-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I had neither. My MRI was 100% clean but it was done very early in the diagnosis process.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
My MRI read "hyperintensities in the deep white matter" as I recall...not sure the difference from lesions. This was one year prior to my diagnosis, so don't know what more is there at this point.
I also had a spinal tap which came out as "normal."
Posts: 566 | From West Coast | Registered: May 2008
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-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Alv
Unregistered
posted
My MRI was normal and I have Cronic neurolyme .
My son has white maters and he has neurolyme.
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bettyg
Unregistered
posted
my mri found an EARLY STROKE decades ago due to dried up blood they found too. or it was worded something like that.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Many of us have white matter lesions. Some (fewer) have oligoclonal banding evident in spinal fluid. These findings are consistent with lyme but often mistaken for MS. (Though of course they could be MS, too.)
If you believe you might have lyme, do not let the presence of these findings stop you from being evaluated by an LLMD. Because people with lyme CAN and DO frequently have both of these findings.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
One small ubo. It was said to old. Whatever that means. Old or new it should not be there.
Posts: 433 | From new york | Registered: Dec 2004
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posted
Mine was clean on brain - only thing that showed up was
"INFLAMATION OF THE MEDULLA".
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I actually did test CDC positive for lyme (IgeneX) while being worked up for MS. I had my first appointment w/my LLMD a few weeks ago. I just found out yesterday that my LP had one o-band and was HOPING that someone else here that had neuro lyme had these too. I really only did the LP to finally rule out MS.
posted
I have a couple of small UBOs on my MRI. Problem is, they can't really tell what they're from
Could be from lyme, migraines, B12 deficiency, early vascular disease, or a combination of any of those.
Never had a LP done.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Hi,
I had O bands too. I believe normal range was <4 and mine was 10. I also had some cells in my CSF and a lesion on my brain. My dx is still Lyme so far but they're watching me. My neuro says my symptoms sound more like Lyme than MS even though my Lyme tests are negative. I'm getting another MRI in 2 mos. to check on the lesion.
Did you have the blood test to check for O bands along w/the LP? I didn't and wish they had done it. Now I think it's too late w/out another LP and that's not going to happen!
Posts: 2541 | From Northeast | Registered: Jan 2008
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You are lucky that your neuro is following you for both. Mine just gave me the "you don't have lyme lecture" as he looked over my positive western blot.
It took them about an hour to draw the blood out of my arm after the tap. The guy wanted to give up and I told him that there was no way I was doing the LP again so he better find a vein!! I was told that they have to do both on the same day.
I soooo want my MRI to show improvement next time so I can tell my neuro "WOW, that doxycyline worked!" LOL
unless testing has changed dramaticly in the last few years
LP is about as accurate for MS as it is for Lyme
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
My husband was diagnosed with MS three years ago, though he has had symptoms for 30+ years.
He used Rebif, an injectible interferon for one year after diagnosis. It not only didn't help, but he got worse.
Then he was re-diagnosed as having secondary progressive MS instead of relapsing/remitting MS.
In the mainstream world of neurology, the only available option to consider at that time was Novantrone. Tysabri was new and under much suspicion. No thank you to either of those!
I got busy looking for other answers and treatments on the internet and found the Vanderbilt/Wheldon combined antibiotic protocol.
He has been on that protocol for almost 2 years, and sure enough, he tested positive for chronic Chlamydia pneumoniae and Mycoplasma pneumoniae infections.
Thank God he was not on Rebif any more than a year, and thank God he never took any other drug to squash his immune system.
At the time of his MS diagnosis, he was given the ELISA Lyme test, and we accepted that as gospel truth.
Around the first of this year, he had the Western Blot assay for Lyme. Yep, he's a Lymie too.
Now, he's still on the Vanderbilt/Wheldon protocol, which is also somewhat effective against Lyme, plus he's on fluconazole for the cystic form of Lyme.
The treatments are making a positive difference. but the secondary porphyria common to many chronic inflammatory illnesses is exacerbated by these treatments.
The porphyria has been going on all along, but we were in denial about that too (just like the Lyme).
In the past few weeks, we have been treating for porphyria with great success, using Questran and glucose tablets. At the worst times, we even used cimetidine (Tagamet).
All these agents have made a huge difference in my husband's condition. With the porphyria under control, he can actually experience and appreciate his improvements.
My husband's brain has lesions in the grey and white matter, even black holes.
I don't see these lesions as being indicative of MS.
I don't see MS as a disease, but as a collection of symptoms or a manifestation of underlying factors.
Those factors are chronic infections, elevated heavy metsls, gluten/casein sensitivities, other gut issues, methylaton issues, metallothionein issues, genetic vulnerabilities, etc.
So, in other words, I still say he has MS, but the MS is actually Lyme + Chlamydia pneumoniae + Mycoplasma pneumoniae + Epstein Barr virus + Cytomegalovirus + the other viruses + heavy metals + gluten/casein sensitivities, other gut issues + methylation issues + metallothionein issues + genetic vulnerabilities, and so on.
-------------------- Dallas caregiver for husband Steve who has Bb, Cpn, Mpn, EBV, CMV, other Herpes family viruses Posts: 51 | From Dallas, TX | Registered: May 2008
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posted
There is actually a new technique for O-band testing that is supposed to be @ 96% accurate.
