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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.
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You guys are all awesome and I'm so glad you're here!!
The LLMD tested for the following:
Assay serum Iron, one of the iron came back a bit low
Assay Ferritin
Vit D, 25 Dihydroxy
Ria Assay for B-12, came back a bit low
Antibody
Anditbody, Ehrlichia
Antibody, Lyme disease
Antibody, Bartonella
Serum iron binding test
She stated one of the bands showed "something" that could be "old" Lyme but didn't say which one and I didn't ask. I'm learning I have to start asking everything!!
I don't have the lab report, so I don't know levels but am having it sent to me.
The LLMD didn't rule it out, just said it's my choice if I want to continue on antibiotics. I guess I was just hoping a LLMD would give me a bit more of whether or not she felt that whats going on. Noncommittal either way doesn't help, just her honest opinion would suffice. Yeah, I know some of them are very cautious and with good reason.
To me, and I am so not a high maintenance patient, I swear....lol, she just seems uninterested and cold.
I emailed my MRI results to her< the LLMD, on Wed, since my reg MD isn't getting back to me and she called yesterday and said she'd take a look and let me tomorrow, which would be today.
I know I'm not the only patient for these docs and there's a lot of people sicker than me but really??? A week and a half to get someone to discuss my MRI results with me is a bit much!! So anyway, I set up an appt with my reg MD for today and will discuss what he thinks. I'm assuming if he thought it was all good the nurse would have just called to tell me that...
Anyway, I'm just venting....
Thanks again :)
The LLMD tested for the following:
Assay serum Iron, one of the iron came back a bit low
Assay Ferritin
Vit D, 25 Dihydroxy
Ria Assay for B-12, came back a bit low
Antibody
Anditbody, Ehrlichia
Antibody, Lyme disease
Antibody, Bartonella
Serum iron binding test
She stated one of the bands showed "something" that could be "old" Lyme but didn't say which one and I didn't ask. I'm learning I have to start asking everything!!
I don't have the lab report, so I don't know levels but am having it sent to me.
The LLMD didn't rule it out, just said it's my choice if I want to continue on antibiotics. I guess I was just hoping a LLMD would give me a bit more of whether or not she felt that whats going on. Noncommittal either way doesn't help, just her honest opinion would suffice. Yeah, I know some of them are very cautious and with good reason.
To me, and I am so not a high maintenance patient, I swear....lol, she just seems uninterested and cold.
I emailed my MRI results to her< the LLMD, on Wed, since my reg MD isn't getting back to me and she called yesterday and said she'd take a look and let me tomorrow, which would be today.
I know I'm not the only patient for these docs and there's a lot of people sicker than me but really??? A week and a half to get someone to discuss my MRI results with me is a bit much!! So anyway, I set up an appt with my reg MD for today and will discuss what he thinks. I'm assuming if he thought it was all good the nurse would have just called to tell me that...
Anyway, I'm just venting....
Thanks again :)
Sounds like you're asking good questions. I would say your "LLMD" isn't really Lyme Literate if she thinks that a negative test excludes it. Mine told me that the most likely patients to test false negative have had it for a lomg time and/or are very sick. It can mean the immune system isn't putting up much of a fight anymore.
Did she test you for coinfections? (IGenex is the best!) They can complicate the picture and some need to be treated with different abx than used for Lyme.
It does sound like you had a tick bite in Florida. The defined ring is indicative of Lyme, and the bite is often mistaken for a spider bite. Be sure to tell any doctors you see about it. It could be that you picked up a coinfection on top of a long standing Lyme infection and your immune system could no lomger keep up.
A doctor in Yale's Lyme group recently put out a map of the eastern US with concentrations of deer tick populations. It showed almost nothing in Florida, but I saw a CDC map of tick populations that showed nearly all of Florida has Ixodes ticks. The Yale doc said that any positive Lyme test results in the south should be highly suspect unless the patient had recently travelled to a Lyme endemic area. Yeah...tell that to all the people in Florida who get Lyme every year! I personally think it rises to the level of malpractice to tell doctors to ignore positive test results in a patient with symptoms. Heaven help those of us who test negative!
Re: the MRI... The "lesions" can be caused by several things and MRIs are not always useful in diagnosing Lyme. But I do believe they are significant if you have Lyme symptoms. Essentially what you see in your MRI is consistent with what LLMDs have seen in some Lyme patients..
When he saw my 20-odd small lesions, my first neurologist was really stumped. He said it sorta looked like MS, but not really. He went looking for more signs of MS, cancer, and sarcoid. I came across Lyme Disease as a possibility when I googled "MS like lesions" and found a list of known causes on an NIH web page. I didn't have the symptoms of any of the other possibilities, so I started researching Lyme and found that all of my symptoms could be explained by Lyme.
My MRI and my on line research is what convinced ME that I had Lyme. (Then I had to find a doctor who thought so, too!) The good news is that a couple of my lesions have shrunk in the last 6 months. I highly doubt they will all heal completely, but I am not worried about it. I have recovered most of my cognitive abilities and that's what really matters. The brain has a remarkable ability to work around a problem and form new connections.
I hope you find a really good ILADS doc soon! If that one band that you showed is borrelia specific, that should be enough for an LLMD to start treatment, given your symptoms.
Did she test you for coinfections? (IGenex is the best!) They can complicate the picture and some need to be treated with different abx than used for Lyme.
It does sound like you had a tick bite in Florida. The defined ring is indicative of Lyme, and the bite is often mistaken for a spider bite. Be sure to tell any doctors you see about it. It could be that you picked up a coinfection on top of a long standing Lyme infection and your immune system could no lomger keep up.
A doctor in Yale's Lyme group recently put out a map of the eastern US with concentrations of deer tick populations. It showed almost nothing in Florida, but I saw a CDC map of tick populations that showed nearly all of Florida has Ixodes ticks. The Yale doc said that any positive Lyme test results in the south should be highly suspect unless the patient had recently travelled to a Lyme endemic area. Yeah...tell that to all the people in Florida who get Lyme every year! I personally think it rises to the level of malpractice to tell doctors to ignore positive test results in a patient with symptoms. Heaven help those of us who test negative!
Re: the MRI... The "lesions" can be caused by several things and MRIs are not always useful in diagnosing Lyme. But I do believe they are significant if you have Lyme symptoms. Essentially what you see in your MRI is consistent with what LLMDs have seen in some Lyme patients..
When he saw my 20-odd small lesions, my first neurologist was really stumped. He said it sorta looked like MS, but not really. He went looking for more signs of MS, cancer, and sarcoid. I came across Lyme Disease as a possibility when I googled "MS like lesions" and found a list of known causes on an NIH web page. I didn't have the symptoms of any of the other possibilities, so I started researching Lyme and found that all of my symptoms could be explained by Lyme.
My MRI and my on line research is what convinced ME that I had Lyme. (Then I had to find a doctor who thought so, too!) The good news is that a couple of my lesions have shrunk in the last 6 months. I highly doubt they will all heal completely, but I am not worried about it. I have recovered most of my cognitive abilities and that's what really matters. The brain has a remarkable ability to work around a problem and form new connections.
I hope you find a really good ILADS doc soon! If that one band that you showed is borrelia specific, that should be enough for an LLMD to start treatment, given your symptoms.
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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!