Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
My LLMD wants me to think about getting an MRI but I'm not sure I fully understand the point in doing one.
If I had white lesions, what would be done about it anyway? What would be the point in knowing?
Do all people with neuro Lyme have white lesions show up? Is it possible to have neurological symptoms and no lesions?
I am worried that if I have an MRI done, my insurance company will use the findings as a reason to deny Lyme treatment coverage stating that I have MS or some other type of condition. Is there any benefit to an MRI?
I am not concerned about ruling out other conditions anymore. I have had lots of tests and nothing abnormal shows up except for Lyme and Co. So I'm confident in that diagnosis.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Pros:
Your LLMD could have visual proof for the need to treat you if he or she is called on to defend that. If that is not of concern here, I would not do the MRI unless you have other questions that only that could help solve.
It could also serve as a comparison to measure an MRI at this point to another MRI.
It could also help you obtain insurance coverage, though, maybe not exactly as desired though that could be possible.
You could have a better idea if there are particular places in the brain that are "stressed" or affected - help you better understand symptoms and allow your treatment can be more specifically tailored.
If other things, or even the white spots or lesions show, that could help confirm neurological involvement if you need to obtain or continue any kind of disability coverage.
Still, many white spots are simply dismissed or not even seen by some radiologists (the doctors who "read" the scans). If possible, ask your LLMD for an MRI center where a LL radiologist might be on staff.
Cons:
If the contrast dye that helps them see the scan better is used, that IV solution can stress the kidneys. Homework required beforehand.
Not good for anyone with kidney issues. But, with some specific nutritional measures, the kidneys could be supported before and after.
If clear, yes, the insurance company could use it to say "see, all's fine." What they don't know is that a person who is severely ill with lyme could have a clear MRI.
The MRI can't distinguish between the CAUSE of white spots and most non-LL radiologists often miss important clues. If done, your LLMD should also be able to see the actual "films" or computer visual scans, not just the written report.
Don't worry about any regular radiologist determining that anything on any MRI is lyme. That would be beyond rare. A MRI can't diagnosis lyme (or really even "MS"). It would just show things that may be suggestive of "MS" - there are other elements to any diagnosis.
NOISE and, IMO, hearing damage - even with ear plugs or the special kind of hear muffs designed for MRI use (which only some place have on hand).
Remember that when on certain Rx, hearing damage can occur at much lower decibels than normal. Ear plugs and protective muffs can do only so much.
Sound and the violent vibration of the MRI that some can experience (especially for those with inner ear or middle ear issues), travels through all the bones in the body - and through the nasal passages.
If you get on, be sure the MRI center has those special ear muff protector but also wear ear plugs.
I don't know if this might be possible, but if they have dense mat that you could lie on, it might help stop some of the vibration from the machine into your body. Some.
---------------
A "Functional MRI" might be better for purposes of lyme and showing cognitive processing issues.
A SPECT SCAN or a PET may be better in other regards,
especially to identify HYPOPERFUSION (common with lyme). No noise but an IV solution has to be used. That would need some homework but most say they do fine.
---------------------- Just thoughts off the top of my head. My hearing has taken tremendous hits with MRI. But some folks barely notice the intense noise and vibration.
For myself, I could be dying and I would not want another MRI, ever. My ears and tender brain tissue just can't take that kind of hit.
But my reaction is, indeed, at the far end of that scale. I'd just hate to see anyone else unnecessarily clobbered, especially since some kinds of hearing damage can take years to materialize. -
[ 06-02-2012, 03:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For details on the special MRI ear muffs - and other things that could help protect ears before and after:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS & SCD - Superior canal dehiscence -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have MS and Lyme. My LLMD isn't sure if the Lyme caused the MS or not, BUT I do have MS. I believe the Lyme came first. I was "diagnosed" with MS about 14 years ago via an MRI. Keebler is right, they can't diagnose it with the MRI, but if there are lesions and you are having symptoms associated with "MS" they call it probable MS and put you on one of the disease-modifying agents. I am on Copaxone. Statistically, that med slows down the demylination - NO MATTER WHAT IS CAUSING IT. So it seems to me that as I am trying to get rid of the Lyme, if I can slow down the brain damage so I don't end up with Alzheimer's like my mom, I'll do it. I have told her for years that i believe she has what I have, which made no impression on her.
SO - an MRI can be helpful, even if you are "diagnosed" with MS, because it can get you treatment for the progressive demylination, if they see it. The drugs are expensive, my insurance covers part of it, and the drug company has a program where they pick up my co-pay. IMO it's worth every penny.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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lymeboy
Unregistered
posted
as far as Lyme goes, do the Lesions / demylination go away with treatment?
