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Don't do a 2 hour MRI when you have Lyme!
So yesterday I went in for what I thought was a 2 hour stint in an MRI to scan my brain, c-spine, and t-spine. I definitely want to see if any of my numerous brain lesions have shrunk or healed. The two spinal scans are to help convince my neuro that I don't have MS. Well, nobody realized my doc had ordered "extra sequences". The techs failed to tell me this when they realized the brain scan alone was going :45 instead of the expected :20-:25. I got a quick break for a drink of water, then went back in.
At one point I asked how much longer and didn't get a response. So as soon as the machine went quiet I squeezed the escape ball. It had been exactly 2 hours and I just couldn't stand the continuous jackhammer sound and vibration anymore. They gave me the bad news that I probably had at least :45 to go. I decided to do the contrast and finish up the brain and c- spine and bail out on the t- spine. That still took another :30. Total time in the MRI - 2.5 hours!
My t-spine was clear last time, so I wasn't worried about it. I figure that if the neuro really wants to see it, I will schedule another appointment to do it again.
Thank goodness my husband was driving me home. I was dizzy, had a headache, and was exhausted. My Lyme brain was completely overloaded. Never again will I do that many in one appointment. Hopefully I only have to scan the brain again in another 6 months.
Maybe they need to put an MRI in a hyperbaric chamber for us Lymies. :)
At one point I asked how much longer and didn't get a response. So as soon as the machine went quiet I squeezed the escape ball. It had been exactly 2 hours and I just couldn't stand the continuous jackhammer sound and vibration anymore. They gave me the bad news that I probably had at least :45 to go. I decided to do the contrast and finish up the brain and c- spine and bail out on the t- spine. That still took another :30. Total time in the MRI - 2.5 hours!
My t-spine was clear last time, so I wasn't worried about it. I figure that if the neuro really wants to see it, I will schedule another appointment to do it again.
Thank goodness my husband was driving me home. I was dizzy, had a headache, and was exhausted. My Lyme brain was completely overloaded. Never again will I do that many in one appointment. Hopefully I only have to scan the brain again in another 6 months.
Maybe they need to put an MRI in a hyperbaric chamber for us Lymies. :)
I don't know for sure what I have. My first neuro who is NOT and MS specialist said" clinically probable MS". even though the radiologist said my 1.5 T MRI was fine. He wanted more MRI's in 4 months. I was off work because of dangerous symptoms as work and my company wanted me to get a 2nd opinion before I could go back to work. That 2nd Neuro also thought possible MS and referred me to one of the top MS Centers in the country. The MS specialist personally looked at my MRI and found 2 suspicious lesions and it was taken at the very beginning of my 3 months of neurological hell. He didn't personally tell me that I had MS, but my appointment notes say: "Diagnosis: MS" right in the heading. He is the one that ordered the 3T MRI's.
The thing is that none of the doctors have taken any interest at all in the fact that I have had several less intense episodes of whatever I have, that all began after I worked for 2 weeks fighting a forest fire in 2002. The last day I was there, I could barely stay awake and was so tired on my way home, about 150 miles, that I passed my turn off (out in the country but lit up like a freeway exit so very hard to miss) and had to backtrack. I have kept weird hours ever since I was a teenager but I have NEVER even come close to being that unaware while driving. I ran a fever for almost 3 months after testing negative for everything imaginable. The more research I put into this, the more I wonder if the reason I tested negative for Lyme was because it was too early, or the fact that the standard tests are so unreliable.
I am a little uncertain what to think about the fact that I got so much worse as soon as my steroid shot wore off and I quit taking the oral steroids. My sister in law, who is a Nurse Practitioner with holistic leanings, and I both think that I my symptoms should have gotten worse as soon as I STARTED taking the steroids, but I am hoping the Lyme doc will know for sure about that.
I really don't know what I have, but I do know that I am unwilling to take any IV steroids or toxic interferons for MS until I know for sure that I DON'T have Lyme's. And the fact that they admit they don't know what causes MS makes me think that there is a strong possibility that some sort of infection like Lyme's could be the catalyst in some people. I still run fevers of 99.5 to 100.5 more than half the time and no regular doctor has ever found a reason for that but it makes me think that the chance of me having some sort of long term infection is very high.
So, I am just fishing for answers at this point. But I would really like to see if there are more lesions on my MRI's at this point because if it does turn out that I have MS, I still don't plan on immediately jumping into the mainstream treatment. I plan on trying LDN first and I want to have a very clear baseline to look at down the road to help with future decisions at to medication effectiveness.
