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MRI Report
My MRI report states, periventricular, juxtacortical, subcortical white matter t2 hyperintense lesions. Signal abnormality is also noted in the corpus callosum posteriurly. Differential would include ischemic, demyelinating, infectious/inflammatory causes. What does this mean? From what I'm researching this could point to MS but I've also been tested for Lyme, which came back negative and know that means nothing and have heard that Lyme can be misdiagnosed with MS.
Best Answer
Thanks Jackie!!
Yeah, I'm glad you said that because I'm not too impressed with the LLMD so far, I was hoping for at least something, not just it's up to me....so gonna think about that and yes, the current doc only did the W. blot. This is frustrating, UGH!! and I've only begun to look into it, can't even imagine what you guys have been through!!
I live in Northern NJ, tick haven, lots of woods, used to do a lot of hiking and have had horses and dogs all my life....
Yeah, I'm glad you said that because I'm not too impressed with the LLMD so far, I was hoping for at least something, not just it's up to me....so gonna think about that and yes, the current doc only did the W. blot. This is frustrating, UGH!! and I've only begun to look into it, can't even imagine what you guys have been through!!
I live in Northern NJ, tick haven, lots of woods, used to do a lot of hiking and have had horses and dogs all my life....
PS
"Also, you have gotten infected again recently with another dose of Lyme or a co-infection,"
should say:
"Also, you *COULD* have gotten infected again recently with another dose of Lyme or a co-infection,"
"Also, you have gotten infected again recently with another dose of Lyme or a co-infection,"
should say:
"Also, you *COULD* have gotten infected again recently with another dose of Lyme or a co-infection,"
Try not to freak when seeing the term 'lesions' in connection with your MRI. We just had a marathon discussion here on this site about the use of that word. It's the commonly used word to describe fuzzy areas on an MRI, but it has such an alarming tone to it that it really bugs me.
So don't get wigged out about lesions, okay? It just means, in an MRI, a fuzzy area.
Here's the deal: MRIs are not particularly diagnostic of Lyme. Lyme and MS are two completely different ailments, but most docs don't understand Lyme and keep looking at it through the lens of MS.
There is another test that Lyme docs like to use called a SPECT scan, which looks for areas of low blood flow in the brain. This is specific to Lyme, meaning it won't show up in other conditions, so using a MRI (which shows up fuzzy spots for very different diseases, without differentiating among them) is not particularly useful.
Your brief description of your LLMD's reaction didn't give me a lot of comfort. Here's one issue: when you've perhaps been infected as long as you have (15 years!), your immune system is likely no longer reacting to the presence of Lyme, and it is the reaction of your immune system that the usual Lyme tests measure. So you can still have the infection and the tests show nothing at all.
There are two possible approaches to get around this situation: (1) have PCR testing, which looks not for your immune system reaction to Lyme but instead for bits of Lyme DNA in your blood; this test is done by IGeneX, which many docs diss, but Lyme specialist know is very useful; and/or (2) have an antibiotic challenge, meaning you are given antibiotics for a brief period of time, which willl wake up your immune system to produce antibodies to the Lyme that may be present, and then re-test; after a while, your immune system just gives up making antibodies against the infection, assuming that the bacteria are all dead, which they may not be, just hiding.
If your current doc has not done either of these approaches, I quietly take copies of all your test results to a new doc for a new look. Not all Lyme docs are created the same, and it's a hotly contested area of medicine, so you gotta be suspicious. I went through 20 docs before I got a diagnosis ... or more accurately, I got a positive Lyme test, but the doc said it must be wrong and IGNORED IT!!! So that's when I went on the hunt for an LLMD, and got diagnosed.
There is no standard for what makes an LLMD: it's a state of mind, and there are some real goofballs out there.
Also, you have gotten infected again recently with another dose of Lyme or a co-infection, which can make you feel worse. There's no rule that says ticks can't bite somebody who got bitten before.
You've suffered long enough -- be aggressive! NJ is definitely Lyme country, and yet many docs still don't get the concept.
I am guessing that your current doc, in saying that the Lyme tests are negative, may not have done anything more than a Western blot, which is notoriously inaccurate. It is not supposed to be the final word.
Get copies of all your tests and keep a set for yourself. You don't have to tell your doc you are going for a second opinion; the tests are yours, you paid for them, just always keep a set of your own bec. getting them later can be difficult just bec. medical staff is lazy ... er, overworked.
Email to --
contact [at] ilads [dot] org
-- and tell them your location and they will send you LLMD names. I'm not medically trained, but I've lived through Lyme and I would definitely get a fresh look from a different doc.
Let us know how we can help -- you are clearly a strong person to have been through all you have already -- you can do this! You deserve to get the best help available. Take care --
So don't get wigged out about lesions, okay? It just means, in an MRI, a fuzzy area.
