LymeNet Flash: SPECT scan - this freaks me out

This is topic SPECT scan - this freaks me out in forum Medical Questions at LymeNet Flash.

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Posted by electric (Member # 6572) on :

hi all,
my llmd has suggested i get a SPECT scan of my brain to get a better look at whats going on. now i totally respect her opinion on this. (she finally figured out whats going on with me , something no other doc had been able to do) however, the idea of injecting radioactive liquid into my veins dont sound like my kind of party. i have read some very negative viewpoints on nuclear based imaging procedures. the claim is spect is way worse because the dye in your blood for days because it decays so slowly. (instaed of a fraction of a second in the case of xray) plus since its in your blood stream its interacting with all sorts of organs in the body. i have had way too many xrays in the last 5 years anyway going to docs who didnt have a clue as to what was going on with me. i have also had an mri. i am only 29 and would like to get quite a few more good years out of this bod. to top it all off the thing costs about 4500.00.

anybody on this forum have this spect scan before? was it useful? do you regret it? how much did you end up paying for it?

i know have lyme in the brain because i have neuro issues. plus i have always sensed this.
however i think i would rather try things such as rife before doing this SPECT crap.

i am highly considering putting off the spect scan for right now even if my doc doesnt like it.

any feedback or suggestions?

electric

Posted by break the chains (Member # 5668) on :

dont do it!
i did it and it worked out badly.
i was very hesitant like you, but the doctors promised a massive detailed map of my brain that would show every little detail with an explanation. i was having serious problems getting my school to accept that i was sick at the same time. this was supposed to show without a doubt the troubles i was having.
i went through with it even though my instincs were screaming at me not to.

was was the result? radioactive material in my blood and one sentence to show for it.
"this patient has lyme disease"
that was it. getting up early in the morning and driving over to the place wasnt even worth that. i could have told them that.

this whole "lyme disease" thing is so screwed up that several doctors later would look at that and be amazed that the person who compiled it would be so bold as to say lyme disease based on a brain image.
in order to look at a brain image and say lyme disease, they must have seen pretty substainial brain damage in some specific areas. i dont think the reader knew why i was getting a scan, just my age which was around 18.

its in no way worth it! i feel like they tricked me and shot me up with radioactive junk.

Posted by electric (Member # 6572) on :

break the chains-
thanks for the info. this is exactly the kind of situation i feared.

plus found out its even more expensive. (over 5000 grand)

here is my other argument - so what if you have a picture of the brain? all you are going to do is prescribe the same antibiotics that you would without the brain scan??? so who cares.

i still would like to get more feedback but i am definitely on the "no" side unless someone convinces me otherwise.

electric

Posted by break the chains (Member # 5668) on :

it made no difference with my school even though they said it would. and there was no way i could even get a single picture even though they were snapping them off for something like 45 minutes. also no further detail was availible.

pcr tests for spirokeets, the standard TBD's, and mycoplasmas are the best way to find out what you have. its a simple blood draw that looks for the actual dna of the organisms.

spect wont confirm lyme unless you have it bad in the brain.

i know a girl who got a spinal tap to prove to her school she had lyme. now she has terrible pain primarily from her spine where they tapped her. she has to take heavy prescription drugs. she has been on valium, many various opiates, and other pain drugs.

[This message has been edited by break the chains (edited 12 April 2005).]

Posted by electric (Member # 6572) on :

the thing is my doc is already 80% sure i have lyme. she wants to do another blood test after a month as she feels more +/- will show up + in the lyme bands (they all showed up +/- before). my babesia titers were off the charts. i know i have lyme. babs dont explain all the issues. so my point is that say i spend $5000 and to get a fancy picture of my brain and it shows damage they still are going to do the same exact thing as a western blot that shows evidence of lyme(prescribe abx). it seems overkill to me and way too $$$. i could buy a nice rife machine for a fraction of the cost.

electric

Posted by Aligondo Bruce (Member # 6219) on :

