it means in your case. i know it sounds scary, and they are results you should not have to interpret on your own. is your llmd out of state too?
one thing DR. F mentioned to me that may help- the SPECT is not a snapshot in real-time of what your brain looks like. it could be that some of the progress you've made on abx - if you have?- has not shown up yet.
and in any case, though it sounds bad, the situation isn't hopeless, and it doesn't mean you can't get your brain much much better.
hugs- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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I had a long convo with my LLMD in CT at my last visit even before the SPECT scan results about his desire to try IV Rocephin. The idea scares me to death, of course. The hitch is that he does not feel comfortable prescribing it over state lines and at a distance too great to carefully monitor for problems.
I'm about 120 miles of crazy highway away from him. I will continue to try to find someone in RI to prescribe Rocephin. I can't let my brain die.
I'm juggling a full time job and 2 little boys (5 and 7 years). If my husband wasn't and angel in disguise I don't know where I'd be now.
How long, Carol, did you need to be on IV? If it comes to it, I'll rent a cheap apartment in CT, try to telecommute and see my family when possible. See, now I'm crying at my desk... It happens all to often these days!
But I do appreciate the words of hope!
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
There is hope out there but I am not a Dr so am far from knowledgeable...Just going thru baptism by fire here.
Abx certainly should help..But throw in some other things. A super multi-vitamin, some Omega oils, fluids, exercise, a better diet(Trying South Beach here)...Our daughter was also placed on a mood stabilizer and psych med. Some positives within 2 days..They continue over a month later.
And positive attitude. New activities to retrain areas of the brain. Force yourself to do new and challenging things.
A low dose ibuprophen a day.
We were given pages of web sites and things to consider, from bio feedback, to accupuncture to hypo baric treatments. We have not done them yet.
I saw a portion of the View a few weeks ago. Whether you like Rosie or not, she talked about her depression and she does some inversion exercise where she gets into a sling and turns upside down for awhile. She said it has helped. Not sure if Donald Trump would agree, but if it can help with blood flow to the brain, it might be a good thing to add.
For any of these ideas, check with a Dr first.
The clinic my daughter went to sent us home with a binder with copies of all of the spects,pages of findings and pages of suggestions.
It was all very scarry. But there is hope. We were told that most of it can heal. Good luck. lmt lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Do you guys think it's necessary to get a Spect scan?
Does it help with disability claim?
Does it really make any differnce in how the treatment goes?
I have not had one.
Bad day.....Cathy
Posts: 88 | From Carnation | Registered: Feb 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Cathy, No, I personally do not feel that everyone needs a brain spect scan. The llmd suggested one when it became obvious that our daughter's cognitive skills were worsening.
But I do think that most would be surprised to see that many things can damage the brain. Infections, toxin exposures, alcohol-tobacco and drugs, along with injuries.
Our daughter had been a very good student until the tick borne issues took over and she was able to graduate..There was a day when she could no longer determine that 30 minutes was a half hour and a few other similiar things. The Dr felt she was going down hill and ordered a local spect scan.
It showed damage but was not a very sensitive scan. The Dr recommended we seek help at a brain damaged clinic. Along with the tick borne diseases, she also has had a traumatic brain injury.
In our situation, it was vital to help our daughter. All cases are not the same. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Cobweb
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posted
I was awarded(strange choice of words)disability before I even had the spect scan. For me it helped decide course of treatment-to IV.
Allie-I have been on IV for two months-we, LLMD and I, take it month by month. My next appointment is May 1st when we will decide whether to continue or not.
Personally I think the Rocephin has helped the most so far. I'd just as soon stay on it for a long time.
It's true though , I was seeing the LLMD every two weeks at first, and getting weekly blood draws . The one glitch in the picture is my white blood counts have dropped considerably. Doc thinks it may be due to Herx.
So I may have to stop for a while until they come back up. We'll see.
posted
I spoke with my LLMD and he said that 2/3 of his patients have abnormal SPECTS. I didn't ask how many had "moderate to severe" though. Again he said IV is a good option but that I'd need to find a doctor to prescribe it. I have an appointment with my PCP on Saturday and it'll be interesting to see if she is amenable. Of course the LLMD said "I've seen improvements in SPECTS after orals too". But he did imply that IV is the best course for such damage.
When I asked for an interpretation of the SPECT in layman's terms to present to my PCP he gave me the references for 3 scientific publications. He makes me laugh.
Fortunately I work at a University and was able to access them. I forwarded them to my PCP.
These are the papers he suggested (one even co-authored by Steere):
Sumiya H, Kobayashi K, Mixukoshi C, Aoki T, Koshino Y, Taki J, Tonami N. Brain perfusion SPECT in Lyme neuroborreliosis. J Nucl Med 1997 Jul; 38(7):1120-2.
Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intraveneous ceftriaxone. J Infect Dis 1999 Aug; 180(2):377-83.
Fallon BA, Das S, Plutchok JJ, Tager F, Liegner K, Van Heertum R. Functional brain imaging and neuropsychological testing in Lyme disease. Clin Infect Dis 1999 Jul: 25 Suppl 1:S57-63.
Thank you all for the help and kind words. Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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Tomasz
Unregistered
posted
my brain SPECT: "Numerous tiny areas of decreased blood perfusion in both hemispheres of the brain" (in english)
"Liczne drobne upośledzenia perfuzji znacznika w obu p�łkulach m�zgu" (in polish)
It can be lyme. It can be an autoimmune disease. It can be anything.
my question: What autoimmune diseases can make my brain full of holes??
posted
What kind of DR orders a Spect scan, gets the results and tells you to look it up ( for it's meaning ?? ) I'd run from this guy or scream at him
Posts: 355 | From NY | Registered: Jan 2006
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posted
I too, have had a SPECT scan done at Columbia 6 years ago. I then had another SPECT scan done elsewhere 5 years later. It was a reputable lab.
My first scan showed moderate problems phrased like the above. The second scan showed only 2 very samll areas with a problem.
I never took IV abx. I DID take oral abx and IM bicillin. I did use various alternative meds/supplements. You CAN heal. I did make an extra effort to "retrain my brain" with crosswords and sudukos. It was horribly hard and frustrating at first. I was always a "quick" learner. This was WORK. But it did work.
Am I healed? Not completely. It has been 6 years of treatment, 3 1/2 years untreated/misdiagnosed. But I am 99% well 95% of the time. I'll take that. For now.
You will get better. Trust your gut. Keep an open mind on alternatives. Read. Learn as best as your lyme brain will let you. Good luck.
Posts: 132 | From SE Pa | Registered: May 2006
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