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Need Help: Lyme Diagnostic Questions (save me from a biopsy)
Hi I was hoping to get some input from Lyme patients, or anyone who may know about the diagnostic side of Lyme. I have been drastically sick for six months, with lyme-like symtoms, I have a 38mm white matter lesion on my MRI and oligoclonal bands in my spinal fluid. I test negative for lyme (Elisa and Western Blot), but my mom is convinced I have it and doctors have other ideas (MS, Lymphoma, etc). My treatment plan and pending biopsy will be based on what I decide about lyme, and I just don't have enough information to decide whether or not I should pull Lyme off the table.
I have a few questions that I can't find answers to. Any input would be greatly appreciated and might help me make the right decision here.
My questions are:
1. What are the MRI characteristics of lyme lesions? From my research, it seems that they are similar to a demyelination, and are usually small, T2 hyperintense white matter lesions. Does anyone have anything to add to that? Has anyone ever heard of a large lyme lesion? Mine is 38mm, which I assume could potentially rule out lyme, but I can't find anything online about lyme lesion sizes or MRI studies.
2. Do lyme lesions show up on CT? Mine do not.
3. I know that oligoclonal bands can show up in the CSF for lyme patients, but do Oligoclonal bands also show up in the blood? I have O-bands in my CSF, but not in my blood.
4. Do lyme lesions enhance/glow with MRI contrast? If so, how long do they usually enhance for? (mine has been enhancing for almost six months)
5. Does anyone know if a biospy would definitively prove or disprove lyme?
6. If someone has neuroborreliosis (neuro lyme) with white matter lesions, what are the chances that lyme wouldn't show up on a spinal tap? (my tap was clean for lyme, but i hear that CSF rarely produces a positive lyme test)
7. Are there any other diagnostic tests that would differentiate between Lyme, MS, and Lymphoma? (in the absence of a positive Elisa or Western Blot, etc?)
We ran the lyme tests in september, november, and again in March. The final ones were sent to Igenex. All negative.
Any input on even one of these questions would be great. If someone has lyme with brain lesions, I would love to hear about the diagnostics that were done, and if you don't mind sharing, the results.
Thanks in advance for any help!
Mandy
I have a few questions that I can't find answers to. Any input would be greatly appreciated and might help me make the right decision here.
My questions are:
1. What are the MRI characteristics of lyme lesions? From my research, it seems that they are similar to a demyelination, and are usually small, T2 hyperintense white matter lesions. Does anyone have anything to add to that? Has anyone ever heard of a large lyme lesion? Mine is 38mm, which I assume could potentially rule out lyme, but I can't find anything online about lyme lesion sizes or MRI studies.
2. Do lyme lesions show up on CT? Mine do not.
3. I know that oligoclonal bands can show up in the CSF for lyme patients, but do Oligoclonal bands also show up in the blood? I have O-bands in my CSF, but not in my blood.
4. Do lyme lesions enhance/glow with MRI contrast? If so, how long do they usually enhance for? (mine has been enhancing for almost six months)
5. Does anyone know if a biospy would definitively prove or disprove lyme?
6. If someone has neuroborreliosis (neuro lyme) with white matter lesions, what are the chances that lyme wouldn't show up on a spinal tap? (my tap was clean for lyme, but i hear that CSF rarely produces a positive lyme test)
7. Are there any other diagnostic tests that would differentiate between Lyme, MS, and Lymphoma? (in the absence of a positive Elisa or Western Blot, etc?)
We ran the lyme tests in september, november, and again in March. The final ones were sent to Igenex. All negative.
Any input on even one of these questions would be great. If someone has lyme with brain lesions, I would love to hear about the diagnostics that were done, and if you don't mind sharing, the results.
Thanks in advance for any help!
Mandy
Mandy, You said above:
"Also, I know its stupid, but I am really scared that my amazing neurologist will check out when he hears I am still chasing lyme."
1 -- it's NOT stupid! It is a real possibility, and I would be scared too.
2 -- I learned to be very selective in what I told nonLLMDs, because they would think I was nuts and some would not want to treat me for fear of being implicated in committing malpractice. This is a very real fear for docs, so I understand it. What I do not understand is how pigheaded they can be about considering that maybe not everything in the universe is already known about Lyme and other ailments. I mean, ... REALLY!!!
So ... tho I am NOT a believer in concealing things from a doc, you might want to not mention Lyme to your neurologist/neurosurgeon. Here's how I would approach it: Just walk down the path with them till you have a diagnosis, and on the side, keep seeing your LLMD, working both sides of the street till you get some answers.
I would confide in my LLMD about what the neuros are up to, without hesitation, but not tell the neuros about the LLMD. Then when you have enough data to decide what to do, run it by the LLMD, and then if you feel compelled to do so, run it past the neuros, but you might want to conceal his/her identity from the neuros, just to protect the LLMD. Sounds sneaky and conspiratorial, but there it is.
I had a couple of docs who did not want to treat me anymore when they knew I was seeing an LLMD. It happens.
"Also, I know its stupid, but I am really scared that my amazing neurologist will check out when he hears I am still chasing lyme."
