Topic: It's Official...I have Lyme Brain! Anyone know how to interpret SPECT scans?
Tracy9
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Member # 7521
posted
Phew, I finally have an official stamp on my Lyme Brain. Only my fellow lymies can understand my glee at reading just how brain damaged I truly am!
Anyone know how to interpret this into things such as, "this is why you can't remember your firstborn's name" or "this would explain why you poured Tabasco sauce into your husband's Mepron when you were mad at him"?
Please note I took 30 mg of Adderall and 90 mg of Cymbalta before the test, and they only did it because I begged. They claimed they told me not to take my meds the morning of the test, but hey, I don't remember that! I mean, c'mon, I'm not here getting this done because I'm a rocket scientist, HELLO!!!!
Bear in mind in reality it is most likely WORSE than this shows, since Adderall is clearly documented to make your SPECT improve.
With that said, the report states:
"The patient took her medications before the study and those medications could affect the study. Hence, this study may not accurately reflect the perfusion in the brain."
Here goes:
1. Patchy, decreased perfusion in both frontal lobes; mild
2. Mild to moderate patchy hypoperfusion in both parietal lobes.
3. Moderate hypoperfusion in both temporal lobes.
4. Decrease in perfusion in the basal ganglia.
I would love to hear your feedback. I'll probably have it repeated to get a more accurate study at some point, but for now I sound sufficiently screwed up, dontcha think?
(Edited 342 times for spelling. My spelling is much worse now that I've read this report.)
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lyme in Putnam
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I took the spect scans twice at Columbia and they both said the same thing. Global heterogeneous hypoperfusion which basically means from what I gathered is slowness of circulation in the brain. Four possibilities of this
I did the 2nd one a year after my first round of treatment. Lyme can cause encephilitis and vasculitis, so in my case it kind of boiled down to we have proof of something, but can be caused by other things. I'm currently on rocephin and zithromax I have lyme and bart.
Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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AliG
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-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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merrygirl
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Congrats tracy!?
I am a little concerned about this statement:
The patient took her medications before the study and those medications could affect the study. Hence, this study may not accurately reflect the perfusion in the brain
makes this sound like the test is not legit or something.
Tracy9
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posted
Yes, Melissa, I'll be printing out a study on how Adderall affects SPECT scans to bring with me to SSDI hearing; it shows clearly that it makes your SPECT improve.
In fact they use SPECTs to prove how effective Adderall is. I had the same concern, am worried they will misinterpret it in the other direction.
So what it really means is that I'm even worse off than this shows.....I'm going to have it redone, Blake really should have one too. Will ask Dr P for a script for Blake and I each to get one at our appt on Monday.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
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posted
I think it means your dame bramaged....
No seriously.
Decreased or slowed blood flow would result in slower reaction times.
Slower processing times, etc.
I don't want a spect scan done.
I think it may depress me to see how much grey matter is affected.
I would just rather keep living in my make believe world of the mentally challenged.
I will just keep living up to my "blonde" hair.
That unfortunately is more believable then me trying to explain that
Yes I really have a Master's in Education...yes I have Lyme disease...
Yes it is in my brain......
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tracy9
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Oh, Geneal, you sure are making me laugh!!!
What's going to be REALLY scary is if my husband gets one....although he used to be a Vice President at Traveler's Insurance, now I find the milk in the cupboard where the glasses go....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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disturbedme
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Tracy - did you ever have an MRI and was that clear? I'm just curious since I had an MRI and that was all clear.
Wonder if a SPECT would show more.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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timaca
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Member # 6911
posted
Viral infections can also cause abnormal spect scans. So, it is good to have objective proof that something is wrong, but you cannot pin it on lyme. Do get tested for viruses as well. In my case (my brain spect was abnormal) we now think it was due to both viral and bacterial infections in the brain.
"In about 70% of chronic Lyme disease patients with cogntive symptoms, brain SPECT scans typically reveal a pattern of global hypoperfusion in a heterogeneous distribution through the white matter.[6] This pattern is not specific for Lyme disease; it can also be seen in other CNS syndromes such as HIV encephalopathy, viral encephalopathy, chronic cocaine use, and vasculitides. However, this pattern is different from what one would see with normal controls, patients with primary depression, patients with Alzheimer's disease, and patients with focal brain damage as in stroke."
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Tracy I had mine done at Columbia and showed moderated to severe hypoperfusion. At that time I was way sicker becuase of bart, specially very low procesing after bart tx my neuro sx went away. I used to feel at times somehow mentally retarded.....people would talk to me and I would not understand.
Posts: 983 | From The sky | Registered: Feb 2005
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Geneal
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posted
That is okay Tracy.(aboutn the husband)
My husband is now making up stories of things he thinks I said.
He is undertreating, not treating and using my treatment against me.
He always makes a point of saying that he isn't the one taking all the meds.
I am always the one pointing out that he needs to.
I am getting better....slowly but surely.