Here's the deal: MRIs are not particularly diagnostic of Lyme. Lyme and MS are two completely different ailments, but most docs don't understand Lyme and keep looking at it through the lens of MS.
There is another test that Lyme docs like to use called a SPECT scan, which looks for areas of low blood flow in the brain. This is specific to Lyme, meaning it won't show up in other conditions, so using a MRI (which shows up fuzzy spots for very different diseases, without differentiating among them) is not particularly useful.
Your brief description of your LLMD's reaction didn't give me a lot of comfort. Here's one issue: when you've perhaps been infected as long as you have (15 years!), your immune system is likely no longer reacting to the presence of Lyme, and it is the reaction of your immune system that the usual Lyme tests measure. So you can still have the infection and the tests show nothing at all.
There are two possible approaches to get around this situation: (1) have PCR testing, which looks not for your immune system reaction to Lyme but instead for bits of Lyme DNA in your blood; this test is done by IGeneX, which many docs diss, but Lyme specialist know is very useful; and/or (2) have an antibiotic challenge, meaning you are given antibiotics for a brief period of time, which willl wake up your immune system to produce antibodies to the Lyme that may be present, and then re-test; after a while, your immune system just gives up making antibodies against the infection, assuming that the bacteria are all dead, which they may not be, just hiding.
If your current doc has not done either of these approaches, I quietly take copies of all your test results to a new doc for a new look. Not all Lyme docs are created the same, and it's a hotly contested area of medicine, so you gotta be suspicious. I went through 20 docs before I got a diagnosis ... or more accurately, I got a positive Lyme test, but the doc said it must be wrong and IGNORED IT!!! So that's when I went on the hunt for an LLMD, and got diagnosed.
There is no standard for what makes an LLMD: it's a state of mind, and there are some real goofballs out there.
Also, you have gotten infected again recently with another dose of Lyme or a co-infection, which can make you feel worse. There's no rule that says ticks can't bite somebody who got bitten before.
You've suffered long enough -- be aggressive! NJ is definitely Lyme country, and yet many docs still don't get the concept.
I am guessing that your current doc, in saying that the Lyme tests are negative, may not have done anything more than a Western blot, which is notoriously inaccurate. It is not supposed to be the final word.
Get copies of all your tests and keep a set for yourself. You don't have to tell your doc you are going for a second opinion; the tests are yours, you paid for them, just always keep a set of your own bec. getting them later can be difficult just bec. medical staff is lazy ... er, overworked.
Email to --
contact [at] ilads [dot] org
-- and tell them your location and they will send you LLMD names. I'm not medically trained, but I've lived through Lyme and I would definitely get a fresh look from a different doc.
Let us know how we can help -- you are clearly a strong person to have been through all you have already -- you can do this! You deserve to get the best help available. Take care --
Wow, thank you so much for getting back to me soo quickly!!
I have so many symptoms over the years, it started about 15yrs ago, I went to a doctor due to extreme fatigue and memory loss, brain fog, couldn't remember a damn thing!!
He did the normal blood work, nothing showed up and he said I was depressed and put me on antidepressants. I remember thinking, hmmm...I'm not hopeless, sad, suicidal, just feel like crap. I've been on and off all different antidepressants over the years but weaned myself off over a year ago. One of them is used for arthritis and fybromialgia pain, since then, had back and knee issues, xrays last year showed degenerative arthritis of my spine and not much showed on the knee.
I've always been fatigued and brain fog but lately really bad, nothing has helped that and just assumed that's the way it is. I don't really go to doctors much because feel they just prescribe pills to mask things, not improve anything.
However, a few months ago started having dizzy spells on and off, then 4 weeks ago woke dizzy, not just a spell, it was constant, that I didn't want to ignore. It lasted 4 weeks, I've been on Ceftin for about 2 weeks and the dizziness it gone for the most part now.
Test so far, reg blood work, nothing's off, except for vitamin D on the low scale of average, thyroid is fine, Lyme negative, went to ENT, no issues there, he suggested MRI and neurologist. In the meantime I did find a LLMD, she did other blood work and stated everything neg except one of the bands shows slight possibility for Old Lyme but not conclusive and B12 is a bit low and it's my decision if I want to continue with treatment for Lyme. Another symptom that started this past winter, numbness of my fingers, as I'm typing my index finger is going numb but it happens on and off. Now with the MRI, my regular doctor has the results since Monday and isn't calling me, so I went to the imaging center last night and picked them up and have no idea what this means. Thanks again!!
I have so many symptoms over the years, it started about 15yrs ago, I went to a doctor due to extreme fatigue and memory loss, brain fog, couldn't remember a damn thing!!