1 -- it's NOT stupid! It is a real possibility, and I would be scared too.
2 -- I learned to be very selective in what I told nonLLMDs, because they would think I was nuts and some would not want to treat me for fear of being implicated in committing malpractice. This is a very real fear for docs, so I understand it. What I do not understand is how pigheaded they can be about considering that maybe not everything in the universe is already known about Lyme and other ailments. I mean, ... REALLY!!!
So ... tho I am NOT a believer in concealing things from a doc, you might want to not mention Lyme to your neurologist/neurosurgeon. Here's how I would approach it: Just walk down the path with them till you have a diagnosis, and on the side, keep seeing your LLMD, working both sides of the street till you get some answers.
I would confide in my LLMD about what the neuros are up to, without hesitation, but not tell the neuros about the LLMD. Then when you have enough data to decide what to do, run it by the LLMD, and then if you feel compelled to do so, run it past the neuros, but you might want to conceal his/her identity from the neuros, just to protect the LLMD. Sounds sneaky and conspiratorial, but there it is.
I had a couple of docs who did not want to treat me anymore when they knew I was seeing an LLMD. It happens.
Try this link. (The paragraph is in my previous post.) The part about tumefactive lesions is down in the diagnosis section. I found it using 'Find on this Page'
http://www.ajnr.org/content/30/6/1079.full
What is significant to me is that the first article link I posted says that this type of lesion nearly always responds with IV steroids. Not only did you not improve, you got worse. I am just a lay person, but after my own experience getting worse on steroids, I would go for the culture test and wait till those results come in before a biopsy. You need a doctor to authorize the test (advanced-lab.com) and they'll only send the blood draw kit to a doctor. You don't need to convince your neuro that you have Lyme, you only need to convince him that you want this to either confirm or exclude Lyme before undergoing a risky brain biopsy. Show him the article at the above link and that might help convince him to authorize the culture.
I totally understand your appreciation of this doctor. I really connected with my first neuro, but he just didn't know what to do after I tested negative twice (CSF and blood). But you are also right that if you do have Lyme, you won't be going to him for treatment.
I can be very opinionated sometimes, so please take all of this as my own suggestions from my own experience. You are doing a great job of thinking things through, asking questions, and looking for clarity!
Please keep us posted!
http://www.ajnr.org/content/30/6/1079.full
What is significant to me is that the first article link I posted says that this type of lesion nearly always responds with IV steroids. Not only did you not improve, you got worse. I am just a lay person, but after my own experience getting worse on steroids, I would go for the culture test and wait till those results come in before a biopsy. You need a doctor to authorize the test (advanced-lab.com) and they'll only send the blood draw kit to a doctor. You don't need to convince your neuro that you have Lyme, you only need to convince him that you want this to either confirm or exclude Lyme before undergoing a risky brain biopsy. Show him the article at the above link and that might help convince him to authorize the culture.
I totally understand your appreciation of this doctor. I really connected with my first neuro, but he just didn't know what to do after I tested negative twice (CSF and blood). But you are also right that if you do have Lyme, you won't be going to him for treatment.
I can be very opinionated sometimes, so please take all of this as my own suggestions from my own experience. You are doing a great job of thinking things through, asking questions, and looking for clarity!
Please keep us posted!
Jacki, thank you for finding the info of that guy from AZ! I will message him and see if he found an LLMD and where. That is very helpful!
As for the urgency...i won't know until my neurologist talks to the neurosurgeon and reviews my MRI from today. I have the final say, so I can slow it down...the only problem is that if it happens to be a lymphoma or something more sinister than MS or lyme, I really need to be on treatment. I need to be on treatment either way, but its tricky since we dont know what we are treating. Also, I know its stupid, but I am really scared that my amazing neurologist will check out when he hears I am still chasing lyme. If I was confident this was the answer, I wouldn't care. I mean my health is of course WAY more important than whatever any doctor thinks. But if its not lyme....I am chasing away my best ally. I don't know why this has to be so polarized and political, its frustrating because patients suffer as a result.
Rico--thanks a million for this link and the one you sent me by PM. Yes, I have heard of tumefactive MS, in fact, it is my current "working diagnosis." I have not, however, heard of the tumefactive lyme, and I have been searching all over for it! I pulled up the link you shared and found a couple lyme articles, but I don't think I'm looking in the right spot to find the tumefactive lyme lesion info. Could you tell me what you click on once you enter tumefactive as a search keyword?
Thank you guys for helping me!
And by the way, the meeting with the neurosurgeon was great today. Very informative, I should say. He reiterated that this is a terrible spot on the brain for a biopsy and that we need to proceed with all possible caution. He agrees that we may be approaching the point where it is critical to know what we are dealing with, and a biopsy may be our best move. But he and my neurologist are going to discuss.
I don't have official results on my MRI today, but it is definitely still enhancing strongly. I can't believe it. Walking into month seven of enhancement! Crazy. I'll look up some more of this lyme stuff, including the ILADS list of symptoms, etc. I do have so many lyme-like symptoms. I just wish there was a clear answer. But then, I bet everyone does!
Thanks for all the help, guys! Have a great night!
