I was wondering if it is more likely to show problems when my symptoms are flaring. I am sometimes have brain fog and sometimes I don't. Would the problems only show while I am experiencing symptoms?
Also, my insurance is about to change from Cigna to BCBS. Is it unlikely that BCBS will cover this??
Thanks for the help ya'll,
robi
Posted by bettyg (Member # 6147) on :
robi,
check out treepatrol's newbie links; i furnished him something awhile back about MRI/SPECT SCANS, and comments related to LYME disease.
read your bcbs booklet well; call and DOCUMENT EVERY CONVERSATION:
date, time, who you talked to, and TYPE or write down every comment they say! SAVE this often as you may need it as i am now for my $4300 out of pocket lyme expenses for out of state llmd! good luck. Posted by sometimesdilly (Member # 9982) on :
robi-
no point in scheduling SPECT scans around flares, etc. they are not capable of capturing the "real time" condition of your brain. (edit- what the scan shows can have a "time lag" of months in either direction)
you'd need a PET scan for a perfect, real time assessment, but I've never heard of one being ordered for Lyme diagnosis-- they are enormously expensive, and in any case, the SPECT is accurate enough to help confirm the existence of Bb damage to the brain.
hope your insurance change goes ok-- always a huge worry i know, and Cigna is better than some (most?)
dilly
[ 28. January 2007, 05:39 AM: Message edited by: sometimesdilly ]
Posted by geniveve (Member # 8646) on :
bc/bs? HA!! when a llmd in northern texas submitted charges, they immediately put me in a "chronic illness" category. whatever the sam hill that is.
if you ask me, they're pretty poor, but hey, i can't complain, at least they paid something!!! if i can come up with a few bucks now, i just pay for it myself, but that's getting rarer and rarer these days.
Posted by aklnwlf (Member # 5960) on :
Hey Robi, It's me your howling buddy. SPECT to see if there something there or what? Me, I wonder about my own brain. Sometimes it works and doesn't.
I'd opt for PET scan too. Never had one done though.
Having a bout of Bartonella since December and am hoping with the right kind of treatment will be better soon.
I'll let you know.
Your friend in the toolies, aklnwlf
Posted by timaca (Member # 6911) on :
Robi~ I had a spect scan done at Columbia which did show "moderate global hypoprofusion consistent with Lyme." I had SEVERE brain fog at the time, and had been in severe brain fog for quite some time before the spect was done.
My insurance did cover the entire cost.
Due to the results of the spect and the CNS involvement that my symptoms indicated, I was placed on IV antibiotics.
If the results of the spect will dictate treatment then it may be worth doing. There is info about spect scans at www.columbia-lyme.org
Timaca
Posted by Lisianthus (Member # 6631) on :
I had a spect scan done over a year ago, it basically showed low blood flow to the brain.
I had contacted my HMO insurance about having this done and they said since it was "out of state" they would not cover a dime! What was remarkable was that fact that when I had it done the hospital somehow got it completely covered.
When I said to the person at the desk that my HMO wouldn't cover anything... She said... "I didn't hear that"..... WOW! I didn't ask anymore questions.
So there may be hope, Lisi
Posted by Boomerang (Member # 7979) on :
Wow.....sounds like you had a great response when doing your tests. That's great. Gotta love the lady at the desk.
BCBS has paid well for all my hubby's ABX. I keep wondering if we aren't going to get a letter sometime though. Guess I shouldn't worry about what hasn't happened yet ....
Posted by seibertneurolyme (Member # 6416) on :
Robi,
If you do get this done, please post your results.
Second suggestion, get a copy of the film or CD or whatever. It seems like the more advanced the tests become the less likely the hospital will keep them. Some only keep SPECT and MRI's etc for one year while others keep them for 3 years or longer.
Dr C in Missouri told hubby that he had only ever seen one normal SPECT from a Lyme patient.
Bea Seibert
Posted by sometimesdilly (Member # 9982) on :
adding-
fyi, the SPECT at Columbia cost about $2,000 when i had it done last spring.
as i have mentioned in another post, i think my SPECT results are why I was given SSDI disability benefits on the 1st application. if you are considering applying for SSDI and have an otherwise strong case, one way of looking at whether to do the SPECT even without coverage is to think of it as an investment.
dilly
Posted by Mo (Member # 2863) on :
i think it's worth getting, and insurance should pay, perhaps ask doc for an applicable diagnosis code to get the SPECT other than the Lyme code.
bc/bs covered for us. ditto on get the films. also, there are only 2 places you should go for a Lyme literate reading.
1. columbia presb., and Doc Van H. should read it. or 2. middlesex hospital in CT, but that only if you can/wish to see Doc K. for an exam (LL neurologist)- and he will read the scan himself (he needs the films as well)
mo
Posted by robi (Member # 5547) on :
Thank you all for the input. Always count on youse guys (it's my NY coming out).
I really want to try to get this before end of Feb.
THis info will help.
Mo thanks for the specifics...... would like more info .
robi
Posted by betsy (Member # 7105) on :
hey Robi, where would you get it done...does MCV have a reputable spect scan? I had a friend have it done at UVA...they were excellent. are you still seeing dr. b? hope you are getting better. Betsy
Posted by seibertneurolyme (Member # 6416) on :
Robi,
Word of caution regarding BCBS. In the past hubby has had pretty fair success with Anthem BCBS of VA covering meds and procedures etc. However, they have changed some policies since the acquisition of Wellpoint (a large California insurer) a couple of years ago.
The major problem we are running into now is that preapproval is required for CT's, MRI's, SPECT's etc.
Hubby finally got his tests scheduled after waiting 1 1/2 weeks on docs etc and now insurance has denied coverage of all tests. Looks like tests most likely won't happen tomorrow as planned.
Will try to get the ER involved as the neuro that examined hubby in ER today was in agreement that tests were necessary. And of course the neuro who ordered the tests originally is not in the office on Fridays.
Was told reason for denial was because hubby does not have a brain tumor -- this explanation was given for the brain MRI, the lumbrosacral MRI and the brain SPECT scan.
As a last resort customer service at Anthem BCBS advised I take hubby back to the ER and get them to order the tests. Don't really want to do that, but it may be necessary based on symptoms anyway.
Bea Seibert
Posted by IMHisda (Member # 6998) on :
Hi Robi:
I had a Spect ordered from a LLMD and it did show less blood flow to one side of the brain which doc felt was evidence of Lyme. Had some difficulty getting a BC/BS PPO to pay but when they got the correct diagnosis it went through and it was all covered. Hope that helps.
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