posted
Of course I don't understand the details that were read over the phone. I'm getting a copy of my own through the mail.
When I called my LLMD for her interpretation and how it would impact treatment the message I got back was I would have to wait until my follow-up appointment March 5 because the results of the SPECT SCAN would require a discussion that was too involved to do over the phone!
Meanwhile-all I know is the bottom line was "Bilateral Profusion, Cerebral Defects" of the Parietal, Frontal and Occipital lobes.
Any of this sound familiar to anyone? Who else got their results back-I know several of us had SPECT SCANS done last week.
I just hope part of the discussion with LLMD involves hope for reversing any brain damage.
posted
Thanks Cave76-so how does that relate to your treatment and functioning???Besides being incredibly erudite and a bit goofy at times.
I didn't like the way I kept hearing the words abnormal and defect when she read me the report. Tell me something I don't know. And I hate waiting for a layman's explanation from the LLMD.
Wonder if I should start "living like I was dyin'"!Anybody up for a sky dive???? How about a banana split?
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I'll take a banana split, make that two!!
Just curious did your insurance pay for this?
I havent had one done, but would like to.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Carol,
I would think this would be good for your SSDI case.
I highly doubt it means your life will be shortened. It better not, we need you around here too much!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
carol, thanks for posting your results! even though they are puzzling to us non-MD minds!
awhile back we had a new member join who showed her occupation for READING spects, mri, cat scans! can't remember her name.
i hope she is still around, and will give you her expertise so you don't have to wait 11 days!
your appt. w/llmd is same day as my hip replacement surgeyr. i'll be thinking of you IF you think of me!
have you ever been to NIH's medical libarary of: illnesses, meds, and MED DICTIONARY. many times if you have a particiular illness...be on it, and then bring up med DICTIONARY; it will relate to THAT SPECIFIC ILLNES! try it, it can't hurt, and then you can do more researching.
carol, best wishes it's NOT serious, and then treat you.
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Cobweb
Unregistered
posted
Good Morning all-
Can't-No- my insurance wouldn't cover banana splits,I checked. We'll have to pay out of pocket.
At least verbally over the phone BCBS of MA said they would cover SPECT SCAN-depended on the reason for scan. I read the script over the phone to the representative and she said it would be covered.
Lymednva-yeah- the spect scan kind of backs up my clinical symptoms-I think.Probably explains why I checked out a DVD at the library and when the libraian told me it was a 2 for 1 special I went back to the rack and picked up another copy of the same title to check out.
But I'm not going to check out any more DVDs from library because I could have bought the DVDs for the cost of late fees. They had the nerve to charge me late for both DVD's even though they were the same title. It's not easy being green. I considered appealing -actually I considered screaming at her" CUT ME A BREAK LADY I HAVE LYME DISEASE" But she was rather stern and dour looking and I was afraid she would just reply with something like " I could give a rat'sass-pay up"
BettyG-I think I'm having sympathy pains for you-my right hip has been killing me lately-but I'm too afraid to have it diagnosed on xray because I''m a chicken**** when it comes to the thought of a hip replacement. I'm going to let you lead the way on this one-as long as you promise to keep us all posted on your experience. I feel for you-let's hope anticipation is the hardest part.
okay-it's a promise-we'll pray for each other on March 5th.-Hey my calendar says I have some library books due on that day too. If I don't get them back on time I may not be able to afford lyme treatment or banana splits.
I do have the details of SPECT SCAN if any detailed oriented SPECT readers show up.
I'm still waiting for my fellow SCANNERS to show up and let us know how they did?
posted
Cave- Such words of wisdom , you must have a whole bunch of barnacles.
I really must adhere to your perspective because I am freaked out by the fear factor that the LLMD is going to tell me I have Alzheimers. In fact I don't think I should be doing anymore googling because it all takes me to sites about dementia, etc. Who would ever hope to have Lyme Disease?? ME ME ME
Meanwhile , your philosophy on the whole matter is just what I need-and will continue to reread until I can put it into practice.
posted
I'm one of those who had a Spect Scan last Friday-at Columbia. Met with llmd on Wed of this
week to go over reports of MRI and Spect Scan. My MRI showed a 4 x 5 mm part in the right
frontal lobe where altered signal was noted. There were other small parts but the 4x5 was the
most significant finding. The radiologists impression: The areas were non-specific, but
given the history, could reflect finding of CNS (Central Nervous System) Lyme disease.