Mandy
As for the urgency...i won't know until my neurologist talks to the neurosurgeon and reviews my MRI from today. I have the final say, so I can slow it down...the only problem is that if it happens to be a lymphoma or something more sinister than MS or lyme, I really need to be on treatment. I need to be on treatment either way, but its tricky since we dont know what we are treating. Also, I know its stupid, but I am really scared that my amazing neurologist will check out when he hears I am still chasing lyme. If I was confident this was the answer, I wouldn't care. I mean my health is of course WAY more important than whatever any doctor thinks. But if its not lyme....I am chasing away my best ally. I don't know why this has to be so polarized and political, its frustrating because patients suffer as a result.
Rico--thanks a million for this link and the one you sent me by PM. Yes, I have heard of tumefactive MS, in fact, it is my current "working diagnosis." I have not, however, heard of the tumefactive lyme, and I have been searching all over for it! I pulled up the link you shared and found a couple lyme articles, but I don't think I'm looking in the right spot to find the tumefactive lyme lesion info. Could you tell me what you click on once you enter tumefactive as a search keyword?
Thank you guys for helping me!
And by the way, the meeting with the neurosurgeon was great today. Very informative, I should say. He reiterated that this is a terrible spot on the brain for a biopsy and that we need to proceed with all possible caution. He agrees that we may be approaching the point where it is critical to know what we are dealing with, and a biopsy may be our best move. But he and my neurologist are going to discuss.
I don't have official results on my MRI today, but it is definitely still enhancing strongly. I can't believe it. Walking into month seven of enhancement! Crazy. I'll look up some more of this lyme stuff, including the ILADS list of symptoms, etc. I do have so many lyme-like symptoms. I just wish there was a clear answer. But then, I bet everyone does!
Thanks for all the help, guys! Have a great night!
Mandy
It seems I couldn't copy a paragraph from a website using my iPad, but I can with a good old fashion desktop and mouse!
On this page, I found the following paragraph in an article in the American Journal of Neuroradiology
=======================
http://www.ajnr.org/content/30/6/1079.full
Encephalomyelitis is a very rare complication of borreliosis, with a few reports of progressive and severe courses of the disease.47–51 In most cases of encephalomyelitis, MR imaging is very helpful in assessing the presence of rare tumefactive white matter lesions that may mimic a neoplastic process.47,48,51 Tumefactive lesion biopsies are characterized by microgliosis and spirochetes morphologically compatible with B burgdorferi yet paradoxically without an inflammatory infiltrate.48,52–54 Very rarely, MR imaging has documented reversal of LNB encephalitis subsequent to antibiotic management.49,55 The imaging resolution, however, lagged years behind the rapid clinical response to intravenous antibiotics.
=====================
While Tumefactive Demyelinating Lesions are rare, it looks like the primary causes are MS and acute disseminated encephalomyelitis (inflammation of the brain). Lyme Disease is a possibility because it can cause encephalomyelitis.
On this page, I found the following paragraph in an article in the American Journal of Neuroradiology
=======================
http://www.ajnr.org/content/30/6/1079.full
Encephalomyelitis is a very rare complication of borreliosis, with a few reports of progressive and severe courses of the disease.47–51 In most cases of encephalomyelitis, MR imaging is very helpful in assessing the presence of rare tumefactive white matter lesions that may mimic a neoplastic process.47,48,51 Tumefactive lesion biopsies are characterized by microgliosis and spirochetes morphologically compatible with B burgdorferi yet paradoxically without an inflammatory infiltrate.48,52–54 Very rarely, MR imaging has documented reversal of LNB encephalitis subsequent to antibiotic management.49,55 The imaging resolution, however, lagged years behind the rapid clinical response to intravenous antibiotics.
=====================
While Tumefactive Demyelinating Lesions are rare, it looks like the primary causes are MS and acute disseminated encephalomyelitis (inflammation of the brain). Lyme Disease is a possibility because it can cause encephalomyelitis.
How urgent is the recommendation for the biopsy? If it's not urgent, I'd be inclined (speaking for myself) to consult a Lyme doc and rule out Lyme. But that's just me, and you know far more about your situation than I.
Wishing you the best --
Wishing you the best --
I had another question...has your doctor eliminated Lupus, Sjogren's, and Sarcoid yet? I am assuming so given that he's now recommending a biopsy.
I found a paper that might be helpful for you. It even shows other MRis that look somewhat like yours. Has your neuro mentioned a Tumefactive Demyelinating Lesion? This paper explains why such a lesion creates a diagnostic dilemma and why a biopsy is the next step.
http://www.ajronline.org/content/182/1/195.full
What makes you a tricky case is that you have not improved with IV steroids as is expected with this condition.
I hope you get answers soon!
I found a paper that might be helpful for you. It even shows other MRis that look somewhat like yours. Has your neuro mentioned a Tumefactive Demyelinating Lesion? This paper explains why such a lesion creates a diagnostic dilemma and why a biopsy is the next step.
http://www.ajronline.org/content/182/1/195.full
What makes you a tricky case is that you have not improved with IV steroids as is expected with this condition.
I hope you get answers soon!
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