I disagree...I think you should go ahead and get the spect. the dye is the least of your worries. I had no bad effects. and objective evidence of the extent of your illness is helpful. your LLMD will know that a negative spect doesn't exclude neurolyme. you should consider EMG testing also, BTW. can indicate more subtle nerve disorders. and an MRI if you haven't had one. these things are necessary to help support a diagnosis by excluding other possibilities. To make sure for instance you don't have a mass of some sort in your brain. you'll be better off down the road knowing that everything was done to build a clear picture of what is going on. especially if abx treatment fails which happens often in lyme, but if you get the spect and MRI etc., you'll be much more certain of the diagnosis and won't find yourself worrying about something that has been missed.

you should also be certain that any number of other disorders such as hemochromatosis or wilson's disease have been tested.

SPECT scanning (and MRI) of my brain saved me from the hell of a purely psychiatric diagnosis and led to LPs, lyme serology, etc. which clarified the picture.

PET scanning is much better than spect, but is more expensive and not widely available outside of research centers.

quote:
Originally posted by electric:
break the chains-
thanks for the info. this is exactly the kind of situation i feared.
plus found out its even more expensive. (over 5000 grand)
here is my other argument - so what if you have a picture of the brain? all you are going to do is prescribe the same antibiotics that you would without the brain scan??? so who cares.

i still would like to get more feedback but i am definitely on the "no" side unless someone convinces me otherwise.

electric

Posted by break the chains (Member # 5668) on :

as sick as we are i really doubt most of us would notice additional damage from radioactive material. radioactive material is not going to help. it will do the opposite and cause at least some damage.

getting a rife machine sounds like SUCH a better idea. i am thinking of getting one myself. i wish i could trade my one liner scan for something that could help to heal me...

Posted by lou (Member # 81) on :

Why don't you tell your doctor your reservations and ask why she wants this?

Yes, a spect is better than mri at locating lyme caused brain abnormalities, but no test can say definitely that lyme did it, just that it is consistent with a lyme diagnosis.

I had a spect (abnormal) and an mri (normal except for sinusitis). Have had a number of blood tests, an eeg, echos, ekgs.

Think that unless a test is diagnostic, will support your doc giving treatment, will convince your ins. co. to pay, or is needed to exclude other ailments, based on definite symptoms that do not fit the tick borne disease formula.....then maybe it isn't really necessary.

That's why I think you need to discuss this further with doc.

I didn't like the radioactive part either but had no obvious consequences from it. Was an easier and less stressful test, in my opinion, than noisy mri.

Posted by electric (Member # 6572) on :

each dr visit is a 6 week delay. but if i am not comfortable with something i will wait and discuss with her at next appt.

Posted by bpeck (Member # 3235) on :

There's 2 things I ask myself which helps me decide whether to have tests or not- especially invasive or dangerous tests:

IMO, there should be meaningfull data obtained from tests, with a fairly good plan laid out after the data analysis about what the physician is going to do to help the patient.

If you know ahead of time, that there's going to be arguing over the test results-
(which there will be with brain imaging)
what they mean or don't mean as far as dx,
or worse whether the results are meaningfull at all -
Then what will be gained by doing the test.?

Barb

Posted by treepatrol (Member # 4117) on :

SPECT is a technique similar to PET. But the radioactive substances used in SPECT (Xenon-133, Technetium-99, Iodine-123) have longer decay times than those used in PET, and emit single instead of double gamma rays. SPECT can provide information about blood flow and the distribution of radioactive substances in the body. Its images have less sensitivity and are less detailed than PET images, but the SPECT technique is less expensive than PET. Also, SPECT centers are more accessible than PET centers because they do not have to be located near a particle accelerator.

SPECT

Posted by swissmoeka (Member # 1577) on :

hello electric,

I'm really exhausted right now and didn't read all the post here but wanted to add my two cents for what it is worth, so sorry if I might repeat what someone may have already said.