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posted
I had an MRI because my pituitary wasn't functioning and the MRI showed lesions in the white matter of my brain. The good news is that after a year of antibiotic therapy, the lesions were gone with the next MRI (to see if anything had changed over that year.)Like me, you might be able to treat and show improvement. Just a thought.
Posts: 482 | From Oregon | Registered: Feb 2011
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Thanks for the responses. For me the severe symptoms came immediately after several known tick bites a rash, and a very strong off season flu. So I am 100% sure it is being caused by Lyme or a co-infection.
I'm not sure if I will get an MRI or not. If it's to provide evidence for the doctor to avoid consequences for treating it, that's one thing. However, I think that knowing I have white matter lesions is not going to be a positive thing for me psychologically. It likely won't affect how I choose to treat my symptoms.
posted
I wouldn't do it if it involves the contrast. Who needs the chemicals??
I've never had a brain MRI. I'm afraid they wouldn't find anything there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Another thing that was mentioned is that an MRI may make it easier to be authorized for IV treatment.
Does anyone know how so? Would it make it likely to be approved for longer than the standard month of IV's? IV's are something I didn't want to do either, but with the more severe neuro stuff (seizures, paralysis) I am starting to consider it.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I had an MRI in '04 with amazing results...my continuous headache just STOPPED!
It was an open MRI. I wore my own earplugs and meditated. The noise wasn't too bad, it was like a deep harmonic vibration.
However, the headaches began coming back about five or six weeks after the MRI, and in a couple months they were as bad as before.
I've read of people whose depression lifted after an MRI. It has something to do with the magnets.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
a couple things:
-my primary said you need to have 3 specific pos results on diff tests to be pos for ms...one is the mri...i cant remember the others
-keeb said an mri could give your doc visual proof to tx
but i dont think all docs agree on what lyme looks like in an mri
i just had one done---there were major white matter changes that the radiologits said suspected lyme. but the neuro said no way it was lyme....
i absolutely would not have the chemicles thos...gad...something. when i researched for my own mri i found many who had major problems with that
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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quote:Originally posted by Lymetoo: I wouldn't do it if it involves the contrast. Who needs the chemicals??
I'm going to have one soon - without the chemicals. Can one distinguish between beginning Alzheimers and Lyme-induced inflammation?
Posts: 269 | From Germany | Registered: Jul 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
i had one with and without contrast. Both showed a dozen lesions, but have been told by neurologists its "inconclusive"
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
OtterJ, wow, I had the exact same scenario. Had MRI to rule in or rule out a pituitary tumor. Found something else instead. I've never had a follow-up MRI though.
Posts: 478 | From Third Coast | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kadee,
You ask: "Can [MRI] distinguish between beginning Alzheimers and Lyme-induced inflammation?"
No. It cannot.
I also doubt that it is capable of showing much at all about "Alzheimer's" and, besides, that can be from lyme or other chronic stealth infection, anyway - so focus on treating lyme and all that goes with it.
Be sure your LLMD suggests the place to have your MRI done. And be sure your LLMD gets the full pictures, not just the written report.
Don't expect a lot to be revealed. An MRI just can't show everything we think it can. But, if there are some structural abnormalities, it can be helpful detail.
If you want more insight about the connection between lyme and alzheimer's see the work of Alan MacDonald.
Back with a link in a minute. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- I think there can be many different causes & influences of Alzheimer�s disease.
However, borrelia certainly seems to be a prime suspect. The work of Dr. Alan MacDonald in this area has been brilliant.
HULU - Under Our Skin links to film and trailers. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Web Search:
What can an MRI show? -
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lpkayak
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posted
keeb---my neurol was very clear about my mri not showing alzeimers or tumor...but there were many white matter changes. i'm not saying he was right or that i like him...his answer to why it coldnt be lyme was cuz i couldnt have lyme cuz i had had so many abx already
but he did seem very clear about the alzeimers...
its so hard when the docs dont agree...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
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posted
i just did the search"what can an mri show" and it didnt mention lyme anywhere. it also didnt mention cholesterol blockages which is what my neurol is saying mine is...since he is so sure it isnt lyme
it also says you can dx ms with one...but as i said b4 my pcp said you needed 3 tests for that...mri, spinal tap and one more-forget whaat
theres so much info out there and no oway to know what is true-anyone can say anything now
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
I was told by my llmd that mine were due to the lyme but a neuro at lahey said it was from high blood pressure.
My primary doesn't believe it's from high blood pressure nor does my cardiologist.
I don't know if high blood pressure can cause scarring but I didn't have high blood pressure till way after I was diagnosed.
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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