I just meant rule it out for myself. I would feel a lot more relief if I hadn't found that one band. Even if it was negative it wouldn't have technically ruled it out because there is that other 4%.
No one can rule in MS and rule out Lyme with a test for Oligoclonal banding. Both diseases can cause O bands in the CFS just as they can both cause lesions. Oh, and both can cause pleocystosis, abnormal evoked potentials and every other diagnostic test used to dx MS--funny isn't it?
My husband has lesions/no O bands.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
I have both lessions and o-bands when I was tested in 2004 & 2005. LP also showed lyme in 1999 which was missed until Lyme dx in 2005. Tells me you can definately have o-bands with Lyme.
6 neuros all said no way is this Lyme. They just would not consider it and labeled me "Atypical MS". You would think if it's atypical they would look elsewhere. Not.
I am worse off because of it and I recommend anyone with a MS dx to check out Lyme as well as some of the other problems mentioned. Lyme is treatable (very difficult but treatable)and there is no treatment for MS where you get better.
soonermom - what is the new o-band testing? Blood or spinal fluid?
Posts: 262 | From nj | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
When will peopel and the medical community get it? MS is NOT a disease but a symptom/syndrome...An immune reaction to a pathogen.
The old saying "say a lie long enough it become a fact" comes into play. Got Lesions got MS.
If you need to see it I will send you copy of DVD of my LLMD's presentation he did at University of New Haven "Chronic Lyme Disease: Connection to MS- Facts behind the controversy"
Just PM me.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Since being on abxs NO NEW LESIONS no enhanced lesions. Just had MRI 2 weeks ago. My brain is stable...feet & body falling apart, but brain stable.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Well I am glad that I asked the question. I am really thankful for all of your responses. It is CRAZY how Lyme and MS can look so similar. I have had that "atypical MS" comment said to me as well. It is like you said, why don't they think a little harder then??
I have read that the o-banding is from inflammation and can be caused by infection as well. I just wondered how many of you actually had it.
The new technique is called "Isoelectric Focusing with Immunoblotting" or something similar. They test the serum and the CSF. If you have more bands (large groups of antibodies) in the CSF than in the serum, then they count each as an o-band.
My life has been turned upside down since October and when I got that positive Western Blot it all made sense. I just wanted to know that this o-band still fit in with lyme also.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I have several white lesions on my MRI. The second neuro I went to had me look at the pics with him.
He said it would appear that I have had small strokes...but, he said in my case it is more likely it was infection caused. How about that?! And, I hadn't gotten my positive bart results yet.
My daughter had a couple of lesions. Recent MRI showed they are gone. Her MRI is clear. I would like to get her a SPECT scan, as she is having terrible neuro issues now.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
yes to both...had 11 spinal taps over 10 years...some showed the ogoliconal bands some no...the white matter lessions..had a iv..waited 3 months and had another mri and they shrunk considerabily. I had the same type neuro.after 5 or 6 years he finaly understood lyme disease.
posted
dmc, Hi there...glad to know there's someone on this site who thinks as I do.
-------------------- Dallas caregiver for husband Steve who has Bb, Cpn, Mpn, EBV, CMV, other Herpes family viruses Posts: 51 | From Dallas, TX | Registered: May 2008
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bettyg
Unregistered
posted
8man,
the web site you showed caused this thread to go SUPER WIDE, would you please edit it to get it back to normal wideth?
please copy your LONG super wide link and use the tinyurl.com link to SHORTEN it!!
go to tinyurl.com, and then paste in the super long one.
you'll get a short one;
now go to lymenet and DELETE LONG LINK and paste the short one in there so it's NORMAL WIDTH ... not super wide like your link caused.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
My MRI (which I had done about a year ago) was clear and this was even during a time when I was not yet diagnosed and very ill. Many of my symptoms were/are neuro-lyme even.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
when I was first diagnosed with MS in 1991, my MRI showed lesions
during the course of about 8 years I had several more MRIs and it showed more lesions
by the time I found our first llmd almost 6 yrs ago my MRI's were consistant
after a year on abx my MRI showed decrease in lesions!!
however, my neuro symptoms are still part of my daily life....but i am functioning
it was the spect scan that has given us more information - vasculitis and encephalitis - someone here mentioned they were concidering a spect scan - my opinion is go for it - your money is better spent on a spect than on a MRI
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
I've got the white matter lesions and bands in the CSF. 8 months of treatment later, I'm getting a repeat MRI the day after tomorrow. I'm very confident my results will show either no change or a decrease. My symptoms (which were horrible!) are 95% gone. I have Lyme and Bartonella (of course misdiagnosed as MS... even though I had a PICTURE of the bullseye rash!). When will the medical community wake up?
Best wishes to you. I'll post my MRI results here in case anyone is interested - its always good to here success stories.
Posts: 43 | From Chicago | Registered: Mar 2008
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posted
narrowpath good luck with your MRI. I would be interested in the results. I have not had MRIs done since 2004.
Posts: 262 | From nj | Registered: Dec 2007
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posted
I had a clean MRI with the exception of a small mucus retention cyst. They thought I had MS or a brain tumor at the time. Very scary.
Posts: 183 | From Texas | Registered: Nov 2007
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