Maybe we can send our husbands off together.
Then you and I can relax by a pool with a non-Lymed brain Cabana boy!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tracy9
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Oh my God, Geneal, you are just too funny! Except as everyone here who has met my husband will attest, I'm sure.....he really takes good care of me!
I'm pretty lucky to have him, and I really cannot complain...well, I can about certain things, but overall he is very forgiving and supportive.
I mean, how many husbands can look back and laugh about thier wives pouring Tabasco sauce into their brand new bottle of Mepron?
However, it did take me years of badgering him to convince him his Lyme hadn't gone away, that the fact he'd lost six or so jobs in as many years really WAS related to his cognitive functioning (or lack thereof), and that he really needed help.
Our PCP ended up doing a routing Western Blot at his annual phyical due to his history of recurring lyme, and nine years later, he showed 9 out of 10 bands. So he finally acquiesed and began real treatment, and admitted he was in fact quite ill.
But a cabana boy.....one question about that one. Do we have to share with Dilly????
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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merrygirl
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Glad you are bringing that study with y ou. I was just concerned that some jerk would read that statement and deny you or something...
Good Luck Tracy!!!
Melissa
Posts: 3905 | From USA | Registered: May 2007
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Tracy9
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Thanks for the heads up, though, Melissa. Very good thinking. This is it, my last shot.....so I can't afford to miss anything.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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quote:Originally posted by AliG: Try looking here:
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
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We only have to share the Cabana boy if Dilly asks.....nicely.
I am all about sharing....after my foot and back rub of course!
Hope all goes well at your disability hearing.
I am hoping to go back to work.
If not by January (seems less likely now),
Then by next school year.
We really need me to be out there making some money.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tracy9
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quote:Originally posted by Lymeblue: Tracy I had mine done at Columbia and showed moderated to severe hypoperfusion. At that time I was way sicker becuase of bart, specially very low procesing after bart tx my neuro sx went away. I used to feel at times somehow mentally retarded.....people would talk to me and I would not understand.
WOW, it is hard for me to imagine you being mentally slowed! You are so smart, so bright, so intuitive....hard to imagine!
All I can say is, so glad you got better and helped others like me!
You describe your former symptoms very much the same way Blake describes his. His SPECT should be interesting to see when he eventually gets one.....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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johnnyb
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Totally clear that you are NOT getting proper blood flow in the brain... I hope they are not too STUBBORN to get this at the SSDI hearing.
I'd love to get a SPECT but they keep throwing "it's non-specific" or "you already know you have lyme" at me, depending on whether I'm talking to a duck or an LLMD.
Still, especially with my MRI findings, it'd be interesting to see what shows up on the SPECT.
- J
Posts: 1197 | From New Jersey | Registered: Jul 2005
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johnnyb
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Totally clear that you are NOT getting proper blood flow in the brain... I hope they are not too STUBBORN to get this at the SSDI hearing.
I'd love to get a SPECT but they keep throwing it's non-specific or you already know you have lyme at me, depending on whether I'm talking to a duck or an LLMD.
Still, especially with my MRI findings, it'd be interesting to see what shows up on the SPECT.
- J
Posts: 1197 | From New Jersey | Registered: Jul 2005
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johnnyb
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Totally clear that you are NOT getting proper blood flow in the brain... I hope they are not too STUBBORN to get this at the SSDI hearing.
I'd love to get a SPECT but they keep throwing it's non-specific or you already know you have lyme at me, depending on whether I'm talking to a duck or an LLMD.
Still, especially with my MRI findings, it'd be interesting to see what shows up on the SPECT.
- J
Posts: 1197 | From New Jersey | Registered: Jul 2005
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johnnyb
Frequent Contributor (1K+ posts)
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posted
Totally clear that you are NOT getting proper blood flow in the brain... I hope they are not too STUBBORN to get this at the SSDI hearing.
I'd love to get a SPECT but they keep throwing it's non-specific or you already know you have lyme at me, depending on whether I'm talking to a duck or an LLMD.
Still, especially with my MRI findings, it'd be interesting to see what shows up on the SPECT.
- J
Posts: 1197 | From New Jersey | Registered: Jul 2005
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sometimesdilly
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did someone say.. cabana boy???
geneal- sweet gal, you have thangs backwards.
i already have a cabana boy. and, you'all can share MY cabana boy, and you don't even have to ask nicely.
we all know its difficult to ask for anything nicely when one is drooling, yes? Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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did someone say.. cabana boy???
geneal- sweet gal, you have thangs backwards.
i already have a cabana boy. and, you'all can share MY cabana boy, and you don't even have to ask nicely.
we all know its difficult to ask for anything nicely when one is drooling, yes? Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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dilly has posted on the pressing topic of cabana boys, but the post has poofed...
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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dilly has posted on the pressing topic of cabana boys, but the post has poofed...
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tracy9
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Well, it is back dilly, so now we are getting ready to drool.....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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