The Spect Scan, which I had on the following day, the report said:
There is a mild to moderate, global and relatively symmetrical cortical hypofusion with heterogeneity.
Impression: Mild to moderate global, cortical hypoperfusion with heterogeneity. This perfusion
pattern is consistent with encephalitis or vasculitis, such as from infections e.g. Lyme
disease, autoimmune causes or secondary to some
medications.
My llmd basically said that blood was not flowing properly to certain parts of my brain.
He also said that with the IV abx treatment that I was to begin with increase the blood flow again
significantly and that interestingly enough, if I had another Spect Scan it would show improvement
but another MRI would show that same spot on my brain. No one knows why though.
I have already tested positive for Lyme but something new came up with this llmd.
I had lab work done, some kind of immune complex/antigen-antibody test. It showed a significant out of range number
for rheumatoid factor and a
>6H out of range finding for Sjogrens antibodies (SSA)
I don't know what any of that means except what he told me. That I am having some kind of
autoimmune response in my body and he wants me to go to a rheumotologist. He told me to go off of
my oral abx because with my late stage chronic Lyme, they wouldn't do me any good anyhow.
I was put on the orals by another llmd last Aug and have had no improvement. My neuro symptoms
seem to be getting worse.
Two llmd's ago, when I lived in another part of the country, my llmd started me on doxy and was
going to treat me for coninfections also, no matter what test results say, because the test
for coninfections , in his opinion are too unreliable and that you can't take the chance of
letting the coinfections go untreated. I showed improvement after starting treatment in Sept
2004, when I was first diagnosed in just a
couple of months of the doxy.
My husband's job transferred to another state and then we moved from the midwest to the east coast last summer.
I had no Lyme treatment from Nov 2204 until Aug 2006. I had NO improvement on orals when I started
back on them.
Do any of you know whether the long break between abx treatment built up some kind of
resistance, that resulted in the lack of response to oral treatment this time?
That's why I wanted to try the IV route but this llmd relies totally on lab tests for coinfections
Will the IV Rocephin address the coinfections also?
I don't feel comfortable being totally off of abx again while I jump through the hoops for the
rheumotologist, which could take months. I thought the Lyme itself can create these auto
immune responses, especially when there is decreased blood flow in the brain which is sending
all the wrong signals and screwing our body up. I don't want to take autoimmune drugs AND lyme drugs. It's sounds counterproductive, since so many of the autoimmune disorders are treated with some
form of steroidal treatment which is poison for those with Lyme
OK people, this was an extra-long post. If any on you can weigh in on ANY part of this, it would
be very appreciated. I am going to insist on another face to face with this llmd before I go
having some other md looking me over. I want a better explanation than just a couple of numbers
on a piece of paper. I need to see him, but I need to be prepared with facts and great questions.
I'll be reading all weekend and researching all weekend but I write better than I read for some
reason, due to the neuro, so research takes a long time for me! I need some help to know what
to do now. Aughhhhh!
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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Do you have a copy or remember what the wording was on the script for your SPECT? What was the diagnosis code -- did it say something like "Rule Out Lyme Disease" or something else entirely?
Hubby has Anthem BCBS of Virginia -- they require preapproval for SPECT scan -- Neuro appealed decision but insurance is still denying the test -- reason was that hubby does not have a brain tumor.
At this point I think I would even be willing to pay the $600 office visit fee to the neuro at Columbia if I thought she could get the SPECT approved.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
quote:Originally posted by Cobweb:
I really must adhere to your perspective because I am freaked out by the fear factor that the LLMD is going to tell me I have Alzheimers.
In fact I don't think I should be doing anymore googling because it all takes me to sites about dementia, etc. Who would ever hope to have Lyme Disease?? ME ME ME Carol
carol, here's a quick test to test for allzheimer's symptoms in yourself i learned at a A,Disease annual conference.
draw a circle for a CLOCK; now fill in the numbers where they should go .
are the numbers where they should be?
are they on the majority of ONE SIDE?
is your circle so SMALL you can't put the numbers in it?
if answer is yes, you should see a neurologist for further testing. how'd you do carol?