The thing is that none of the doctors have taken any interest at all in the fact that I have had several less intense episodes of whatever I have, that all began after I worked for 2 weeks fighting a forest fire in 2002. The last day I was there, I could barely stay awake and was so tired on my way home, about 150 miles, that I passed my turn off (out in the country but lit up like a freeway exit so very hard to miss) and had to backtrack. I have kept weird hours ever since I was a teenager but I have NEVER even come close to being that unaware while driving. I ran a fever for almost 3 months after testing negative for everything imaginable. The more research I put into this, the more I wonder if the reason I tested negative for Lyme was because it was too early, or the fact that the standard tests are so unreliable.
I am a little uncertain what to think about the fact that I got so much worse as soon as my steroid shot wore off and I quit taking the oral steroids. My sister in law, who is a Nurse Practitioner with holistic leanings, and I both think that I my symptoms should have gotten worse as soon as I STARTED taking the steroids, but I am hoping the Lyme doc will know for sure about that.
I really don't know what I have, but I do know that I am unwilling to take any IV steroids or toxic interferons for MS until I know for sure that I DON'T have Lyme's. And the fact that they admit they don't know what causes MS makes me think that there is a strong possibility that some sort of infection like Lyme's could be the catalyst in some people. I still run fevers of 99.5 to 100.5 more than half the time and no regular doctor has ever found a reason for that but it makes me think that the chance of me having some sort of long term infection is very high.
So, I am just fishing for answers at this point. But I would really like to see if there are more lesions on my MRI's at this point because if it does turn out that I have MS, I still don't plan on immediately jumping into the mainstream treatment. I plan on trying LDN first and I want to have a very clear baseline to look at down the road to help with future decisions at to medication effectiveness.
I made it 2 hours, and then another 1/2 hour after a break, so hopefully you'll do okay for an hour and a half. I am in an unusual situation in that I was getting worked up for MS last fall when I came to my own conclusion that I had Lyme and went out of network to an LLMD.
My PCP and my first neuro both encouraged me to follow through on my referral to an MS specialist anyway, so I am doing that. In my first appointment I told her I was diagnosed with Lyme and had started antibiotics, but I wanted her, as an expert, to tell me that I did NOT have MS. (I wanted to remove the possibility of someone challenging my Lyme diagnosis.) And so she ordered vision tests for me and follow up MRIs. I had about 20 small scattered lesions in my white matter last fall, so I look forward to seeing if any have shrunk or healed.
Do you have both?
My PCP and my first neuro both encouraged me to follow through on my referral to an MS specialist anyway, so I am doing that. In my first appointment I told her I was diagnosed with Lyme and had started antibiotics, but I wanted her, as an expert, to tell me that I did NOT have MS. (I wanted to remove the possibility of someone challenging my Lyme diagnosis.) And so she ordered vision tests for me and follow up MRIs. I had about 20 small scattered lesions in my white matter last fall, so I look forward to seeing if any have shrunk or healed.
Do you have both?
I would guess that the odds of having Lyme *and* MS are vanishingly small.
I'd see the Lyme doc first and then decide what to do. But I'm not medically trained, just have a lot of opinions.
Wishing you the best! Keep us posted.
I'd see the Lyme doc first and then decide what to do. But I'm not medically trained, just have a lot of opinions.
Wishing you the best! Keep us posted.
I hate to have to disregard what sounds like good advice, but I do have to spend at least 1 1/2 hours getting MRI's on Saturday. I am going to my first LLMD appointment tomorrow, but I will probably do the MRI's no matter what, just to have a really good baseline. I plan on dealing w/ the Lyme first and hoping that will halt or at least significantly slow the MS. Is that what you are doing as well?
If you don't laugh you cry. That doctor, I credit with saving my life though. He also had the neuro Lyme, Bartonella and was too sick to practice but if it wasnt for him calling me frEquently, I would have taken many things not good for me and could have died. He begged me to get out of SA to an LLMD that could help me. He WAS SO RIGHT.
Oh, that would be SO funny if it weren't so sad!! But I laughed anyway. < : D
I went to the ER once in TX and had my MRI results with me, showing the lesions and told the doc I had Lyme but she looks at the results and says to me, well these aren't bad, I have seen worse. I thought to myself, I have lesions on my brain, how can that not be a bad? Proving once again that regular docs have no clue especially in San Antonio, TX.
Not sure if I mentioned this joke (Lyme Brain) that a doctor I met on a TX Lyme support group told me "what is worse than having Lyme?... Having Lyme in San Antonio, TX" The point came across many times.
Not sure if I mentioned this joke (Lyme Brain) that a doctor I met on a TX Lyme support group told me "what is worse than having Lyme?... Having Lyme in San Antonio, TX" The point came across many times.
I think you hit the nail on the head. Non-LLMDs run MRIs to look for answers to neurological problems, not to look for Lyme. For some people like me, it is revealing. But for many others, it's not.
That's the weird part about it...how sick you are with Lyme doesn't seem to have much to do with whether or not you have lesions.
