Topic: what is the best scan to show lyme brain and spine lesions?
GretaM
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?
Want to monitor my brain and spine, but need a scan that will show lyme lesions the best.
Paying out of pocket so want to only do this once.
Thanks.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Rumigirl
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MRI's. But out-of-pocket they are VERY expensive---at least in the US. Here, they charge per section, i.e., brain, cervical spine, thoracic, lumbar, sacral area. Each one costing $2,-3,000!
You would want it with contrast, if you want to know if any damage is current vs past. This would cost extra, but is quite important. You also would need a doctor to order any of it.
If they find any lesions, you would need to do it yearly to see if it is progressing or not.
So, you're looking at a VERY expensive proposition. But very important.
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GretaM
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Thanks Rumigirl.
That is exactly what I needed to know.
Thanks again Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Rumigirl
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Just to add further: it is very common for Lyme patients to have lesions on the brain. Non-Lyme-Literate doctors will pooh-pooh the significance of them. But, clearly, they are very significant.
I had lesions on the brain that looked like MS in 2 MRI's years ago, right after my diagnosis, but before I had any antibiotics. In retrospect, I should have been tested yearly.
I just had another one done in July, and I was shocked beyond belief. In spite of treatment over the years (not sustained or comprehensive enough, but not nothing either), I am now severely worse.
I now have 40-50 lesions per hemisphere!!! ANd a severe plaque load throughout the brain. I'm still reeling from it, and trying to figure out where I go from here.
What I'm trying to say is that this is a really big issue.
If you have to pay out of pocket, you need to negotiate hard with the facility to get the price down to whatever insurance would pay or less.
Wait, why do you have to pay out of pocket? I thought that you had national health care? Is it because you think no Canadian doctor will order the test?
If so, I would fight hard for it. It is so important and so expensive!! If you have to, you make the point that if you do
have lesions, and they refuse to order the test/pay for the test, you will hold them responsible for the consequences.
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GretaM
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The wait time for an MRI here for non emergency is about 2 years.
If I pay privately I can have one next week.
Also, I will be hard pressed to find a neuro who will believe lyme exists in Canada to order and MRI.
I've had both and MRI and a SPECT on my ankle before...both showed different findings.
Is it the same for the brain?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Rumigirl
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Yes, I'm aware that the contrast probably isn't the healthiest thing. However, if you want to know if any damage is current or old, that its the only way to know.
In terms of where you have it done, places vary a lot, not only in price, but in terms of quality of the report. At certain places, like a hospital that is known for neurology, or known for it's quality of
work, or large teaching hospitals, the price is much higher, but the quality of the radiology report is miles above a private, free-standing facility (in general).
In my city, I go out of my way to insist on getting MRI's at a specific hospital that is known for this work. Their reports are so much more detailed, there is just no comparison.
Get a recommendation from people who might know, because you can't always go by what I said, but in general, this is true.
Do you have a doctor to order the MRI?
Posts: 3771 | From around | Registered: Mar 2008
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quote:Originally posted by Rumigirl: Just to add further: it is very common for Lyme patients to have lesions on the brain. Non-Lyme-Literate doctors will pooh-pooh the significance of them. But, clearly, they are very significant.
I had lesions on the brain that looked like MS in 2 MRI's years ago, right after my diagnosis, but before I had any antibiotics. In retrospect, I should have been tested yearly.
I just had another one done in July, and I was shocked beyond belief. In spite of treatment over the years (not sustained or comprehensive enough, but not nothing either), I am now severely worse.
I now have 40-50 lesions per hemisphere!!! ANd a severe plaque load throughout the brain. I'm still reeling from it, and trying to figure out where I go from here.
What I'm trying to say is that this is a really big issue.
I've also had multiple MRIs and they all show multiple brain lesions. However, while it may seem like a big issue to you or me, there apparently is nothing to do about the lesions. So, I guess I would question why you would spend money out of your own pocket for a test that will result in no treatment change? What is the MRI really going to do for you?
Posts: 177 | From Ohio | Registered: Aug 2012
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desertwind
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CT Myelogram
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Rumigirl
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quote:Originally posted by PatriotM:
quote:Originally posted by Rumigirl: Just to add further: it is very common for Lyme patients to have lesions on the brain. Non-Lyme-Literate doctors will pooh-pooh the significance of them. But, clearly, they are very significant.
I had lesions on the brain that looked like MS in 2 MRI's years ago, right after my diagnosis, but before I had any antibiotics. In retrospect, I should have been tested yearly.
I just had another one done in July, and I was shocked beyond belief. In spite of treatment over the years (not sustained or comprehensive enough, but not nothing either), I am now severely worse.