I had a Brain Spect Scan done at Columbia Prespitarian in NY (I would not go any where else) and yes I did have to travel from NH, it was not easy.

The test was a piece of cake and only took about? oh an hour and a half I would say? I have had 2 done there.

The first one was Severe, second one was Moderate - after treatment there was some improvement but not much.

I was dx clinically with a brain injury before being dx with Lyme with MRI, but it didn't show up on the MRI.

The level of damage showed up on the Brain Spect Scan and they knew what they were looking for at Columbia along with other things.

If it is possible insist on going to Columbia.

Hope this helps.
Swiss

Posted by quic (Member # 5262) on :

Elec.,

FYI. Although not the norm, my wife had a bad reaction to the radioactive dye. She was very sick at the time. After the test, she could barely walk, even with her cane. She just looked so sick. She said she felt her body tingle and stiffen up with the injection. This lasted for hours afterwards. This was before she was treated for lyme. She is very sensitive to the lyme organism and her body was very off-balance at the time. Just a couple months prior to the test, she was paralyzed from the neck down.

This isn't meant to scare you or persuade you one way or the other. Its just to give you another person's experience to help you make a good decision.

- Mike

Posted by kaos (Member # 4144) on :

You already know you're sick. Why do you need an expensive spect scan? If there are any abnormalities of anything caused by Lyme then what can you really do anyway but treat the Lyme. Your still going to treat the Lyme with or without a scan, right? Save your cash. Fighting Lyme will break your bank account.

[This message has been edited by kaos (edited 13 April 2005).]

Posted by Aligondo Bruce (Member # 6219) on :

I've got you beat by a long shot...I traveled to columbia from northern oklahoma.
a good point that they know what they are doing. If you live anywhere near columbia or can afford to travel, have it done there.

quote:
Originally posted by swissmoeka:
hello electric,
I'm really exhausted right now and didn't read all the post here but wanted to add my two cents for what it is worth, so sorry if I might repeat what someone may have already said.
I had a Brain Spect Scan done at Columbia Prespitarian in NY (I would not go any where else) and yes I did have to travel from NH, it was not easy.
The test was a piece of cake and only took about? oh an hour and a half I would say? I have had 2 done there.
The first one was Severe, second one was Moderate - after treatment there was some improvement but not much.
I was dx clinically with a brain injury before being dx with Lyme with MRI, but it didn't show up on the MRI.
The level of damage showed up on the Brain Spect Scan and they knew what they were looking for at Columbia along with other things.
If it is possible insist on going to Columbia.
Hope this helps.
Swiss

Posted by okie lyme (Member # 7130) on :

quote:
Originally posted by Aligondo Bruce:
I've got you beat by a long shot...I traveled to columbia from northern oklahoma.
a good point that they know what they are doing. If you live anywhere near columbia or can afford to travel, have it done there.

From N. OK also, Enid~~
I'm suppose to have an MRI in May~~ I know there are no llmd's here, and I'm rather~~oh anxious about this, not to mention the cost. I've read so often lyme is misdiagnosed for MS and other nasty things. Traveling is OUT! of the question. I guess I'm just hoping the neuro here is open to lyme possibilities. Clinically semi-dx'd for lyme.
thanks for letting me babble.

Posted by yankee in black (Member # 4309) on :

Though I do agree with the statement that it is wise to go to Columbia for your Spect Scan--if you do decide to pursue this course of action

I have to tell you: I had a SPECT at Columbia, and another at U of Texas, about two months' apart( I had a disability lawsuit going on at the time--yes, I was successful)

They both showed the same abnormalities

So, I would ask your local LLMD where they feel maybe the best local place to get tested

Posted by break the chains (Member # 5668) on :

quote:
Originally posted by kaos:
[B]You already know you're sick. Why do you need an expensive spect scan? If there are any abnormalities of anything caused by Lyme then what can you really do anyway but treat the Lyme. Your still going to treat the Lyme with or without a scan, right? Save your cash. Fighting Lyme will break your bank account.

nicely put

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