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Cobweb
Unregistered
posted
Hey Betty- I can draw a clock just fine-just don't ask me what time it is !
By the Way- is MrG any relation to you? I don't think I've seen any posts from him but the info could add to any birthday wishes I might send his way.
Bea- I don't have a copy of my script, but I think the code was 880.something. and it read-Patient has neuroborreliosis. Evaluate for encephalapathy(sp) and hypoperfusion.
Maybe that's not the exact wording-but pretty close. We have BCBS of MA -PPO plus.
Bugged-This whole process of getting the right treatment can be soo frustrating because your greatest desire is to narrow down the cause of your symptoms in order to zero in on treatment-and just when you think you are there,you wind up on a DETOUR. Managed care is so unmanageable.
>>I agree. But another symptom of having Lyme is Paralysis by Analysis. This inhibits doing something/or anything.
I've got this, but never knew it was a Lyme symptom. No wonder I'm so indecisive!
My recent SPECT scan showed a problem with low blood flow in one area. I'll have to find the report. The Lyme dr. said it was from Lyme, although the radiologist report disagreed. Not all radiologists are lyme literate, though.
BTW, how do you copy a post in "quote" form & put it in the my own post. I've seen it done and know it can be done. ;-)
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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bettyg
Unregistered
posted
quote:Originally posted by cave76:
****BTW, how do you copy a post in "quote" form & put it in the my own post. I've seen it done and know it can be done. ;-)****
cave, here's how i do it and it's in my newbie's links/advise i send all beginners to our board.
click on "" for person YOU WANT TO QUOTE!
now go to the 2nd line and please DELETE [qb] so the quote is NOT in BOLD which drives my lyme eyes up a wall and delete the [QB] at the end of quote.
another thing, some people quote someone, and then add: i agree, etc. would be easier saying:
cave, i agree on your comments above. just my 2 cents worth.
cobweb, glad you passed with flying colors the clock test! yea, i know; we all have trouble telling time, and it flies while we are here on the board!!
no, i'm no relation to mr. g! good question!
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Cobweb
Unregistered
posted
Update-if I can figure out how to post update in title I will.
Meanwhile-I got a hard copy of my spect scan and it sure would have saved a great deal of axiety if the person reading me the report had included the information at the very end stating:
"subsequent reversal 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"
that's all I wanted to hear was the word REVERSAL.
Other than that it just further supports the diagnosis of Lyme Disease.
So now I just have to hear what my LLMD considers appropriate therapy with this report.
I feel much better-thanks to Betty's sophisticated test to rule out Alzheimers, Cave's philosophy for living an imperfect life to perfection, and finding out the word reversal actually means I have a chance to move forward.
Now onto another challenge-how to get the word update in the subject.
click on PENCIL ICON which OPENS up the title line and text. now you can type anything up there or delete as well. same goes with text; you can add/delete accordingly.
when done, click EDIT SEND; you're all done carol! easy huh! you betcha!
GLAD TO HEAR YOUR "GOOD" NEWS -- REVERSAL! SUCH SWEET WORDS! yes, i'm shouting your good news to our lyme famiy.
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Cobweb
Unregistered
posted
Gee- thanks Betty-(get it? Gee Betty -I feel so clever) three times I tried last night to change subject but my pencil eraser just kept smudging the screen.
This morning I have this transient window of opportunity for some mental clarity and VOILA-updated it is.
Carol PS-Cave-how did you know I wear glasses?
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bettyg
Unregistered
posted
quote:Originally posted by Cobweb:
Gee- thanks Betty-(get it? Gee Betty -I feel so clever) three times I tried last night to change subject but my pencil eraser just kept smudging the screen.
carol, you're just to clever for your own good, but we really love it when you apply your cleverness to those wonderful birthday poems you write us all!
sharpen it up for march 24th when i have my 58th birthday ok!
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Such words of wisdom , you must have a whole bunch of barnacles. ![[group hug]](graemlins/grouphug.gif)
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-I feel so clever) three times I tried last night to change subject but my pencil eraser just kept smudging the screen.
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