I now have 40-50 lesions per hemisphere!!! ANd a severe plaque load throughout the brain. I'm still reeling from it, and trying to figure out where I go from here.
What I'm trying to say is that this is a really big issue.
I've also had multiple MRIs and they all show multiple brain lesions. However, while it may seem like a big issue to you or me, there apparently is nothing to do about the lesions. So, I guess I would question why you would spend money out of your own pocket for a test that will result in no treatment change? What is the MRI really going to do for you?
I disagree! While it is debatable whether it is worth it if you have to pay out pocket, here is the issue:
If you see that you have lesions on the brain, or, even worse, if you see them increasing, then it tells you that you MUST do treatment that crosses the blood-brain barrier, and that your
treatment should probably be as aggressive as you can tolerate without giving you bad herxes. It tells you that you have brain damage that requires treatment to stop the progression, and hopefully to reverse some damage.
I wish that I had done an MRi between Dec. '06 and this past July (every year), because in that time, the brain damage got SEVERELY worse.
It's not true that one can't do anything about it. You could argue that you could treat this way anyway without the MRI, but many docs wouldn't do this without knowing that you have the CNS damage.
Tom Grier says that once you have had Bb in the brain, you always have to be on abx that crosses the BBB, as the brain has no way to fight the Bb once the BBB has resealed. I don't know if that is true or not (he's a PhD, not a clinician), but I wonder.
I am really sobered by what I discovered this summer, and i've had a lot of treatment. Just not sustained or comprehensive enough, through no fault of my own.
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What treatment are you doing now? I heard Minocycline crosses the BBB well.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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GretaM
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Yes, I agree. For me it is 1. Are the lesions getting bigger? 2. Do I have more lesions? 3. Where on my brain are the worst lesions located? 4. How bad is my spine?
My spine has been bothering me since 2001. If anywhere is the most degraded, I suspect it will be my spine.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lyme in Putnam
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Hi Greta. Had brain lesions a dozen in 2010 and 2011. No doctor gas made any deal of them except llmds, the rest referred me to psychiatry. I hate them all. Didn't have spine, never tested.had 2 spect scans at Columbia. Showed hypoperfusion, slowness of circulation in the brain due to medications, vasculitis or Lyme. Surprise.. Didn't mean much to anyone, just added frustration to my pain.
Good luck,a God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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You might want to ask you LLMD what impact brain lesions will have on your treatment, if they're found on a MRI?
For example: 1. If the lesions get bigger how would your LLMD adjust your treatment, if at all? 2. If you have more brain lesions, how would your LLMD adjust your treatment, if at all? 3. Will your LLMD adjust your treatment based on the location of the lesions in your brain? 4. If the lesions are bad in your spine, how will your LLMD adjust your treatment?
I've seen some of the best neurologists in the USA at the OSU Neurology clinic (several years ago). I have yet to see a doctor that could explain the significance of the lesions or describe any treatment specific to their existence. In fact, as Lyme in Putnam said, the lesions didn't mean much to any of them.
My LLMD is treating me for my CNS symptoms, irrespective of the lesions.
Posts: 177 | From Ohio | Registered: Aug 2012
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GretaM
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Patriot-those are good suggestions. I will do that. Thanks
I agree with lyme in putnam.
When the neuro looked at my last scan he said I was "unimpressive"
Gee, thanks.
When the scans of my ankle showed arthritis, (and a bunch of major problems with connective tissue and nerve damage), the orthos didn't think it was any big deal. I was 29 with arthritis...
So I'd imagine the only person that would care about my lesions would be me.
And my mom.
Haha.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Hi Greta--if you're paying out of pocket, I've often heard that a SPECT scan is more useful to those with Lyme & co than an MRI because it shows brain functioning and bloodflow.
If you want an MRI specifically, you should have the Gadolinium contrast dye. Gad's not a good thing to have, but you need the clearest bang for your buck.
About insurance: people must surely be given insurance coverage for MRIs for urgent but non-emergency situations? What about someone with a headache that won't go away for weeks or months? What about someone who is experiencing increased dizziness? Just saying. Good luck!
Posts: 431 | From New England | Registered: Dec 2011
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GretaM
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Anthro-thanks for the tip about the blood flow/functioning with a Spect.
The contrast dye sure sounds yucky.
I've had 2 CT's one with contrast, because of my headaches but the neuro wouldn't do any further testing.
He said, "hemiplegic migraine" and a change in a migraine pattern.
And recommended botox injections.
But I am hoping if I pay privately I can circumvent the neuro experience again.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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