He did the normal blood work, nothing showed up and he said I was depressed and put me on antidepressants. I remember thinking, hmmm...I'm not hopeless, sad, suicidal, just feel like crap. I've been on and off all different antidepressants over the years but weaned myself off over a year ago. One of them is used for arthritis and fybromialgia pain, since then, had back and knee issues, xrays last year showed degenerative arthritis of my spine and not much showed on the knee.
I've always been fatigued and brain fog but lately really bad, nothing has helped that and just assumed that's the way it is. I don't really go to doctors much because feel they just prescribe pills to mask things, not improve anything.
However, a few months ago started having dizzy spells on and off, then 4 weeks ago woke dizzy, not just a spell, it was constant, that I didn't want to ignore. It lasted 4 weeks, I've been on Ceftin for about 2 weeks and the dizziness it gone for the most part now.
Test so far, reg blood work, nothing's off, except for vitamin D on the low scale of average, thyroid is fine, Lyme negative, went to ENT, no issues there, he suggested MRI and neurologist. In the meantime I did find a LLMD, she did other blood work and stated everything neg except one of the bands shows slight possibility for Old Lyme but not conclusive and B12 is a bit low and it's my decision if I want to continue with treatment for Lyme. Another symptom that started this past winter, numbness of my fingers, as I'm typing my index finger is going numb but it happens on and off. Now with the MRI, my regular doctor has the results since Monday and isn't calling me, so I went to the imaging center last night and picked them up and have no idea what this means. Thanks again!!
The part about 'differential [diagnosis] would include ... ' means that those are the possibilities that could explain the cause of your symptoms.
Like ... a differential diagnosis for a painful foot would include shoes too tight, a blister, a pebble in your shoe. It isn't an answer, it's a list of possible answers based on the test results.
I agree with your statement about a negative Lyme test not being the final answer. Are you seeing a Lyme specialist?
Like ... a differential diagnosis for a painful foot would include shoes too tight, a blister, a pebble in your shoe. It isn't an answer, it's a list of possible answers based on the test results.
I agree with your statement about a negative Lyme test not being the final answer. Are you seeing a Lyme specialist?
"Differential would include ischemic, demyelinating, infectious/inflammatory causes"
I can explain this part...
Ischemic means the lesions are caused by restricted blood flow - this occurs in lyme, don't know about MS
demyelinating - if positive, that means MS, if negative, that means not MS bus possibly lyme
infectious/inflamamtory - the only infections that can get in your brain and potentially cause lesions are lyme, syphillis, streptococcus, and some viruses ( but the viruses cause acute encephalitis as far as I know, so you would really know about them).
As far as the stuff about lesions goes, it is just telling you which parts of the brain they are in. Lyme disease can go to any part of the brain. It loves going to the corpus callosum in children, among other places, but I don't know if the same applies in adults.
Sorry that's not a perfect explanation, but that's all I know on this.
Do you want to give a full symptoms list? We could probably give you more info and suggestions that way.
I can explain this part...
Ischemic means the lesions are caused by restricted blood flow - this occurs in lyme, don't know about MS
demyelinating - if positive, that means MS, if negative, that means not MS bus possibly lyme
infectious/inflamamtory - the only infections that can get in your brain and potentially cause lesions are lyme, syphillis, streptococcus, and some viruses ( but the viruses cause acute encephalitis as far as I know, so you would really know about them).
As far as the stuff about lesions goes, it is just telling you which parts of the brain they are in. Lyme disease can go to any part of the brain. It loves going to the corpus callosum in children, among other places, but I don't know if the same applies in adults.
Sorry that's not a perfect explanation, but that's all I know on this.
Do you want to give a full symptoms list? We could probably give you more info and suggestions that way.
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I definitely think you should follow Jackie's advice in pursuing the lyme diagnosis. Don't abandon that possibility until you are totally sure it really is negative. I agree with the others that any rash with a ring sounds lyme-like.
I also think you need a good ILADS doctor to guide you through a test for bartonella. Bartonella has the same symptoms as lyme, but usually causes worse brain symptoms. Plenty of ticks carry bart but not lyme. Some strains of bart cannot be lab tested so you may need a good doc to sift through symptoms and give you an antibiotic trial.
Another condition that fits all your symptoms and brain lesions is vitamin B12 deficiency. It is amazing how useless most doctor are at diagnosing it. Most people are ill for years before getting a diagnosis. The blood test may say lowish when really you are atrociously deficient.
There are various genetic polymorphisms that mean people cannot convert inactive B12 (as absorbed from food) into, and between, the various activated forms. That means you could have B12 shots and still not get better.
If you are taking oral B12, it will most probably not get into your blood stream.
I can suggest a doctor who frequents another forum and who is really helpful at explaing all this (which I am not!), he is called Richvank and if you send him a PM on this forum
http://forums.****.me/index.php
I am sure he will make some suggestions about tests you may want to ask for. I am called Athene on that forum, you can tell him I sent you!