That's the weird part about it...how sick you are with Lyme doesn't seem to have much to do with whether or not you have lesions.
"I get the impression that MRIs are done to look for neurological issues, not specifically for Lyme."
-- Yep, I think that's right, from what I read. The default move for neuros is to do an MRI, not a SPECT scan, and since MRI is diagnostic of MS, the neuros get stuck in a loop of MRI-->MS-->MRI-->MS .... They don't look outside the loop, so there's no attempt to do a comparative diagnosis between Lyme and MS, since Lyme ain't even on the radar for a nonLLMD.
The Mayo Clinic website (apparently patient-version) says this about SPECT scans:
===============================================
The most common uses of SPECT are to help diagnose or monitor brain disorders, heart problems and bone disorders.
Brain disorders --
SPECT can be helpful in determining which parts of the brain are being affected by:
Dementia
Clogged blood vessels
Seizures
Encephalitis
Head injuries
Heart problems --
Because the radioactive tracer highlights areas of blood flow, SPECT can check for:
-- Clogged coronary arteries. If the arteries that feed the heart muscle become narrowed or clogged, the portions of the heart muscle served by these arteries can become damaged or even die.
-- Reduced pumping efficiency. SPECT can show how completely each heartbeat empties blood from the lower chambers of your heart.
Bone disorders--
Areas of bone healing or cancer progression usually light up on SPECT scans, so this type of test is being used more frequently to help diagnose hidden bone fractures. SPECT scans can also diagnose and track the progression of cancer that has spread to the bones.
================================================
None of this testing would seem useful in hunting for evidence of MS lesions, in particular the first subsection, which doesn't come close to mentioning 'lesions'.
From what I have read in the past, SPECT scans aren't useful in MS diagnosis, and MRIs aren't useful in Lyme diagnosis, except to rule out MS. If symptoms are consistent with Lyme, then it would make sense to use the test most sensitive for Lyme, hence SPECT. If a doc doesn't suspect Lyme or doesn't 'believe' in Lyme, then doing a SPECT scan probably isn't even on the menu.
My view is not that MRIs are not useful, but that they are being ordered by nonLLMDs who are working from a limited list of possible ailments, which in turn limits the testing they will order. If Lyme doesn't exist except in small areas of the country and is very very rare, then why worry about testing for it? MS on the other hand gets respect.
So I'm not saying MRIs are not useful, but that they are not as diagnostic of Lyme as SPECT scans. Minor point, but I keep seeing people popping up here focussed on their MRI results and trying to correlate them with the presence or absence of a Lyme infection, when it's not the best test for that purpose. It's like feeding me pine nuts to see if I am allergic to peanuts: a non sequitur.
-- Yep, I think that's right, from what I read. The default move for neuros is to do an MRI, not a SPECT scan, and since MRI is diagnostic of MS, the neuros get stuck in a loop of MRI-->MS-->MRI-->MS .... They don't look outside the loop, so there's no attempt to do a comparative diagnosis between Lyme and MS, since Lyme ain't even on the radar for a nonLLMD.
The Mayo Clinic website (apparently patient-version) says this about SPECT scans:
===============================================
The most common uses of SPECT are to help diagnose or monitor brain disorders, heart problems and bone disorders.
Brain disorders --
SPECT can be helpful in determining which parts of the brain are being affected by:
Dementia
Clogged blood vessels
Seizures
Encephalitis
Head injuries
Heart problems --
Because the radioactive tracer highlights areas of blood flow, SPECT can check for:
-- Clogged coronary arteries. If the arteries that feed the heart muscle become narrowed or clogged, the portions of the heart muscle served by these arteries can become damaged or even die.
-- Reduced pumping efficiency. SPECT can show how completely each heartbeat empties blood from the lower chambers of your heart.
Bone disorders--
Areas of bone healing or cancer progression usually light up on SPECT scans, so this type of test is being used more frequently to help diagnose hidden bone fractures. SPECT scans can also diagnose and track the progression of cancer that has spread to the bones.
================================================
None of this testing would seem useful in hunting for evidence of MS lesions, in particular the first subsection, which doesn't come close to mentioning 'lesions'.
From what I have read in the past, SPECT scans aren't useful in MS diagnosis, and MRIs aren't useful in Lyme diagnosis, except to rule out MS. If symptoms are consistent with Lyme, then it would make sense to use the test most sensitive for Lyme, hence SPECT. If a doc doesn't suspect Lyme or doesn't 'believe' in Lyme, then doing a SPECT scan probably isn't even on the menu.
My view is not that MRIs are not useful, but that they are being ordered by nonLLMDs who are working from a limited list of possible ailments, which in turn limits the testing they will order. If Lyme doesn't exist except in small areas of the country and is very very rare, then why worry about testing for it? MS on the other hand gets respect.
