posted
I'm having neuro symptoms. LLNP recommended a MRI and a SPECT Scan.
I'm a bit concerned about the SPECT Scan because of the radioactive injection. I've already got tons of toxins in my body I'm trying to rid myself of and I have been avoiding any toxic products at all costs.
Has anyone had one and were the benefits of information so powerful that it outweighed the risk of the radioactive injection?
I'm also generally curious of everyone's thoughts, would you do it?
Posts: 274 | From United States | Registered: Feb 2012
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Ellen101
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posted
I was actually wondering the same thing. I had the MRI, but have not had the SPECT scan.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Ellen, Hopefully we will hear some opinions. When I asked my LLNP about the safety she said that it's not something you'd want to do monthly, but once in a lifetime would be okay. Still, doesn't sound desirable.
Posts: 274 | From United States | Registered: Feb 2012
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Ellen101
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posted
Yeah, with all that we are dealing with I'm with you on avoiding toxic products! I asked my LLNP if the results would change the treatment I was currently on and she said no.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
SPECT scan is the absolute best test for indirect evidence of tickborne infections in the brain.
Hubby has had 2 done and hopefully will do another one in the next few months. First report said mild to moderate global hypoperfusion caused most likely by lyme or vasculitis.
Second report 3 years later unfortunately said moderate to severe global hypoperfusion -- this was immediately after 6 months of IV doxycycline in conjunction with 4 months of IV zithromax. Hubby was actually the least symptomatic he had been in the 10 years of his illness at that time.
The 2nd report helped hubby decide that aggressive babesia treatment was required.
If you can get the test done at Columbia Presbyterian in New York then I would advise that -- that is where hubby's both were done. The radiologist who reads the report makes a big difference.
Columbia Presbyterian has a huge database and they compare reports to others on file to look for patterns seen in depression or alzheimer's etc.
Hubby paid a small fee and we got color copies of the films to take with us immediately after the test. We compared the copies visually ourselves and it was obvious to us even before we got the report that the 2nd scan was worse.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
The good thing about injectable radiation is that you can help get the radiation out faster by drinking lots of fluids to help flush it from your body after your exam.
I can try to answer your questions on the exam.... before I started my battle with lyme I had just graduated with a degree in Nuclear Medicine.
(My neuro symptoms are my worst symptoms)
Unlike the contrast that Cat scans use, or MRI... the side effects from the radioactive tracers are very limited.
Anyway... if you have questions feel free to ask.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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gmb
Unregistered
posted
I had both an MRI and SPECT last year. MRI was negative, and SPECT did show some patchy areas typical of a Lyme infection. I would have continued treated anyway, even if this was negative.
Watch the costs of these test and where you are in your insurance deductables. MRI's for some reason are a higher cost and co-pay. Maybe consider just a SPECT if you have budget issues.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Ellen, LLNP suggested brain spect scan with me due to neuro symptoms. It validates dx of neuro-lyme and possible need for IV ABX.
I did not seem to suffer any side effects from the spect scan, which did show mild to moderate hypoperfusion indicative of lyme or Alzheimer's Disease. (Great, huh?)
The scans can be done locally here in Providence at RI Hospital or one of the others in southeastern MA.
I am saddened to hear about seibert's husband's scan not improving over time with IV ABX. That is one of the reasons that the LLMD's like to do those scans because it can measure the effectiveness of the meds and it also validates your Lyme DX.
My LLMD has been pushing IV ABX because of the results of my brain scan and I am not yet ready... Still would like to give the orals some more time (and I have a daughter getting married next month!)
Posts: 2386 | From New England | Registered: Aug 2011
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Catgirl
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posted
I think the main reason they want it is for insurance. They can't deny you with a spect scan. My LLNP suggested I get one. However, I didn't feel right about putting any form of radiation in my body after everything already existing in me.
The brain is so sensitive. But if you need the IV for insurance purposes, than that may be the way to go.
My mom used to work for the chief of radiology at a hospital she worked at. He told her (a long time ago) that radiation stays in the body forever. I remember that really scared my mom. She opted not to mammograms too.
The woman is 89 and still going strong. :) She's lived longer than any of her siblings. She's anti doc, and anti medication though, so of course she doesn't approve of my treatment.
So, I just did the abx route. Lucky for me, I got better in just a couple of months. Not cured, and still have lots of co infections, but I will take better any day of the week.
Bea that is great advice. My sympathy for you and your husband. It sure seems like you've been through the gamut.
I am currently battling babs (it seems to have reared it's ugly head again). I could tell that it was babs without a spect scan though (so many symptoms).
YinYang, I guess that if your symptoms improve without IV, then maybe you don't need to do the spect scan. But it also depends on what shape you are in (completely disabled, etc).
I think it depends on your specialist too. If your specialist said the only way you are going to improve is with IV, then I would consider doing the spect scan, and especially if I didn't have enough money to cover the cost of IV. Otherwise, no, I'd pass.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Do it. There is some radiation..about as much as a chest x-ray I have heard. That isn't bad.
You don't want to do it every day, but once a year or less is fine.
And it is certainly better than a CT scan (up to 400-500 chest x-rays.)
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
the contrast they use is galadium. it still shows high levels in my blood even though i got the mri over a year ago. if needed, you have to but just be aware.
Posts: 184 | From taking pills | Registered: Oct 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i didnt read what everyone said but have been struggling with this decision as well
i had the injection for the spect because my undertanding was the spect is much better at showing lyme sx
i did the mri without becasue as far as i could tell they would not get great info from mri...it was to ruleout stuff---and then they planned to order other tests i already refused
the mri without injection did rule out tumor/cancer and alzheimers
it also showed alot of white matter changes...but they could be anythig from lyme to high cholesterol(and about 7 othere things)
im more and more careful about what i let them do my body. oftern they do the test wrong and want to repeeat it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I had an MRI a few months back with gadalinium injection. It did toss me back for a couple/few weeks with fatigue. It wasn't great, there was definitely a price paid, but id didn't feel like it was forever in that instance.
Posts: 1927 | From se usa | Registered: Mar 2010
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