This is the preliminary, but my Dr. confirmed with the photos. I'm getting a PICC line tomorrow now with aggressive IV therapy. This certainly explains alot of my symptoms.
If your having lots of neuro stuff in the head, I would recommend you asking your Dr. for one of these scans. For me, it will be a monitoring tool of my progress besides my subjective reports. If nothing else, my disability insurance can no longer say I have mental health issues.
The blue areas are the areas NOT getting blood flow and the purple areas ARE getting proper blood flow.
Gary
Posted by djf2005 (Member # 11449) on :
This is not that bad of a spect scan actually as far as spect scans go, although it does show there are issues...
Posted by lymetwister (Member # 19590) on :
I think it depends on the area not being perfused. In my case, I have been living in Hell.
My Doc. says it accounts for most of my symptoms.
dj, what makes a Spect scan bad. How many have you seen and what is your experience with these.
Just curious as I have never had or seen one before.
Gary
Posted by djf2005 (Member # 11449) on :
Well, unfortunately lots of us have spect scans similar to this, or in a lot of cases, worse.
The lack of activity/blood flow to the regions of the brain are no doubt in fact causing some of the symptoms.
There is no cut and dry rule on what makes a spect "bad", if there is any degree of hypoperfusion its not good for sure.
I have had 2 spect scans and have spoken to many who have had them.
It is a good diagnostic tool to show neurological symptoms, etc, and to get insurance to help pay for treatments.
IV though, is usually not magical in clearing the symptoms and making the scans normal.
In my experience, its subjective kind of like the CD57 test.
Some can have a very low count, and feel great, while other can have a high count, and feel great.
The IV will hopefully help, just don't be disappointed when it's not a cure all, because it usually is not.
Relapse rate once off IV is very high, so make sure your Dr transitions you to aggressive multi class oral combos (if in fact the IV proves helpful)
Don't worry, there are tons of options and we all have time on our side.
Good luck.
Posted by Haley (Member # 22008) on :
So insurance companies see this as a legitimate test?
I've heard that some people in the medical field don't take this scan seriously.
Isn't it about $2,000.00?
Posted by kitty9309 (Member # 19945) on :
The report calls it "LYMES DISEASE"
Where was this done?
Posted by Pinelady (Member # 18524) on :
I would say it is about as reliable as a scan for
thyroid. That being said if it shows something it
is valuable....Glad to hear you are not mental any
more..LOL We know you aren't.
Posted by karenl (Member # 17753) on :
Gary,
is this scan done with radiation or like a MRI or is it harmless? Did you need a contrast IV?
Posted by lpkayak (Member # 5230) on :
where was it done-i was told only to have it done at columbia in nyc-but that was a while ago-maybe some other places can do it right now..but i hate it when they say lymes too..esp when it is a do yelling at me that i don't have lymes...
Posted by seibertneurolyme (Member # 6416) on :
Lymetwister,
The results should not have been a surprise. But I agree that it could have been much worse. I was rather surprised that the results do not attempt to quantify the severity of the hypoperfusion issues. I have read of others having severe hypoperfusion with many more areas of the brain involved.
Hubby's report says -- quoting here "mild to moderate global cortical hypoperfusion with heterogeneity of the bilateral cerebral hemispheres with involvement of both temporal lobes. This perfusion pattern is consistent with encephalitis or vasculitis, such as from infections e.g. lyme disease, autoimmune causes or secondary to some medications.
Periventricular white matter hypoperfusion is also observed suggesting white matter involvement."
Hubby's SPECT was done in June of 2007. Had been sick for 6 years at the time and had just about finished up babesia treatment with primaquine and chloroquine. Since that time he has been aggressively treating bartonella. Plans to repeat his SPECT sometime this year once funds become available.
Haley -- Hubby's SPECT scan only cost about $1600 at Columbia University in New York City (in June 2007). This is cheaper than an MRI and gives much more relevant info in my opinion.
Hubby was able to obtain a copy of the insurance company guidelines for the test because it was initially denied. Anthem BCBS listed 7 reasons for ordering the test -- brain tumor and epilepsy (to identify a seizure focus) were 2 of the reasons. I think number 7 on the bottom of the list was infection or inflammation of the brain -- that was the criteria used to get the test approved.
Bea Seibert
Posted by lymetwister (Member # 19590) on :
Medicare covered my test 100%.
Karen, they inject an isotope into your vein. Other than that it is harmless and not bad at all. The machine is open unlike an MRI.
I really think it's where the perfusion is located rather than "mild" vs. "severe". In my case, it's all over my HPA axis.
Kitty, if you read the report again, it doesn't call it Lyme, but rather suggests it as a possibility.
I hope this helps those of you that want this test done.
Gary
Posted by karenl (Member # 17753) on :
Thanks Gary,
It is radioactive, they say three times your normal annual radiation.
The text of the findings is exact the same as I got from my EEG and sleep EEG. So I can save the radiation if I look at your photos.
quote:Originally posted by lymetwister: Medicare covered my test 100%.
Karen, they inject an isotope into your vein. Other than that it is harmless and not bad at all. The machine is open unlike an MRI.
I really think it's where the perfusion is located rather than "mild" vs. "severe". In my case, it's all over my HPA axis.
Kitty, if you read the report again, it doesn't call it Lyme, but rather suggests it as a possibility.
I hope this helps those of you that want this test done.
Gary
I meant, that where it does mention the possibility, It is spelled LYMES.
Where was this done? local hospital?
Posted by massman (Member # 18116) on :
"I really think it's where the perfusion is located rather than "mild" vs. "severe". In my case, it's all over my HPA axis."
Excellent point Gary !
Anatomy books, instructors etc. teach that all of us are built exactly the same. IME we are not. I began to realize and see that while dissecting cadavers in chiro college. A percentage of people are "wired different".
Point is that your so called "smaller" areas of hypoperfusion may affect you more than others whose test shows the same areas affected.
Posted by f13girl (Member # 23844) on :
Where did you have our spect done? I was told only place that' knows what they are doing is columbia university.
Posted by lymetwister (Member # 19590) on :
Had it done in MD, at a Radiology Center. They do these everywhere. I know for a fact of other facilities that also do this in MD.
I would think NE would be no different.
Gary
Posted by Buster (Member # 19472) on :
I think everyone with lyme or chronic illness has vasculitits, even I do. It just ranges from mild to severe.
Posted by Cold Feet (Member # 9882) on :
It's sad that the tech or radiologist doesn't know the difference between "Lymes" and Lyme!
Posted by massman (Member # 18116) on :
Why is everyone so stuck on lyme versus lymes ?
If one is not politically correct then one is wrong ? Perhaps somewhat uneducated, but wrong ?
Some areas of the country speak differently. Soda or pop ? Where is the car or Where is the car at ?
Some of you sound like you are ready to stone them Posted by METALLlC BLUE (Member # 6628) on :
That is a solid Brain SPECT supporting a clinical diagnosis of Lyme Disease. If other serology testing as well as history support the diagnosis, it's a very very strong diagnosis.
Lahey Clinic is worthless when it comes to Lyme Disease (FYI).
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