I have had Lyme for 20 years. 2 years ago I had an MRI which showed white matter lesions on my brain and was told by a duck neuro that I had MS. Had a follow up MRI and no changes last year and went to see a Lyme Literate Neurologist who told me it was not MS , but was in fact Lyme scar tissue he believed on my brain. I have just had a third follow up MRI from the same lab here in L.A, where they have not heard of Lyme really(I asked the doctor who read the MRI's and he was not familiar with Lyme really) and my report says that the white matter lesions or "individual foci" appear minimally smaller, but no other changes are noted. He says at the end of the report that "changes are seen consistent with MS". Is this just because he knows nothing about Lyme? Can Lyme lesions change as do MS lesions? I thought I remembered my Lyme Literate neurologist telling me that Lyme lesions don't change, because he thought they were just scar tissue,but that MS lesions were the ones that changed. I am very freaked out. I would be happy to be wrong. Can the Lyme lesions change? Thank you
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
Sorry I can't really help. I just wanted to let you know I have whate matter lesions also.
I had a lumber puncture to rule out MS. I was suppose to have another MRI but Iam too claustrophobic to do it.
I think if lyme goes dormant for awhile the lesions can get smaller and with treatment they can go away.
Posts: 23 | From n.y. | Registered: Nov 2007
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posted
I don't know if this is reassuring or not, but Lyme disease can definitely cause lesions. Do a pubmed search and you'll find a bunch of citations.
Multiple Sclerosis is simply someone having multiple lesions with no known cause. So you can't differentiate MS from Lyme based on the existence and/or changes in lesions.
If you have Lyme and are able to eradicate it, then you shouldn't have any additional lesions - but since MS can progress slowly it would probably take years before you could definitively rule it out.
Posts: 39 | From wdc | Registered: Aug 2007
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posted
Yes, the radiologist's answer is such just because he does not have ANY knowledge of lyme.
1. Lyme lesions can be indistinguislable from MS lesions. 2. Lyme lesions are the ones that can often improve with treatment (seems like yours might have). 3. MS, like Lyme is a clinical diagnosis and should not be diagnosed simply from the appearance of white matter lesions. 4. Like SL10 says, MS is just descriptive term. No one knows what causes it..........Could be a pathogen or combo of such.
Sounds to me like you should feel pretty good about your MRI.......no new lesions, old ones are smaller. Most important, how are your symptoms?
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
Thanks all...so much. My symptoms got better for about a year and then my two big symptoms came back, all while on abx. I have constant vertigo, some days better than others and ringing in my left ear and the twitching has gotten MUCH better. I think somehow the first duck that diagnosed me with MS sticks in my brain the most...don't know why
Posts: 298 | From los angeles | Registered: Mar 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I have a lesion on my brain. My spinal tap also had O bands and cells that could be indicative of MS. I've been dx w/Lyme clinically though by a LLMD and the Neuro is "pretty sure" it's Lyme and not MS even though she could absolutely say it was MS based on my tests.
We are repeating the MRI soon. I hope they're right about my dx. I don't know what else to do but keep up w/Lyme treatment and hope for the best and watch and wait.
Posts: 2541 | From Northeast | Registered: Jan 2008
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bettyg
Unregistered
posted
hi lalyme,
please break up your solid, block text so it can be comprehended/read by neuro lymies like majority here! big thanks; directions below....
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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posted
Just for the benefit of anyone else reading this thread....based on my husband's experience, I would caution anyone struggling with the Is it Lyme or MS? dilemma against having a spinal tap.
While his went as smoothly as possible - not even a headache - it didn't resolve anything. O-bands were present - but they can also be present in Lyme - per Dr. B at Columbia, and some old, buried indirect indications from NIH research that we found.
The practical effect was that due to the presence of O-bands (and despite a positive Lyme Test, prior dramatic response to abx treatment, and atypical MS presentation) the neuro would no longer consider any dx but MS, and reported that dx to the insurance co. before discussing it with us.
So that dx will follow my husband around for who knows how long....and could have been a major insurance coverage issue if my self-employed husband was not on my employer-sponsored insurance.
Posts: 39 | From wdc | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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lalyme - I cannot read your post at all. However, I saw the previous reply: excerpt: " . . . I would caution anyone struggling with the Is it Lyme or MS? dilemma against having a spinal tap. . . ."
AGREED.
I have read much literature by ILADS' members on the failure of spinal taps (lumbar puncture) - they just don't capture the results - very poor test.
I am out of steam and can't go hunt those down but other relevant articles below:
==================
This is all about lyme, MS - and lyme and MS. Author is a ILADS' member and a neurologist:
Oh. . . this link does not take you to the exact article. I don't have the date, but you might still be able to search there. You might find it by copying and pasting the title into a Google search. Or contact the publication's office.
It is worth it to track this down. I have in on file, but it is copyright protected.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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