posted
LLMD wants dd to have an updated brain spect. It has been 3 years since her last so I've forgotten key information........(1st one done was completely normal):
1. Any risks, side effects, or negative reactions from the radioactive iv they administer?
2. How long does it stay in the body, and how can I aid in getting it out of her body as soon as possible?
3. Any tips on making the whole test/procedure more pleasant and easier for her?
4. Do abx need to be stopped? (Worried about any interactions between them and the test's iv meds).
5. Any recovery time needed, i.e., headaches like for LP, etc.?
6. Any good reason to have an updated one done when the first one done prior to treatment and at her worse was normal? (Trying to figure out whether or not I want to skip this test, though I know LLMD is adamant we do it--ugh!)
That's all I can think of right now..........
Thanks for your help!
Posts: 648 | From northeast | Registered: Feb 2009
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I have had 3 done (maybe more I can't remember now). I have brain lesions, we knew that but they refused to accept that it was from my Lyme so they kept doing more and more scans. I got sick from that nasty stuff they injected in me. I literally had vomiting and diarrhea and massive headache for a week. I got so weak from it and dropped down to 92lbs (from 98 lbs in 6 days)! So to combat my reaction they gave me benadryl before hand which then knocked me out. One minute I was talking to the nurse and the next I was out! And in the end, they still couldn't rule or rule in anything!! They then wanted a brain biopsy. That was when I snapped out of it and said "If I stay here they will kill me" so I left. That hospital stay w/ all the testing cost over $125,000!
No way I would EVER do another scan. I don't care how many lesions are growing/shrinking... I'm not putting my body through that again. I just feel all those tests they did on me were unnecessary. They had no clue what they were looking for anyway! It was throwing mud on the wall and see which sticks.
What are you hoping to find w/ this scan? You have to weigh the pros and cons before you can decide. If they were normal when she was at the sickest, what is the doctor expecting to find NOW? Don't be afraid to ask questions. That's the one thing I learned through all this. I can say no.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
A SPECT scan is pretty mild.I even fell asleep during procedure. The isotope that they use will give you a better answer as to how long the half life. Some are 66 hours plus. Some are very short. If it was me I would call the radiology department there and ask which isotope that they use.
The radioisotopes typically used in SPECT to label tracers are iodine-123, technetium-99m, xenon-133, thallium-201, and fluorine-18.
These radioactive forms of natural elements will pass safely through your body and be detected by the scanner. Various drugs and other chemicals can be labeled with these isotopes.
The type of tracer used depends on what your doctor wants to measure. For example, if your doctor is looking at a tumor, he or she might use radiolabled glucose (FDG) and watch how it is metabolized by the tumor.
The amount of radiation your body is exposed to is less than you receive during a chest X-ray or CT scan. Women who are pregnant or nursing should not undergo a SPECT scan.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
scorpiogirl...you say you have lesions, did you also have eyeball pain and alot of head pressure with dizziness?
That is where I am at now and I am so scared that I am going to have brain damage, MS, blind or maybe just die from this.
Am I being unreasonable? If I had the first 3 then I would want to do the latter.
How or when does a person improve when these symptoms and lesions are present??
I had such a hellish migraine the day after my brain mri
Posts: 33 | From PA | Registered: Jul 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi Lexalou,
Yes I have eyeball pain and head pressure. Before I started treatment, I couldn't open my eyes. And my head always felt like I was wearing a too tight headband! My dizziness progressed to vertigo as well. And the darn vertigo did not go away even after I closed my eyes! That was the worse ever!
Most of that are now GONE since I have been on treatment. I have occasional dizziness/wooziness when I herx and feel weak but for the most part I feel ok. I have not had a vertigo attack in over a year! I still see floaters but my eyeballs seldom hurt anymore. And I only get head pressure now if I am not doing my detox routine (that's when I can feel the inflammation in my brain). So have read that while symptoms may improve but the lesions can take years to resolve.
My girlfriend has 11! She's 2.5yrs into treatment and doing better. I know it is scary, I used to think I would wake up losing my ability to speak, see, or hear, etc... but now I stopped worrying about. I'm determined to beat Lyme and Companies!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I've never had a SPECT scan, but have had more than one brain MRI. I did not have any side-effects from the test other than a headache from the loud noise the MRI machine made during the test, LOL!
The best way to get rid of the IV contrast is to make sure you are well hydrated before the test, and then continue to drink plenty of water after the test to help flush out the contrast.
I know some IV contrast materials can cause kidney problems if one is too dehydrated or has compromised kidney function, so be sure to discuss kidney concerns with the doctor ordering the test before you go in for the test.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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I had brain Spect in Boston after a brain MRI showed multiple scattered tiny lesions & other abnormalities. Brain Spect did not affect me physically in any way, and it came out "normal." It did take a long time but I just had to relax to pass the time.
Posts: 348 | From MA | Registered: Dec 2010
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posted
Thank you everyone for sharing your experiences and for your suggestions.
I will be calling the radiology department to find out which isotope they will be using as well as if there are any contraindications with the abx she is on.
I still haven't quite decided to go ahead with the test. I believe her LLMD is trying to test for impaired capillaries(?)--based on her still having a 24/7 headache after 3+ years and her not seeming to respond any longer to orals--thinking he may be gearing up to switch to IVs--something else I REALLY don't want to hear, just terrifies me to think she will have to go on IVs.
Thanks again everyone--much appreciated!
Posts: 648 | From northeast | Registered: Feb 2009
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