So I'm not saying MRIs are not useful, but that they are not as diagnostic of Lyme as SPECT scans. Minor point, but I keep seeing people popping up here focussed on their MRI results and trying to correlate them with the presence or absence of a Lyme infection, when it's not the best test for that purpose. It's like feeding me pine nuts to see if I am allergic to peanuts: a non sequitur.
I didn't even know what a SPECT scan was until after I was already convinced I had Lyme given my lesions and symptoms. I wish my first neuro was aware of the spect. I'll bet only Lyme Literate doctors know that it is useful in diagnosing Lyme.
My lesions are indeed called lesions (demyelinated areas) even though they are not enhanced with contrast. (The contrast shows inflammation and in an MS patient, an enhanced lesion usually shows up during a symptom attack.). Lyme does not cause lesions on the spinal chord like MS can.)
The weird thing is that it doesn't seem to matter how sick you are whether you get lesions or not. Some do, some don't. I get the impression that MRIs are done to look for neurological issues, not specifically for Lyme.
There aren't good statistics, but apparently some people's brain lesions heal either partially or completely. With as many as I have, I am hoping some of them heal. I will find out in a week how they look so far.
My lesions are indeed called lesions (demyelinated areas) even though they are not enhanced with contrast. (The contrast shows inflammation and in an MS patient, an enhanced lesion usually shows up during a symptom attack.). Lyme does not cause lesions on the spinal chord like MS can.)
The weird thing is that it doesn't seem to matter how sick you are whether you get lesions or not. Some do, some don't. I get the impression that MRIs are done to look for neurological issues, not specifically for Lyme.
There aren't good statistics, but apparently some people's brain lesions heal either partially or completely. With as many as I have, I am hoping some of them heal. I will find out in a week how they look so far.
I had the MRI because of my lesions and at the same time they did my back, I had fallen because of the lesions making me off balance, two herniated discs. I know how bad that can be and so sorry about the 2 hours. That can be awful. The scan is something new for me too.
Jackie, this is really great information, thank you for sharing! Do you by chance know if a SPECT scan will always appear this way in a lyme case?
Do you know of any other ways to differentiate between Lyme and MS, when all lyme tests from igenex are coming back negative? (i just posted a thread on this).
Thanks so much for this information!
Mandy
Do you know of any other ways to differentiate between Lyme and MS, when all lyme tests from igenex are coming back negative? (i just posted a thread on this).
Thanks so much for this information!
Mandy
columbia-lyme [dot] org / patients / ld_spinal_fluid . html
That's a link to the Columbia Lyme center webpage discussing the differences in the various brain scans that are used in Lyme and other conditions. FYI, fwiw. It doesn't talk just about Lyme, and seems to be evenhanded in its presentation....meaning it is not solely Lyme-oriented.
My Lyme doc had a SPECT scan run, not an MRI, on me prior to diagnosis. I understand that a SPECT scan shows areas of low blood flow (perfusion), which is a sign of swelling in the brain, reducing blood flow ... and this sign is something that happens in Lyme, not in MS. Different docs may see it differently, but my understanding is that MS doesn't reduce blood flow, therefore a SPECT scan that shows low blood flow indicates Lyme. .
Areas of low blood flow in the brain are not 'lesions' (which to me means a defect, a sore, or something in that realm, not just low blood flow.) Docs who think MS want MRIs because they are thinking MS, but I've not yet heard anyone here say their doc, after an MRI, then does a SPECT scan.
It seems to be two different schools of thought. fwiw
That's a link to the Columbia Lyme center webpage discussing the differences in the various brain scans that are used in Lyme and other conditions. FYI, fwiw. It doesn't talk just about Lyme, and seems to be evenhanded in its presentation....meaning it is not solely Lyme-oriented.
My Lyme doc had a SPECT scan run, not an MRI, on me prior to diagnosis. I understand that a SPECT scan shows areas of low blood flow (perfusion), which is a sign of swelling in the brain, reducing blood flow ... and this sign is something that happens in Lyme, not in MS. Different docs may see it differently, but my understanding is that MS doesn't reduce blood flow, therefore a SPECT scan that shows low blood flow indicates Lyme. .
Areas of low blood flow in the brain are not 'lesions' (which to me means a defect, a sore, or something in that realm, not just low blood flow.) Docs who think MS want MRIs because they are thinking MS, but I've not yet heard anyone here say their doc, after an MRI, then does a SPECT scan.
It seems to be two different schools of thought. fwiw
No, I haven't had a spect scan. In hindsight I wish I had just to see what it showed. It was my 20 or so brain lesions on my MRI that got my and my doctors' attention that something really serious was going on. That's when I learned that Lyme Disease can cause brain lesions, and also my other symptoms. If I hadn't learned about the lesions, I don't know how long I would have gone without a diagnosis. I shudder to think...
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